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