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.


carykate said...

Dear Sally- Good girl in getting a second opinion!! You are still in our thoughts and prayers. You keep turning your head on those dirty dishes!!



Catherine said...

Love you, Mom! We'll get through all of this soon. I'm glad that you spoke up to Dr. M and that he's so understanding and then gave some suggestions. I'm also glad that we're using UNC as a last resort. Ha! (J/K I know it's a good hospital)

Angela said...

I understand you frustration with your doctor. I think that I have seen every urologist in Raleigh!! I'm glad that you are seeing someone else, and hope that he will be a better fit for you. It is so important when you are having ongoing treatment that you feel good about your doctor and leave the office feeling emotionally better. I will you keep you in my prayers.

Sue said...

Oh Sally, you deserve to be an emotional girl! You're going through something really difficult right now. Who wouldn't be emotional? Hang in there and remember that we're still thinking of you and praying for you!

Amy said...

Great post. You really pour your heart out to us, and I know we all appreciate knowing your full story. Thanks for sharing. And I am so sorry for all your pain and frustration. I am hoping that soon there will be a light at the end of the tunnel!

Kristi Fandrei-Rogers said...

An emotional girl? Ohhh excuse me Sally but if you remember anything about me from high school its that I speak my mind... you are one hell of a woman!! and he? the dr? is an ...... ill leave that one to myself! Beyond anything you need and deserve a dr that will listen to you and help you... not one to patronize you..how dare he call you lil momma. I would have smacked him! LOL Keep the faith darling...there is a light at the end of the tunnel!!

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