Veronica Decker

July 11, 2010

2010-07-17T10:57:00.000-07:00

Dear Family and Friends,

It has been many months since I’ve written and so many life changing issues have transpired. As you know, we sold our home in Michigan. In March, we purchased and moved into a new one in Florida, said good-bye to our many, many friends and said hello to a few new ones here in Florida.

We feel very blessed to be here and to be a part of Florida Hospital. David heads the cancer program and is initiating new programs and creating the vision to enhance their state-of-the-art cancer program. I’m working at Florida Hospital in a department that looks at quality and safety. Much of this I have learned through my previous work in oversight of a hospital research program. Developing new programs is something I learned through my work in administrating a cancer program.

Once again I’m getting up early in the morning with enthusiasm and a passion for what I do. I wake at 5:25am, exercise using the Wii for 30 minutes (no basements in Florida to hold the treadmill), eat, dress and I’m off to begin work on such things as decreasing hospital infections, efficiencies in transporting a patient from one part of the campus to another and seeking new ways to provide a safe environment for both our patients and our employees. It probably isn’t a surprise to many of you that quality and safety in the hospital setting is becoming a national imperative.

Cancer Time: It’s time again to think about my cancer. I am the type of person that can easily put it out of my mind. I don’t worry about it because I truly don’t think about it. I was diagnosed over a year ago, completed surgery, radiation, and chemotherapy. In August and September of 2009, I started my bi-annual infusion of Zometa, a drug that keeps my bones strong. In addition to Zometa, I take an aromatase inhibitor (AI) daily to eliminate any remaining estrogen in my body. I have no trouble taking my AI because I religiously take the pill with breakfast – a meal I haven’t missed in years.

Here is how AI works:

When no estrogen is present, estrogen receptors remain inactive. However, when estrogen receptors are exposed to estrogen they trigger a chain of events that can cause tumor cell growth and multiplication. Zometa is a form of hormone therapy known as an aromatase inhibitor. It works by reducing the amount of estrogen produced in the bodies of postmenopausal women. Surgery, radiation and chemotherapy are used to remove hormone receptor-positive early breast cancer cells from the body. Even if a woman has undergone one or all three forms of treatment (which I did), a small number of breast cancer cells may remain which is why the AI is necessary.

Since I completed my radiation a year ago June, I’ve had one mammogram. You may recall I wrote about this and how a false positive mammogram led to another biopsy – which was not cancer. That was January 2010. Now, here I am again, prepared for the next follow-up scan. This time I’m to have another magnetic resonance imaging (MRI) scan of my breast. I need that because my original breast cancer was not seen on a mammogram (even after the radiologist knew it was there). Not everyone needs an MRI for follow-up of their breast cancer. Last time I had an MRI it was to help determine that there were no other signs of cancer in my breast besides the one lump.

I won’t go into the details again but please recall I mentioned how the staff appeared to leave the room for an eternity and I actually thought they left to go have lunch! I’m sure they didn’t but this time I hope they talk to me during the scan. It worries me to be alone in a machine such as a MRI.

What the images will reveal (taken from internet source):

I met with a cancer specialist here at Florida Hospital to provide my bi-annual breast exam, order the follow-up scans and the Zometa infusion. Zometa is very easy to get and takes about 20 minutes via an infusion. I need to go to an infusion center at Florida Hospital. I’m hoping to get into one that specializes in cancer patients, routinely administers chemotherapy and hopefully staffs with nurses certified in oncology. Am I asking for much? I’ll keep you posted.

Emotionally – As I mentioned previously, I don’t think about it my cancer. I’m a woman of purpose (meaning I feel necessary and have something to offer) with my family and my new job. The children frequently visit and I stop everything I’m doing to be with them. Perhaps I wouldn’t have done that had I not gone through a life-threatening experience like cancer. I’m not sure. I definitely don’t race through life any longer. I allow myself to be in the moment.

That doesn’t mean I’m not frustrated at times and wish to get ‘on with it’ – so to speak. It took me a long time after the cancer treatment to feel energetic again. That was extremely frustrating. I’m still not at my former weight or stamina however having a routine of early morning exercise, eating well and being of purpose guides me through the day so I’m not so quick to look to tomorrow as I once was.

I know, because I’ve counseled many, some people respond to their cancer diagnosis and treatment by becoming more spiritual. I think I have always been spiritual so I don’t believe it pushed me further along that trajectory however I talk about it more now. I’m so thankful to be at a hospital where I can openly talk about my spirituality and that of others. Can you imagine an environment where you are not shunned for saying to a patient – would you like for me to pray with you? I would have so appreciated that when I was going in for my breast biopsy or having that last MRI.

Finally, I can practice nursing like I was taught at the College of St. Teresa. Man (people) is bio (biological), psycho (psychological or emotions), social (family and community) and spiritual. You know that is how I’ve always practiced nursing and being here is full circle for me. I can now practice nursing in the manner in which I was originally educated and trained.

I’ll write again after my MRI. Thoughts and prayers are with you.

Love,

Veronica

February 27, 2010

2010-02-27T07:42:00.000-08:00

Dear Family and Friends,

As many of you know, David has accepted a position at Florida Hospitals and will start mid-March. We have been in a whirlwind of activities selling our home of 20+ years, buying a new home, packing and putting closure to our life here in Michigan. Most difficult for both of us has been saying good-bye to our friends (a broad term that includes our patients, co-workers, the ladies that have cleaned our home over the past 15 years, etc. Just on and on with ties to people that have been so much a part of our lives here).

Yesterday, David had his last day at Cancer Care Associates. He couldn’t sleep last night as he felt all the emotion of someone that has placed his heart and soul into building a program over the past 19 years. We will both miss our Cancer Care Associates life. The staff are remarkable people that believe the mission as much as we do.

Today we pack everything we plan to take from the garage attic and pitch and/or donate the rest. Most everything is down from the attic and spread out on the floor of the garage so that we can open boxes we haven’t looked through in years. David is now willing to give up his medical school books and note cards and I’ve decided that the 22 year old high chair can finally go to someone else. It’s amazing to us what we’re finding in the attic.

Our new home is smaller than our home here in Michigan because it has no basement. This is our fourth home in our married life (now 34 years) and we’ve never owned a home that didn’t have a basement. What do people do with all their stuff? Where do you put the skis, the turkey roaster, the old coffee machine that still works but you can’t make yourself part with? I’m still trying to wrap my head around a house without a basement and the storage issues that will result from a lifetime of being able to store.

What about my career? I’m looking for something at Florida Hospitals too. I’m open to new opportunities but persnickety – does that make sense? I find myself looking forward to the Christian environment that seems to shroud Florida Hospitals. I appreciated the difference in hospital surroundings when working at St. Mary’s Hospital at the Mayo Clinic for my nursing training in the 70’s. Then, it was okay to sit bedside with a patient and pray with them. I’d like to find myself in that kind of setting once again. For the short term, I’m happy that I won’t begin a new position until we are settled in our new place. I need to “feather our new nest” and make this house a home.

Many of you have asked about our children and how they will handle our relocation out of Michigan. First, it is important to remember that our adult children have had trouble building careers here in Michigan and have slowly left the state with no plans to return in the near future. When David was offered the position in Florida, one of the things we talked about was the opportunity it might present to have our children and grandchildren geographically closer. We hope that happens over the next few years.

Last thought today – I keep going over in my mind the phrase “when one door closes, another one opens.” I think that sums things up pretty well for us. Our life here in Michigan is coming to an end however our new life in Florida is just beginning with opportunities and adventures we would have missed out on had we not taken the chance and stepped through that open door.

Our new home in Florida has a beautiful lanai overlooking a peaceful back yard. That’s my image now as I disassemble our home from basement to attic.

Thoughts and prayers are with you.

Love,
Veronica

January 27, 2010

2010-01-31T06:24:00.000-08:00

Dear Family and Friends,

Results of the core needle biopsy – NEGATIVE. All is fine. I had to wait a day before the results were back and during that time I thought about what I would do if I had more cancer. How would I react? Every possible scenario went through my head. Now that I have the results, those thoughts still linger. I’ve had trouble falling asleep and I’m waking at 4am.

I do have a special understanding now for those women that opted for the bi-lateral mastectomy versus lumpectomy. Sometimes we don’t get the choice for the lumpectomy and when we do part of the decision needs to include how the follow-up will be handled. Am I going to worry every time I have a mammogram and a calcium deposit looks suspicious?

NOTE TO SELF: Follow-up and Survivorship Issue

• Tests beget tests

~ Most of my friends with a history of cancer always say they prefer to be tested to rule out recurrence but I’m not that way. I don’t want to stick my head in the sand but frankly one false positive test and whew…………..my breast is insulted yet again with 22 X-rays (yes, I said 22), a needle and a tremendous amount of compression...and perhaps harm to some good cells? Who knows?

I have no answer. All I can say is that I’ll follow the National Comprehensive Cancer Network (NCCN) guidelines and try not to drive myself crazy when ‘something’ shows up!

Thoughts and prayers are with you.

Love,

Veronica

January 26, 2010

2010-01-31T06:15:00.000-08:00

Dear Family and Friends,

As mentioned a couple of days ago, I had my first post-cancer treatment mammogram. Unfortunately, the radiologist discovered some new calcifications in the same breast so the mammogram was followed by a core needle biopsy. It’s my first core needle biopsy and probably like most cancer survivors, I find myself asking…do I have to experience every type of diagnostic test and cancer treatment known to man? Here’s what I learned about core needle biopsies.

• No preparation is needed. Eat, don’t eat – makes no difference. They do advise not taking aspirin or aspirin like products such as fish oil or Vitamin E for a couple of days prior to the procedure (to prevent excess bleeding) but other than that there is nothing to do in preparation for this procedure.

• The core needle biopsy places a woman on a thin metal table (metal so that the x-ray’s don’t penetrate). There is a hole (literally) in the table so that one breast can hang.

• The technician positions the breast for the radiologist to view the suspicious area (clusters of calcium deposits in my case). Positioning the breast took about 40 minutes. It was more than uncomfortable and a couple of times I actually gasped from the pain. I kept thinking that perhaps I should have taken the Valium when they offered it earlier.

• The facility was fine. I have no complaints. There was jazz music playing the entire time and everyone was kind.

Now I’m in the wait and see period following my first post-treatment mammogram and I’m wondering had I opted for the double mastectomy versus lumpectomy if I could have saved myself this additional grief? Also, is this what it’s going to be like every time I have a mammogram? Wait and see? Oh – I hate that.

I followed up the mammogram with a bone density test and should get the results shortly for this as well.

I’ll keep you posted.

Thoughts and prayers are with you.

Love,

Veronica

January 24, 2010

2010-01-31T06:10:00.000-08:00

Dear Family and Friends,

Again – I wait too long to compose an entry for the blog and then have so much on my mind I want to share.

In terms of my ‘cancer’ – I’m now considered a survivor. I’ll soon approach the one year anniversary from my diagnosis. Follow-up for me means that I have a mammogram (every six to 12 months for the next 3 years) and a bone density scan for my Osteopenia / Osteoporosis (every 3 years) on Monday. This will be my first mammogram since surgery and I will confess that I’m more concerned about a false positive result than anything else.

I have the nagging worry in the back of my mind that I could have more cancer but my rational side repeats the statistical odds over and over to quiet that part of the worry. However, the false positive fear lingers and then I start thinking that something else will pop up requiring further testing.

I’m actually hoping for an improved bone density scan. The last one was done several years ago and it showed that my Osteopenia had improved everywhere except my wrists (you may recall my wrist fracture in June 2009). I don’t exercise as vigorously as I did a year ago but I take more Vitamin D and calcium plus I do passive resistance work using my wrists so I’m hopeful that there will be improvement.

Probably the most important information I want to share is that David and I are moving to Florida. I’ve written before how difficult the Michigan economy is for the private practice medical oncologist. The state is burdening physicians with additional taxes, the third party payers (insurance) are reimbursing less for the care provided and the hospitals in Michigan are struggling too so they have fewer initiatives to help. In addition, our kids are leaving the state because they can’t find jobs here.

David was offered a wonderful position with Florida Hospitals in Orlando. I was particularly struck by the hospital's religious base– something that we both appreciated when we met in 1975 at St. Mary’s Hospital in Rochester Minnesota (a Mayo Clinic Hospital). David talked about recently walking into the hospital entrance and seeing a picture of surgeons leaning over a patient and Jesus over the surgeons guiding their work. I want us to work at a hospital like that again. I want God to be a part of everyday work-life not something that is hush-hush and fearful of offending hospital administration. David’s position will be to enhance their cancer program – much like what he’s done over the past decade. I just sent them my own curriculum vitae (resume) and I’m hopeful I can find something within the same hospital system too.

That’s our update. I’ll write more when I get the results of my mammogram and bone density scan.

Thoughts and prayers are with you and your family.

Love,
Veronica

January 12, 2010

2010-01-31T05:37:00.000-08:00

Dear Family and Friends,

All is going fine here. My hair continues to grow and I can tell my strength continues to return. It has been seven months now since chemotherapy treatments ended and four months since my last radiation treatment.

I want to talk about the milestone coming up in the next week. I am scheduled to have my first post treatment mammogram and bone density test than once the results are back, I will see Dr. Benitez (my breast surgeon) to go over the mammogram results and start the process of lifelong monitoring.

In regard to the annual mammogram, I’m just not too interested in it. As you may recall, my breast cancer was not discovered on a mammogram and even when they knew it was cancer, they still couldn’t detect the tumor on the mammogram. However, I’m knowledgeable enough to know though that just because it wasn’t caught on a mammogram the first time, doesn’t mean another tumor wouldn’t be caught another time.

The bone density test is a repeat of one I had a couple of years ago when they discovered I had Osteopenia (bone loss). Apparently, 40% of all adult women have Osteopenia and 7% have Osteoporosis. In addition to the history of Osteopenia, I began an aromatase inhibitor in September (2009) which stops the production of estrogen in post-menopausal women. Aromatase inhibitors work by blocking the enzyme aromatase which turns another enzyme, androgen, into small amounts of estrogen in the body. Aromatase inhibitors can cause bone loss (osteoporosis).

Cancer patients with symptoms of bone pain sometimes have bone scans to look for cancer that may have gone to the bone; e.g. breast cancer; prostate cancer; etc. A bone scan is different than a bone density scan. A bone density scan, or DEXA, uses a low amount of radiation (less than a chest X-ray) to measure your bone mineral (BMD) and predict the chance of fracture. The test takes about 20 minutes and the results are returned within a week. The DEXA scan results will come in the form of two scores:

* T-score: The T-score is the difference between my bone density and the bone density of young, healthy women. A score above -1 is considered normal. A score between -1 and -2.5 is classified as Osteopenia and a score below -2.5 is classified as osteoporosis. The score is used to estimate my risk of breaking a bone.
~ Results of scan in 7/2008: My T-score range was in the level for Osteopenia in my back and hip however it was in the osteoporosis level in my wrist. Oops – remember the wrist fracture while on a cruise to celebrate the end of chemotherapy in June 2009?

What have I been doing to help strengthen my bones?

* I walk two miles a day on a treadmill and lift weights (I started passive resistance training for my wrists late last summer).

* Zometa: In the past I took Boniva (ibandronate sodium) monthly for a couple of years. Boniva is the medication advertised on TV showing Sally Fields playing with her grandchildren. I didn’t like Boniva because I didn’t like having to get up early to take the pill and then waiting to eat breakfast. Plus it was monthly and I sometimes forgot to take it. Lastly, my insurance didn’t allow me to buy more than one month supply so I had to make monthly trips to the pharmacy and I had a co-payment each time.

I switched to Reclast (zoledronic acid). Reclast is given once annually as an infusion. I had the nurses at our office give it to me (nothing like experienced chemotherapy infusion nurses administering non-chemo medications painlessly). Now, as a breast cancer survivor, I’m taking Zometa (zoledronic acid). Reclast and Zometa are the same, both are zoledronic acid however the difference is that Reclast is FDA approved for the treatment of osteoporosis and Zometa for prevention and treatment of bone loss in cancer patients. Reclast is given once a year at a slightly higher level than Zometa and the latter can be given on a monthly basis or once every six months. I get Zometa every six months.

* Vitamin D

* Good nutrition (lots of vegetables and fruits).

~ I’m still trying to get my weight back to what it was before surgery in February 2009. You may recall that I gained nearly 10 pounds. I still have about 3 or 4 to lose.

* Multivitamin

I’ll update you once the results of my tests are in.

Thoughts and prayers are with you.

