When Mary and I met with the surgeon about my surgery and subsequent treatment we got quite the shock. In the initial doctor visit I didn't recall that doctor saying anything about the type of surgery. As Mary was driving us to Mayo I asked her if she could remember if the doctor had said if it was going to be a lumpectomy or a mastectomy. She thought she had heard lumpectomy. I also had read in that book given to me at my first doctors visit(provided by www.jointhejourney.us) that radiation could scar my lungs which would further reduce my lung function. I also talked to Henry "9 Lives" Eckert(a two time cancer victor who has alpha1 and was a double lung transplant) who warned me that the radiation would screw up my white blood cell and red blood cell count in a counter productive way to my lungs. I was unable to get a response from Dr. "Sandy" Sandhaus and my pulmonologist was gone for the week. Therfore I was unable to see what they knew or what their recommendations might be.
We met with the first surgeon and one of the first things I said was that because of my alpha1 and the subsequent affect radiation would have on my lungs I didn't want to pursue it. I rattled off some percentages in research facts I had read and she was a little miffed and said " I don't know where you read or saw but, without radiation you have a 35% chance of the cancer returning. It is my recommendation that you have a mastectomy. Besides, the size of the lump we will be removing may require a mastectomy anyway." I just remember feeling so very sad at that point. I wanted time to decide. I wanted my sister not there so I could feel like the decision was mine. I even thought if I could go out in the waiting lobby for 5 minutes and make up my mind. I knew down deep in my heart none of that was going to happen. I needed to make a decision NOW. I sat there in silence for a while. Mary asked the surgeon and nurse questions. I said "I guess the mastectomy is the way to go....I'll do the mastectomy." Then came the discussion about whether to use a prosthesis or to have breast reconstruction. The result was two more appointments added on to my itinerary. After that appointment I called my brother John and my sister Johanna to break the news of the mastectomy to them. During the education appointment I decided that breast reconstruction was the way to go. I also decided that I would have the breast reconstruction following the cancer/breast removal. I then called my sister Jane and told her the news.
I was a bundle of emotion. As my immediately family will tell you in most instances I am quite stoic but, while telling Jane I got a little emotional. I told her I thought I would be pretty emotional Wednesday and Thursday. Her response was "That's ok Kate. I would be, too."The surgeries will take 3.5 -4 hours and they will be done at Methodist hospital in Rochester. When they release me I will be going to stay at Mary's for 24 hours in case something happens.
Friday was rough on me. Anything I ate or drank went right through me! I was in shock and angry at myself for being angry about the cancer/mastectomy. I do have to note two things:
The outpouring of love and support from my family, friends, community and the alpha1 communtiy has been phenomenal. I am deeply moved/touched by it.
By Saturday I had come to peace with what will be happening to my body.
As I am trying to formulate this post I am noticing my nerves are going back on red alert and everything is going through me. Don't look for a new post till at least Friday. Maybe not even for a week!
The Top10 Things You Should Do If You Test Positive For Alpha1
- Have A List Of Questions When You See a Doctor About Your Alpha1(If you try to remember the questions you want to ask you may forget half of them)
- Learn To Breathe Effectively
- Limit Or Eliminate Your Alcohol Consumption
- Don't Be Afraid To Be Proactive About Your Alpha1
- Get Plenty Of Rest(You will likely have a higher oxygenation level)
- Avoid Sick People(You have a lower immune system than most people)
- Drink Plenty Of Water
- Eat Healthy/Avoid Processed Food(Carbonated beverages)
- Start A Careful Exercise Program/Pulmonary Rehabilitation Program(Your muscles will become more efficient so they won't use as much oxygen and if you have surgery you will likely recover quicker as well)
- Stop Smoking