On Saturday, October 2nd, our family participated in the Susan G. Komen 5K race/walk. It was a remarkable experience for all of us to be among 14,000 other participants. I have to admit, the walk was pretty hard on me, and my hips were
killing me during the last mile of the race and for 2 days after. But, it was worth it.
We had our photo taken as we crossed the finish line by a photographer for the Charlotte Observer. I don't know if the photo was actually in the paper, but it is on the .com version of the paper. As we crossed the finish line, they announced on the PA, "Crossing the finish line is survivor Sally Plautz!" There was a chip in this little plastic disk that they told me to tie to my shoe. I had no idea what that little plastic thing was for. They announced the name of every survivor that finished the race.
Christian, Me, Douglas and Catherine
One year ago today, September 29, 2009, I received the telephone call from Dr. Hamad informing me that I had breast cancer. For those who were there at Karen Garner's house, you remember how difficult this was for me. It was a hard day, and also somewhat surreal. Even now, the whole year is some what surreal, like "did this
really happen?"
Looking back is like trying to remember how bad labor and delivery was (without anesthesia or drugs) several months after your baby was born: you can recall that it was painful and hard, but you can't really bring back the extent of the pain to your memory. This is probably why so many of us have more and more children! :)
It's true, I will forever have the physical scars and other residual issues as a result of all three treatments - chemotherapy, surgery and radiation. Everyday I am bothered by at least one of the symptoms left behind, but mostly, I am getting on with the business of living. This is reason all by itself to celebrate.
To follow up, I did decide to switch my oncologist to Dr. Kimberly Blackwell at Duke University Hospital. She was really sharp. She isn't warm and fuzzy, but that is
not what I needed. She listened to me and acknowledged all of my issues and recommended treatments to help me. She referred me to a pain clinic and a specific physical therapist that deals with post mastectomy problems. Between the two new treatments I am doing better. I still have a long way to go.
Finally someone listened enough to diagnose part of my problem. I have lymphedema in my chest wall. O Lymphedema is found in patients who have had radiation and who have also had lymph nodes removed with their mastectomies. Your lymphatic system functions similarly to your blood flow in your body. Lymphatic fluid circulates via the lymph nodes. When lymph nodes are removed, the lymph fluid can get
backed up and cause intense swelling. This can be dangerous and is painful. Usually, mastectomy patients experience Lymphedma in their arm. Constriction sleeves are custom made to held reduce the swelling. Think about how support hose are needed when someone had bad veins that cause swelling in legs, feet and ankles. The same principle works for swelling cause from a build up of lymphatic fluid.
My fluid is building up in the area where my breast and lymph nodes were removed on the right side (the cancer side that was radiated). The swelling causes compression around the implant and it is
very painful. The physical therapist does a special 'massage' that helps encourage the flow of the lymph fluid, therefore reducing the swelling and ultimately my pain. The problem is that it only lasts for a few hours. I will ultimately have to be fitted with a compression "bra" (not really a bra, but it's the easiest way to describe it) that should help in between treatments. It is very expensive ($300 plus), but my insurance should pay for most of it.
I just want to say that I am filled with gratitude. I am so happy to be on the other side of all this. On Saturday, I will be walking the 5K in Charlotte for the Susan G. Komen event. It's not going to be easy, I have walked only a maximum of 2 miles in the last two months, and that was hard, but I am going to give it my best. Most of my family is coming to Charlotte to do the walk together in celebration of my 1st year as a cancer survivor.
Our team name is
Team Can't-cer, which is taken from the sign that Christian and Mary made when we went to celebrate the completion of my cancer treatments.
My diagnoses CAN'T define me. I had cancer, but it is not who I am.
My pain CAN'T stop me. I have pain, but with the right treatment and perseverance, I will overcome.
So please, celebrate with me. I AM a cancer SURVIVOR. 1 year down, the rest of my life to go.
WHEW.....that was
some year! :)
Please consider donating to this most worthy cause!!!!