Love,
Veronica

December 19, 2009

2010-01-02T10:35:00.000-08:00

Dear Family and Friends,

I’m relaxing in Minnesota as I await the annual Blaha Christmas Party at Janet and John’s home in Minnetonka. Life is pretty much back to normal for me thus no time for blogging. I’m not entirely back to the level of exercise intensity I was at prior to my diagnosis however I am able to stay involved in family activities until 10 or 11pm and wake easily at 5:30am. It feels good to be ‘normal’ again.

At the office, we just completed an eight-session group program for people who are struggling with Stage IV cancer. I’ve participated in many groups with cancer patients. Most often it is with newly diagnosed cancer patients however this time I wanted to structure a program with people that have lost all naivety about their cancer diagnosis, treatment and survivorship. I may write more about this program later but for today, I want to share some of the comments made by the participants.

THEME: Am I going to survive this cancer?

• One women with breast cancer that has spread to the brain, bone and the liver shared a story about how she hesitates to go to her dentist because her internal dialog questions “why bother getting my teeth fixed when it’s likely I won’t be here long enough for anyone to see them?”

• Another woman with colon cancer that has spread shared how when she was really sick she found herself coming to the conclusion that it was okay to die. Once she started to feel better however, she says she got greedy – and wanted more time.

THEME: Can we talk about funerals here?

• How do I get a coffin for my wake when I’m planning on being cremated?

THEME: Talking with adult children about advanced cancer

• It’s okay for children (even adult children) to believe that you’re going to survive cancer, even when you think you’re not.

This group was a phenomenal experience for me and truly a privilege to be a part of with these unique women. I’ll write more on this later.

Merry Christmas.

Love,

Veronica

November 22, 2009

2009-11-24T04:50:00.000-08:00

Dear Family and Friends,

It’s been a long time since I last posted an entry however that’s a good thing ~ I’m doing well. We’ve traveled, lectured and I’ve had the privilege of meeting with many people to discuss how to manage their cancer diagnosis and treatment.

I’m finally feeling well enough to schedule the usual body maintenance visits we all need to do annually like the dermatologist, ophthalmologist, etc. When I went to the dermatologist yesterday, I told him I felt I had aged from the chemotherapy and asked if he could help. An hour later every “aging spot” was zapped and I had four Botox (Dysport) treatments to my forehead. I left looking scabbed but feeling energized and alive. He also gave me a prescription for Latisse to get my eye lashes and eye brows back.

I’ve been exercising most days but still not the three-miles in 30 minutes that I was able to do back in January before my diagnosis and subsequent treatment. I can manage maybe two miles in 30 minutes. It’s so discouraging to me. Getting back to my normal, physical routine is just much harder than I expected.

I’ve been coloring my hair now for a couple of months however yesterday was the first day I actually had it trimmed. Not the top – just the sides. My last chemotherapy was in May, so that means a first hair cut in 5 ½ months. Linda also foiled my hair with blond highlights. Wow. I feel so “me”!!!!!!!!!!!!!

Thanksgiving is coming and the kids started to arrive yesterday. Anne is here from Macomb, Illinois. Marc and Dima will arrive on Monday from Iowa. I miss being the mother of youngsters but I thoroughly enjoy being the mother of young adults. It’s hard to put into words what exactly that means. I know they laugh at me (literally) when I can’t figure out an electronic gadget or my continuous struggles to set up the Wii. Yet, when they let me in their lives, I feel like we are just as connected as when they were younger and living with us. I do miss that.

I could go on and on about the Michigan economy and how it is affecting us at Cancer Care Associates. I know I’ve spoken about this in a previous entry. In short, it’s terrible. There is no way we can continue to provide the same quality care with the additional taxes the state just passed.

Enough about our problems – it’s time to be thankful for what we have.

Have a blessed Thanksgiving.

Love,
Veronica

Surviving Cancer

2009-10-24T07:40:00.000-07:00

Dear Family and Friends,

All is going fine with me in my first few months as a ‘breast cancer survivor’. As you know I’ve completed all my treatments and I’m taking an Aromatase Inhibitor (daily pill). Here are some thoughts on the residual from each of the treatments:

Surgery: Lumpectomy and axillary sentinel node surgery. I was fortunate that I only needed surgery once (February 2009) because the margin from cancer tumor to normal tissue was large enough to indicate that the entire tumor was removed in the first and only breast surgery. I can honestly say that I have little noticeable scarring. There is one small scar about an inch long under my arm and an even smaller scar on my breast. For follow-up, I’ll see my breast surgeon in late January after I have a mammogram.

Chemotherapy: Four cycles of Taxotere and Cytoxan given every three weeks (last chemotherapy was at the end of May 2009). My blood counts are back to normal, however I feel the fatigue that continues to linger as a result of the chemotherapy. I have no signs of the needle marks on my left hand or forearm. My hair is about a 1/2 inch long all over and just as thick as it was before I lost it. People who don’t know me just assume that I have cut my hair very short. I don’t notice anyone looking at me with sympathy anymore so I truly believe that they just think this short hair cut is my "look." My medical oncologists continue to include all of the doctors at CCA and Cyndi Kresge (physician’s assistant). I will see one of them in December to review my Vit D level (see below). As I mentioned above, I started an Aromatase Inhibitor (AI) a couple of months ago. These are the anti-estrogen pills I take to eliminate as much estrogen as possible. I have few side effects from the AI. I do vacillate between hot and cold, so I wear layers of clothing and adjust as necessary. My face sometimes flushes which is embarrassing and bothersome but I don’t perspire.

Radiation: My skin still looks a little tan. I have no scars from the radiation despite how badly it appeared to be burned at the end of treatment. I also have a lumpy area where the tumor was removed and the booster portion of the radiation was given. I asked my radiation oncologist, Dr. Jannifer Stromberg, about it and she said it was normal. It would be impossible to detect a lump at this point because it feels lumpy. Just of note, I never used cream or moisturizer on the burned breast. The radiation technicians nearly put the fear of God in you that if you put something on it, they would be unable to give you the radiation treatments. Considering that it looks pretty normal now maybe that was the right decision. I have no pain in my breast and no itching (which was the first indicator of cancer).

Bone Health: I’m sure I talked about this in the past, however I’ll share it again. At least five years ago I had a Dexa-scan to assess my bone health. Dexa-scan is a commonly used test for measuring bone mineral density. Unfortunately, it indicated that I had osteopenia which is pre-osteoporosis. I started on Beneva, the oral pills that Sally Field advertises, taken monthly. I did that for a couple of years and then switched to Reclast. Reclast is a similar medication to Beneva but it is given as an infusion. I liked this much better than the monthly pill because I only needed to take a 20 minute infusion once a year. My last Dexa-scan indicated that everything improved with only a little osteopenia remaining in my wrists. Now that I’m on an Aromatase Inhibitor, I need to take another version of Reclast called Zometa. I took my first Zometa last month (it’s a 20 minute infusion) and I will repeat this every six months for three years or longer. I had no noticeable side effects from the Zometa. Just an added note, exercise helps to improve bone density too so I do resistence training for my wrist in addition to walking/jogging most days.

Vitamin D: More and more is being written on Vitamin D not only for its positive effects on bone health but also how it is related to breast cancer. The bottom line is that we just don’t know enough about vitamins, minerals and supplements. At CCA, we wrote a one-page information sheet on Vitamin D and its importance. I had my Vitamin D level tested last year and my score was 45mcg. Just this month, I had it retested and it was 33mcg. What’s going on? I know I didn’t go out in the sun much when I was in treatment and I often missed my vitamins and extra calcium and Vit D pills but that doesn't fully explain why mine plummeted. Much is being debated about what is a normal ‘level’ of Vitamin D. Our local hospital thinks anything above a 20mcg is ‘normal’. However, the newest research indicates 50-70mcg is ‘normal’ and beneficial. I’m going to err on the side of caution and aim for a higher level so I’m now taking a higher dose of Vitamin D3 and will have it retested in December.

Vitamins and Supplements: I’ve been really surprised when I speak with our cancer patients at how many are taking vitamins and supplements. Most only have a vague idea of what they're really taking and how many of the high dosed vitamins and supplements can interfere with their prescribed medications and chemotherapy. I hope you, family and friends, are mindful of that. Just this week I had a patient on a vitamin supplement that interferes with Coumadin. This is dangerous! What I take is safe and necessary for me – you need to determine what will work for you. I take a multi-vitamin from Shaklee called Shaklee Vitalizer Gold, available here http://reichenberger.myshaklee.com/us/en/welcome.html. I also take calcium, Vitamin D3, and CO-Q10.

All in all, surviving breast cancer is a long term commitment and one that doesn’t cease just because I’m done with surgery, chemotherapy and radiation. The emotional aspect is real – the uncertainty of the future lingers and returning to normal life is more difficult than I anticipated. Don’t underestimate the impact of this life-threatening illness on your psyche.

Love,

Veronica

Vitamin D: Bone Protector and More

2009-10-16T07:34:00.000-07:00

Vitamin D: Information for Patients

BONE PROTECTION: Vitamin D plays an important role in protecting your bones. Your body requires Vitamin D to absorb calcium. When people do not get enough Vitamin D, they can experience bone loss. Studies show that people with low levels of Vitamin D do in fact have lower bone density or bone mass and are more likely to break bones as they age. Some cancer treatments deplete bone density, including treatments for patients with breast cancer, prostate cancer and multiple myeloma.

CANCER: The earliest modern connection to cancer and Vitamin D occurred in the 1930’s when scientists noticed that people who spent years in the sun (and subsequently developed a relatively benign form of skin cancer called squamous cell skin cancer) were less likely to develop deadly internal cancers, such as colon, breast or prostate cancers¹. Researchers are now studying the use of Vitamin D in the prevention and treatment of breast and prostate cancers¹.

WHAT IS VITAMIN D? Vitamin D is made in the skin when 7-dehydrocholesterol reacts with UVB ultraviolet light. These wavelengths are present in sunlight when the UV index is at a high level. The UV index is high or high enough to provide Vitamin D during spring and summer seasons in temperate regions (like Michigan), year round in tropical regions and almost never in the arctic regions. Only 10-15 minutes of high UV sun exposure two to three times per week is needed for most people to maintain adequate Vitamin D levels.

CAN YOU CHECK A VITAMIN D LEVEL? Yes, Vitamin D levels can be checked at either of the Cancer Care Associates labs or another certified lab. The blood test does not require fasting and usually takes two to five days for results to be returned. Currently, the optimal level of serum 25-dihydroxyvitamin D is 30-100 ng/mL however there is new research indicating that guidelines may change in the near future proposing higher levels (some indication they are moving toward 50-100 ng/ML)^2,3

WHAT TO DO IF YOUR VITAMIN D IS LOW: At CCA, we suggest you to speak with your doctor about the appropriate Vitamin D dosage needed to increase and maintain your Vitamin D level.

HOW TO MAINTAIN VITAMIN D:

At CCA, we encourage 10-15 minutes daily of sun exposure during the spring and summer months (early or late in the day to prevent sunburn). Remember that any glass windows or sunblock with an SPF above 15 will block the UVB rays necessary for Vitamin D conversion. Also, it is not safe to rely on tanning beds as a primary source of Vitamin D because their lamps are usually calibrated to favor UVA rays not the URB rays that stimulate Vitamin D production⁴.
A diet rich in Vitamin D including fish such as salmon, mackerel, and tuna as well as milk, eggs, beef and Swiss cheese may also be helpful in maintaining an acceptable Vitamin D level.
During the sunny seasons in Michigan coupled with a diet rich in Vitamin D we recommend that only moderate Vitamin D supplementation is necessary. However, during Michigan’s long winter months or if you are unable to get outside during the sunny seasons, a Vitamin D₃ supplement of 1000-2000 IUs daily is recommended⁵.

References

Survivorship Services

2009-09-24T08:27:00.000-07:00

Dear Family and Friends,

I’ve had several requests over the past few months to offer a group program for people with an advanced cancer diagnosis. On the whole, I’m very cautious of group programs because I feel it is difficult to meet the needs of 8 or 10 people all together compared to my usual one-on-one time with individual therapy.

The group will be held at noon on Tuesdays in a conference room at our Royal Oak location. If you are interested or know of a friend that might benefit from an 8-week program for people that may be struggling with with an advanced cancer diagnosis – call me. You can also find more information about the program at my website here.

Thoughts and prayers to you.

Love,

Veronica

Update

2009-09-21T11:59:00.000-07:00

Dear Family and Friends,

Just a note to provide feedback on what has been happening the past couple weeks.

Aromatase Inhibitor (AI): I started an AI about a month ago. These are pills taken on a daily basis designed to block the synthesis of estrogen. Some cancers respond to estrogen. Lowering the estrogen level in post-menopausal women with an AI has proven to be effective in treating breast cancer. I haven’t noticed any side effects although perhaps I’m ‘stiffer’ than normal when I go from a sitting to standing position and start walking after being sedentary for a while. I think this really started when I stopped taking estrogen once the breast cancer was diagnosed. I’ll be on an AI for at least five years possibly switching to Tamoxifen after a couple of years.

Zometa: (zoledronic acid). This is an injection that is infused in our chemotherapy suite. Essentially this is the same as the Reclast that I’ve been taking for my osteopenia the past couple years. Rather than take Reclast on a yearly basis, I’ll be taking Zometa twice a year to help fight the abnormal cells that cause bone to wear away. The infusion takes about 30 minutes and I haven't had any side effects from the Zometa so far.

Broken Wrist: My wrist is totally healed and Dr. Pochrin said I could return to all of my normal activities. I’m building up the strength in my wrist by doing the passive resistant exercises Rosa provided months ago.

Post Cancer Doctor Visits: I met with my breast surgeon, Pam Benitez, a couple of weeks ago for my first ‘follow-up visit’. All is fine and I don’t need to see her again until the first of the year when I have a scheduled mammogram. Also, I continue to see the oncologists here at the office on a regular basis (every three to six months).

Normal health visits like screening for colon cancer through a colonoscopy seem like a burden now that I feel like I’m still in the process of healing but I need to schedule those as well.

Book Signing Event: The book signing event at Barnes and Noble in Royal Oak went well. One could say it was ‘International’ because Martha from Windsor, Ontario attended. Martha is a breast cancer survivor who reads my blog. Thanks to everyone for attending and being a part of the day.

What else is going on?

Hair Re-Growth: I liken the rate of hair growth to watching a pot of water come to a boil – it’s taking a long, long time. Basically I can say that it took me about three months to grow enough hair to go without a wig or a cap. My eye lashes are slowly returning too (you may recall that my eye lashes fell out eight weeks after chemo).

Weight: My weight is down because I’m on a ‘diet’. Good nutrition but far less volume of food. My weight just wasn’t going down with all my good intentions. Even if I didn’t weigh myself daily (which I do) I could tell the diet was working because I’m wearing a skirt that didn’t fit just last week. Recently, I met with a patient who said my husband told her that I gained weight with chemotherapy. She was surprised to learn that as many as 40% of the women with breast cancer on chemotherapy gain weight.

Breast following radiation: I finished my last radiation treatment mid-August (so it's been about a month since my last treatment). The burned skin has healed and I have a little tan line. I still avoid a hot tub but on the whole I’m back to normal with no pain or sensitivity.

More later.

Prayers and thoughts are with you.

Love,

Veronica

Health & Leisure article

2009-09-21T10:45:00.000-07:00

Health & Leisure Magazine has a featured article on me, my cancer experience, and my book, Coping with Cancer.

Go here to read the article and you can also view the magazine at http://www.blogger.com/www.healthandleisure.com for other health related articles relevant to our Michigan community.

Treatment costs

2009-09-21T08:20:00.000-07:00

Dear Family and Friends,

Just received the statement for my radiation therapy. These are charges and not necessarily what the hospital collects however, no matter how you look at it, health care is expensive!

TOTAL CHARGES $120,232

Thoughts and prayers are with you.

Love,

Veronica

2009-09-16T02:59:00.000-07:00

Book Signing Event

Coping with Cancer: A Patient Pocketbook

Please join me on Saturday, September 19, 2009 at 2:00 until 3:15 p.m. in the Barnes & Noble Booksellers at 500 Main Street in Royal Oak.

Copies of my book will be available for purchase at the store. Linger over coffee and meet me afterwards for a brief discussion from 3:15 until 3:30 p.m.

Those currently going through treament as well as those who have traversed this road will find that we already have something in common.

I would be pleased to meet you.

Veronica

Labor Day

2009-09-12T08:25:00.000-07:00

Dear Family and Friends,

It is Labor Day 2009. Fall season and college football kickoff is in full swing! We have season tickets to Michigan State University (MSU) home football games again this year and yesterday saw the first home game of the season.

