1 week later

June 4, 2009

Dear Family and Friends,

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

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

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

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

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

Thoughts and prayers for all of you.

Love,

Veronica

Radiation simulation

Dear Family and Friends,

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

Here is a quick rundown on what happened:

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

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

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

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

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

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

Love,

Veronica

4 days post chemo #4

June 2, 2009

Dear Family and Friends,

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

More later….

Love,

Veronica

Graduation Day…of a sort

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