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

Thursday, July 26, 2007

I know, I know...I'm supposed to take it easy

...But, I'm social!

I walked to town(1.5 miles) a couple days ago to make sure I stayed on top of my health insurance payments while off work. While on my walk to town I reflected on the way all of us reacted and how I reacted to everything surrounding my cancerin addition to when I was Medical POA(Power of Attorney) representing my Dad.

There is nothing you can do to prepare yourself to be that unless you have been that before. It is an awkward and at times unnerving position to be in. It's hard to know when to step back and when to step in even when someone you are to represent is sound of mind. Plus, you've got the effect of what you are thinking/feeling in regard to the person you care about (what they are going through emotionally as a result of the being told of the serious health issue).

I feel for my sister Mary as she is my primary POA. I wasn't very communicative. My mind was going a million miles an hour trying to work through all the information I had read about cancer as well as how it might pertain to me. My attention to the cancer and the outcome of each opposing senario was in high alert. I didn't need to write them down...I just needed not to forget what they were and how to present them in a way they would get the most effective response. If it had been a standard Pulmonologist appointment I would have needed to write the questions down.

BTW, the heat kinda made me sick to my stomach. The end result was to go off Percocet for so I could drive to town. I don't mind walking as it sometimes helps me clear my head but, this heat we're having in the northwoods at this time makes driving preferable!!

Off to Mayo tomorrow to meet with the breast surgeon, plastic surgeon and oncologist. Unfortunately my drain is still putting out too much fluid so, tomorrow isn't my lucky day to get my drain out.

Monday, July 23, 2007

I didn't get it...I do now!!

When I first was diagnosed with cancer I began scouring the internet for information primarily about breast cancer and secondarily about different fundraising activities. Friends & family started mentioning various cancer organizations and how I could get involved in them after I was in remission(AKA: my personal cheerleading squad). When I had lived in Evansville,WI the Night Owl used to participate in Relay for Life every year. I started reading about the Relay For Life, other similar programs online and thought I don't want to be made a spectacle of wearing a survivor t-shirt for the first mile, lap or whatever. Then I read some other website and realised the act was not for my benefit it was to give others who don't have cancer that participate HOPE who were there because they had lost someone to cancer or had a loved one fighting cancer. So...Hey, ya want me to wear a pink t-shirt or survivor t-shirt and walk a lap/mile....No problem, I'M THERE!!

I also plan to participate in the Team Alpha1 respiratory walk in Chicago Sunday September 23,2007 by the lakefront. A really cool thing they are doing is a virtual walk as well. I have the link somewhere in an email and will post a link to it in a later post.

Saturday, July 21, 2007

I am so relieved!

I saw my pulmonologist on Tuesday the day before surgery because I was concerned about a slight infection I asked him if I made the right decision in regard to the mastectomy and no radiation....he said he thought so. He said they have gone round and round w/ oncology about radiation scatter(oncology denies it happens) and the pulmonology doctors wind up dealing with the patient after radiation scatter has done it's damage.

I am cancer free. My sentinel node biopsy came back 100% negative. I don't have to worry about lymphydema(sp?). I don't have to do chemo or radiation. The breast surgeon intern said I did wake up in the middle of surgery(which I have no recollection of) and they had to knock me out again. He said they beat me up pretty good in surgery. The plastic surgeon said they were able to put 200cc's of fluid in the temporary implant so that will speed up the process!

My sister Mary said she didn't get to leave the hospital till 7pm(Ihad started out on the operating table at 8 or 9am). I didn't get emotional like I thought I would but, I was pretty high strung till I got to Mary's Monday night. I had some family who were concerned I would battle depression afterwards. I thought there was a possibility of a little depression but, wound up experiencing none. I have been lectured multiple times to take it easy and not push myself so hard(I get accused of that frequently). When you have a drain coming out your side that makes you as sore as I am you are kinda forced to half way behave yourself. I find myself babying the heck out of my right side. It's very challenging when you are rightside dominant!

Sunday, July 15, 2007

It was tough but, it was the right thing to do!

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 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!

Tuesday, July 10, 2007

You know...there's more to you than your lungs.

Not so long ago a doctor said that to me. So often times we alphas focus on the lungs when it can be something else that does us in or tries to do us in. I had scheduled a routine mammogram in April and missed the appontment. So, when I scheduled an appointment with my pulmonologist I asked his appointment secretary if I could have a mammogram scheduled at the same time. She said it was customary to do that unless you were refered by another physician. She would ask my pulmonologist. They got me and appointment and my life got turned upside down.

July 3rd I found out I have breast cancer. At first I thought "Well, double the mind to body combat." then people were asking me how I was doing, Did I feel ok, I'm soo sorry. Then I got to thinking well, maybe I'm not going to make it???

A long time friend of the family called me to get together while he was home from Arizona. I called him back and spoke to his wife thinking as usual it would just be David and I visiting. Roxanne was quick to tell me that "NO, we both want to see you!" I had become overwelmed and ambivalient. When we got together I said when or if I go into remission. Roxanne(who has a psychology background) said "It's not if! It's WHEN you go into remission!!"

I truly feel it was a blessing the mammogram occured at Mayo. I don't think they would have done as thorough a job locally and the cancer would have gone undetected.

I met my sister Mary at Pine Island July 6th and she drove us the rest of the way to Mayo in Rochester. Mary is my Primary medical POA. We met with a doctor there. We were told I have a DCIS that is high grade and that I am ER+ and PR+. Due to the later I will likely be put on Tamoxifen for 5 years proceeding surgery. There is talk of radiation but due to alpha1 and my FEV1 it is completely out of the question. They took chest xrays and another ultra sound. They also did an EKG. I will be going back this following Friday to meet with the surgeon and another doctor. My bike treks are not going to come to pass this year as I will need to recover from surgery.

There's more to tell but, I'm tuckered! Another day!