Why MSU? No reason in particular ~ we aren’t graduates of MSU although David and I have both worked for the university in the past. We have not always been college football fans however we have seen our excitement grow over the years and find ourselves enjoying the game and the football camaraderie with our friends Pam Benitez and John Molidor.

Yesterday, as we drove the nearly 90 miles from our home to the MSU campus, I reflected back and recalled how last year during football season my left breast was itchy and at the time I had considered mentioning it to Pam (Pam is a specialist in breast cancer surgery and did my breast surgery last winter). That’s the first I remember having that funny weird sensation in my breast and I could have so easily mentioned it – after all we were together game after game throughout the entire season. Why didn’t I mention it?

Would she have sent me for an ultrasound in September of 2008 instead of January of 2009 when I realized that there was a problem? Could the tumor have been discovered earlier and therefore possibly smaller in size mitigating the need for chemotherapy?

These days I’m thinking about a lot of ‘what if’s’ that I have absolutely no answers for. How often do we rationalize health concerns and not listen to our internal dialog?

I’ll just leave you with my rambling thoughts for the day.

Prayers and thoughts are with you.

Love,
Veronica

2009-08-29T06:20:00.000-07:00

Dear Family and Friends,

Busy week as I keep expecting (hoping) to somehow accomplish as much as I did prior to my diagnosis and treatment. Although it has been three months since I completed chemotherapy and two weeks since radiation ended, I still do not feel 100%. I tire quickly, by mid-afternoon I have little stamina to multi-task and evenings find me once again napping on my favorite chair in front of the family room television. What I’m doing in an attempt to increase my energy level these days includes planning ahead so I am certain to have nutritious food and snacks throughout the day, taking vitamins, exercising 30 minutes most mornings and continuing to discover my purpose. As the authors of “Repacking Your Bags: Lighten Your Load for the Rest of your Life” demonstrate, “Often it takes a crisis for people to discover (or rediscover) their purpose.” I think it’s safe to say that we’ve been through a crisis in 2009 – one that we’ve emerged from a little bruised but not beaten by a long shot. Bruises heal and living a life of purpose has become very important to me as I go through these days. I’ve written about that in the previous two posts that you can read here and here.

David and I met with one of my oncologists this week for a follow-up visit. He commented on the fact that many women experience depression after chemotherapy and radiation. I am well aware that the post-chemotherapy and radiation period can be a whole new adjustment phase as the patient moves toward “survivorship.” Looking back, however, it all seems to have happened so quickly (granted when you’re in throes of it all, time crawls)! The oncologist asked how I was doing and I replied, “I’m still sick.” What I really wanted to say is, “You don’t understand. This isn’t me. Certainly not the “me” I remember pre-cancer!” Prior to the cancer diagnosis I had lots of energy. I slept less than any of our children. I was up every morning very early and done jogging by 6am only to work 10-12 hours days followed by evening activities. I’m asking myself now, “Is this ‘depression’ sapping my energy on a daily basis or is what I’m experiencing just ‘normal’ post-treatment fatigue?’

Certainly if depression is indeed the culprit here, there are most assuredly many things that could contribute to a depressed state (not the least of which is the diagnosis and subsequent treatment). I am depressed about several things including the threat to our health care options. Let’s look at this realistically. I’m 57 years old. Would the new proposed health care system value me at this age enough to allow $20,000 in chemotherapy treatments, an additional $15,000 for an unexpected three-day hospitalization and yet another $65,000 for 33 days of radiation (this is a guess because I haven’t received a hint of a bill for the radiation yet)? Had I been diagnosed with this cancer a few years down the road under a new health program would the powers that be tell me that I had to have a mastectomy with no option for a lumpectomy with radiation? Yeah – I’m depressed about what’s threatening to control my health care options and that of all women who follow behind me after receiving a diagnosis as I did. Statistics show one in eight will experience a diagnosis of breast cancer. Will they have the same options that I had – the option to make a choice – or will their options be mandated for them? I recently read some commentary on “ObamaCare” and the solution was, “Don’t get sick.”

How about work – am I depressed about that? I’m a nurse practitioner and administrator at a demanding oncology office caring for cancer patients and finding it difficult to contemplate keeping our doors open should the existing health care system continue to cut our reimbursements. I am well aware that there have been some “bad” oncologists out there – I know them, you know them. All they’re interested in is the return on their own personal investment and not on providing quality care for cancer victims. They’ve been scamming the system for years and I am all for the government stepping in and putting a stop to their unethical behavior but please don’t punish the rest of us for the few scammers. On the other hand, does the governor of Michigan fully understand that the latest tax initiatives she’s implementing means that cancer offices like ours would be paying Michigan tax on our chemotherapy medications (the life line for cancer patients… like me…like her if she’s unfortunate enough to be among the one in eight statistic)? That little tax initiative alone can and more than likely will close most oncology offices. So, yeah at times I’m depressed about work.

Home – no, I’m not depressed at all with my life at home. Our kids are healthy, caring and productive young adults who still seem to enjoy being with us. My husband never ceases to amaze me as he maintains his positive attitude regardless of the never ending struggles to provide optimum health care in Michigan.

Despite all this, I’m still considering the real reason behind my continued fatigue. I’ve come to the conclusion that it must take the body weeks and even months to heal. This phase I’m going through now is my body healing – healing from the cancer, the chemicals and the constant assault from external forces on internal problems. I’ve concluded that I must stop pushing myself to get through it and assume I’ll know when it’s over. As they say, “This too shall pass.”

Anyway, it’s now morning – a time when I have the greatest amount of energy so I’m paying bills, doing the laundry and reading about Aromatase Inhibitors (I just started mine a week ago).

Prayers and thoughts are with you.

Love,

Veronica

2009-08-25T07:14:00.000-07:00

Dear Family and Friends,

What is catching my attention lately are the numerous articles on being considerate and kind not only to the patients we care for but as well as to each other. In addition to current articles, Dr. Bernie Siegal and others wrote about this in the 70’s & 80’s as well. Bernie would tell fellow physicians to “knock before entering a patient’s room” and to “address a patient by their family name” (although difficult these days when we try to maintain patient privacy issues in a waiting room or public chemotherapy suite and still comply with HIPAA guidelines).

Personally, I try to maintain my own habit of civility which I view as contributing to my being of moral fiber but I realize I am human. That said, I came up short here at the office yesterday and I find myself disappointed in me with what is more than likely perceived as lack of kindness or consideration to others. I see myself as a kind person (probably if we were honest we all see ourselves as kind – the reality though isn’t how we view ourselves but how others see us and therein lies the potential sting), until I realize that I am being otherwise. As Chuck Swindoll says, “No one is so important that he or she is above kindness. That aspect of leadership takes courage and confidence.” Courageous leadership demonstrated daily whether you’re a busy physician that doesn’t barge right into an exam room or an administrator or the President of the United States. I need to continue to examine my own daily behavior and make course corrections now and then.

Last week one of our doctors shared a story with us at a board meeting. This physician was concerned because a patient was so angry that it took three weeks to be started on an oral chemotherapy. Upon hearing of the delay, the doctor marched right up to the nurse that appeared to have been the cause of the delay. The nurse proceeded to share the full story of how the patient could have had a $450 a month out-of-pocket expense for the chemotherapy pills. The delay was caused by the behind the scenes ‘work’ necessary to get coverage so the patient had zero expense. Our office was able to offer this to our patient through the diligent work of our Patient Financial Assistant (most oncology offices don’t have a full time staff member assigned to help patients get coverage – we’re pleased to add this service to the list of other unique services we offer those who come our way).

Was that patient a little too quick to place blame? More than likely the anger on the patient’s part arose out of fear and trepidation with a scary diagnosis and an unknown future not to mention if you view chemotherapy as your lifeline any delay will fill you with angst. Definitely justified and probably avoidable with a simple explanation and feedback throughout the period of time it took to procure the benefit of no out-of-pocket expense. Always room to improve and this was a good lesson in viewing something that makes sense to us through the eyes of someone who finds it senseless.

Aren’t we all just a little too quick to react negatively? Shouldn’t we put ourselves in the other’s shoes and view the situation from their perspective? We talk about how we are in the information technology era (knowledge is POWER) however are we still missing some basic manners and behavior that is guided by dignity, civility, and humility. I know I need a regular reminder.

Thoughts and prayers to you.

Love,

Veronica

2009-08-23T18:31:00.000-07:00

Dear Family and Friends,

I’m reflecting today on a video I recently had the privilege of watching. It is of a young lady in Vancouver who had terminal cancer (she was 37 years old and had been vigilantly fighting cancer for four years - unfortunately she did succumb to it in early July this year). In March of 2009, Rachel was to speak to a group of 40 women at her church. She ended up speaking to over 600 in a venue that could accommodate that many attendees. Rachel said, "Cancer does not define me. Neither does being a wife or a mother. All these things are part of who I am but they do not define me. What defines me is my relationship... with Jesus." She makes four points in the talk: Know God. Know Yourself. Know the Gospel. Know your Purpose. You can spend 55 minutes and watch it here if you're interested or go here to read the written transcript.

A friend read my last blog entry and commented that this video reminded her of my own message. I’m not sharing this video with you because I think I too am dying from this cancer today. I don’t. I share this with you because I believe our messages are very similar. My message and that of the video is: know yourself ~ know your purpose. Rachel, however, was also able to voice the meaning of God in her life and the importance of reading and studying the Bible.

There is little I can add to this heart-wrenching story. Nor can I possibly add to this message other than to share it with you and to say how I’ve learned throughout my 57 years the importance of serving others and doing so with joy.

Thoughts and prayers are with you.

Love,

Veronica

2009-08-15T07:02:00.000-07:00

Dear Family and Friends,

I’m writing this entry from Minnesota. Most of you already know that I was born and raised in the Hopkins/Minnetonka area. I’ve returned for the first time since my diagnosis to visit family and arrived in Minneapolis via Northwest / Delta early Friday evening. The flight itself was very pleasant and uneventful.

I had a window seat and was able to spend nearly two hours reading a book I’ve been looking forward to reading for several weeks. I wanted to take some time this morning to capture my thoughts while they are still fresh in my mind, so pardon if this entry comes across as if I’m not quite able to verbalize what’s rattling around in my head.

Recently the Wall Street Journal published an article on an experimental group therapy program out of Memorial Sloan-Kettering Cancer Center in New York. The 8-week program, known as meaning-centered psychotherapy, helps patients with Stage 3 or 4 cancers overcome their biggest challenge which the psychiatrist who developed the programs says is to live in the space between their diagnosis and eventual death. The theory behind this therapy is based on the work of Viktor Frankl, an Austrian psychiatrist, who survived Auschwitz and lived to write about his experiences. Dr. Frankl’s conclusion, after surviving Auschwitz and losing several family members including his wife, was that even in the most painful and dehumanized situations, life has potential meaning and therefore even suffering is meaningful.

This article immediately caught my attention because this type of therapy is so similar to the type of ‘treatment’ I practice with my own patients and one we discussed in our book, “ Coping with Cancer.” In our book we ask the reader to think through and if possible “journal” the following:

“What do I believe to be my life mission?”
“Why do I value these activities?”
“What are my most important daily purposes? Why?”
“What do I need in order to continue or begin to accomplish my activities?”
“Can I realistically continue to meet these daily activities?”
“If I could change one thing about my life before my illness, what would it be? Why?”
“If I could change one thing about my life after my acute illness, what would it be?”

As I rested in my chair last night with the soothing background of white noise around me, I read again Viktor Frankl’s book, “ Man’s Search for Meaning.” He knew of suffering certainly at a level far beyond my own experience but similar to some of you who are in the midst of struggling with an invasive cancer or caring for a family member who just can’t seem to get a break from one bad scan or test after another.

The book said to me – keep talking to patients about their meaning in life in their day to day events. I can’t tell you how often in my work I connect with a young patient who struggles with “mothering” as she traverses treatment after treatment. Some of these young women continue trying to balance work and mothering and are challenged with what has to give as they add cancer treatments to their list of “things to do”. I simply advise each of them that they now need to be the mother they want to be and ask each what does that look like for them. There is so much more I could write on this but not today. I want to write about being with my family for the first time since I too started down the cancer path.

I was greeted at the Minneapolis airport by my sister, Janet, who immediately drove me to meet more family at the hotel. Janet, a sister that is always there for me – believing in me, helping me through the years and now my unending supporter. My family of five sisters and a brother, my mother, nieces, nephews and more haven’t seen me since my breast cancer diagnosis. I look terrible with my short, short hair, no eye lashes, pale skin and my 10-pound weight gain (although now closer to 5 pounds since I started the calorie counter on-line program).

A moment in time struck me as the most heart-wrenching last night when my eldest sister, Barbara, said, “Ronnie, I can’t believe you had to go through this cancer. I don’t understand it. Why? It doesn’t make sense to me. I sometimes just cry about it.”

So, all this time there I was in Michigan living the daily experience of learning about my diagnosis, surgery, going through chemotherapy and its aftermath, walking that long walk into the radiation treatment day after day for 33 days, only to learn that I didn’t cry alone. My sister cried too. Nothing could have been said this weekend that has impacted me in such a way and that meant more to me than mere words can articulate. I will remember it forever.

More time with my family today and then back to Michigan tomorrow.

Thoughts and prayers are with you.

Love,

Veronica

Last week of radiation

2009-08-09T06:23:00.000-07:00

Dear Family and Friends,

The last week of radiation treatment begins tomorrow. Five more days and another milestone completed!

Linda colored my hair again on Saturday. I have about a quarter of an inch all over my scalp. I’m considering going to work without a scarf tomorrow. I spent all day Saturday without a baseball cap or a scarf and felt okay. I’ll see how I feel tomorrow. If I can work up the courage to go without a wig, scarf or hat to work this week it will mean I went 10 ½ weeks from the end of my last chemotherapy (quite bald) to having enough hair to comfortably go “public.” Total time from complete hair loss to what I consider “publicly presentable” may be 18 weeks altogether. When I put it into weeks like that I feel that it wasn’t too bad.

I have been able to walk/jog every morning this week except one. I’m up to two miles in 30 minutes. I have a ways to go to get back to my previous endurance level but at least my routine is returning. I am continuing with the use of the website calorie counter and trying to follow a diet heavy on vegetables, moderate on protein and fruit and low on breads and other carbohydrates. Really, the calorie counter is a misnomer – I primarily use it as a food tracker so that I can return to being cognizant of what I’m eating. For the last four months or so, I have just eaten for the sake of trying to rid myself of the ever-present nausea. That, unfortunately, led to a nearly ten pound weight gain which is a lot of weight on my not quite 5’3” frame. I no longer have the nausea however the one chronic complaint that still lingers is the constant fatigue. Food rarely helps (even comfort foods do little to improve my energy).

We’ve initiated a new program at the office (Cancer Care Associates) to enhance our initial pre-chemotherapy teaching visit. The first priority is to meet each patient before the day of their first chemotherapy. There are times when this is not feasible but for the most part, we are able to ensure that it happens. We do this because so many of the patients (including myself) felt totally overwhelmed on the first day of treatment.

Patients expressed concern that they have a hard time understanding and remembering all the post-chemotherapy directions given while sitting in the chemotherapy chair waiting for the first treatment. Nothing like a compassionate nurse trying so hard to make us comfortable so that we can absorb all the new information; and yet the visual we have chair-side is a table overflowing with needles (long ones too!), fluid bags (clear and colored), tape, gauze, blood lab reports and teaching material. It was overwhelming for me and I’ve worked in oncology for 25 years. I can’t imagine how it is for someone who has no oncology or medical experience.

The new program offers not only a chance for patients to learn about their chemotherapy treatment in a quiet office with no distractions but also provides a visit with a financial counselor to review the out-of-pocket expenses each patient might have for treatment as well as any other requirements the patient must adhere to with the insurance carrier. I was halfway through my chemotherapy treatment program before I realized how much my out of pocket expenses would be. Chemotherapy is expensive (mine was approximately $4000 per treatment not including the doctor visits, blood labs, and the unexpected three day hospitalization) and I wanted to know how much it would cost our family. I wasn’t going to refuse treatment because of the cost but I wanted to know so we could plan as much as possible. It is my hope that our patients find this program to be positive and beneficial as they start their own journey.

Anne heads back to Macomb, Illinois this week for her second year as a Graduate Assistant and Assistant Soccer Coach at Western Illinois University. She’s been so helpful this summer and it’s been so much fun having her home. I will miss her terribly. When the kids were young I was well aware that the “days were long but the years speed by quickly.” It wasn’t until the house was quiet (and clean) that I saw just how quickly those precious years really did go by.

