Greetings from Snowy Northern Wisconsin!

I was trying to remember when it hadn't snowed when I was driving home from work. Our snowmobile trails were opened by December 15th for the first time in 8 or 10 years! WOW!!

I've been sick. First with lung infection. Followed the next week with 3 day stomach flu. YUK!! I am still working the long hours. I turned my laptop into a shop to be worked on. I miss it but, I'm probably getting more sleep because it's not there for me to get on when I get home.

I am having hit and miss luck with my infusions. I just renewed my fitness membership for 4 months. I hope I can squeeze in 1/2 hr workout a day and that it will improve my lung function. When I went out to my truck last night I had to stop every so often to regain some air but, it was only 11 above.

Have a Safe and Rewarding New Year!!!!

Chicago became....returning to dodge

My plan this last weekend was to attend the Alphapack Christmas party and continue onward to Chicago. Between sick friends and bad weather it was deep sixed! The fact that the Alphapack Christmas party was cancelled due to the threat of 9" of snow(to the best of my knowledge never came to pass) was a HUGE disappointment!!!

In previous interviews I had said "You have to own the disease...You CAN'T let Alpha1 own you." which I truely believe. As long as one remains inactive and silent.....the quicker you're going to die and the slower a cure will be found!....EQUALS letting Alpha1(A1At) win.

I had hope to meet new alphas and help them see that it's so much more advantageous to them to be active and promote awareness than remain quiet. As long as one stays quiet fewer new people are accurately diagnosed, less new people participate in research, less progress is made and the further we remain away from a cure.

Aside from my grumble I guess it turned out for the best all n' all. I had been under the weather and called to make an appointment w/ Urgent care and for some reason wound up going to the family practice doctor who diagnosed me back in 2003 for alpha1(at my request I was tested for alpha1). He knows nothing about alpha1. He asked the nurse outside the door "WHAT'S augmentation therapy?!" He came in and couldn't accept I was only blowing a peak flow of 200 when I have come to U.C. before blowing as little as 125 on a peak flow meter. He also suggested 3 times I be tested for allergies. My visit was more premature than usual since I opted to actually use my 2 remaining vacation days as actual vacation days(where I work there isn't sick leave offered). I thought he was putting me on z-pac and 15 day course(that's what he said) of prednisone. He put me on 5 day 500mg Azithromycin and 12 day course of prenisone. He never asked if I had any severe reaction to 500mg azithromycin. End result: too many hours so I suffered through it. Glad it's over!! Came back early and slept 8hrs last night and hope to sleep another 8 -10hrs tonight as the sleep had a marked difference on my peak flows. My best peak flow yesterday was 175. Today it was 250. Although I would have liked to have taken the cancer wellness center tour, visit the Art Institute and Shedd's Aquarium.....Chicago isn't going anywhere. I can visit another time. It was really nice to only work a 50hr work week for a change!!!!

I Realized I Forgot To Mention Some Things......

Firstly, I got my flu shot on November 1, 2007.

Some of those medical bills I received I was told to ignore and that someone would soon be calling me to apoligize for the mistake...which that individual did.

I also thought I had stated back when I was going through cancer surgery and recovery when I became cancer free I intended to do an affirmation walk every year. That it would be a different organization every year to keep it interesting for me(and spread the money around).

I couldn't find anything in my posts back in July or August. I am considering doing the Stepping Up To Wellness walk for the Cancer Wellness Center of Northbrook, Illinois. I will make up my mind after I have hopefully taken a tour of the facility December 17, 2007. I'm sure some might be wondering why....here are some of the reasons:

I have friends that live within 10 miles of it.

I think there maybe people I graduated high school with or attended college w/ that live in the vicinity.

I like what I see they offer to people fighting cancer, cancer survivors and to caregivers of those dealing with cancer.

Nuff' Said!

Thinking Outside The Box!!!

That's RIGHT! That's what I did Thursday. I psyched myself out!!