It has almost been ONE year since my mother was diagnosed with Stage IIIc breast cancer. To celebrate her and honor those who have been touched by breast cancer, my family is participating in the Komen for the Cure 5K race on Saturday, October 2, 2010 in Charlotte, North Carolina.
Our Team: Team Can't-Cer* has a team gaol of raising $1000 to donate to the Susan G. Komen foundation. 75% of the donations will contribute to support education, screening, and treatment programs in the 9 counties surrounding the Charlotte area. 25% will help fund the Susan G. Komen for the Cure National Award and Research Grant Program. If you are able to contribute to our goal, our team would be most appreciative.
*Can't take over our life; Can't make us weak; Can't hold us down!
CAN-CER? MORE LIKE CAN'T-CER!!!!
Don't forget that October is National Breast Cancer Awareness Month!
THANK YOU!!!!!!
You can make a donation through our team's website:
http://charlotte.info-komen.org/goto/Team_Cant-Cer
I don't know why I persist in the belief that somehow I will get out of the worst of it. I know that Dr. Sailer told me that things would get worse before they get better. But hope springs eternal, and I always think deep down that I just might be the exception. And doesn't that just make you laugh, because during this whole process, I have almost
always had the more severe side effects than what is usually expected. I should just get used to it. Right? Wrong! If I just planned on having the worse case scenario, that would be giving in to pessimism, and I just refuse to do that.
Last night was particularly horrible. Even with Ambien to aid in sleep I was still awake at midnight. I added a small dose of Dilaudid (morphine derivative) that Dr. Sailer prescribed for the times when Aleve was just not sufficient. Still, the clock ticked by, 1:00 a.m.......2:00 a.m......3:00 a.m....then finally asleep. The pain was so intense in the radiated area. And the thing is, it's not just the burning sensation of the skin, but deep underneath in the tissue below. Sharp, intense pain. I just laid there and sobbed.
Then, there is just the fatigue. I am so tired all the time. And, when I don't get a good night's sleep, it is just all the worse. But, I got up this morning and finished the last of the wedding cakes and an anniversary cake for tomorrow, so at least now I can rest from my labors.
There's just so much I want to do now that all my treatments are complete and I don't have time for the pain and the fatigue.
Here's my short list. I want to:
1) go to the pool and just read a book
2) go down to Beaufort and visit my grand-daughters
3) go to a mall and just browse
4) go visit a few of the local fitness centers and join one, so that I can start getting healthy
5) drive myself to the store if I needed something
6) go shopping to find window treatments for the living room and family room (something that dropped to the bottom of the list when we moved in last October because moving and my diagnosis were simultaneous)
I am just impatient, I know.
There's just so much living to do!
Eight and half months ago, it was almost impossible to imagine that this day would finally get here. I knew that someday I could say it, but throughout the months, the treatment schedule changed so many times, that it became hard to wrap my mind around the fact that someday I could say, "My cancer treatments are complete!"
"My cancer treatments are complete!"
Yesterday, Friday June 18, 2010 was my last radiation treatment. Every week, since the first week in May, I have made the trip to Ashville Avenue in Cary, to the Radiation Oncology Center. For six of the last seven weeks, I went every day (weekdays) at 11:30 a.m. to receive my radiation therapy.
I would get up most mornings sometime between 7:30 and 8:30 a.m. and work on that week's cake orders. At 11:00 a.m. I would leave for Cary. The first three weeks, I drove myself. Then, the fatigue became so overwhelming that I knew I was no longer a safe driver. By the end of the fourth week, the skin on my right chest from neck to midriff to armpit was so red and burnt, that it was very uncomfortable to wear clothes.
As I mentioned in my previous entry, the inflammation was so intense that the area around the implant was literally squeezing on the implant; it is so painful.
I had mistakenly surmised that once the last treatment was complete, I was on an immediate turn around toward recovery. And, while that is technically true, Dr. Sailer (my radiation oncologist) informed me at my final visit, that radiation has a delayed effect. What he was saying is that I will actually get worse, before I get better. The radiation has compounding side effects, so I will not observe the full effects of the radiation for several more weeks. He said that my skin will get more tough, more red, and then the top layer will begin to peel off, leaving very tender new skin behind. I will likely have permanent darkening of the skin that was radiated--like a permanent tan. It will probably fade some over the years, but to what extent varies from person to person.