My thoughts and prayers are with you.

Love,

Veronica

2009-08-05T06:13:00.000-07:00

Dear Family and Friends,

Today is the start of the last eight days of radiation treatment as well as the switch from full breast radiation treatment to what is referred to as the ‘boost’, where the radiation rays are directed only where the cancer was removed. My breast is red, sore and sometimes itches but the doctor says it looks “good”. I’m extremely tired by afternoon.

I had another blood test yesterday and all my numbers are within the normal range. This is the second consecutive time blood levels are within normal limits since surgery in February.

My hair is a little longer everyday but my eye lashes have all but disappeared and my eye brows have thinned considerably. I couldn’t be more surprised by this happening so late after my last chemotherapy treatment which was 8 weeks ago.

All in all I’m looking forward to the end of my trips to the hospital for radiation treatments and a return of energy and hair!

Love,

Veronica

2009-08-02T06:42:00.000-07:00

Dear Family and Friends,

I’m in the home stretch of radiation treatment with just two more weeks to go. I haven’t worn a wig in ten days and it feels great. I wear a scarf at work but soon I’ll ‘retire’ that too. I seem to have forgotten over the last decade that I’ve been a blond how dark my hair really is. I’m really a brunette and now it’s mixed with gray.

Yesterday was the conference for Nurse Practitioners that I mentioned in an earlier blog. This was the first lecture I’ve given since my diagnosis. I tried to attend a dinner the night before but fatigue hit hard late afternoon and I just couldn’t make the trip downtown to the Westin Book Cadillac in Detroit. I had plenty of energy the morning of the lecture and I was fortunate that they scheduled me early to give the talk. Surrounded by fellow nurse practitioners was particularly comforting – most either worked with patients in medical crisis like cancer or were touched by cancer themselves. It felt so ‘normal’ to be teaching again.

Thinking about teaching reminds me that I wanted to share an article in the Wall Street Journal titled, ‘A New View, After Diagnosis’ http://online.wsj.com/article/SB20001424052970203547904574276434196118914.html. The article describes a study involving a new group therapy based on Viktor E. Frankl’s work which is best described in his book: Man’s Search for Meaning. I absolutely agree with this and I’m pleased someone is studying it. I’ve offered groups like this in the past (long before this study) as well as helped patients in individual therapy answer some of the same questions. If you’re interested in learning more about this topic see pages 30 & 31 in our book: Coping with Cancer: A Patient Pocket Book. I may start another group like this in the fall – it’s only eight sessions and just like the article describes, patients seem to find courage to face the adversities inherent in the treatment of cancer.

My thoughts and prayers are with you.

Love,

Veronica

2009-07-31T07:02:00.000-07:00

Dear Family and Friends,

A weird thing happened slowly over the past week – most of my eyelashes fell out. I asked David about this because it seems like such a disconnect that my hair is coming back but my eye lashes are disappearing, especially since I’m six weeks post my last chemotherapy treatment. He said and I quote: “That sometimes happens”. So much for trying to look normal again.

Thoughts and prayers are with you.

Love,

Veronica

2009-07-30T07:38:00.000-07:00

Dear Family and Friends,

Not much time to ‘talk’ this morning. I’m done with my 30 minutes of exercise. I finally made it back to two miles. It’s really hard some days to get up and actually just ‘Do It’ – put the shorts and top on, lace the sneakers and step on the treadmill. Nothing fun about it and I often have excuses about why I should be doing something else; e.g. paying bills; practicing for my lecture…things like that.

I want to mention how I met someone at the office yesterday who reads my blog. She was about a month ahead of me in getting through the breast cancer treatment – just completing radiation and her hair was a little longer than mine. We hugged and then she said how much my writing helped her as she was going through the treatment. Specifically she said ‘I felt I wasn’t alone.’ I was so touched by that statement. It is true with this cancer that, although millions are diagnosed with cancer every year and many of us have great support from family and friends, it does feel like we’re doing it alone.

Thoughts and prayers are with you.

Love,

Veronica

One more update

2009-07-26T10:00:00.000-07:00

Update on my broken wrist:

I forgot to mention in my blog earlier this morning that my cast is off my right arm. I went to Dr. Pochron’s office on Wednesday July 23^rd. The office staff removed the cast and x-rayed my wrist. Dr. Pochron said the bones are healing so I could use a removable splint for two weeks. I have to be careful not to open doors and to limit weight bearing activities like carrying bags, but I’m free from that heavy cast. It feels great! He gave me exercises to do so that I can return to full range-of-motion. I can go without the splint in two weeks. I’m so enjoying getting back to normal and getting the cast off is one more step in that direction.

2009-07-26T07:12:00.000-07:00

Dear Family and Friends,

It’s Sunday morning early and I’m sitting here at the kitchen counter with my second cup of coffee enjoying the quiet. It’s been a heck of a week at home and at work. Forget the fact that I’m half way through my radiation treatments and daily treatments had to be completed. Here’s what happened:

Radiation Treatment: So this was considered the start of my fourth week out of six and one-half weeks of radiation treatments. I started the treatments on June 30^th. They treat every week day (except for the day before a holiday, like the 4^th of July). I completed 18 treatments as of Friday July 24^th. I have 15 more treatments. The last eight treatments are given directly to the tumor site and not to the entire breast and they are referred to as a ‘boost’. This week after one of my treatments, I had an appointment for the team to measure me for the ‘boost’ treatments. It took about 30 minutes and my arm fell asleep as I was in the ‘cradle’ with my arms over my head for most of the time. They sometimes put another tattoo on the skin indicating the tumor bed site; however, they did have an optional semi-permanent ink. I opted for the ink. I don’t want any more reminders of this cancer. It may mean they have to add more ink during the remainder of my treatment should the ink start to fade. Also, I’m to be careful not to wash it off. My breast looks burned in a funny fashion where it looks like a rectangle burn (not something one would get from wearing a swim suit on the beach). I can’t say my breast hurts but I can’t lay on it anymore without feeling uncomfortable. I don’t look at it much because it makes me feel sad. Dianne continues to drive me to treatment every morning. We leave my house at 7:00am, drive to the hospital, get treatment and usually return by 8:00am. I’m thankful for the company in the morning.

Hair: Yes, as I mentioned in my last blog my hair is returning. I wore a scarf to work for the first time on Monday July 21^st. I know that doesn’t sound like any big deal. As I write it – I’m saying to myself, ‘hey, what’s the difference between a wig and a scarf?’ HUGE DIFFERENCE. When I wear my wig, I think I look somewhat ‘normal’, but when I wear the scarf, others can see I don’t have hair. I look like a cancer patient. I walked over to the hospital on Friday and ran into people that don’t see me everyday like they do at Cancer Care Associates. People looked at me different. I don’t think it was in my imagination. I went without my usual baseball cap to radiation treatment much of the week but I don’t really run into anyone I know at 7:00 am at the hospital radiation suite, so I felt 'safe’. The first day Dianne saw me without a wig or hat she commented – ‘what did you do, put fertilizer on your head, you have so much hair coming in?!’ I repeated that statement at least ten times this week and each time I smiled at the image.

Weight: I’ve been watching what I eat and using the web site calorie counter I mentioned last week. I’m down a couple of pounds and really feel like it is helping with the sense of control. I had all sorts of fears like my metabolism was all crazy from the lack of estrogen, chemotherapy, radiation, stress...on and on. I don’t feel that way now. I feel like I can eat normal, healthy foods, exercise and get my weight back down to what it was before my diagnosis. It’s going to take a while but I feel better about it. Less anxious. I can do this too – I can get back to my pre-cancer weight.

Work: I love my work at Cancer Care Associates (CCA). I’m seeing patients again, helping with administration, starting new programs (like the Survivorship program) and feeling valued. We had a nursing department meeting this week. It’s harder on the nursing staff now than last year. Reimbursements are down for chemotherapy. Medicare and the Blues are paying less, so offices like ours can’t afford the same number of nurses, yet we need to provide the same level of expert care. CCA doesn’t have ‘newbie’ oncology nurses (nurses without oncology experience). We have nurses that have years of experience. They know how to start IV’s, run chemotherapies, prevent or treat side effects, teach, support and provide care at a level higher than any other oncology office. I know it because I work with them but more importantly because they took care of me. You need an experienced oncology nurse concentrating on you when you’re in the infusion chair and when you call from home with concerns. We have that now; I just hope we can sustain it with this current health care crisis.

All the kids are fine. Marc and Dima are heading out to the University of Iowa to start their new life. You can catch a glimpse of Marc performing at Smith Walbridge Drum Major Camp on:

YouTube ---> Marc Decker ---> Mace Demo 2009 - Marc Decker

My thoughts and prayers are with you.

Love,

Veronica

2009-07-18T07:09:00.000-07:00

Dear Family and Friends,

Last night was the first time I have left the house without my wig, scarf or a baseball cap. We went to dinner at Benihana’s with all the kids and some friends (there were nine of us) and I decided to go “commando.” I was very self-conscious but observed that there were far fewer eyes on my head than when I tried this on the cruise in Alaska (where I was comfortable enough to attempt this being quite sure I wouldn’t run into anyone I knew).

Here’s the thing about hair and the time-line for re-growth ~I really can’t find much written on this. One of the nurses at the office said she was a hair dresser in her former career and stated that my hair would likely grow about a ½ inch per month. That’s sounds good to me so I’m going with that thought. However, when did the clock begin? When did that “month” start? Was it the last day of chemotherapy (which was May 29^th for me) or two weeks later? Or is it six weeks after that last treatment?

Here’s my cancer timeline which includes hair loss:

February 8^th, 2009: Dr. Benitez calls to say I have cancer

February 18^th, 2009: Lumpectomy and sentinel node dissection

March 17^th, 2009: Oncologist recommends chemotherapy

March 27^th, 2009: Chemotherapy # 1

April 13^th, 2009: Hair cut and started to wear wig

April 17^th, 2009: Chemotherapy #2

April 27^th, 2009: Hospitalized x 3 days

May 8^th, 2009: Chemotherapy #3

May 29^th, 2009: Chemotherapy #4

June 30^th, 2009: Radiation starts (every weekday for 33 treatments)

July 16^th, 2009: First outing without baseball cap, scarf or wig.

So, what does my hair look like today? Well, it is very dark with a dose of gray. I really forgot I was a brunette as I’ve been “blond” for about a decade now. I once read in Ladies’ Home Journal (I mean this literally) that as we grow older we should lighten our hair because it makes us look younger. I don’t mean to imply that Ladies’ Home Journal is something I would consider a peer reviewed, scientific journal but for some reason I read and believed it and acted upon it. Now, here I am with new hair growth and it doesn’t look anything like the hair I’ve been sporting for the last ten years.

Hair salon today:

I’m going to see Linda at 9 a.m. for a “color” and a “trim”. I hope she doesn’t laugh when she sees me although I’m sure I’m not the first post-chemotherapy patient she has ever seen in her career and sadly I won’t be the last. I find myself pondering the following; if I color the gray hair popping up amongst the darker colored hair, perhaps it will look like there is more hair than there really is?

It’s a theory – because I really don’t know if it will work. Here are my concerns about this color thing.

1) My hair is new and fragile. I’m concerned that the chemicals will be too strong and cause the new growth to fall out (people have actually warned me that this can occur)

2) I worry that the dark color will get on my scalp between the sparse hair and I will be left with a stained scalp – which would look awful before it dissipated.

I’ll let you know how this all turns out.

My thoughts and prayers to you and yours.

Love,

Veronica

Coming August 1st, MICNP lecture

2009-07-16T19:13:00.000-07:00

Dear Family and Friends,

I’m going through some slides that I am using for a lecture I will be giving to a group of Nurse Practitioners soon. I’m excited to feel “normal” enough to create an hour long program. The lecture, sponsored by the Michigan Council of Nurse Practitioners, will be held on August 1^st at the Westin Book Cadillac in Detroit. The conference is entitled: Mental Health Issues for Nurse Practitioners and my session will cover: Mental Health Care for Patients and Families in Medical Crisis.

It’s all about the radiation:

All is going well this week. This is probably the best week in terms of my overall health and comfort level in a long time. I’ve completed about 10 days of radiation so far. It is a hassle to run to radiation every weekday morning before heading out to work. As I mentioned previously, the procedure itself doesn’t hurt and I focus on how it will destroy any remaining abnormal cells that might be present. I’m all for that!

My friend, Dianne, has been driving me to treatment every day. It really is nice to have that kind of support. I always think I should do everything myself because, after all, why place a burden on another? That being said, someone to pick me up every morning, sit with me as I wait my turn and then drive me home afterwards is a real gift. I’ve noticed that I’m smiling more at the treatment center.

The radiation is definitely beginning to affect the treated breast. I can feel that it is fuller and sensitive. There is no “pain” and I haven’t noticed any burning signs, irritation with my clothing and so far no tissue sloughing! That’s all a huge relief.

While waiting for treatment recently I met a young woman. I don’t think she was a breast cancer patient because she didn’t wear a patient gown. She had the warmest smile and looked really cute in a scarf. I haven’t seen her in a few days and I miss seeing her in the mornings. There is comfort in connecting with the same people every day while in treatment. We (patients) treat each other like we’re the same and we’re in it together.

I had a blood count late last week (week 2). I’m so happy to say that for the first time in months – I’m “normal”. How nice to see all the numbers within the normal range and not identified in bright yellow as abnormal.

Weight Program:

As I mentioned last week, I started documenting my exercise and food consumption daily on a web site (http://www.everydayhealth.com). I was really hopeful that I would begin to lose the extra weight I have put on during treatment by documenting the food throughout the day. I don’t know –was I delusional? I’ve lost maybe a pound in 10 days and I’m quite sure that with the consumption of one quick bag of chips that loss would be history. I’m thinking that I need more exercise and of course that would mean more time to devote to it. That isn’t happening yet but I’ll keep you posted.

Thoughts and prayers are with you.

Love,

Veronica

2009-07-10T06:09:00.000-07:00

Dear Family and Friends,

I’ve completed a week of daily radiation treatments (excluding weekends). All is going fine. I really can’t notice any skin problems like burning or sensation. The time goes quickly. Treatment was only delayed one day out of seven (I’m not sure, is that good?). The staff said it was the usual monthly testing held every third Thursday of the month or something like that. I was in a hurry to get to work for an 8:30 am meeting, so the delay was an unwelcome surprise. The main thing I’m noticing is my fatigue, of which I can’t really say how much is due to radiation treatment itself. I think now it more has to do with the extra energy it takes to drive and change at the hospital, and then drive home to dress for work.

I made it through the weekend with my cast and they kindly replaced it on Wednesday. The new one feels like it fits better (if that makes sense). It isn’t too tight, too close to the bend on my arm and my wrist doesn’t feel pinched. The doctor shared that I have two more weeks with a cast and then two weeks with a splint. The cast still slows me down considerably. Yesterday I was totally dressed for my work day and just adding my earrings, when I dropped it down my suite jacket and shirt. The earring went down my front and I couldn’t get my casted arm inside my shirt to pull the ear ring out, so I had to take everything off, find the earring and re-dress. I was exhausted by the time I was heading out the door for work. Something as simple as dropping an earring is frustrating and can really drain my energy.

If you’ve read my blog for a while you know I’m very sensitive about my weight gain. I finally felt well enough to make a decision on how to lose the weight I put on since the diagnosis. I’m using a daily calorie counting program on the web. It’s a user friendly program and is helping me to be mindful of what I’m eating and how much exercise I’m getting. It's time-consuming for me and not just because it takes time to track my intake / exercise but also because when I’m at work all day I have to plan foods ahead of time, so I don’t end up eating a high calorie ‘snack’. I hope it works.

Thoughts and prayers for you.

Love,

Veronica

Back home

2009-07-03T07:35:00.001-07:00

Dear Family and Friends,

I’m back from Alaska and trying to find some semblance of normal with my right arm in a cast. Everything takes me longer. Just pulling a pair of pants on or sitting here typing (word processing) means I have to hold my arm up in the air while the fingers strike the keys. Just to share the extent of my limits, I can’t turn a door knob with my right hand. So be it…six more weeks and this too shall pass.

