Quote Of The Day:

The only disability in life is a bad attitude.

author unknown

I need my head examined or is it...what I like best about my fitday?

Because having a public diet and exercise journal BITES!! People get to see the real me...warts and all! All joking aside, I'm really glad I have my very public fitday for two reasons. For one it motivates me more to walk the talk than talk the talk. Secondly, it lets those of you out there that are struggling with your alpha1 and what you know you should do realize you aren't alone in struggling to change your ways!

What I like best about it is that I used to count my every calorie burned while working out, mentally keep track of it and then I would check my weight before and after I worked out. I used to just absolutely drive myself nuts trying to lose weight so I could breathe better and so when I went on augmentation therapy it would be cheaper. I have this friend "Miss Confidence" who I have been friends with since what seems like dirt(8th grade track) who is just skinny as a rail and very serious about her diet. She works out at the same exact time pretty near every day! She fell off the wagon for a while. She's back on track w/ a workout partner. All n'all she's pretty dedicated. I actually think she is as skinny as she was in high school. I don't think many of us nearly 20 -25 years after high school graduation can say that! I hope someday I am as dedicated as her. I met up with a friend uptown tonight and he commented he thought I had lost weight in the face...I told him it was probably from the 2 mugs of coffee I had today. I don't think 2lbs is going to be that obvious!

I went to Wal-Mart tonight and bought myself a new thermos so, I could bring coffee to work to get that caffeine fix! I also bought creamers so I new the exact calories. I think the fitday version isn't very accurate. I still plan to take water bottles to work as well as coffee. I want to try to drink half my weight in ounces of water. I also bought wally world cereal bars for 3 reasons: higher in protein, lower in calories and lower in prices. I also bought the unthinkable....I bought grape jelly for P & J sandwiches for my evening meal. I swear the economy jars in college were larger!!.

I've decided I'd try to do things the way my great grandparents on my Dads side used to do it. Years ago the older people that knew them up here used to tell me they had there big meal at noon and their small meal in the evening. It's only an experiment but, I think it will be interesting to see how it plays out as my great grandparents never looked overweight in most of the old pictures I've seen of them.

Yeah!! I have the right kind of release slip so, I can go back to work tomorrow!

Greetings From The Windswept Hills of Northern Wisconsin!!

Here I thought I was going back to work today.......except for one small thing. I didn't have a release form that said I had no restrictions. I went to the office and asked HR if they had one. Then the HR lady called my plastic surgeons office at Mayo only to discover she was in surgery....hopefully I will be able to return to work tomorrow. I stopped by the feedmill to buy apples that are seconds to make applesauce and apple butter but, they were eating/apple cider apples. Different kinds will come in later in the year thankfully!

The upside to not having to work tonight is I hopefully can get caught up on rest! I stayed up way too late last night downloading printer software to my puter' so I could use it with my laptop. I needed to print a PDF of a HIPAA release form to sign and FAX to the Alpha1 Foundation. Plus, I also wanted to printout a job app for the local ski hill to pick up some extra cash to help me pay down debts accrued form being off work for two months. Short-term disability is not quite two thirds of my normal income. I'm trying to keep up on my fitday at least but, I've been slacking.

I got registered for the Join the Journey walk this coming Sunday. I hope this is the first of many affirmation walks to come. It's funny I told my close friends and family before they even performed surgery.....when I'm cancer free I intend to do a affirmation walk for a different cancer organization each year. I wasn't even sure what I meant by that when I said it....until I was asked to define it! My definition was: to give affirmation to those who have lost loved ones to cancer or have loved ones fighting cancer that there is hope and what they are doing does matter. I should have also included those that are fighting cancer as well!! When I did the RCU walk there was a lady walking in the same event I was that had obviously gone through chemo and I thought to myself .....Good For Her!