I got one Saf-T-Intima out of the box and reached for a second one. I then looked at the second one and told myself outloud "You don't need that second one because....You ARE going to get it on the FIRST STICK!!" I then proceeded to return the second needle set back into the box it came out of. Secondly, I told myself that if I didn't get this right Accredo was going to get those nurses from homecare to start coming back in! Talk about instilling the fear of God in myself! It worked like a charm. My hands didn't shake, I didn't blow a vein, I didn't have a vein collapse and I got it first stick. Let's keep this routine going! It certainly helps my confidense a little. The folks at Accredo would not do that though....They were as disappointed as I was with the Homecare standards. Besides that Leann from Accredo sez' the boss says "She knows her stuff!" According to Leann coming from the boss "That's high praise!"

I wanted to comment about the homecare nursing team. It really isn't the nurses fault. They did care but, ultimately the leader of the team set the tone....not to mention the rules the nurses have to live by. The nurse that leads the Accredo nurses has great leadership ability and it shines through in the job that the nurses that go around giving people infusions and teaching people like me how to self-infuse.

I did absolutely nothing constructive today unless you call going to Wal-Mart and Bookworld in Rice Lake today. The Wal-Mart in Rice Lake has a bigger selection of things and sometimes better prices than the one in Ladysmith. Since I was in Rice Lake I decided to stop at the bookstore to see if any new sailing magazines came in. YES, I was rewarded with Cruising World & Sail magazine. Now off to read some KJV bible.

Why Don't You Just Get A Port???

Why don't I just get a port? Actually, in the beginning that's what I wanted to do because I was chicken about sticking myself. I asked my pulmonologist about it. He said "I am not in favor of it due to the fact they are prone to staph infections." My reaction was.....Say no more! When can I start learning how to self -infuse direct into my veins? My father had an older sister who he loved dearly that died of as a result of a staph infection.

The reality is that whether or not you have a port to stick a needle in or stick the needle into vein you're still going to have to stick yourself or someone else will have to....there is no escaping it.

I Wanna Be Victorious Every Week!

Coach Barnabo in high school coined the phrase "Ya Gotta Wanna!" Well, I got plenty of wanna but, I seem to have had a failed self-infusion. First I blew the vein then the second time the vein collapsed. I spoke to the head nurse at Accreddo today and she said I wasn't drinking enough fluids if my veins were collapsing. GRRR!!! I drink between 60 and 80 oz of water a day.

I was victorious in another way though. I did get my last disability claim to go through finally. So, I should see a check reasonably soon. I am already thinking about my affirmation walk for 2008. It's a toss up between two. It depends who I can get to do it with me. Two events in question are both team events. One is in Southern Wisconsin...the other is in Northern Illinois. It was interesting to go read my post on here from June, July & August. It's incredible to read how hightened my emotions were and my reaction to everything.

It looks like I'm going to Strictly Sail in Chicago after all. Woo Hoo!! Hopefully between now and then I will have acquired a nice thick long wool coat down there. I did see some last year at the mall in Janesville but, they didn't seem that thick. I' ve always wanted one. As Tony likes to always tell me "It's Chicago! We'll find it!!"

I'm Thankful For!

When I lived in Claremore, Oklahoma I became friends w/ the Widneys and at thanksgiving they would go around the room and everybody had to say something they were thankful for that year( and when it came to the children...that could be quite comical). So, since I have the day off I thought I would post a list of what I was thankful for.

1) My first nurse Sue who made the intimidating transition to self - infusing smooth
and near painless!

2) For my breast cancer being detected early helping me to avoid radiation (which would
have sped up my lung function deteriation)

3) That my nephew Morgan returned from his tour of duty in Iraq SAFE & SOUND!!!!

4) For my augmentation therapy being approved by my health insurance provider( I was so,
scared I would have to pay for it w/ money earmarked for a healthy home
[http://www.healthhouse.org])

5) Believe it or not the astronomical OT I've been receiving lately that is helping me pay
medical bills that keep popping up from this last summer

6) For out of this world friends, family & neighbors!!!

7) For being able to attend the alpha1 retreat this last spring and the national alpha1 convention
where I learned a lot more about alpha1 and care/prevention of deteriation of my lungs

8) For still being able to bicycle or walk w/o supplemental oxygen

I can go on but, I need to get some shut-eye. I've had no upper respiratory infection since shortly after the Hike For Healthy Lungs....with adequate rest I have high hopes of keeping it that way!!