We returned home on Monday night so that I could head over to the hospital for my first radiation treatment on Tuesday morning. I was instructed to be at the hospital at 7:15am because I was to be changed into a gown and ready for them on 7:30am for treatment. Dima and Marc went with me for my first treatment for support. Getting there early wasn’t really necessary. There was no one waiting ahead of me and I could easily get into the changing room to put a gown on. One or two staff mentioned I was early – so much for following directions. A technician was at the changing room door to walk me to a new room (different from the rooms for simulation and verification). I walked in, removed my cap and gown and lay on the same type of table as before. The ceiling had mural of trees, flowers and blue sky. It wasn’t soothing to me but it wasn’t offensive either. There were three young technician women helping my body align my tattoos so that the radiation would go to the correct area of the breast. It took about five minutes. I forgot to mention earlier that each time I’m on one of these tables they put what appears to be a rubber band around my feet to keep them together. The third or fourth time of restricting my feet they actually explained what they were doing (although it might have been in the video they showed several weeks ago). They spoke with each other – not much to me as they called out numbers. I’m assuming all the numbers were a means of verifying I was in the correct position; however they didn’t explain it – at that moment I was a thing for them to manipulate into position, not a person. They told me they were leaving the room and then they did. I heard clicking sounds for maybe a minute or less, and then the machine shifted over my chest and a different scanner-like apparatus rested over me. Again click, click, click…..for another minute or so. The sound stopped and the women returned to release me. It was quick, maybe 7 to 10 minutes. I walked alone back to the changing room. This first day, I had trouble finding my way back but I saw the scale in the hall way and remembered they told me early-on the women’s changing room was the door beyond the scale. Once I returned to the changing room someone showed up and said Dr. Stromberg and Angie (nurse) would see me and I was to stay in my gown and wait to be called back. Shortly thereafter I met for my first of six weekly meeting s with them. They explained this weekly check-up with the doctor (or sometimes with just the nurse) would consist of reviewing my progress, looking at my breast for reactions to the radiation and to answer questions. They said I would need a blood test consisting of a CBC and differential count at week 2 and week 5. I could get the blood test done at the hospital or anyplace and just bring the results. No script provided, so I assume I was to get it from my medical oncologist. I had one question about using a creame David read about which prevents radiation skin reactions. Angie said that there really wasn’t anything that helped prevent a radiation reaction. Dr. Stromberg said to fax the article and she would review it and let me know if it was something that might be helpful. Then I asked about fatigue as a side effect to radiation. Was there a physiological reason why patients reported fatigue with radiation? Dr. Stromberg said they didn’t know. It could be something having to do with how the radiation affected the tissue or it could be the time involved with actually getting the treatment every week day for six weeks. That was it. Day one out of 33 over.

Day 2 – nothing new. My original plan was to dress for work and then head out for radiation treatment. I thought it would be more efficient to go straight from radiation to work. NOT. I can’t seem to do it. I set the alarm for 5:30am. I walk (not jog) for 30 minutes. Eat, wake up and try to get out the door by 7:00am. Part of the problem is my arm in a cast. I can’t dress fast. I can’t seem to figure out how I’ll get my wig off and back on again after radiation. What about the nylons? They take me about 5 minutes to carefully put on so I don’t rip (literally). So for day 2 and 3, I wore the same black button shirt, no bra (putting on a bra with an arm in a cast is not easy), blue jeans, sandals and base ball cap. I walk into the hospital with my car keys and blackberry. That’s it. Simple. I found the parking at the hospital is not a problem at 7:15am. Traffic getting to and home from the hospital is pretty robust but I can drive to the hospital in less than fifteen minutes. I drive home, put deodorant on (no deodorant is allowed before radiation treatment) and change into ‘work clothes’. Since my weight is still up and my cast on my arm – my wardrobe is considerably limited. It takes a long time to dress but I seem to be able to make it to work by 8:45am. Only an hour and half later than usual.

Wednesday afternoon I met with Dr. Pochron an orthopedic specialist who specializes in the treatment of wrists and hands. I provided him the original digital x-ray of my wrist taken the day after the accident and the radiological report. Staff removed my cast, x-rayed my wrist and then Dr. Pochron came into see me. He said the break was a ‘clean’ break and that I would wear a cast for four weeks (I wondered but didn’t ask if that meant three additional weeks, since I was wearing the cast more than a week already), and then two more weeks in a splint. He was kind. He had a fourth year orthopedic resident with him, who was to put my new cast on. I don’t think she was very experienced in casting because the cast feels uncomfortably tight and I have cuts where the fiber glass is rubbing on my thumb. Unfortunately, Dr. Pochron’s office is closed so I have to wait until next week to have the cast adjusted OR go to an emergency room. I’ve decided to place a Kleenex over the part of the cast that is causing a problem but I can’t seem to get over the tightness. I’m not saying I can make it through the weekend without going to an ER, but I’ll try. The fourth year orthopedic resident knew that I had breast cancer and made a real error when speaking with me. She said ‘oh, I think I’ll go back and review your x-ray, this break could be metastasis.’ Okay, so she’s a fourth year resident, and so perhaps I should give her the benefit of the doubt that she doesn’t know met’s don’t go to wrists? But here’s the thing – there was no reason to tell me she was going back to look at the x-ray and look for metastasis. I could just see one of our patients that don’t know how cancer spreads hearing this incorrect and inconsiderate comment and calling our office immediately in a panic. I was so shocked I said nothing at the time, but I will tell Dr. Pochron when I see him next Wednesday. He needs to know his fourth year resident is knowledge-deprived and may be causing patients to worry needlessly.

Hair and Wig: I loved not having anything on my head during vacation. I think I have a sensitive head or something – but I just don’t like scarves, wigs or hats. Unfortunately my hair is still so short that when people see my hair they have a look of uncomfortableness in their eyes. Then I feel uncomfortable. I want to share with you that my wig is a nice wig. I don’t hate the wig – just how it looks and feels on me. However, I returned to work wearing the wig again so that I don’t have to tend to the uncomfortable eyes scanning my head.

So that’s what has been going on with me for past several days. I’m off today but David has five new patients to see so we are working Fourth of July morning so I’ll be working with him tomorrow.

Thoughts and prayers are with you.

Love,

Veronica

Alaska continued

2009-06-27T07:28:00.000-07:00

Dear Family and Friends,

Looking out the cabin’s sliding glass door I can see ocean and fog. We’re headed to Ketchikan ~ our final stop before Vancouver. Alaskan time is four hours ahead of those used to eastern-standard time so we find ourselves up early but retiring early too.

Living with a cast on my right arm gets easier every day. Even typing is easier today than it was a few days ago.

Weight Gain and Cancer: Most often friends and acquaintances associate those of us with cancer with the mental pictures of those who are thin from cachexia (wasting with loss of weight and muscle mass) – not true for some cancer patients like myself. Some studies report that up to 40% of breast cancer patients gain weight during chemotherapy treatment. In our Coping with Cancer book we state, “If you couldn’t eat Twinkies before cancer without gaining weight…don’t think you can eat them now.”

How true that is however it isn’t just what I’m eating that contributes to weight gain - it’s the lack exercise and activity that makes a difference too. I have little energy and I don’t move as quickly as I did before treatment. I’m accustomed to waking early, jogging 30 minutes and then working a 12-hour day. I finish the evening with a load of laundry, dishes, pay the bills, etc.

The last four months I’m up later in the morning, I rarely get a good walk in and can’t seem to go beyond 8:00pm without falling asleep. I feel guilty but I don’t eat as well as I did either. I eat chips and crackers to prevent or treat the underlying nausea. I give myself a ‘reward’ and eat deserts – something I limited prior to cancer. Why? I don’t really understand it because I know that poor eating habits give way to weight gain. I hate weight gain. So why do I do it? What has happened to my self-discipline? I wish I knew the answer. I know that this time period is limited and it too shall pass.

I guess I’ll do one more lap around the ship and hope that this weight gain stops soon.

Love,

Veronica

2009-06-26T09:27:00.000-07:00

Dear Family and Friends,

It’s Friday morning in Juneau, Alaska. Temperatures are still at 50 degrees however we hear from Detroit that they are melting at nearly 100 degrees! I guess weather wise we are in the right place.

I’ve now been without a hat or scarf (I didn’t bring the wig on this trip) for two days. I do get a lot of stares so I don’t think I can go without a head cover for a while. The hair length is still too short to go without notice – so much for that idea!

This laid back vacation has provided time to ponder in some depth my recent past and some of the reasons I reacted to cancer and the diagnosis the way I did as well as why I chose a certain treatment over another.

You know me well enough when I say that I’m not a philosopher. I don’t process my thoughts and feelings using a specific theory. In the 80’s, I taught the Simonton method to my patients. This method is a form of guided imagery and visualization used to stimulate immune response. One technique involved imaging the cancer cells away by seeing them as butter melting. I taught that method not because I thought it worked but because I wasn’t sure it didn’t work. It gave fearful patients a means of finding some internal control over the unknown. As I taught imaging, I spent time with each patient emphasizing that – “We don’t know how you are going to do with this cancer but for now we will assume you are going to survive.” For the cancer patient, spending too much time dwelling on the negative outcome can be depressing and makes it difficult for others to be with us.

In our Coping with Cancer book, we give some very specific instructions such as using a worry clock and setting time limits. For me personally, it just isn’t in my nature to spend time on the negative or the what if’s. I embrace a strenuous life. I grew up working hard and believing that I could do anything if I worked hard enough. Intelligence makes it easier but it is really all about discipline. This is probably why I’m so bothered by being forced to accept the unwelcome burden of weakness, fatigue and even the change in my pain tolerance.

The night I broke my arm I had a tremendous amount of pain but insisted it was nothing and would be better by morning. At first, I felt like vomiting and afterward I was chilled with the pain in my wrist which was constant and no relief in sight. Finally what seemed like several hours after the incident the chills subsided and I was able to get to sleep. Morning arrived and I found that if I didn’t move my wrist it didn’t hurt (much).

I went to breakfast and enjoyed not having to make it or do the dishes when I was done. An hour later Dima and I went to the spa for our scheduled manicure. David thought this idea was a bad one – I thought, “Why not?” I went with the plan that I would ask the nail technician to be careful with my wrist and it worked out okay. I had little additional pain and my nails were once again looking good. By the time we were done it was 10am and the infirmary was open so off we went to see the nurse. Her first words were, “It is broken.” She didn’t inquire or berate me for my delay in coming in but she verbalized the words I’ve been missing since the cancer diagnosis – “You must have a high pain tolerance to have gone through the night with a broken wrist and no pain medications!” A high pain tolerance – YES!! That is me. I always thought I had a high pain tolerance. Like most women I judge my pain tolerance level on how I handled birthing children so I have had such a feeling of disconnect since the cancer diagnosis. If you recall, the needles would come toward me and I’d immediately have an anticipatory response of instant pain. What a wimp I’d become!

This experience on the ship has given me hope. I am strong again. I do have a pain tolerance. I can handle this and other things like I did in the past. I’m wondering now if other cancer patients have experienced this as well. Dima said her mother could always handle pain but she just couldn’t handle the chemotherapy infusions. Why is that? Do we have a sense of helplessness and a feeling of being victimized? Is there something we can do to increase our pain threshold during treatment? I don’t know the answer yet. I need time to think through this and learn from others whether or not they too have had this experience. How long did it take to feel strong again? How long to get the pain tolerance back?

I’ll stop my thoughts for now and turn to the day’s activity – whale watching.

Prayers and thoughts are with you.

Love,

Veronica

1st Stop Radiation, Next Alaska!

2009-06-23T16:29:00.000-07:00

Dear Family and Friends,

So much has happened and I’ve had so little time to write so I’ll try to catch you up.

Radiation – Verification: This trip to radiation was quick and easy although I found myself stopping to put my emotions in check when I came to the entrance and found myself parking in the ‘Radiation Patients Only’ area. No more denying it ~ I’m a radiation patient now. Verification is simply that - a session where they literally rehearse what will happen when the real radiation treatments start. Walking down the hallway leading once again to the small changing room, I ran into one of the doc’s I’ve known for about 15 years. He asked, “How’s it going?” to which I replied, “It is going.” Not really much more to say. I’m done with chemotherapy and I’m in the next phase of treatment.

Vacation Time: Three days after radiation verification we left for our annual family vacation. As most of you know, we have tried to continue our tradition of annual family vacations and most of the time all of the children and spouses make it. This year, however, we are vacationing with Marc and Dima only. We planned this trip in December long before my cancer diagnosis. As the diagnosis and treatment plans unfolded, we were happy we could still fit in this trip. We chose an Alaskan cruise because even in December our thoughts were geared toward doing something that would be relaxing – not the daily rush we had last year in our trip to Italy. We departed for Alaska on Sunday and traveled to Anchorage to begin the cruise. Before we left to board the boat however I headed to the stores and bought some warmer clothing. It was 57 degrees Fahrenheit on Monday morning in Anchorage and 41 degrees this morning as we cruise the College Fjord.

First night on the cruise ~ a casualty: We went to bed early last night due to trip fatigue. I woke early as is my habit and on my way to the bathroom I slipped and caught myself with my right arm (my “good” arm). Unfortunately, I must have twisted my wrist or something because it immediately throbbed and started to swell. We chose to wait until morning to seek medical attention so next stop for us is the infirmary.

Love,

Veronica

The Detroit News

2009-06-17T07:03:00.000-07:00

Hello Family and Friends,

Article on us in the Detroit News today: http://www.detnews.com/article/20090617/OPINION03/906170329/Nurse-follows-own-cancer-advice

Best thoughts and prayers to all of you.

Love,
Veronica

Getting published and back in shape

2009-06-13T06:30:00.000-07:00

June 13, 2009

Dear Family and Friends,

I am at week 3 following my last chemotherapy treatment and I’m feeling pretty well. I started exercising again five days ago and I can now walk a mile and half in 30 minutes. That is a far cry from the three miles in 30 minutes I was jogging every morning in January before the cancer but nevertheless it is progress.

On Tuesday I went to our health club to work with a trainer. What was I thinking? I guess I was thinking I need some organized structure to get me back to the shape I was in before treatment. I have no stamina, I have lost much of my muscle tone and I’m just lacking the motivation right now.

I met the trainer and told him I was two weeks post chemotherapy and was hoping to lose the pounds I had gained and get my strength back. I do not think he understood. He tested me for strength and stamina and checked my BMI. He then said, “Well, you know you might gain weight working out?” Here I go with the self-talk again…what are these trainers thinking? What woman wants to hear that she might gain more weight when she has just confessed to gaining weight and has stood on a scale in front of a complete stranger to prove it! I don’t want to gain any more weight! I am sure that he was just being realistic but I have decided I am not going back to this trainer. If I do go back to the club at all, I’m going for aerobic training not muscle development. The next session is Tuesday and I will have to figure out something by then. Somehow I need to motivate myself ~ maybe I can get Paul and Anne to help me here at home.

On to bigger and better things ~ just when I’m spending any extra energy I have focusing on my last chemotherapy treatment and preparing myself (mentally and physically) for radiation, something has happened in my life outside of ‘self’ that makes me stop to think about something else besides my cancer.

You know me so you know that I have spent many years counseling cancer patients, many years as a hospital administrator and many years working in research, usually doing all three activities simultaneously. A year ago I worked at Michigan State University with two scientists, Barbara and Bill Given. Among my other responsibilities, I worked on a research project that studied how the medical community could help cancer patients be more adherent with their oral chemotherapy regimen (it is hard to imagine that a cancer patient would skip a dose or doses of their oral chemotherapy but it happens all the time).

The year was so great! I spent my nights staying with our daughter-in-law Dima who lived in East Lansing attending MSU at the time and my days learning how to pull a clinical trial together from an ‘idea’ to completion. My prior research experience was all about establishing a hospital program to conduct clinical trials, creating an infrastructure that included hiring staff and assuring oversight and most importantly inspiring a hospital to believe they could be a real cancer center.

My year at MSU was much more subdued as I learned the methodology of a single clinical trial. Our little team (the Givens, a few graduate students and two statisticians) conducted a pilot study prior to the larger study sponsored by Oncology Nursing Society. We wrote up the results of the pilot study and that write-up was just accepted for publication in Cancer Nursing: An International Journal for Cancer Care. How great is that?

We sent the article in months ago with the first revision due during chemotherapy treatment number one (talk about bad timing) and the second and final revision due during treatment number four. If you recall how foggy I got after chemotherapy, you can appreciate trying to ‘clear’ the brain long enough to get the document revised and resubmitted. Fortunately I had plenty of assistance throughout the compilation of data and editing. My administrative assistant, Julie, was a tremendous help in pulling everything together for me. Thankfully, despite the terrible timing and the chemo brain, everything worked and the document was accepted. This was a huge encouragement to me and just what I needed in the midst of the occasional pity parties I endure with myself. I’ll let you know when we get an actual publication date.

That is the news for now. I have the “trial run” for radiation this week. I’ll let you know how that goes.