A Bad Day...With a Sweet Twist

I have been struggling with with insurance companies. This morning started out with me stopping by the local clinic to get some medical papers I had requested yesterday. They didn't have them ready. Grr!! I get about an hour and a half down the road. My cell phone rings and the lady is asking if I'm going to pick up my lab records today. I tell her I'm enroute to Rochester. I'll have to pick them up tomorrow. I get to the Hardee's in Baldwin at noon. I try to order a grilled chicken. The drive-up lady could barely speak english and could understand it even less. To make a long story short I didn't eat grilled chicken. I called Dr. Krowka's medical secretary and used a colorful metaphor(in reference to the insurance processing dept's consistancy in botching getting proper medical info to my insurance providers in a timely manner). She said "If you -----, I'll have to hang up on you." I then rattled off to her everything I needed. First she said I spoke to fast. Then she told me Dr. Krowka would have to see it. He was booked sold all day and she couldn't guarantee she could catch him.

I filled up with gas in Red Wing and decided I better get some form of sustenance before I arrived at Mayo. I get there late & have problems finding a parking space. I get into the subway and realize I forgot the letter with all the info listed my health insurance wanted. I need to get to my appointment. I try 8th floor. Then I try 10th floor. Then I give up and ask someone which floor I need to be on. You would think I would remember by now! I've been there enough times.

They direct me to 12th floor. Twelfth floor is COOL! It has computers w/ internet so one can go online while you are waiting. I check my blog and notice a comment. My name gets called so, away I go but, not before I have read enough of Breathinsteven's comment to be uplifted!!

One of the questions I asked Missy(the nurse) today was...since I have had cancer....Can I donate my organs???I had the donor sticker on the back of my drivers license since I was eighteen. I had spoken to somebody at OST/Bodyshop who had skin cancer removed and was told she could no longer be a donor. Missy said "I don't want to tell you the wrong thing. You need to call the organ donor number and ask them. I do know you cannot donate blood." She tells me I will have probably 2 more breast expansion sessions and then we will wait four months for my reconstructed breast to settle. I also asked her if it was ok to have a racing sailboat tattoo put on my reconstructed breast. She said"You just need to be careful because of the implant"....I figured since I was going to have the areole tattoo on what's one more tattoo. She went onto say that some women completely forgo areole's. In fact one women loved flowers and had a big flowery tattoo put on in place of a tattooed areole.

I then went back to my vehicle to get my paper. Then I went to the breast center to get on a computer to get a FAX # in my email. Then I proceeded to set my keys down by one of the computers in the breast center and head back up to Pulmonology. I get there and they are not too happy to see me but, they oblige me. Dr.Krowka's secretary speaks to Dr. Krowka about talking to me. I sit down with Dr.Krowka and show him the paper. He realizes indeed I do not have all the medical info needed and I wait for the necessary medical records and other info.

I then went down to the business office to request papers for medical expense assistance and to see where they were with my credit union short term disability(yes, I'm still making payments on loan/credit card bills). After that I went to an Indian restaurant.

Life is good and organ donation is SO IMPORTANT !! Those organs aren't going to do you any good when your dead but, they could do someone else good! You know the people who need organs .....could be your spouse, your sibling, your best friend, your parent or your child. They aren't always somebody else's!! Don't forget cornea donations either(because someone did that my late Mother was able to see as the result of receiving one after a bad cataract surgery).

My attitude is definitely evolving...

The other day I started to think about how Roxanne had said " It's not if you go into remission ...it's WHEN you go into remission!!" when I had my cancer scare this summer. For the last year and a half I've remarked and believed "I'll never win the lung transplant lottery. It's like finding a needle in a haystack!" I realized receiving a lung transplant is no different than going into remission from cancer. Attitude is everything!

My friends have heard me saying more than once "Attitude is everything in anything!"
Why I couldn't apply it to a lung transplant is beyond me. I had no problem believing LVRS was within my reach.

Anyone of us who gets put on a lung transplant list can have the right match. I've met enough lung transplant survivors to realize that. You can look at the transplant waiting lists but, it doesn't tell the whole story. And guess what....the people I've met they've been regular people. They've not been independently wealthy. What they have had is a strong emotional support network. There was a local eye doctor they had a fund raiser for so that he would have enough money for a heart transplant(believe me the county population is 15,000 and it's the poorest county in the state of WI). Given this realization I have chosen to believe It's not if I receive a lung transplant. It's....WHEN I RECEIVE A LUNG TRANSPLANT!!

A good atttitude will serve us well, in two respects:

- it will make our life more enjoyable

- if we chose not to have a negative atttitude we won't get depressed and lower our immune
system which will make us less prone to illness/lung function decline

So grateful...yet, an ungrateful brat!