Happy Thanksgiving!

Books, Brakes(breaks) & ATTmosphere

What a combo, huh! Well, everybody knows Katie LOVES books(Thank You Mrs. Deeg whereever you are...last I knew was Chattanooga,TN). Mrs Deeg turned the hatred for reading Mrs. Frieberg created inside out! She turned me onto "The Boxcar Children" and I went from a 5th grade reading level to a 12 grade reading level in a little over 3 years. I also gained a beyond 12 grade comprehension level! I bought the book Too Big To be Small But, Too Small To Be Big and the Bible(KJV).

When I was in college I made a commitment to read 3 pages a day(well sort of...it all averaged out)...one day I think I only managed 1/4 or 1/2 a page...a lot of begots(sp?). It was actually really interesting. There are a lot of great stories(parables) in the bible. My favorite is King Soloman's Wise Ruling(I Kings Ch 3 vs. 16 - 28). Back then I found Genesis & Psalms quite boring. I guess I've become more tolerant w/ age as I don't find them so irritating! I am happy if I read 1 page of the bible a night right now!! I don't read as fast as I used to. Plus, I'm extremely tired. I don't turn down OT or much voluntary OT.

Breaks(brakes)...what's that about? I was told doing rotor brakes was much easier than drum brakes...NOT!! I wound up calling a farmer friend of mine over to help when I attempted them. We proceeded to break the corners of the star bit off and ruin a 3/8 socket rachet. After getting only 3 - 4 bolts loose he concluded I would be better off putting it back together and letting an automechanic work on them...I agreed. However, I was thankful as I suddenly have the opportunity to work all kinds of OT!! I now have paid 2 different automotive shops to fix my brakes. One did the front and another did the back.

ATTmosphere which I believe is a division of Aralast or at least somehow related to them is for all Alpha1 sufferers..not just Baxter/Aralast Patients. Jules from there advocate program was an absolute godsend. She helped push through self- infusion w/ my health insurance provider. I have been so frustrated w/ Homecare. I have had 2 successful self- infusiopns in a row and have been able to have my infusions at a consistent time! Plus, it saves about $8,000/ yr insurance cost. I don't have to worry about procedure not being followed properly..I. E. no Benadine(sp?) used before insertion of needle or no small bore attachment being used or worse yet overall procedure & common sense not being followed/used.

Although, I am not likely to post much for the next 3 - 4 months(busy schedule) life for the most part is going in the right direction.

LIFE IS GOOD!!!

I Never Noticed....

I never noticed the stories about cancer survivors or transplant recipients till I was diagnosed with cancer this summer. Well, actually I did but, they didn't effect me like they do now. Granted I've always felt like I was a caring sensitive person who tried to help people... but, I never used to get this emotional. Did I mention tears run down the outside of my face when I read remarkable survival stories???

I just got done reading the Len Geiger story in the Sports Illustrated archives. I think it was "the life of Reilly" archives. Anyhow I sat next to Len Geiger one of the two award nights at the National Alpha1 Convention 2007. I didn't really know who he was then but, I can tell you two things: one he may still be a salesmen but, secondly and more important he totally and completely embraces life!

Augmentation, Work & an Orphan

Well, I am on my third nurse from the homecare outfit. I handed her the procedure sheet for Zamaira and she didn't even look at it. She said "Let's get started mixing it!" Can you hear me groan? Given my record of blown veins. I told her "No, you get that started(my IV) and then we mix. The mix goes bad after 3 hrs!" She didn't follow procedure. She asked me when I switched from Prolastin to Zamaira. I had to tell her I've always been on Zamaira. My sister uses Prolastin. I called Accredo afterwards to speak to the top boss. I told her what had happened and she didn't sound any happier than me. She didn't know that they were changing my nurses. I then asked her "How much trouble will I get in if I do my own IV?" She said "Sue felt you were capable of doing your own just make sure you soak your hands in as hot a water as you can stand 10 minutes before you try to start your IV." I also happen to know that a hot shower before hand helps equally as well(that's my sisters preference).