The fatigue will also increase over the next few weeks and then gradually improve. It usually takes about three months to return to the pre-radiation level. I am glad that he told me, so that I would know what to expect.
This afternoon, on the way home from the wedding cake delivery, I was telling Doug that people kept telling me that radiation was really no big deal, compared to chemotherapy--that it would be so easy. Of course, this was from people who were bystanders who had not gone through either treatment. It was just their perception of cancer patients.
Yes, chemotherapy really can make a person VERY sick. The effect are so much more visible and dramatic. But radiation therapy has its own kind of terrible. I'll admit that the side effects of chemotherapy were oft times unbearable. OK...most of the time. But, I have never in my life had this kind of tired. Tired, just doesn't seem to describe it. Even during the sleep deprived baby years (and I spent the entire decade of the 80's pregnant and/or breast feeding) it never felt like this.
When the time comes when another friend of yours is diagnosed with breast cancer, (and it makes me sad to say that unfortunately the odds are that you'll have another friend who will) remember that every part of the treatment is very difficult. Chemotherapy, surgery, radiation...they each have their own terrible. Do offer words and deeds of love and encouragement, but try not to make one part seem easier by comparing it to another.
What comes now? Well, I'll have regular visits to both oncologists every three months for a few years. CT scans, MRI's to check to make sure there is no reoccurrence. (let's not even go there). And, in about 6 months, there will be an outpatient surgery related to the aesthetic details of the breast reconstruction. Hopefully, by then, they will not hurt so bad and I won't just beg to have the implants removed. :)
Keep reading, because I still plan to write at least for the next year or so. The treatments may be complete, but in a way, my life is at a new beginning.
Last night, my family took me out to dinner to celebrate the end of the treatments. When I arrived at the restaurant, my family was already seated and there were beautiful flowers on the table and a sign that Christian and Mary made that said:
"CANCER?
more like
CAN'T-cer!"
They had told our server about our celebration. At the end of dinner, she came by with several of the other's with a birthday sundae. She explained that although it was not the anniversary of my actual birth, that it was, in a way, a new beginning, a celebration of life...and they all sang the Outback birthday song to me. I was touched. And, I felt my perspective change. I felt... forward motion*.
Boo-yah!!! I am cancer free! I am a surviver. And honestly, what I survived and endured (along with all other cancer survivors) is nothing short of miraculous. They pump your body with the most toxic of chemicals and they subject you to what could easily be considered controlled radiation poisoning. But I did it.
Sometimes, in the last 24 hours I just tear up thinking, "I did it!" But, I didn't do it alone. You my friends were all there with me. My family--they were there with me. But above all, my Heavenly Father was there with me. And often, just at the point where I felt I could endure no more, he was there, or he sent one of you, his 'earthly angels' to lift me up.
* Princeton Dictionary: the act of moving forward (as toward a goal)
As of yesterday (Friday the 4th) I have completed 18 of my 28 scheduled radiation treatments. Now that I am four weeks into my treatments, the side effects are very apparent and make it difficult for me to function on a normal level. The fatigue is unlike any other fatigue that I have experienced in my life, but it comes close to the same kind of tiredness associated with my thyroid disease in 2000. When you have no more thyroid hormone in your body, you feel pretty wiped out and it is hard to move your body. This is very much the same, but it adds some extra "goodies" along with it.
For one thing, all the skin in the targeted radiation area is on fire. Like a terrible sunburn. Except, usually if you get a sunburn, you then avoid the sun's burning rays for a while. Not possible here, I get to go back every day at 11:30 a.m. for more! Lucky me. The tissue under the skin becomes swollen and it binds tightly around the implant, which is more painful than it sounds.