That would be me! Thank you to those of you that participated in the cancer talk poll.

I am so grateful to have the cancer gone yet, it bugs the heck out of me that as a result I have become so deconditioned!! The fact that I was so well conditioned helped me recover sooner but, because of surgery I could not do hip dips, ab crunches, bike or lift any amounts of weights.

I really am a brat about this. I stopped by an older friends house the other day and we sat down at her kitchen island and she said " I love the fact that you say" WHEN I had cancer!" It wasn't "Geez Katie, you've gotten so out of shape!" It was more "I am so glad you are alive!!" How many people with cancer can have as quick and easy a trip to remission? I suspect not many. As an Alpha though I worry because I've become deconditioned that I will approach disability quicker because of it. Am I being reasonable...likely not! As an alpha though one just naturally does worry about such things.

There is one thing I am grateful for second most to the opportunity to be cancer free. The fact, I was interviewed by the Alpha1 Foundation for a feature peice for their website!

I had recently sent an email to someone I graduated high school with. I told her about the interveiw and what the article in Alpha1toOne about Mary Peirce & Shirley Dennis did for me.

I had been diagnosed with Alpha1 for almost 3 years before I foundout that I would have to go on augmentation therapy(which is a FDA approved, rest of your life procedure) because my lungs were in such a severe state of decline. For those first three years I halfway took alpha1 seriously because I really wasn't noticing much difference in what I was and was not able to do. I had begun to see how badly it was affecting my older sister Johanna's quality of life. When I got that report from my pulmonologist I had this perception that all the joy, pleasure and even intimacy was soon to be a thing of the past. I felt like I had unknowingly stepped out in front of a freight train w/ the throttle stuck wide open and about 4 or 5 months later I realized that. I wondered "Did I peel my body off the front of that freight train or did some compassionate strangers?" Somewhere towards the end of the absorption of the effects Alpha1 disease would have on my life that article came.

Mary talked about how Shirley had biked in a long rainy trek with a oxygen tank strapped to her back. She also mentioned that you need to do your part too, in order to fight the disease. That was such an inspiration to me....to inspire another there is not much greater gift another human being can give to another! Hope is the most inexpensive as well as most powerful weapons anyone of us has no matter what we are fighting or going through.

I hope I can pass on the gift of hope that Mary, Henry, Trina, Len and a host of others has given us!! I look forward to being interveiwed by other people/organizations in the future.

The long awaited day has arrived!

Our soldier boy Morgan arrived in the states yesterday. I am off restrictions for the most part as of today. WOO HOO!! In otherwords, I can ride my bicycle but, not on long rides. I think that means I can't do 20+ milers. I am still battling it out with health insurance associated with my augmentation therapy as well as short term disability insurance through my credit union insurance provider. Is doesn't help that Mayo's insurance department is slow as a snail and I DO MEAN SLOW AS A SNAIL!!

Due to the fact I'm starting to stress over the insurance & bills I've decided to get busy with numerous projects till I return to work after 9/10/07. Worrying about insurance is fruitless. I know there is nothing in my control that can be done at this time to expediate the insurance issues. A distracted mind and busy hands is my cure for worry. I likely won't post much in the next few months unless I lose my job(which lets hope doesn't happen).

Yesterday, I went in to urgent care. I gave a sputum specimen and they said they will grow the cultures as long as they will grow to determine what bacteria I have in my lungs. I think most of my lung issues right now are due to the humidity as a result of all the recent rains. I was able to deliver information about the Alpha-Pack and alpha1 to the doctor who said he would copy and email it to all the Marshfield clinic pulmonologist and family practice doctors.

I also got signed up for the Chicago Healthy Lung Hike at Montrose September 23, 2007. If anyone would like to donate to the cause....I am part of TeamAlpha-Alpha1 foundation . From all the money raised by TeamAlpha seventy-five percent will go to the Alpha1 Foundation for research, detectiton and awareness programs! If anyone would like to walk for team alpha...by all means do so, too!

Greetings from the rainforests of Wisconsin!