Now on to work. I worked 55hrs last week. We lost power for 1.5hrs tonight so, I expect to work 55hrs this week. I may even be working 50hrs a week well into the new year. They just introduced a new window product line that has been well received but, we have bugs to iron out and production to catch up on. I am hoping for a non-windy & non-rainy day to do the brakes on my pick-up....but, I may have to pay my mechanic to do them at the rate I'm working!

The orphan was a 3 -4 week old kitten. It was the cutest most lovable little guy. Some people should never be allowed to have animals...what a cruel thing to do to a kitten not weaned yet!!

I came home last Thursday and I heard this horrible meow. I thought "Oh, NO! I've accidently run over one of my cats." It turns out that it was an orphan kitten but, I couldn't get close to it till Sunday. Once I could it clearly had eaten food that didn't agree w/ it's system. I was able to grab the kitten and bring it inside. I had bought premium milk replacer from the vet earlier in the summer to feed 5 kittens of one of my cats who was killed. I was able to save 4 of the 5 kittens.

I started feeding the orphan milk replacer w/ a syringe. That didn't seem to sit well w/ it so, then I had gotten a free can of cat food in a bag of dry cat food and I decided to try that. Yesterday morning I realized that wasn't the ticket either. I then gave it pepto bismo. Now to some of you that might sound outrageous but, I have friends who dairy farm and they keep that on hand for their cows w/ upset stomachs. No farmer wants a milk cow to get a DA. The kitten spit out most of it. I went back to feeding it milk replacer and I thought as I left for work he'll probably be dead when I get home from work....If he isn't I'm going to call him "Lucky". To my surprise he was still alive and felt stronger when I picked him up. I thought we've got this licked. By the time I left for work this afternoon I thought he wasn't long for the world so, I tried to make him as comfortable as I could. When I came home he had crossed the rainbow bridge. I do wish I had tried to feed him pepto bismo again but, I didn't think I had gotten much if any down him. Though I didn't save him...at least I know for next time.

Although, I accept I can't save every animal it's never something that doesn't still bum me out. I worked for a guy named Duane 20yrs ago out in OK. As we were gathering cows for milking he said to me as we were walking, "It took me the longest time Katie, to realize I couldn't save every animal. You have to accept there will always be some no matter what you try you will lose. I always used to think I could save every one of em."

So, I'm a busy little beaver, who's a little bummed, very tired and a little bit cranky!

One Foot, Two Foot

I stopped over in Bruce tonight to eat and I started talking to one of the owners. She didn't know I had cancer earlier this summer nor did she know I had this alpha1. She asked me with my health condition was marriage possible for me. We then launched into a discussion about intimacy.

We can either tell ourselves we can only go one foot or.....we can tell ourselves we can go two foot. As an Alpha I choose to believe I can go two foot. I'm too scared to sell myself short because I know others out there will out of concern for my welfare. I have on ocassion sold myself short though. It's usually in terms of relationships. Every now and then I tell myself that I shouldn't date and I can come up with one of the longest lists in the world.....then I'll wind up reading an article like the one I read in a pamphlet I recieved at the Hike For Healthy Lungs. It said even when you have COPD(alpha1 is a form of copd) intimacy is still very doable....then I think "Why you smuck! Well, of course it is!!" Or I'll read an article about a couple that marries even though she is on oxegen. It still happens folks! Love knows no boundaries. And...Yes, by most married folks standards(and some singles)....it's still a wonderful thing!

The same holds true for exercise but, I'm really good at telling myself I can go two feet when everybody else tells me I can only go one foot. There are days when I can only go 1/2 foot, other days I can go 2.5 feet but, most days I go somewhere in between(usually 1.5 ft) The days I exceed expectations are the days I savor & relish!! They are absolutely AWESOME !!

It's flu season again!

I want to remind newly diagnosed alphas out there that it's very important you get your flu shot yearly and keep your pneumonia shot up to date....if you don't you can be declined a lung transplant. It's equally important to keep on your maintenance meds as well! If you do not keep using them you can also be declined a lung transplant last time I read up on it. If you can't afford the maintenance meds let anybody & everybody know...you'd be surprised how others will help you find a way to get you the meds you really need. I haven't gotten my flu shot but, it is very much on my wish list of things to do!

