A weird thing happened slowly over the past week – most of my eyelashes fell out. I asked David about this because it seems like such a disconnect that my hair is coming back but my eye lashes are disappearing, especially since I’m six weeks post my last chemotherapy treatment. He said and I quote: “That sometimes happens”. So much for trying to look normal again.
Thoughts and prayers are with you.
Love,
Veronica
Dear Family and Friends,
Not much time to ‘talk’ this morning. I’m done with my 30 minutes of exercise. I finally made it back to two miles. It’s really hard some days to get up and actually just ‘Do It’ – put the shorts and top on, lace the sneakers and step on the treadmill. Nothing fun about it and I often have excuses about why I should be doing something else; e.g. paying bills; practicing for my lecture…things like that.
I want to mention how I met someone at the office yesterday who reads my blog. She was about a month ahead of me in getting through the breast cancer treatment – just completing radiation and her hair was a little longer than mine. We hugged and then she said how much my writing helped her as she was going through the treatment. Specifically she said ‘I felt I wasn’t alone.’ I was so touched by that statement. It is true with this cancer that, although millions are diagnosed with cancer every year and many of us have great support from family and friends, it does feel like we’re doing it alone.
Thoughts and prayers are with you.
Love,
Veronica
Update on my broken wrist:
I forgot to mention in my blog earlier this morning that my cast is off my right arm. I went to Dr. Pochron’s office on Wednesday July 23rd. The office staff removed the cast and x-rayed my wrist. Dr. Pochron said the bones are healing so I could use a removable splint for two weeks. I have to be careful not to open doors and to limit weight bearing activities like carrying bags, but I’m free from that heavy cast. It feels great! He gave me exercises to do so that I can return to full range-of-motion. I can go without the splint in two weeks. I’m so enjoying getting back to normal and getting the cast off is one more step in that direction.
Dear Family and Friends,
It’s Sunday morning early and I’m sitting here at the kitchen counter with my second cup of coffee enjoying the quiet. It’s been a heck of a week at home and at work. Forget the fact that I’m half way through my radiation treatments and daily treatments had to be completed. Here’s what happened:
Radiation Treatment: So this was considered the start of my fourth week out of six and one-half weeks of radiation treatments. I started the treatments on June 30th. They treat every week day (except for the day before a holiday, like the 4th of July). I completed 18 treatments as of Friday July 24th. I have 15 more treatments. The last eight treatments are given directly to the tumor site and not to the entire breast and they are referred to as a ‘boost’. This week after one of my treatments, I had an appointment for the team to measure me for the ‘boost’ treatments. It took about 30 minutes and my arm fell asleep as I was in the ‘cradle’ with my arms over my head for most of the time. They sometimes put another tattoo on the skin indicating the tumor bed site; however, they did have an optional semi-permanent ink. I opted for the ink. I don’t want any more reminders of this cancer. It may mean they have to add more ink during the remainder of my treatment should the ink start to fade. Also, I’m to be careful not to wash it off. My breast looks burned in a funny fashion where it looks like a rectangle burn (not something one would get from wearing a swim suit on the beach). I can’t say my breast hurts but I can’t lay on it anymore without feeling uncomfortable. I don’t look at it much because it makes me feel sad. Dianne continues to drive me to treatment every morning. We leave my house at 7:00am, drive to the hospital, get treatment and usually return by 8:00am. I’m thankful for the company in the morning.
Hair: Yes, as I mentioned in my last blog my hair is returning. I wore a scarf to work for the first time on Monday July 21st. I know that doesn’t sound like any big deal. As I write it – I’m saying to myself, ‘hey, what’s the difference between a wig and a scarf?’ HUGE DIFFERENCE. When I wear my wig, I think I look somewhat ‘normal’, but when I wear the scarf, others can see I don’t have hair. I look like a cancer patient. I walked over to the hospital on Friday and ran into people that don’t see me everyday like they do at Cancer Care Associates. People looked at me different. I don’t think it was in my imagination. I went without my usual baseball cap to radiation treatment much of the week but I don’t really run into anyone I know at 7:00 am at the hospital radiation suite, so I felt 'safe’. The first day Dianne saw me without a wig or hat she commented – ‘what did you do, put fertilizer on your head, you have so much hair coming in?!’ I repeated that statement at least ten times this week and each time I smiled at the image.
Weight: I’ve been watching what I eat and using the web site calorie counter I mentioned last week. I’m down a couple of pounds and really feel like it is helping with the sense of control. I had all sorts of fears like my metabolism was all crazy from the lack of estrogen, chemotherapy, radiation, stress...on and on. I don’t feel that way now. I feel like I can eat normal, healthy foods, exercise and get my weight back down to what it was before my diagnosis. It’s going to take a while but I feel better about it. Less anxious. I can do this too – I can get back to my pre-cancer weight.
Work: I love my work at Cancer Care Associates (CCA). I’m seeing patients again, helping with administration, starting new programs (like the Survivorship program) and feeling valued. We had a nursing department meeting this week. It’s harder on the nursing staff now than last year. Reimbursements are down for chemotherapy. Medicare and the Blues are paying less, so offices like ours can’t afford the same number of nurses, yet we need to provide the same level of expert care. CCA doesn’t have ‘newbie’ oncology nurses (nurses without oncology experience). We have nurses that have years of experience. They know how to start IV’s, run chemotherapies, prevent or treat side effects, teach, support and provide care at a level higher than any other oncology office. I know it because I work with them but more importantly because they took care of me. You need an experienced oncology nurse concentrating on you when you’re in the infusion chair and when you call from home with concerns. We have that now; I just hope we can sustain it with this current health care crisis.
