November 22, 2009

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

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

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

1. www.vitamindcouncil.org
   
2. http://en.wikipedia.org/wiki/Vitamin_D
3. Michael Holick, 5 May 2007, http://www.uvadvantage.org/portals/0/pres/
4. www.womentowomen.com
5. http://dietary-supplements.info.nih.gov/factsheets/VitaminD_pf.asp

Survivorship Services

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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!

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

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

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