Love,

Veronica

1 week later

2009-06-04T07:45:00.000-07:00

June 4, 2009

Dear Family and Friends,

It's Thursday, almost one week after my last (and final!) chemotherapy treatment and I'm feeling a little better. I would like to say a lot better but I’m not quite there yet. I'm still waking up early, my head hurts and I continue with no appetite but some nausea. My stomach is still bloated so my clothes don't fit and feel tight and uncomfortable. For now, I am just doing the best I can by putting a smile on my face and going into work...many of you know the drill!

Last night I had my wig washed and blown out again. Boy, do I hate that wig ~ it just isn't me. I look and feel like I'm wearing a helmet. I walked into the salon at our scheduled early evening appointment so as to have the salon to ourselves as I de-wig. Linda washed the wig and then trimmed my remaining hair. I am not completely bald as some may suppose. I do have some hair that remains. It looks like a man’s head actually with a little sparse stuff on top of my head and a little more hair on the sides (I think I look more and more like David!). Anne actually refers to looks like the one I’m sporting as a reverse Mohawk (think Kate from Jon and Kate +8). Linda trimmed the hair so that a few long strands aren’t sticking out at the top of my head and this made me feel better. My immediate hair plan? As soon as my hair is long enough to not cause anyone to stare, I’m going wigless.

Vanity –isn’t that what this wig discussion is all about? Brings to mind a comment Anne made recently when we went for the radiation simulation appointment. We had walked into the little changing / waiting room and one of David’s patients that I recently met is in the room awaiting her radiation treatment. She sees us and smiles the nicest, warmest smile, stood up to give me a hug and really made me feel so welcomed in a place where I was not too excited to be. Later, Anne and I were standing in the bathroom while I was putting on a gown and she spontaneously inquires, “Is that the patient that wears the scarf that you said looks so good but you just don’t think a scarf like that would look good on you?” I said, “Yes, doesn’t she look great?” Anne innocently replies, “Yeah, of course she looks great in the scarf. She’s gorgeous!” Okay, well I didn’t respond at the time but I’ve certainly contemplated her comment since…

Yesterday I was standing in the check-in area of the office and one of the pharmaceutical representatives walked in. I am very familiar with her because I once hired her years ago to work with us in research at the hospital although I haven’t seen her in several months. She sees me standing there and with an animated face and a voice that to me sounded like she was bellowing from the rooftop says, “Veronica! You’ve had a make-over?!” I cannot believe what I am hearing. I have never equated what I’ve been through to a “make-over.”

So there you have it, the perfect self-talk we should all have during chemotherapy. It isn’t that I have lost my hair, I’m wearing a wig, my clothes no longer fit and I can’t sleep so my face is aging before my eyes ….I’ve had a make-over!”

Thoughts and prayers for all of you.

Love,

Veronica

Radiation simulation

2009-06-03T06:26:00.000-07:00

Dear Family and Friends,

Simulation for radiation was yesterday. It wasn’t difficult but I didn’t feel well so every thing they asked of me either hurt or was a ‘bother’. Note to others: Save yourself the grief and don’t plan radiation simulation four days post-chemotherapy.

Here is a quick rundown on what happened:

Parking at the hospital: I had to pay for valet parking because I couldn’t find any open parking spots. Anne accompanied me to the appointment in a separate car so the cost for this trip was $10.00.

Registration: I waited until the registrar was off the phone which took several minutes. She hardly looked at me during the registration process and acted a bit like it was a bother to her. Who knows how her day was going? I’ll give her the benefit of the doubt that she was having a difficult day and was preoccupied with her thoughts instead of my gut feeling that her customer service skills are marginal at best. It was a good reminder for me as a clinic administrator that the first person a patient sees when they arrive really sets the stage for a positive or not so positive experience. Things can improve, despite that first encounter, (as you will see they did for me) the deeper into the ‘system’ you get but how simple to ensure a successful visit for all right from the beginning.

Radiation Oncology: We walked down the hall to some glass doors behind which resides the radiation suite. Here, the welcome was completely different and right from the get-go the staff was pleasant and helpful. I don’t think they were different with me because I’m married to a medical oncologist and they’re aware of that relationship - I just think they were nice people. The hospital has a catchy little mission statement that these staff members don’t need to be reminded of – “The Patient is the Center of All We Do.” They live that statement and that is where things began to improve…as much as could be expected anyway given the reason for the appointment.

Here is the sequence of events for this portion of the visit:

Change into a hospital gown. The women’s changing area is small and most of the chairs were full. I could tell there was a familiarity with the group and they were accustomed to new people showing up for simulation. The look on their faces said, “Yeah, I’ve been there. No problem. If I can do it, you can do it.” No sympathy, just an acknowledgement that they too had walked that walk.
We got to watch a movie! Actually it was a video showing simulation and radiation treatment. Certainly a picture is worth a thousand words but that video with the breast pictures was difficult to watch. I’m wondering now if I will get that severe burn or sloughing of the skin. Not pleasant to ponder. There will be thirty-three treatments for the entire breast given daily, Monday through Friday. There will possibly be boost treatments and that total remains unclear. One person said five and another said seven.
First Room – Making the ‘Cradle.’ I don’t know what the individual rooms were called but they took me to two. The first room had what looked like a CT Scanning machine. The ‘bed’ was twisted out from under the scanner. They placed me on it trying to position me on a garbage bag (literally ~ it was a big black garbage bag that held a type of foam material. When they added a particular liquid substance, the bag heated up and conformed to my upper torso and then hardened. How weird was that?). As I looked around the room, I could see at least eight or more of these black ‘cradles’ with patients’ names on them. The whole process took approximately 40 minutes or so – guessing as to the exact amount of time as they made me take my watch off…and my wig because the heat might burn it (that tells you how hot the foam gets. It wasn’t uncomfortable although I did have to hold my arms above my head for a while. Fortunately, I have full range of motion in my left arm; others might not after a full axillary dissection (I had the sentinel node one) and I cannot imagine how uncomfortable this process would be for them). The movement of the table as they twisted it around to go through the CT-Scan made me sick. I don’t think this would have happened under normal circumstances but in my haste to get this portion of my treatment completed as well, I scheduled simulation too soon after the last chemotherapy. Historically, I know I don’t feel well the first week after treatment and in retrospect, simulation should have been delayed at least ten days.
Second Room – My First Tattoo. As most of you know, I’m a Harley rider. David and I have been riding motorcycles since 1999. Often, friends would kiddingly inquire if I had a tattoo yet. Umm…no. Well, now that’s over. They placed real tattoos on my sides. One on the right and one on the left – just a quick pain as they inserted a needle with black ink. I’ll be honest, I don’t like them. It is just another permanent reminder (as if I need one) that I’ve had cancer and treatment - another insult to my body as it were. In this room, I was put back in the ‘cradle’ so they could align my new tattoos with the cradle to see if it would fit for them to give radiation. Staff here was friendly but at this point I just closed my eyes and tried to keep the nausea at bay.
Next step is to verify simulation. On June 18^th I will return to verify simulation which I have been told is similar to a trial run.

So, that’s my experience with simulation for radiation.

Love,

Veronica

4 days post chemo #4

2009-06-02T05:35:00.000-07:00

June 2, 2009

Dear Family and Friends,

I’m four days post 4^th chemotherapy treatment and I’m still sick. I hate it. I still have a head ache and I feel slightly nauseated all the time. Nothing tastes good but I still eat. Today, I head out to the radiation oncology department for ‘simulation’ – I don’t exactly know what that is other than they measure and figure out exactly where to give the radiation. I’ll share more as I learn the process. I wish now that I hadn’t made the appointment for radiation today. Why didn’t I wait another week so that I could feel better?

More later….

Love,

Veronica

Graduation Day…of a sort

2009-05-31T07:59:00.000-07:00

Dear Family and Friends,

Early summer ~ that time every year when graduations are celebrated everywhere and the future holds nothing but promise for the graduate. I celebrated my own graduation day this past Friday when I completed my last chemotherapy treatment. There was no cap and gown although dear family and friends were gathered round. I did it! I’m done with it for good ~ or at least I hope I am. It’s not that I’m waiting for the next shoe to drop but I know so many who have thought the same thing only to find months or years later that they needed to get right back on that chemo-pony and take that path again. For today, I am going to focus on the outcome I am hoping for, not the one I fear. I’m going to believe that chemotherapy is done for good because that’s all I can handle right now.

Chemotherapy day as usual was late Friday afternoon. This time of day honestly worked the best for me. The Cancer Care Associates (CCA) office isn’t hectic on Friday afternoons and everyone seems happy that the weekend is right around the corner. As Alan Jackson would say, “it’s 5:00 somewhere” and each of us in the office is looking forward to that magical hour for various reasons – whether it’s to start the weekend and get home to families or to get unhooked from all the chemotherapy paraphernalia and beat it out of there!

Chemo-preparation started Thursday with a pre-chemo visit with Cyndi, David’s P.A. Here is what she checked and reported to me. You can skip the details if you want because basically all was fine and I could receive full dose chemotherapy.

Blood count:
Complete Blood Count (CBC) – This blood test checks the red cells, white cells and platelets. This test looks for anemia or high white counts, which would indicate an infection. This is the test that showed the outrageously high white count (91.6) after the Neulasta injection and I found myself with a three-day hospitalization following chemotherapy treatment #2. This time, however, my white blood count was within normal limits. My hemoglobin, hematocrit and red blood cell counts were all a little low.

Comprehensive Metabolic Panel (sometimes referred to as ‘chemistry’) – This is the test that measures the sugar (glucose) level, electrolyte and fluid balance, kidney function, and most important for those of us on chemotherapy, liver function. As you may remember, it is the altered liver functions that have plagued me throughout the chemotherapy. This time the liver enzymes were all within normal limits. My creatinine level was low. This is an indicator of how the kidney is working, particularly when our bodies will need to remove chemotherapy from it. Mine was low again but another test, the creatinine clearance, is a better indicator than just the blood creatinine test and that one was within normal limits. The kidneys are functioning as they should be.

Blood pressure: Within normal limits today. I sometimes have trouble with a low blood pressure and prone to faint in a flash.
Weight: As a woman I despise standing on the scale and having someone document my weight. I was up again. I’m at 114 pounds, an increase of 2.7% from when I started. I know that women with breast cancer sometimes gain weight – it adds insult to injury given what we’re already going through. At some point, I will write more on weight gain but for this time, I’m just happy it wasn’t any worse. My appetite is off, I can’t exercise, constipation is a constant battle and frankly some days I just eat comfort foods.

Chemotherapy day was hectic but great. Friends from the Cancer Clinical Trials Office and CCA kept stopping by my office, others sent emails, Facebook messages and instant messages all filled with good thoughts and celebratory congratulations for getting to the final chemotherapy treatment. For the first time I had three of our kids with me during the treatment. It was so great. Dima, Paul and Anne were with me the entire time and kept me entertained so time went quickly. We laughed and when friends walked in, we shared old stories. Our long-time family friend, Claire Feczko, was particularly funny. Laughter made the time go fast, the arm they ran the chemotherapy in didn’t hurt (it has always hurt in the past, so maybe it’s true what they say – laughter is the best medicine) and the joy of being loved was all over the place.

The day was not without its own version of some pomp and circumstance despite the lack of caps and gowns. The completion of chemotherapy calls for a celebration at CCA. All the nurses working that day surrounded me, pinned an angel pin on my shoulder, gave me a certificate of achievement signed by all the nurses for completing treatment and then they threw confetti over me and wished me the best. It was a nice way to acknowledge ~~the torture~~ the experience and bring closure to that part of my cancer treatment.

My usual modus operandi is to arrive at home, change into PJ’s and then I don’t get dressed again until Monday morning for work. No one bothers me. I have an excellent excuse not to dress, not to do dishes, no laundry and I don’t go anywhere. And for a change – as a mother and a wife I leave all this to someone else and I don’t feel an ounce of guilt. David and Dima drove me home and Paul and Anne stopped to pick up Chinese take-out for dinner. Surprisingly, I had no problems eating beef teriyaki. I settled into my favorite chair with ottoman smack in front of the television. At the time, I thought it unlikely that I would sleep having had 24 mg of steroids prior to treatment and as expected, I didn’t. Paul and Dima stayed up to watch movies with me until 2:00 a.m. and then they threw in the towel and went to bed. I continued the ‘click, click, click’ of the remote all night. I did go up to my bedroom from 3:00 a.m. until 4:00 a.m. but couldn’t get to sleep. After an hour of tossing around and listening to David who had no trouble in the REM department, I decided it was time to get up for the day. I prepared my comfort food of peanut butter toast with honey, coffee, and an orange. It tasted fine – not good but fine and more importantly, I could keep it down.

I busied myself all morning and surprisingly enough my brain continued to work with none of the fogginess I’ve experienced with prior treatments. I had two patient charts to complete, so I had some ‘work-work’ to do until noon. I stayed in the PJ’s and the only personal care I bothered with was brushing my teeth. The pool guy came about 10am to start the filter and adjust the computer, so I had to go out to deck to talk to him. I did that by pulling a sweater over my PJ’s and throwing on a base ball cap. He was too kind to say anything about how I looked and was his usual nice guy self, listening to me ask for pool opening favors.

My face was flushed again the day after chemotherapy – something that has occurred with every single treatment. It isn’t a temperature, just a very flushed face. David seems to think it is either the steroids or the Taxotere. It is another reason why I am content to stay home for a couple days after treatment. I was so relieved to get my work done by noon, so I could totally rest and take it easy for the remainder of the weekend. I watched TV, cleaned out my e-mail inbox and talked to the family. David, Paul and Anne made home-made pizza and we watched the Red Wings in the first game of the finals. Paul told me later I slept through most of the game. I do remember we had a white towel that Paul and Anne got when they attended a Red Wing game last Wednesday. We pretended we were in the audience right at the Joe Louis Arena in downtown Detroit and waved the towel with each goal. Thanks for winning Red Wings - it was fun!

Today is Sunday. I slept last night and I don’t feel good today. My brain is foggy, my eyes are not quite working and I feel nauseated. Emotionally, I’m not feeling much of anything. I’ve not processed yet that the chemotherapy is over although I do go for simulation this week for radiation so it must be true. On Monday, I’ll get the Neupogen injection to keep my white count up and prevent infections. This time, I only need two days of injections because last time my count was higher than needed after three days of Neupogen.

That’s the scoop on the fourth and final chemotherapy ~ I’ll write more later.

Thanks again for all the support and prayers.

Love,

Veronica

Sand Baggin'

2009-05-21T06:23:00.000-07:00

Dear Family and Friends,

I’m really feeling much better. It’s amazing how just one week post chemo treatment can make such a difference.

I spoke with a patient at the Royal Oak office of Cancer Care Associates yesterday. She was wearing a soft wrap around head scarf to cover her bald head, had no eye lashes to speak of, and yet I was immediately drawn to her bright eyes. I’d never met her before but saw her husband and recognized him as someone who had purchased a book at the signing event the prior evening. He told me his wife was in the office getting chemotherapy so I went back to meet her. We exchanged the pleasantries and she immediately asked about my cancer experience. Some times talking about my cancer brings back the tears as I mentioned earlier in letters to you but this time it didn’t. I was okay – just talking the ‘cancer talk’. Someday I’ll write about how breast cancer patients ‘talk’ to each other – it’s a different language. The outsider hears only the words however there is much more depth in the exchange going on.

This patient wanted to tell me what a warm and kind doctor David is and she wanted to share a particular story. The patient and her husband had been in an exam room early in her diagnosis listening to David talk to them about test results and a possible sequence of treatment options. The patient’s cell phone rang in the room and it was their 20 year old daughter calling from Europe where she is attending university. The daughter, frantic with worry, found being so far away from her mother almost unbearable. Somehow, the couple communicated this to David and in that little room he asked if he could speak with her. David took the phone, introduced himself to the young daughter, and proceeded to describe what was going on with her mother, the plan of action they were taking and provided the assurance and hope she needed to calm her worries and focus on a positive outcome. It was a beautiful story relayed to me and I was so proud that David just knew intuitively how to help the family through this crisis. In my mind it was so characteristic of David. There are not many oncologists like him out there.

This story reminded me of our own experience with Brian, Paul, Marc and Anne. As you know from reading the emails, letters and blog entries, we’ve been very open with our kids since we found out about my breast cancer. Despite the fact that telling them was one of the most difficult things I’ve ever done (I’m the mother…the caregiver…I’m supposed to take care of them, not vice versa!), they are adult children and deserved to be informed.