Other than that, I am doing fine! :)
There were two fairly large wedding cakes for today, so that means there was a good deal of work to do this previous week. I would work for as long as I could, and then rest for a while. Once the cakes were done and in the refrigerators, I crashed and I couldn't do another thing, but sleep. There are still tons of cake pans, cooling racks and mixing bowls with icing mess and the like in the sink waiting for someone to wash them. I simply do not have the energy to stand and do it. So, I turn my head the other direction so that I cannot see how messy the kitchen is.
Baby steps. Maybe my husband or one of my sons will baby step their way into the kitchen and give me a had. Mark moved back home three weeks ago. When he is here, he is always willing to lend a hand. He's not home right now. I sure miss him. HA!
On May 17th, I met with Dr. Singh, the medical oncologist. I was waiting to hear his final word regarding additional chemotherapy. Those two treatments that were skipped because of my severe side effects have been looming over me since the end of January. He says that I do NOT have to have them. YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!! That is what I wanted to hear.
Other than that news, my visit with Dr. Singh did not go well. Just like the last few that I have had with him. He doesn't listen to me. If I am feeling sad and low, he feels he must make me happy and smiling by the end of the appointment and he just pushes too hard. He doesn't let me finish my questions and then answers the question he THINKS that I am asking. He also will talk to Doug about me, as if I am not even there.
I was already pretty upset when my appointment started. It was my third doctors appointment that day. I was very tired and in pain. I had had it, and I just wanted to climb in bed. When I got to the cancer center I waited over 30 minutes and still they had not called me back for my lab work.
They didn't have me on the list. Ugh!
They said that I would have to wait until the appointment with Dr. Singh was completed. I was trying to keep my emotions together, but I started to tear up. I felt like they had made the mistake, but that I had to pay the price by being bumped to the end of the line.
Finally they called me for the doctor's visit. I was trying to get myself composed. Then, they had to pull out the thigh blood pressure cuff. Because I have had bi-lateral mastectomies, I cannot use a regular upper arm blood pressure cuff for a while. The thigh cuffs are so incredibly painful, and they are not as accurate. This time, it hurt even more than usual, that it made me tear up. Again.
I got myself composed again, but when Dr. Singh walked into the room, it was quite obvious that I had been crying. He asked what the matter was. I quietly said that it had been a long difficult day, but that I would be just fine. He wouldn't let it go. He kept asking questions. He asked me. He asked Doug, who just replied that it had been a long day, that I was in pain and that he was the third and last on the long list of doctors for today. He just wouldn't let it go.
Then, finally, he opened up my file and started to read. It was quiet for a minute or so, so I took some control and said "Well, it was my understanding that the purpose of this visit was too......" And EVERYTHING fell apart after that. It is too laborious to write it in detail. He actually, in what he felt was an effort to comfort me kept calling me "mamma". I was so annoyed, but I just kept thinking that if I told him how inappropriate I thought that was, it would make it worse. He even raised his voice to me.
At one point, when I was quiet, but in tears, he looks over at Doug and starts with "what did I do? What did I say? Did I do anything wrong?" but not in a genuine way, rather a defensive way. I just wanted to run. Fast. And right now.
As we were driving home, I told Doug that it occurred to me that THIS was the doctor that I would have to see regarding my cancer follow-ups for the rest of my life. This was not going to work for me. I need to have a doctor that will listen to me and that I can communicate with over the next twenty or so years.
On Thursday, I saw my family doctor (the amazing Dr. Corey Musselman) regarding my insomnia issues and other basic health maintenance stuff. I told him about how I felt about the doctor patient relationship I had with Dr. Singh. He was completely compassionate. He said it is not unusual, and in some ways expected, with long-term health issues like cancer and not too late to get a second opinion. He understands that I need to be really comfortable and confident in the person who is making the longterm decisions over the next years.
So, in July, I will meet with an oncologist in the Breast Center at Duke and see how that feels. Then his his words he said "and if Duke sucks, then we'll go to UNC" Then he laughed, and I did too.