I've been working unusually long hours and have had some personal matters I felt compelled to attend to. I just went into urgent care today. I was put on a course of 5 pills of 500mg azithromycin and a second course of prednisone.

I can't hardly wait for this next paycheck to roll around....I can renew my Body Shop membership and start reconditoning my body. Then it's onto setting up my Gary Fischer bike up on my Kurt Kinetic trainer so, I can begin training for the Team Alpha1 Lake Front Bike Trek next June. WooHoo!!

I also think I wouldn't mind taking a stab at "The Dare" or "The Horribly Hilly"!

That Darned...RoadID!!

I got that wristband type RoadID...and I've taken it off to wash it,take a shower or something and not put it back on my wrist/on my person someway before I've left the house at least three times already!! I think I need to get a shoe type RoadID pretty quick!

Drum roll, pleeeeease! "Big Tony" is on board for the Crazylegs health walk with Michelle, Marilyn & myself this coming spring. GO, TONY!!

BTW, Marilyn....Tony says you're the bomb! He's very excited that you agreed to do it and he'll get to see you!!

Just call me froggy!!

Well, I returned to work Wednesday and clearly wasn't really physically ready. I was still running a low grade fever. My boss asked me if I was free to go back to work with no restrictions....I told him that's what the paper says. I went to SDL and one of the ladies over there said that I didn't look so good and said I could sit down doing one of the jobs over there. There were a lot of people out sick with respiratory bugs/flu. They were very glad to have a warm body into work!

WOO HOO!! I had a successful infusion Wednesday, too!!! On the first stick no less!

Becky came over to SDL(from my normal work area) Thursday and made the remark: "Katie, you look so much better than you did when you first came back to work. When you first came back to work you looked so woreout like you just couldn't get back into the swing of things. Haggard." So, I guess between all the stress, others with respiratory bugs and the 2 weeks of missed infusions...It all caught up with me.

Now back to the title! I sound froggy, raspy and am still coughing a good bit. The coughs are still wracking my body but, not like they were earlier in the week. I used two vacation days to make up for the lost time and worked voluntary 10hr shifts(9 hrs was mandatory) to offset vacation pay(which is 8 hrs a day no matter what shift you work) and hourly losses earlier in the week. We are on mandatory 10 hr days this coming week which I am eternally grateful for.

I also have thought to my self there is a lot of alpha1 knowledge I have that I haven't placed somewhere in my blog and wonder what people who read this would like to see....I just want to make it better and help empower other alphas in their fight for quality & quantity of life!


IF THERE IS SOMETHING YOU'D LIKE TO KNOW...POST IT IN MY GUESTBOOK!!!

(Along the sidebar on the right )

Pennies from Heaven, etc.

Last Thursday was pennies from heaven day since my health insurance company reapproved my augmentation therapy.

Although, I didn't get to spend as much time in Chicago as I would have liked....I still enjoyed it!! There's a kind of energy or vibe down there I always sense. I ate my heart out seeing all those sailboats out on the lake during the Hike For Healthy Lungs. It was beautiful sailing weather Sunday in Chicago. It was a real treat to meet Mr. Mary(Todd) Pierce. It turns out he use to be into sailing so that helped ease the pain of not being able to be out sailing. I was able to discuss sailing.

I've come down with a lower respiratory infection and have been put on really strong medications(levaquin & prednisone). This respiratory infection is as bad or worse then the one I acquired during Strictly Sail. I expect I picked up my respiratory bug from "Junebug" at work. I had originally thought it was a changing of the seasons/pollen issue. I've used 2 vacation days so far because I am sick. I ran almost 100 degree fever yesterday that finally broke this morning. It sneaks back off n' on though. It's definitely not as bad as it was yesterday though! I feel really lightheaded and wrung out. At least I'm still having a conducive cough, though. Every alphas worse nightmare is an unconducive cough!