I haven't posted much as their hasn't been much to tell. I'm still on a 10lb weight lifting restriction. I forgot to ask if it would be ok for me to ride my bike. Hopefully, after tomorrow it will be okay(if I can remeber to ask...I forgot last time). I've been busy picking blackberries and believe it or not last week it made my right arm pretty sore but, this week I have notice quite an improvement in tolerance and movement in my right arm! I read parts of Deep Survival. I also skipped around reading that book about that Park Ranger who disappeared by Yosemite back in 1996. DO NOT read the back of that book about Randy while alone at your cabin(which is over a mile into the woods & out of phone range) late at night alone! There were parts of it that gavc me the creeps!

I told the insurance lady at Accredo that I wasn't ordering anymore augmentation therapy product till they got everything straightened out with my health insurance company. I've begun being billed for my cancer & breast reconstruction surgery before my augmentation therapy(which started 3 months ago). Caring Voices Coalition was to help me with my copay associated with my augmentation therapy(which was to the tune of over $4000 assistance). It's not that I don't want/dislike my choice of augmentation therapy. CVC is only going to help me out with bills associated with the augmentation therapy and Accredo needs to develope a smarter mouse trap for health insurance providers. I was told from the get go I was approved by my health insurance company. The insurance lady at Accredo told me(and I believe her) that she asked them repeatedly if they need to pre-certify me. They told several times no. No alpha should have to go through this kind of additional stress! I am officially in remission but, I have to save worrying about treating/paying for treatment/surgery for two diseases SUCKS!! What gripes me more than that....is two nurses working for my health insurance company determine whether a proceedure or prescription is neccessary . Most nurses no little or nothing about alpha1 and one really needs to see some yearly/bi yearly PFT results before you will really know whether augmentation therapy is neccessary! No offense intended towards my new nurse but, she didn't know what it was(she was honest with me and said "I'd never heard of it before and I asked my colleagues about it. One of them said they'd heard of it before).

I really want to encourage alphas out there to try to educate people about ialpha1(make others aware). Ways that you might try is through local schools AODA officer, PTA's, school newsletters/newspapers, newspapers and various other media. If you are healthy enough or have some close relative willing who participates in fitness walks or bike treks try to contact the Alpha1 Foundation and see if they could put you in contact the Team Alpha1 coordinator and see about getting a team Alpha1 bike jersey or t-shirt to help raise awareness/funds for research.

A Better Day Has Arrived

Yesterday Lucy and I went solo. Between the two of us we managed to blow through my veins 3 times before we called it quits. She said that my body would absorb the fluid and I would be able to stick myself in the same areas by today. Since her daughter was flying in from Italy today she had to get a coworker to come out today. .....It truly amazes me how many people I know that have children that have married someone in another country and chosen to live there. I went to college with a girl born in Italy(and now an American citizen) and I have to say I think I could handle living in Italy but, I'd sure have a time mastering the language I would think.

I got it the first stick but, I shook like a leaf during half my infusion. I was petrified I'd blow the vein. The fact that I was able to stick myself without blowing a vein today is such a huge relief!! The substitute was a very hands off nurse which helped I think and as she said the goal is for you to able to self-infuse.

Tidying up the blog is going to happen

I spoke to a prominent individual in the Alpha1 community for a short time this morning. I realized I need to be more aware of privacy issues. I simply don't get into it when it pertains to me because too often things I've said or done have been misconstrued which I have then had to spend time straightening out. I live in a small town rife with gossips. Of all the things ones reputation is the most important.

Other realizations have occured as well. I've been really bored and I tend to be posting a lot of nothin' so, I've decided when I get back from my visit to Mayo instead of going to the cabin for a couple days I'm going to sequester myself there for about 5 days. I would make it 6 but, I have to be back for an infusion.

Some previous posts on my blog will be either deleted or edit(if I can figure that out).

FAQ: Pulmonary Rehabilitation

If you have an FEV1 below 50% it's frequently recommended you participate a Pulmonary Rehabilitation program. The thing you need to know though is....not all pulmonary rehabilitation facilities are created equal.

Why should you go through Pulmonary Rehabilitation?

-it may help you remain working

-it may help you remain independent

-it may increase your quality of life

-it may help you stay of oxygen

What should I know about Pulmonary Rehabilitation?

