Graduation Day…of a sort

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'

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

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

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

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

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

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

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

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