I get another nurse from Homecare to help with my home infusions. My insurance company doesn't want me to self infuse. The case worker doesn't see how it's more convenient but, is learning going somewhere to have it done is no cheaper. As much grief as this is all causing me....I'm to the point I'm ready to switch over to prolastin at the first of the year and have it done somewhere such as a hospital or clinic. I've spent 3 months fighting the good fight and I'm tired of it. If I lived in a more densely populated area I think this situation wouldn't be playing out this way but, I'm just to far out in the middle of nowhere for accredo nurses to serve me. Every augmentation therapy has it's pros and cons....don't let any drug rep fool you. You have to weigh them out for yourself. just like when you go shopping for a car. I did not choose Zamaira for it's "purity". I chose it because it took less time to administer and it didn't need to be refrigerated. I wanted to learn to self infuse so I didn't have to miss treatments when I traveled and so I didn't have to drive out of my way for treatments(spend $6 in gas a week). Plus, it would have saved approximately $8000 /yr slowing down reaching my medical spending cap.

I have been drafted for a Team Alpha1 bicycle event the first week of June down by Lake Geneva. My friends Michelle & Marilyn have agreed to do the Crazy Legs health walk with me next year. Maybe even my buddy big Tony might even do it with us! Henry "9 lives" Eckert has agreed to do the Madison Paddle & Portage event with me. I just hope he remembers that I don't have as robust a set of lungs as he does when it comes time for the portage aspect of the event!!

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!

Sailing Is Awesome!

I didn't know what to expect. I've driven a big twin engine motorboat on Lake Superior when I was 11 & 12. I grew up snowmobiling & motorcycling. I've downhill skied, cross country skied, ice skated, water skied, roller skated, roller bladed, showed and rode horseback. It was like every fun & exciting thing I had ever done in life wrapped up in one sport(after I got beyond fearing we would capsize every time the boat would heel). I just can't begin to describe it. It's magnificent, exciting, relaxing, invigorating. It's just totally amazing! When class was over I didn't want to leave the lake. As we were heading for the slip my instructor said "I didn't know how I was going to teach you when you told me you had problems with wind. Then I thought maybe I could relay it to you. And then I thought...Wait, she said she had just completed a 38 mile bike ride a month ago! She'll be fine."

It was a good thing I did though! I got to my truck, looked at my face and thought to myself....You're gonna pay girl! I had remembered to put sun screen on my arms but, not my face. I didn't pay too much in spite of indiscretion, I guess it mostly was due to the wind.

I've been really tired lately. That's why I haven't posted much. I am glad my appointment with Dr. Krowka is coming up this Friday. I also have a mammogram scheduled(I had one scheduled in Rice Lake but, forgot about it). I begged his secretary to see if I could at least get one taken because if it's part of my schedule of appointments at Mayo I won't forget! I also have a PFT and a chest x-ray scheduled. Hopefully he will be able to determine more than the Marshfield Clinic doc's in regard to what's going on with my lungs. I just can't believe that the heat & humidity is what's causing my extreme tiredness. I was forgetting ready about & helms a lee towards the end of the sailing class and had to pull over to the side of the road and take a power nap at Poskin. For about the last 2 months I've gotten about 1.5 - 2 hours down the road on a trip and become so tired I had to pull off the road to take a power nap.

There will be no Alpha-Pack support group started in Eau Claire as had been mentioned in the past...at least for a year. At this point I'm not even sure I want to be a support group leader. I have become increasingly frustrated/irritated with the politics of many in the alpha1 community. I just really feel I might not have the temperment needed for such a position of support group leader.

Holy Moses...Basic Keelboat Is Upon Me!

My instructor assured me he will work with me and I WILL LOVE sailing!! I am also going to see if I can figureout how to download digital pictures from my 'puter! One to prove I actually DO live in the biggest small town in Wisconsin and to steal some verbage from someone at the 16th Alpha1 convention...I clean up WELL!!

