25 June 2010

Haven't Got Time for the Pain

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!

19 June 2010

Forward Motion

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:

more like

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)

05 June 2010

I am an Emotional Girl

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.