-California has the most progressive pulmonary rehabilitation schooling

-you need to look for a pulmonary rehabilitation facilitiy where the staff continually update
their pulmonary rehab knowledge

-just because a medical clinic is progressive in one area of services they provide does not mean
they are progressive in all areas of service

*An excellent example of great pulmonary rehab facility and staff is Karen Block's Endeavour
Pulmonary rehab facility in Mequon, WI(sp?)*

Do your homework!! Your lungs depend on it!

It's heating up in the Northwoods!

Thankfully, not too bad!! We're only in the high 80's. By the weekend I know somebody who's going to load up her truck and head for the woods. It's usually about 10 degrees cooler down at the cabin vs. here at the farm. I have no AC in the house.

Last night I felt a round lump where the breast reconstruction area. It was pretty tender and I became concerned. I called to speak to Missy again at Mayo. They were in surgery today. I stopped by a nurses house in town in the mean time and she wasn't particularly familiar with breast expension implants but, she said she thought I shouldn't be too concerned. Missy called back and said it was likely the magnet in the middle had shift(but, of course she could say for sure without seeing me). She reiterated several times don't get uptight about it or you will make matters worse. She also said this wasn't a pain free procedure(breast implant expansion). I can hear the groans out there!! You're thinking..."You're going to tell Kate to relax...what a joke!" I'm trying to not get uptight I promise!

I am very much looking forward to Friday. Thinking good thoughts. Utmost is that the drain is going to come out!!

This just isn't my day....Sorta

I didn't get my drain tube out today but, it's a good thing! Missy(the Mayo nurse who works with Dr. Walch{plastic surgeon}) said that if they remove the tube too soon fluid may build up that my body won't asborb. It's then followed by an infection and I'll lose the implant. ....I can wait. I asked Missy many questions. One of those was which doctor has my short-term disability papers. I am rescheduled to go to Mayo on Friday and Have a 2pm appointment. They do not use FAX at Mayo. It has come to my attention that some companies(especially lawyers & medical organizations) prefer the real McCoy signature of an individual. I got a call late in the day from someone from Dr. Degnim's office(breast surgeon). She apoligized for them not processing the STD paperwork sooner but, Dr. Degnim was gone last week. I had been hearing 4 weeks off for so long and I told them there was no such thing as a light duty job where I work other than one that exposed my lungs to fumes from primer. I would need to be off 6 weeks. I foundout today the minimum time one can be off w/ a mastectomy is 6 weeks. Due to the setback with my drain tube my return to work date has changed! So, instead of going back to work the last week of August I will return to work September 10th,2007. She also promised to expediate it ASAP. Hopefully, by next week Friday I will see a short term disability check.

In other news I spoke to Virg at Barney's where I have rented a meat locker. She said not to worry too much about paying up due to STD checks not coming yet....just empty your meat locker so Don can proceed w/ remodeling! I also spoke to Cory Muller of CSL Behring and he is going to get that Yoga Mind & Body book to me soon! He also believes there is a very good chance I will be sponsored again next year to attend the Alpha1 National conference.

I thought of a few more things! Hey, Mister Morgan!

...Mister Morgan is our family soldier boy in harms way over in Iraq. He doesn't do email right now by choice. He does chatting. Internet chat and phone calls to his Mom. The info I want to share with him will be my closing topic!

When my sister Mary was going along with me to one of my all day appointment/tests days...we were walking through Mayo's subway from the Damon parking lot. I had to tell her I couldn't walk as fast as she was. I think that was the first time I ever had to tell somebody that and she's 10+ yrs older than me. I'd always wondered how that would effect me some day. Oddly enough, it did not bother me but, I suspect it might have bothered her(I do concede that it was kinda humid in the subway though and subways are great for stale air).

In thinking about that...I also thought about the fact many of the girls/women my age could do circles around me walking or biking but, the fact is I realize I can still enjoy those activities inspite of that fact. Those activities help me physically continue to cheat the oxygen tank and they help me mentally, too! I also have realized I STILL WANT TO TRAVEL AND STILL FEEL LIKE I COULD ENJOY IT!!! I want to see Austria, I want to see Switzerland, I want to see Scotland, I want to see Greece and I want to see Ireland. I'm sure there are others I will think of but, WOW what a sweet realization!!