Early in the diagnosis, I thought I would be having surgery, radiation and some type of long term hormone-like therapy. I was pretty confident of that and told the kids – plus most of you – that was the course of action. Unfortunately, the Oncotype DX test results on the tumor tissue (Oncotype Dx is the only gene expression test accepted that can predict a patient’s benefit from chemotherapy as well as the risk of recurrence.) were in the mid-range which meant that my chance for recurrence was not low and not high but it was unclear if chemotherapy was necessary or if radiation and hormone therapy would be sufficient to reduce the risk of recurrence.

I found this out just days before I was going for a second opinion. Anne, our 24 year old, was home when we read the result and said, “You guys are sand baggin’! You’re not really telling us what is going on. You said that you wouldn’t need chemotherapy and now you’re saying you might. I don’t think you’re telling us everything!.” I was floored. Sand baggin’? My perception was that we were absolutely telling the kids everything. I told Anne that she should come to the second opinion appointment with us and listen herself and then she could share what she learned with the other kids. She agreed. When we arrived at the appointment with the oncologist, I introduced Anne to the doctor and said, “Anne is here representing all the kids. They are under the impression that we are not telling them everything. I want her to hear exactly what you are recommending”.

I found this very interesting. Anne thinks we are ‘sand baggin’ the information and I think we’re sharing everything we know up to the minute. As those of you with a history of cancer are aware, not all information about your cancer is revealed at the same time. It unfolds as you complete the tests, the biopsies, the surgeries, that interminable amount of time you spend waiting for the actual results. This scenario really showed me that children, no matter the age, process our disease and treatment in their own way. What might make sense to us as the cancer story unfolds may be perceived as withholding information to them.

As always, thanks for your thoughts and prayers.

Love,

Veronica

Book signing

2009-05-20T06:15:00.000-07:00

Dear Family and Friends,

Cancer Care Associates graciously hosted a book signing for me and it was fabulous. So many of you came to congratulate me and many cancer survivors came to buy the book and share their cancer story. Our lives during treatment seem to be very similar and I’m imagining our survivor years will be the same.

Today is 11 days post 3^rd treatment cycle. I feel so much better this week. I’m not waking with a head ache and the nausea is gone. I started back walking on the treadmill two days ago. I’m only at a mile and half in 30 minutes. I haven’t really exercised since I was hospitalized three weeks ago. I’m so happy to be back feeling like I have some energy again. I know this will get better and better by next week. Don’t even mention treatment 4. I’m narrowly focusing on feeling good again. I have a blood draw in two days so that will bring reality back as quick as anything!

Love,

Veronica

Thoughts

2009-05-16T06:07:00.000-07:00

Family and Friends,

It’s early morning and I’m writing this note to you as I listen to Michael Bolton on my iPod singing, ‘When I’m Back on My Feet Again.” This song seems to be my theme song since I started chemotherapy.

Throughout my entries, I have documented my side effects from the chemotherapy treatments. My reason for doing so includes the obvious ~ keeping you informed as so many have expressed an interest in understanding what I’m going through. In addition to information however, I want to share the story as I journey through the seeming chasm that is cancer care – providing you with an opportunity to “see” what the experience is really like for a patient/family member. I hope it is helpful to you.

One week ago yesterday, I had my third chemotherapy treatment. Once again, the first week following the treatment was bad. I can honestly say this was the worst of the three treatments so far. I was sick all week. Today was the first day I didn’t wake up with a headache. Nausea has plagued me most every morning and fatigue hits hard come early afternoon. I am still unable to fall asleep easily and I waken frequently at night.

As mentioned in an earlier entry, the doctors switched me from Neulasta (an agent used to keep my white blood cells at the level they need to be to avoid serious infections and delay of treatments and/or dose reductions) to Neupogen. Neulasta and Neupogen are given as injections (subq – which is thankfully a small needle) and they don’t hurt too much. I confess…I’m a wimp – and I’m to the point that I really don’t feel I can take anything anymore. No more ‘strong Veronica’ – they come at me for a blood draw and I cringe. I have black and blue marks up and down my right arm like I’m on street drugs! Last time on Neulasta I had an unpleasant three day hospital stay, so I’m very hopeful that the Neupogen just does its job and doesn’t go nuts with my little white cells. They checked my counts once earlier in the week and Dr. Stender asked for another check on Friday. The care I get from my doctors and Cyndi (PA) is incredible. I certainly know what cancer patients mean when they say they ‘feel the care’.

Let’s talk tears. I can hardly talk about the cancer or the treatment or anything to do with this experience without tears whether I’m talking about myself, with the patient in the next chemo chair or someone I read about in the newspaper. I ask myself, “Why?” I’ve never been a particularly weepy person. Sure, I cried when the kids were born and other special events that have occurred throughout my life but never like this.

I was with the nurses at the office on Thursday and we were discussing the “chemo bags” we now give out at the office for our patients on their first chemotherapy. I shared with you earlier that Sandy, my best friend from East Lansing, gave me a bag full of special things to take with me to help me get through the treatment including a blanket, fluffy socks, magazines, a journal, etc. As a patient, I appreciated this gesture so much and worked with Cancer Care Associates to duplicate these bags for our own patients. The nurses were commenting on how grateful the patients who received the bags were and I instantly hit tears. I simply couldn’t talk. All my emotions are just slightly under the surface and it doesn’t take much for them to spill over. Is it depression? Is it an adjustment disorder due to the cancer diagnosis and treatment? Is it Post Traumatic Stress Disorder? I try to diagnosis myself thinking if I could pin point the diagnosis I could get control of it. NOT.

I managed to work all week but it isn’t the old me. Not when I hear and see the pain around me and have to take the time to cry about it before I can move forward and complete my own thoughts. I’m not sure it’s a bad thing; it’s just not in my nature.

Enough for today. I get to feeling too self-absorbed.

Anne arrived home last night. She’ll be home until the soccer team at Western Illinois starts their fall season in early August. Having the kids at home forces me to focus on my mothering and less on myself.

Keep the thoughts and prayers coming our way as I will do the same for you and yours.

Love,

Veronica

Day 5 post chemo #3

2009-05-13T05:39:00.000-07:00

Dear Family and Friends,

I worked yesterday but I didn't feel better until about noon. I don't know if there was a trick to it or if just enough time passed for the chemotherapy to be moving through my body. I still returned home to my favorite lounge chair positioned perfectly six feet in front of the flat screen, side-by-side table to hold lap top, food, books and the telephones (cell and land line). I can honestly say I feel quite up to date on the DVD's that are out. Most are bad but I've watched them. Doubt, Australia and The Bolt - I would never have taken the time to watch if I wasn't so sick and tired that all I can do is 'click, click, click.'

I want to talk about 'sick' - what is it. Sick from the chemotherapy isn't like when I was sick with the high blood count, threw up and ended up hospitalized. 'Sick' the first post chemotherapy days is different. Mainly it's nausea with a sore stomach, head actually hurts - especially if I wear the wig but even if I don't, and overall fatigue - like a truck ran me over but for some reason I can still walk. I walk slow like an old lady. Nausea? Certain foods make me feel like throwing up, like coffee and eggs, yet here I've had a cup of coffee every day since chemotherapy. It doesn't taste good but I keep thinking the caffeine will help get me going. I couldn't look an egg in the eye until this morning (day 5) but today eggs tasted okay - not good but okay and I was afraid to have one more piece of constipating bread. Food is energy and if I don't get something in me then what energy will I have?

I want to talk about mind over matter. It's me - Veronica Decker. I've lived my life with my brain. I analyze and process conversations, behaviors, review the past - very, very analytical. It's in my comfort zone - it isn't work. Over the years, I've rarely been sick and if I do get something like a cold or flu - I just push through. Many of you do the same - I know you. I can't push through this. I can't not feel sick. I do all the tricks I've known to be effective: e.g. like reward myself for getting dressed and going to work; making something special for breakfast; resting; not resting; walking; not walking; writing; not writing; on and on.... I'm sick. I just can't get over it. The audacity of this stupid chemotherapy to make me so sick that I can't process my thoughts, I can't exercise, I can't enjoy the sun shining, I have trouble concentrating - and why? It isn't the cancer making me sick. It's the treatment. Yet, I never doubted that once I saw the OctypeDX score that I would take chemotherapy. Thinking about taking it and taking chemotherapy are way different.

Love,
Veronica

Day 4 post chemo #3

2009-05-12T07:37:00.000-07:00

Dear Family and Friends,

I did end up going home early from work yesterday and thought that just being home would help me feel better. It didn't. The afternoon was long and lonely. It's day 4 now and I'm awake. I forced myself to eat some toast and drink coffee. I still don't feel well but I'm better, so I'm going to make the effort to go to work. I can't stand being home feeling sick. My stomach is bloaty and my brain somewhat foggy. I go in and out of feeling nauseous - but not enough to want to take an anti-nausea pill which would then contribute to the constipation. Taking medications is always a trade off. David said that sometimes patients on the same chemotherapy program as me will complain that the first treatment was the worse - the next will say the second or third treatment is worse. It varies. Apparently for me - its the 3rd treatment that's the worst. I'm thinking maybe I didn't go into this treatment as 'healthy' as the others, since the hospitalization last week. Maybe I just wasn't as strong. I hate being so self-absorbed. I have things to do that have nothing to do with me and this cancer treatment. I'm sick of being sick!

Love, Veronica

Update: day 3

2009-05-11T12:10:00.000-07:00

Dear Family and Friends,

It’s been three days since chemo #3 and I don’t feel that well yet. I have a little of that ‘sick’ feeling where I can’t pin point exactly what’s wrong. May be nausea, may be my head hurts, may be tired. I don’t know what it is. I ate toast and crackers with one cup of coffee and some water today so far. Nothing seems to be pulling me out of the punk feeling. They game me Neupogen today so that my white count doesn’t dip. I hope it isn’t as bad as my reaction to Neulasta.

I’m at work now but I’m going to leave soon. I think I need my PJ’s and a rest.

Love, Veronica

3rd Treatment - completed

2009-05-09T08:26:00.000-07:00

Dear Family and Friends,

I completed my 3^rd chemotherapy treatment yesterday. I have only one more to go. I wrote about how I felt the day before the treatment and placed it on my newly created web site. The publishing company for our new book (ONS) recommended a web site so that if readers wanted to contact me they could easily find me. The web site includes a section where I ‘blog’. Blogging seems much like the email’s I’ve been sending you, so I included those. Web site address: VeronicaDecker.com.

In preparation for the 3^rd chemotherapy I needed a pre-chemo appointment with Cyndi, David’s PA. The findings were such that I’ve gained another pound (one for each treatment so far), and as usual my blood count is off. This time my ALT (liver indicator) was high so they had to decrease my Taxotere dose by 10%. I had additional Dexamethasone (steroid) to prevent an allergic reaction to Taxotere. I had no problems with the infusion this time. It did take two needle pokes to get the IV started but all the drugs ran in well and I was out of the office in 3 ½ hours. David spent most of the time with me keeping me company. My blood pressure always seems to drop during treatment so they hydrate me well and I nibble on crackers. I couldn’t have better nursing care. It was nurse’s week so all the nurses wore special shirts and blue jeans. They gave me one too, so it was the second time in my working history that I wore blue jeans to work (I’ve been working professionally since 1975). I never wore blue jeans with my Cancer Counseling patients, or at Beaumont, Huron and only one day to MSU. It’s so uncharacteristic of me – but it felt good for a change and I was proud to be identified as a nurse at Cancer Care Associates (CCA).

A couple of nights ago I went to my hairdresser to have my wig washed and styled. It has been a month since I started wearing it and Susan’s Special Needs in Pleasant Ridge recommended washing it every month. Linda was kind enough to stay late so I didn’t have to have the wig off in front of strangers. I have to admit that seeing the wig wet and looking like a rag was scary. I thought ‘holy crap that thing cost me $1400 and it will never look good again’. However, she plopped it on my head, blew it dry in the regular way, trimmed a little and it is now looking more and more like my old hair. I don’t like wearing it but I don’t like scarves and the base ball hat just doesn’t make it at work. I bought some dangling ear rings for when I do wear the base ball cap. You can see I have no hair in the back of my head but I think I look okay with the long ear rings and casual clothes. I still have eye brows but not much other hair on the body. My skin is really, really light – kind of pale. Let’s face it I’m looking my age and then some. Just saying that makes me cry but as I mentioned in previous email – it doesn’t take much to make me cry now a day’s. I’d like to blame the treatments but I think it’s a combination of the cancer diagnoses, bad economy affecting CCA, Mom Decker dying, missing the kids, hospitalization last week and the treatment. I’m probably depressed.

Yesterday, we missed Dima’s graduation from MSU with her PhD. I was sad to miss that great event. We’re so proud she persevered for five years to complete the program and now is Dima Alkawwas Decker, PhD. I was fortunate enough to spend many nights with her the year I worked at MSU in East Lansing (April 2007-April 2008). That was actually a blessing. Marc and Dima head out to U of Iowa next week to look for a condo to buy and then they will plan to move by August.

CCA is hosting a book signing event for me on May 19^th from 4pm-6pm at the Royal Oak office. ONS provided post cards, sent out notices to 500 ONS nurses in our area, signage and in general has helped with marketing the event. Obviously, I’ve never had a book signing so I don’t know if one person will show up or 20. We shall see.

All else is fine. I plan to stay home today. Probably I’ll rest because I didn’t sleep last night. David hopes to play with his new motorcycle and catch up on errands.

Mothers Day tomorrow should be low key with Brian, Yanni and Brianna joining us for the day. Happy Mother’s Day to all you mothers.

Keep the thoughts and prayers coming our way as I will do the same for you.

Love,

Veronice

Getting ready for chemo #3

2009-05-07T17:45:00.000-07:00

Dear Friends and Family,

I’m really tired tonight. Actually I’ve been tired since I got out of the hospital last week. I wake with energy but then about mid-afternoon I’m ready to go home and rest. So uncharacteristic of me.

I had my pre-chemotherapy visit with Cyndi (Physician Assistant) today. My blood count has improved but not everything is normal. My hemoglobin is slowing going down, which is probably the reason I fatigue easily and I have no energy to exercise. Cyndi prescribed more steroids because of the allergic response I had to Taxotere at the last treatment.

Tomorrow is Friday and its chemo day- I just don’t want to do it. I feel like a wimp every time I write that. It’s my third chemotherapy treatment out of the planned four. I have a lot to do tomorrow before my chemo time at 2pm. What I do the day of the chemo treatment is make notes to myself and organize my projects and paper work, so that I can remember where I’m at and what I need to do on Monday. After that first treatment where my brain felt like it had a veil over me for several days, I don’t assume that I’ll be 100% so I try to make it easy for myself with my notes. My office is at one end of the building and the chemo suite at the other. I can see that long hall way in my mind. It’s a walk I dread. Preparing to put the needle in my arm, inserting it and then taping the needle and tubing to my skin – it hurt’s! That takes about 30 minutes. Then they infuse more steroids. That takes a while. Then they infuse the Cytoxan. That takes about 40 minutes. Finally, they start the Taxotere. I’m worried about it. I hope it goes faster tomorrow.

I’m alone tomorrow for the treatment. David will be there but he’ll be busy with appointments and patient care. We are really supposed to be in East Lansing this weekend. That is what we’ve planned for more than a year. Dima is graduating with her PhD from Michigan State. Marc, Brian, Yanni and Brianna will with her to celebrate. I wish I could be with them. I’m so proud of her and I want to be with the family to celebrate. Cancer interferes with life.

love, Veronica

The week is not going well...

2009-04-29T16:42:00.000-07:00

Family and Friends,

We've had quite a week. As most of you know David's 89 year old mother passed on last Thursday, with her funeral on Monday. Unfortunately Monday was not a good day for me. I felt sick all morning and was happy to get into PJ's and sit in front of the TV by early afternoon. My temperature went up to 102 so David drove me to the office to check on my blood count. The WBC's were high again, 93.0 (normal 3.3 - 10.7) and I started vomiting. They wheel-chaired me over to the hospital for outpatient infusion of an antibiotic. Within an hour I had an allergic reaction with hives from head to toe and shortness of breath. I was then admitted the hospital and the antibiotic changed. Monday night at the hospital was pretty uneventful. Tuesday I felt better in the morning but by afternoon spiked another temperature. Wednesday morning (this morning) I was begging to get out of the hospital. The IV had infiltrated and the nurse was struggling to get another one in. Actually, I was crying and nothing looks more pathetic than a bald headed woman crying. I finally said - 'call Dr. J and tell him to get me out of here!'. It worked - Drs. J and Burdakin both came over and decided I could leave the hospital. Brian picked me up and I'm home. So far I haven't spiked another afternoon temperature so I think I'm good to go.