Well, I am at least starting to get this picture download stuff. There are some other pictures included. The first two pics I think you can figureout! The the third picture in the first row of pictures is (from left myself, I think Jan, Johanna(my sister) and Karis (Crain???) a CSL Behring sales rep(OK). The two group pictures are who's who pictures. The first one in the second row is the Alpha-Pack. The second picture in the second row is a combination of one of the leading doctors in Alpha1 research(I want to say doctor "Sandy" or Dr. Holloway), Jennifer Bauernfeind board members of Alpha kids and Judy Golding(one of something like 8 null/null's in the US as well as a member of the Alpha-Pack BOD) and a CSL Behring Alpha1 support rep Jack Pierce(IL).

Update: Scenic Shore 150

I am still taking pledges online via active.com. I have also been busy beating the bushes the old fashioned way. I am truly astounded at the generosity of the people I live around! I liove in the poorest county in the state of Wisconsin and not one person I approached has turned me down. That either means they have known someone affected by Luekemia/Lymphoma or they really like me....either way it is heartening!! I am certainly not done yet...I've only asked half the people I planned on so far.

I do however wish I was more attentive to my spelling as I have noticed many typos that there was no excuse for. I. E. where instead of wear .

GRR! GRR!

The 16th Annual Alpha1 Conference

They said it was the second largest attended Conference. I was thrilled to meet Mary Pierce. For those of you that are not affected by Alpha1....Mary Pierce is one of those more widely recognized folks in the Alpha1 community. Last I knew she heads the Team Alpha1 program and is a alphanet coordinator. Team Alpha1 is a program put together to encourage alpha's to participate in athletic events to raise awareness and/or pledge money for the alpha1 foundation. She mentioned something about me becoming a mentor but, to tell you the truth I'm intimidated by it. I just kinda do my thing and try to encourage/educate others with/about alpha1. She gave me an a team alpha1 t-shirt that has info on the back which I can where in my walks. She wasn't sure if she a had a bike jersey that was in my size but, we were both hoping she did so, I could wear it instead of my Rosie The Riveter jersey!

I attended the Lung Healthy Home breakout session. I look at my home so totally different than I did before I went. I can honestly say none of my family(or me) is really enthuisiastic about the farmhouse I rent...the 40 acres I wanted to put off buying till I had over 50% of what I needed to buy it and build a house on is no longer an acceptable benchmark. I am so intent on living in a handicap friendly lung healthy home I'm willing to stick my neck out and try to buy that chunk of land next summer. I've eyed that quietly on the market 40 acre parcel for 3 years now. If it still there next August 1 and I can buy it...I WILL HAVE a healthy handicap friendly home!!!

Somehow I also have to get money together to go back to college to get my bachelors degree. I need to get off the floor of the window & door factory I work at!! Better yet, I need to get out of there to a better paying job in a lung healthier enviorment!!

I talked to Judy Golding about my shakyness(is that a word???) and she told me to lock my hands together across my chest and pull them away from each other as hard as I could till my fingers hurt and afterwards my hands shouldn't shake for at least 30 seconds to a minute...long enough to calmly insert a needle in a vein!

I also had to laugh....my sister Johanna spent a good 5-10 mintues argueing w/ Karis(a pharmaceutical rep who sat with us the night of the awards dinner) over the fact that she WAS NOT Stubborn...she was DETERMINED! Ha! WE are ALL both at any given time!

I was encouraged today when I received my infusion. My nurse(thank you God for not making me play musical nurses!!!) commented that my hands weren't shaking like they did last week and that maybe by the time she & her husband take their vacation by theirselves/for theirselves I will be independent. WooHoo!!

I definitely need to get out more!!

I managed to forget what room I was in. I thought what do I need an ID for? I shocked one of the clerks at the front desk when I told her I don't normally stay at a place this fancy and I hadn't flown in 7 years. I was fortunate the lady that checked me in recognized me and gave me a new key card. I felt like a complete idiot!!

I went to a hospitality room and walked in and saw only wine bottles and suits....I decided I didn't really fit in(I was told I didn't have to dress up till Saturday night). I walked in the Hilton gift shop here, saw all the Washington DC stuff and it finally hit me I am in a very historical part of my country. Had I realized that I think I wouldn't have balked so about using another vacation day.