I also have it set in my mind next year I am going to buy a piece of land and build a healthy handicap friendly house on it. Now, I did want a particular parcel that is about a mile from where I currently live but, I think it would finacially be too much of a stretch. There is another parcel that is 30 acres just a couple miles from the cabin and it is over priced IMHO. I feel like the land prices up here are softening and it will still be on the market next year. If it isn't I'm sure there will be another parcel somwhere within my means.

Mister Morgan....I thought of our discussion after I spoke to you when your Mom & I were leaving Rochester last Friday. 1) It was awesome to get to talk to you!! 2) Numerous people have said " Nah, Katie! YA GOTTA go to Strictly Sail!! You love sailing!"

So, I've thought about it. About that time, my inheritance money from Grandma will be rolling over. I invested it in cd's. I would be using a small percentage of the interest from it to pay for me/us attending Strictly Sail. Strictly Sail isn't that expensive. I/we can stay at Jones on Friday night but, if you do you're going to have to be able to dress "dressy casual" because it is my understanding they would like to take me out to eat somewhere respected. I still would like to stay at Chicago Red Roof Inn Saturday night because it's like 1/2 mile from Navy Pier. I got really tuckered out last year after staying there at Navy Pier all day! It's a cinch driving around Chicago on weekends, too!

I Just Really Haven't Known What to Write...

I sat down several different times and signed in but, there didn't seem like much news to tell. I didn't want this blog to be more about the cancer than alpha1. I actually feel a mixed bag of emotions when I can be classified as a cancer survivor yet, I was able to catch it at such an early stage. On the other hand you can't really respond to cancer treatment in the same way that someone that doesn't have alpha1. I didn't initially realize that myself until I started to read that Mayo womens cancer book given to me by Join The Journey. I was ready to go full steam ahead with radiation until I read one of the personal stories in the book!

I had also wanted to mention about the Minnesota bridge collapse but, had been too tired to respond. I didn't know about it till 9:10 PM that night when I turned on my radio. My sister, husband and two daughters live near there. I immediately tried to call to make sure they were all ok and got a "All circuits are busy" automated response. I finally got through to my sister Johanna and she had gotten ahold of Mary right away." She knew that 3 out of 5 of them were ok. Mary's older daughter wasn't a big concern was my understanding but, her son-in-law worked on the north end of the city. Johanna figured if something had happened to one of them we would have heard from her.....as my Dad used to say "No news, is good news!". I feel for those who have lost loved ones to the MN bridge collapse.

My old nurse and my new nurse had friends that normally use that bridge and they either didn't use it that day or they crossed before it collapsed. My new nurse Lucy, doesn't have quite the nerves of steel Sue does BUT, she is developing them. I'm the first patient Lucy has ever had that sticks theirselves and is working towards completely independent self- infusing. Lucy keeps saying she is SOOO, impressed!!

I thought about when the Oklahoma City bombing happened and it seemed like it took 3 days before I could get a hold of any of my friends down there to verify they/their loved ones were ok. I can't express enough how valued my friends from college were/are to me! The last semester at Eastern Oklahoma State I had to bum a ride to McAllester once a month to go grocery shopping. I would have starved to death if I had bought groceries from Roy's Cardinal Food in Wilburton!!! I had taken liability insurance off my truck so I could pay my 3rd semester bill in order to be able to enroll for 4th semester classes. I have to laugh! I doubt if anybody I went to high school with would believe I ran for president in college or was a student senate rep. Not to mention the various other club officer positions I held that I can't remember anymore! Being on soils judging team at Eastern was surprisingly enough...pretty neat!

I've been pretty freaked out about lymphydema until my old nurse Sue talked to me about it before she left this last time. Lucy will be on her own with me this next week. Hopefully in four weeks I'll be completely independent!!

I still haven't gotten my drain out from surgery. I just can't seem to get down to 30cc fluid in two days. It's really starting to irritate me physically(the drain around my expansion implant)!! I'm anxious to get permission from my plastic surgeon to ride my bicycle again! In the mean time I plan to get my Palm set-up, a guest book, main page site counter on my blog and that Road ID link setup.

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.

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.

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!

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 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!

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!