All the kids are fine. Marc and Dima are heading out to the University of Iowa to start their new life. You can catch a glimpse of Marc performing at Smith Walbridge Drum Major Camp on:
YouTube ---> Marc Decker ---> Mace Demo 2009 - Marc Decker
My thoughts and prayers are with you.
Love,
Veronica
Last night was the first time I have left the house without my wig, scarf or a baseball cap. We went to dinner at Benihana’s with all the kids and some friends (there were nine of us) and I decided to go “commando.” I was very self-conscious but observed that there were far fewer eyes on my head than when I tried this on the cruise in Alaska (where I was comfortable enough to attempt this being quite sure I wouldn’t run into anyone I knew).
Here’s the thing about hair and the time-line for re-growth ~I really can’t find much written on this. One of the nurses at the office said she was a hair dresser in her former career and stated that my hair would likely grow about a ½ inch per month. That’s sounds good to me so I’m going with that thought. However, when did the clock begin? When did that “month” start? Was it the last day of chemotherapy (which was May 29th for me) or two weeks later? Or is it six weeks after that last treatment?
Here’s my cancer timeline which includes hair loss:
February 8th, 2009: Dr. Benitez calls to say I have cancer
February 18th, 2009: Lumpectomy and sentinel node dissection
March 17th, 2009: Oncologist recommends chemotherapy
March 27th, 2009: Chemotherapy # 1
April 13th, 2009: Hair cut and started to wear wig
April 17th, 2009: Chemotherapy #2
April 27th, 2009: Hospitalized x 3 days
May 8th, 2009: Chemotherapy #3
May 29th, 2009: Chemotherapy #4
June 30th, 2009: Radiation starts (every weekday for 33 treatments)
July 16th, 2009: First outing without baseball cap, scarf or wig.
So, what does my hair look like today? Well, it is very dark with a dose of gray. I really forgot I was a brunette as I’ve been “blond” for about a decade now. I once read in Ladies’ Home Journal (I mean this literally) that as we grow older we should lighten our hair because it makes us look younger. I don’t mean to imply that Ladies’ Home Journal is something I would consider a peer reviewed, scientific journal but for some reason I read and believed it and acted upon it. Now, here I am with new hair growth and it doesn’t look anything like the hair I’ve been sporting for the last ten years.
Hair salon today:
I’m going to see Linda at 9 a.m. for a “color” and a “trim”. I hope she doesn’t laugh when she sees me although I’m sure I’m not the first post-chemotherapy patient she has ever seen in her career and sadly I won’t be the last. I find myself pondering the following; if I color the gray hair popping up amongst the darker colored hair, perhaps it will look like there is more hair than there really is?
It’s a theory – because I really don’t know if it will work. Here are my concerns about this color thing.
1) My hair is new and fragile. I’m concerned that the chemicals will be too strong and cause the new growth to fall out (people have actually warned me that this can occur)
2) I worry that the dark color will get on my scalp between the sparse hair and I will be left with a stained scalp – which would look awful before it dissipated.
I’ll let you know how this all turns out.
My thoughts and prayers to you and yours.
Love,
VeronicaI’m going through some slides that I am using for a lecture I will be giving to a group of Nurse Practitioners soon. I’m excited to feel “normal” enough to create an hour long program. The lecture, sponsored by the Michigan Council of Nurse Practitioners, will be held on August 1st at the Westin Book Cadillac in Detroit. The conference is entitled: Mental Health Issues for Nurse Practitioners and my session will cover: Mental Health Care for Patients and Families in Medical Crisis.
It’s all about the radiation:
All is going well this week. This is probably the best week in terms of my overall health and comfort level in a long time. I’ve completed about 10 days of radiation so far. It is a hassle to run to radiation every weekday morning before heading out to work. As I mentioned previously, the procedure itself doesn’t hurt and I focus on how it will destroy any remaining abnormal cells that might be present. I’m all for that!
My friend, Dianne, has been driving me to treatment every day. It really is nice to have that kind of support. I always think I should do everything myself because, after all, why place a burden on another? That being said, someone to pick me up every morning, sit with me as I wait my turn and then drive me home afterwards is a real gift. I’ve noticed that I’m smiling more at the treatment center.
The radiation is definitely beginning to affect the treated breast. I can feel that it is fuller and sensitive. There is no “pain” and I haven’t noticed any burning signs, irritation with my clothing and so far no tissue sloughing! That’s all a huge relief.
While waiting for treatment recently I met a young woman. I don’t think she was a breast cancer patient because she didn’t wear a patient gown. She had the warmest smile and looked really cute in a scarf. I haven’t seen her in a few days and I miss seeing her in the mornings. There is comfort in connecting with the same people every day while in treatment. We (patients) treat each other like we’re the same and we’re in it together.
I had a blood count late last week (week 2). I’m so happy to say that for the first time in months – I’m “normal”. How nice to see all the numbers within the normal range and not identified in bright yellow as abnormal.
Weight Program:
As I mentioned last week, I started documenting my exercise and food consumption daily on a web site (http://www.everydayhealth.com
Thoughts and prayers are with you.
Love,
VeronicaDear 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
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