Why the high WBC's? They believe the Neulasta injection that they gave me a couple days after the treatment to increase my white blood cell count was too much for me (again). They aren't sure why the vomiting and high temp but it could be the high WBC's. They consulted a infectious disease doc and she was stumped too. Nothing turned up on the cultures, urine sample, chest xray, etc. Needless to say they have decided I won't be getting Neulasta ever, ever again!

I'll be home another day and then I can head back to work.

I'm so wishing to have this chemotherapy treatment over.

Keep the thoughts and prayers coming. This time I think David needs them just to handle the the chaos in his life.

Love,
Veronica

Chemo #2 done!

2009-04-18T07:03:00.000-07:00

Family and Friends,

I hope this email finds you all well. I'm so happy to report that I completed two full cycles of chemotherapy and I have only two more to go. I'm still no authority on chemotherapy and certainly every protocol or mix of types of chemotherapies are different for everyone but here is what I've experienced over the past couple of week since I wrote you last.

In general the first two weeks following the first chemotherapy I didn't feel well most days. It was better week two than week one but as my friends at MSU would say - not enough to be statistically significant. Day 18 post chemotherapy #1 my hair was falling out. It was due for a wash and I remember all the stories of others losing it in the shower - trust me to say that is true. Every time I put my head in the water the drain plug. Actually it was gross to see hair falling out in chunks. What was left I blew dry and blastered it with hair spray. I went into work and a few people commented gently - luckily for me hair loss is normal at Cancer Care Associates (CCA) so there was no look of shock. I called to make an appointment at Susan's to have my head shaved and the wig fitted. I didn't cry. I just felt sad. The wig to me looked like a helmet and felt big. Next day I went back to Susan's and they spent two hours working on the wig to get the head piece to fit. Two days later I went to my usual hair dresser and she tried to get the wig to look more like my old hair. Not an easy task. Basically, I'll say I spent six hours on my wig. I don't care for it and I'll probably go back to try again - but likely it's as good as it gets. Whenever I'm out in public I wear a wig but whenever I'm home I don't. Only one more thing about hair - taking a shower is much more efficient without it!

How do I feel? Week three is really very normal. I have to say I was productive, my brain worked like my ol' self and I felt good. I had trouble with constipation week one and two, so week three I wrote an article for our CCA Newsletter for the patients on constipation (always trying to write about things I know best). I exercised most every day, certainly not as much as normal but yet I could get downstairs to our exercise room at 5:30am and get into my little zone.

The day before chemotherapy I had my pre-chemotherapy appointment with Cyndi Kresge David's Physician Assistant at the office. Basically my blood count that shot up to 60,000 wbc's about 10 days ago appear's now to have been a reaction to the Neulasta. All else for the pre-vist was okay - no changes in blood pressure, etc but my weight was up two pounds. Cyndi re-evaluated the need for the steroids (pills) the day before the chemotherapy and decided that since I didn't have a reaction to Taxotere the first time, we could eliminate the pills. The difference would be that she would order a higher dose (20mg) of steroids to be given by infusion 30-40 minutes prior to the Taxotere. I'm still going to receive the Neulasta this Monday. If you recall from one of my emails it was Neulasta that caused the severe bone pain and when it hit my sternum I thought I was having a heart attack. I felt like I couldn't breath. It was scary and painful.

Chemotherapy day I had blood drawn in the morning and true to form, I can't seem to have normal blood results no matter what since the surgery. This time my platelets were double normal values. As Dr. Stender said, my bone marrow was just jugging the platelets out. Chemotherapy was still approved, so I was good to go. Dima was my partner for the chemotherapy. It took two needle stabs to get the vein going. First they gave me Aloxi and the steroids. Aloxi is the one that slows the GI track down so I don't get nauseated. It stays with me for at least three days and is the main reason I'm now a true expert on management of constipation. They next started the Cytoxan for about a 40 minute drip. No problems. Then they started the Taxotere and within five minutes I started to cough and felt 'weird'. Sarah my nurse shut off the Taxotere and notified Dr J that I was having a mild reaction to Taxotere. Dr. J recommended more steroids (a different kind) and restarting Taxotere at a slower rate of infusion. That worked and I was able to get through the Taxotere and complete the chemotherapy in 3 1/2 hours. I was well enough to eat dinner and visit with Dima, Brian, Yanni and Brianna most of the evening. David and I really appreciate their support.

Today, I'm not feeling great but I'm fine. My head is still clear - but that veil of fogginess didn't start immediately last time, so I'm not sure when and if that will return. I'm smarter this time in that I'm have no expectations to write the checks for the house-hold bills and try to work on a publishing a paper the weekend following chemotherapy. That was not a good decision last time.

I will say that my care at CCA is really special. When I say it takes a 'village' to treat a patient, I really mean it. Cyndi provides my pre-chemotherapy work-up, Dr. Stender approves my chemo, Dr. J watches me during the chemotherapy, Drs. Burdakin, Huben and Zakalik all maintain a watchful eye - each providing me with their cell phone numbers. I feel fortunate in my care.

I've worked everyday and not missed a beat but the price to pay is I'm tired all evening. I was quick to tears most of the first couple of weeks following the first chemotherapy. I could have a 'pity party' pretty darn quickly - usually when I was driving alone in the car. I use distraction a lot to not think about it. Even when I wrote above how I only have two more treatments remaining. It's not like I really think that's good - I think holy s**t, two more treatments, can I do it?!!! Any treatment after the first is harder because there is no naivete about it. I know what to expect and frankly that doesn't make it any easier. There is no 'pill' to take that reality away.

All is all I'm fine and so appreciate of all your support and prayers.

Love,
Veronica

Update

2009-04-04T06:05:00.000-07:00

Family and Friends,

I don't think you'll hear from me again for another couple of weeks as it looks like I'm over the hump with side effects from the chemotherapy. As I mentioned on Wednesday (post 5 days from first chemotherapy) my brain cleared and I started to feel normal. The neulasta injection caused a lot of bone pain and most nights I'm not sleeping but it is tolerable. Hair loss is due late next week, so I have a wig in waiting. I may write you about the hair loss - it depends on how tramautic it is.

I want to let you know that I had some really exciting news on April 1st. As most of you know Linda Ferris and I wrote two manuscripts in the mid to late 90's in regard to caring for cancer patients. One we self-published and one is now its in 10th revision. The former was called Pocket Full of Miracles. We never sold many so we've been giving them out to our patients at Cancer Care Associates and many times over the years people contacted me with positive comments about the book and asking for copies for friends. I thought a lot about it two summer's ago when Anne's friend Stephanie was bed side with her mother who was dying of breast cancer. Stephanie shared how she would sit by her mother and read the book. It still brings tears to me when I think about it. I thought then that if that little book could provide some comfort to people may be I should try to get it published again. We sent the book to 30 agents and publishing companies and one bought it. It was just released this week and can be found on amazon.com under the new title: Coping with Cancer: A Patient Pocket Book. I find it so ironic that the book should just now get published when I'm struggling with my own cancer. I guess God does work in mysterious ways.

I so appreciate your prayers and support.

Warmly,
Veronica

Tuesday brain cleared....

2009-04-01T06:48:00.000-07:00

Family and Friends,

My brain finally cleared on Tuesday (day 4 following chemotherapy). It was like a veil hanging over me so that I couldn't think well. I was most bothered by that. The nausea was like being pregnant with Brian (I had no nausea with Anne and Marc - just Brian), where nothing tasted good and things that I really, really enjoy like coffee aren't appealing. Despite the lack luster appetite, I ate so that I would have energy (or habit). My appetite returned last night for dinner and it's better this morning but not 100%.

The Neulasta subq injection was given on Monday morning. Neulasta will keep my white blood cell count appropriate to fight infections. Although they said it is thick and might hurt when given - I really didn't feel pain. The Neulasta causes bone pain and I do have pain in my chest. Last night I woke frequently and had to go to the bathroom; it was like all the liquids my body gathered over the past few days were finally leaving my body.

All in all I'm okay and I can work but I totally understand that I've received some major chemotherapy. No doubt about it.

Thanks for caring - and keep the prayers coming.
Veronica

First Chemotherapy is Done

2009-03-28T06:25:00.000-07:00

Hello Family and Friends,

Just want to let you know that I completed my first treatment of chemotherapy and all went well. I couldn't sleep much the night before the treatment because they pre-medicated me with 12 mg of steroids, so that I wouldn't have an allergic reaction to the one chemo drug called Taxotere. Taxotere is like another chemo called Taxol and is derived from the Yew plant. That plant can cause major allergic reactions. I was in the chemo chair about four hours, where they started with checking my liver enzymes which were completely down. All the hoopla about the elevated liver enzymes must have been the reaction from the anesthesia, but with me it took nearly a month for them the come back down to normal. My blood count was fine (cbc, hemaglobin, etc) so I was good to go for chemo. they started with hydration, more steroids and then an antinausea medication. Next was one and half hours of Taxotere, followed by another hour or so of Cytoxan. I had three needle sticks to get it going and I have to be careful not to use my left arm where I had lymph nodes removed in the arm pit - drainage might not be 100% and women get lymphadema. Thus, my right arm looks like a I'm on drugs - which I'm but they're the legal ones.

My wig came in and I have a fitting on Tuesday. I hate that part more than most anything. My hair will fall out in about 14 days. All of it. David shaved his head TOTALLY. He is bald. He said he wanted to do it to support me, so now soon we will both be laying in bed with no hair! It was so supportive I cried.

I feel okay this morning. I woke early and went down to the exercise room to jog. I was able to jog 2:24 miles in 30 minutes. I didn't push my self but I have to say it wasn't easy. They weigh me at the office now at least once every couple of weeks, so I know my weight which is 111 and I'm worried about gaining. They say that women often gain on this protocol because of the steroids increasing your appetite and not being able to exercise because blood counts dip and fatigue sets in.

I completed my usual breakfast of two eggs, fruit and coffee and so far its all staying down. I have two types of antinausea pills to take with the first sign of nausea, which apparently is common. Other than my stomach is bloated, I seem to be okay.

I'm working on a paper for publication today at home and just plan to stay home all day. David thinks I'll have a steroid 'crash' tomorrow when I'll sleep most of the day. I'm really happy I planned the chemo on Friday so I have two full days to recoup.

That's the scoop.

Let me know how you all are doing.
Love,
Veronica

Chemotherapy bag

2009-03-23T06:01:00.000-07:00

My friend Sandy gave me a 'chemo bag' to take along for each chemotherapy. Here are the contents - it's perfect. I'm going to ask Cancer Care Associates to create a similar bag for our patients just starting chemotherapy.

Inside bag:

One fleece throw blanket

Water bottle

Tea cup

Tea (herbal, Chartreuse A Journey to Wellness)

Book - Language of letting go by melody beattie

Feet treats (1 pair cozy lounge socks) - purple or pink

journal writing book called 'thoughts' by hallmark

pen

Aveda hand creme (1.4 fl oz)

Book mark

Fish mints, intense cinnamon fish shaped mints

Godiva solid dark chocolate bar 1.5 oz

O' magazine

2009-03-18T07:31:00.000-07:00

Dear Family and Friends,

I just want to let you know that the OctotypeDX test results indicated that my chance of recurrence of the breast cancer was slightly higher than originally thought, therefore I will start chemotherapy on Friday of this week. I'll have four infusions (one every three weeks). The program is crappy in that I'll lose my hair but I should be able to work and hopefully not get 'chemo brain', so that I can't write and 'think'.

I'm bummed but doing okay. I'll start chemotherapy on Friday and try to get it over with as quickly as possible.

On a positive note, Marc was accepted to the School of Music at the University of Iowa and will get a Masters in Conducting. As part of the program he will have a graduate assistant position and teach, including working with the marching band. How great is that?!!! Dima easily found a post-doctorate position, so they will finally live together after five years of marriage.

Brian and Yanni's baby is doing well and we are enjoying her too.

I'm sorry to share the bad news about the need for chemotherapy but I should be back to good health in a few months.

Love,
Veronica

Pathology Report Back_Good News

2009-02-23T16:22:00.000-08:00

Dear Family and Friends,

Good news. Pathology report is verbal only but states: No signs of cancer in lymph nodes; margins on the tumor site are clear (so no more surgery is needed); size of tumor was 7mm (instead of the 8mm they thought from the core biopsy and ultrasound); and still Grade 1.

Next step: Most likely Radiation.

Yeah.
Thanks for the prayers.
Love,
Veronica

Feeling better

2009-02-22T03:39:00.000-08:00

Family and Friends,

I'm feeling much better. My left arm is sore. I washed my hair and blew it dry with the hair dryer - holding it up as I hair-brush dried by hair - that was a milestone. I was so sore for hours after but I felt it good that I did it. I walked on the treadmil for 30 minutes too - felt like wimp.

Most likely I'll hear tomorrow or Tuesday about the pathology report.

Dima and Marc were with me all weekend. Dima helped so much by taking off the breast bandage and bandage under the arm. It doesn't look too bad. I pray they don't have to take more tissue.

We've watched movies and basically chilled most of the weekend. The weather cooperated with many inches of snow, so no one really felt like venturing too far from home. I haven't left the house since Wednesday. Most likely I'll go to church with David and not much else today - although I do plan to go to work tomorrow.

Thanks again for all your support.
Love,
Veronica

Surgery is over....

2009-02-19T02:28:00.000-08:00

Dear Family and Friends,

Surgery is over and they did not find cancer in the sentinel node (axilla) on the quick read, so they did not do a full axillary lymph node dissection. I had the lumpectomy and sentinel node dissestion only. All the prayers must have helped.

I won't bore you with the details but it was a day-long process and I was so happy to get home by 5pm.

I couldn't sleep last night but I'm feeling fine this morning. I have pain pills but I don't think I need them.

I see the radiation oncologist in two weeks and a week later start the daily (Monday through Friday) radiation treatments for six weeks. In two weeks I also go see a medical oncologist (like David) to go over the options of chemotherapy or hormone treatments. It is still unlikely I will need chemotherapy. Most likely I'll be on a hormone-like drug for 5 to 10 years. If I didn't mention it in previous email the U of Michigan second opinion on my pathology slides indicated same diagnosis: Invasive Ductal carcinoma, Grade 1. The real story will unfold when the path report comes back on the actual lumpectomy.

I'll keep you posted. Thanks for the prayers and thoughts. Dima is staying with me over the next two days. Marc will be here over the weekend too. I have plenty of help.
Love,
Veronica

2009-02-12T14:54:00.000-08:00

Hello Family,

I'm sending this to everyone in the family that I have email addresses. I would like to get a letter out to everyone however I don't know when I'll have time, so please share this with family. Mom knows because she called me the day I found out.

I want to let you know that I have been diagnosed with breast cancer. It is a small tumor (8mm), well differentiated, and ER/PR positive. I will need to have a lumpectomy, lymph nodes checked and then follow up with six weeks of radiation treatment + hormonal treatment. I had a MRI yesterday and nothing additional showed up so I think I found the lump early.

My breast cancer isn't genetic, so there is no fear for Anne or anyone else in the family.

I'm fine and I'll write more later.

Love,
Veronica

2009-02-08T07:20:00.000-08:00

Dear Family,

I want to let you know that yesterday I was told I have breast cancer. I found a small pea size lump in my left breast which I found about 10 days ago and a core biopsy taken on Friday indicating breast cancer. I’m going to go for additional testing and even have the pathology report re-checked at University of Michigan before undergoing any invasive surgery or treatment, however most likely the second opinion will be the same.

If it goes as it appears, I have a small cancer (for the nurses in the family: 8 mm –measured by ultrasound, well differentiated) and it can be removed with lumpectomy, followed by radiation and then hormonal treatment.

I continue to be in very good health. My weight is good, no hypertension or diabetes, my colon is polyp free (yeah) and my bones are strong (although I do take a once a year medication for them and I exercise everyday).

Yesterday when Mom called (to share that it was the anniversary of Freda’s birthday) and I told her about the breast cancer I said ‘this is the worse day of my life’, however I want to say that it wasn’t. - I've had worse – this is a crappy time that will demand David and I take time away from the family and our enjoyment in life to get the treatment. Yanni (Anna) is still beautifully pregnant. She had a baby shower yesterday and received so many wonderful gifts from her family. The baby is due March 11^th and they are certainly ready now. We are planning a baby shower in April when the baby is about one-month old and we will invite everyone – not just women. Its always such a long way for most of you to visit, so don’t worry, we’ll send pictures.

I see the breast surgeon later today to create a plan of care and next steps. I’ll keep everyone informed.

Love,

Veronica