I feel really good about going to see this new oncologist, Dr. Blackwell. You know, it never occurred to me to get a second opinion in the beginning at first diagnosis. I am not sure that I needed to then. I want to say that I don't question the medical skills of Dr. Singh. It is really just a personality style that isn't a good fit for me. But, I will have to meet with the oncologist, who ever it is, every three months for the first year, and then in diminishing frequency as the years go by. We, of course, pray that there will be no recurrence. But, if there is, I need to know that I have a doctor who will listen to my fears and anxieties, and not feel like it is a statement about their competency. It's just me. I am an emotional girl.
I started my radiation treatment this week. Things appear to be going "as expected" from the oncologist's perspective. I didn't expect to feel the side effect of fatigue quite so soon. I am receiving a pretty strong dose of radiation over a large area, from the front and the back. It doesn't take too long--I have to be very, very still in an awkward position for about 15 minutes. This is much better than the 30 or 40 minutes that I had to be still during the treatment planning stages.
They had to create a mold for my upper body, head and arms to fit into so that I am always in precisely the same position for each of my 28 to 33 treatments. My arms have to be over my head, and my hands have to grip onto handles that keep me steady and in place. This is not good news for my previously injured right shoulder which I was in physical therapy for up until the time of my diagnosis. Ouch...it has been hurting a lot since this all started.
Additionally, the skin of my right "breast" and upper chest that receive the radiation from the front and side feels like a bad sunburn for several hours after the treatment, and then on and off during the evening, night and morning before I go again at 11:30 a.m. each day to have it done all over again. I have extremely fair and sensitive skin so I am not surprised. They give me a lotion to apply to the radiated areas to try to keep the skin as hydrated as possible. It is soothing when I apply it, but its effects are not long lasting, so I find myself applying said lotion fairly often. They told me that I could not use it too much.
I have a pretty busy wedding cake schedule for this weekend, so we'll see how I function. There were no weddings this week, or the last week of May so at least I am not having week after week of busy. June however, presents the opposite situation. But, it is June and that is the month for brides. Thankfully, my dear sweet Kimberly has been my angel to help compensate for my inabilities. I don't know what I would have done without her.
May 16, 2010
I am sporting my new "un-wigged" hairstyle these days. Everyone, but me, really likes it. It's different for me but I am getting used to it. All I see are my chubby cheeks. My hair is extremely soft, very salt and pepper, with much more salt than I had previously. It has a natural wave, which I have had since my last baby was born, but is more obvious now without the weight of longer hair. This hair, almost 1" long, is 4 and a half months worth of growth. It's going to take forever for my hair to be even long enough to it the bottom of my ears. Oh well, it is what it is.
I felt pretty melancholy during the first few days of this week. I finally figured out that it was because the daily ritual of radiation just reminds me every day of my diagnosis. I was starting to feel more normal (not that I was ever really normal) and now I am being slowed down again. The "every-day-ness" of this treatment is probably going to be more taxing than the treatment's effects. I feel better when I am not alone. I need people. Most of all, I need my family, and sometimes it feels like certain family members forget that I am still going through this horrible thing. Not always...just sometimes.
I am so appreciative of your thoughts and prayers and loving support. I still need them. I try so hard to make sure that I don't let myself be defined by the cancer. It is not who I am, it is just something that I am going through. But, there are days where the burden is all consuming, and I don't like where my thoughts go on those days. I had one of those days on Thursday and I cried in the car while I was driving home from radiation. The afternoon was so difficult. I was so incredibly tired and I had baking to do and I didn't feel like doing it. I felt sad, and angry, and sorry for myself. Then Doug came home from work and offered to help me bake. He has not done that in a very long time. I could feel my countenance change as well as my heart. Isn't it amazing how the charitable act of one person can make such a difference?
I can't help but think of the lyrics to the hymn Count Your Blessings:
Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly
And you will be singing as the days go by.
So, amid the conflict--whether great or small,
Do not be discouraged, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey's end.
I know that I am blessed. I know it. I know that there are earthly angels that bless my life every day. My family, my friends, nurses, doctors, technicians or even Shelly at the pharmacy counter at WalMart. I know that even on days when it is really hard to have a positive attitude, I will eventually have my heart soften and feel deep gratitude for all of my blessings.
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