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

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