I looked into room rentals at the Red Roof Inn for Strictly Sail in Chicago and realized I won't need to save as much money as I thought I would. I want to do things way different this year. I want to park/stay at a place down near Navy Pier and take a taxi back & forth. NO, Cumberland parking ramp, Schiller Park Motel 6 or CTA. I gotta protect my lungs. I'm really looking forward to Strictly Sail. It's only 8 months away! I plan to take a vacation day on my B-day so, I can hopefully get before rush hour in the afternoon so, I don't get clobbered(although, I still suspect I will get clobbered anyhow)! Since I won't have to save so much for SS I plan to take a day off and go down to Chicago this summer for a 3 day weekend. I want to do that loop architectual history tour, Shedd's Aquarium and the Art Institute. Plus, whatever else I can sqeeze in!! Either end of July or beginning or end of August.

I also got my Rosie The Riveter sleeveless bike jersey ordered! Having a bikers short sleeve jersey tan is worse than a farmers tan!

What's with the bike, Katie?

That's what the owner of the sawmill I used to work at asked me up at the bank. I told him it was for my lungs and to loss weight. It's not working very well though. He said "It will eventually if you stick with it!" It's a lot more though. It's a become a great stress reliever. It's an opportunity to meet different people and educate them about alpha1. I have been feeling bad because I just haven't been able to get bike time. I did get some bike time in earlier this week. There's something about feeling the wind in your hair!

I haven't been posting for a while because the two culprits we alphas all resent: fear and anxiety mounting in me. I just just couldn't get into a possitive groove. It crested and subsided a couple of days ago. I finally realized: It didn't matter if the rest of my garden didn't get done this week...I've gotten it in later than next week and it did just fine. I can always make oak leaf wine next year and I got one of my clients lawns mowed. I've been fighting the rain but, we have really needed it! Now, I feel like I'm back on track. The augmentation therapy is helping me feel more energetic and my memory is improving, too.

Lucky 7 ...Have Fun! Have Fun!

Is it lucky? It's been 7 years since I flew. I haven't even flown on one of my BIL's planes. It was kinda cool. I used to go visit my Mom at her winter home in Sun City during February years ago. Now,

I'm heading to Alexandria, VA to attend the National Alpha1 convention! Compliments of CSL Behring. I called my sister Mary last night about my flight numbers. She kept telling me to HAVE FUN!! My nurse Sue said the same thing yesterday morning. HAVE FUN!! I keep thinking "Gosh, I hope I learn something new OR maybe I can meet a new alpha with a new story to tell about them and alpha1".

I feel sooo blessed to have Sue for a nurse!! Her boss isn't real thrilled that she is still seeing me instead of me playing musical nurses. I asked her if she got paid for doing some of the things she does for me and she said no. I then asked her what made her do what she did. She said "I'm good at finding veins and I find my work rewarding." I thought what great thing to be able to say when your our age! We aren't sure if I can do the inserting the needle to start my infusion because my hands shake so much. I am going to put off taking my combivent next Thursday and see if that helps.

School Days,etc.

As some of you know I had returned to college last fall for the first time in 14 years with intentions of being on the eight year plan. I then withdrew for the spring semester I signed up for because there was the threat of involuntary layoff, I was pretty wore down physically and getting sick. I had also decided that I should go back to college when I get put on disability. It would give me something to focus on besides my imminent death.

We are working 40 hr work weeks sporadically and the thought occured to me "What Color Is Your Parachute....if they lay you off?". I have since decided if I can somehow come up with the money to take 3 credits a semester I should try to do that since I know there are several medical/pharmaceutical companies that like to hire Alpha's.

I told my Chicago clients this might be my last year mowing their lawns but, on the other hand I also told them every year I swear is the last and I'm still doing them 3 years later! Nine credits a year isn't a lot but, over time it may prove very beneficial to me. I also know there are a number of essay based scholarships out there for people my age listed on Fastweb and I think I should attempt to complete them. Nothing ventured...Nothing gained!!

F.A.Q. Influenza & Pneumonia shots, LVRS and Lung transplant surgery

I am posting this because the first Pulmonologist I saw after I was diagnosed with Alpha1 (by a family practice doctor) didn't bother to tell me if I didn't get a flu shot every year and I believe it is every 7 years for a pneumonia shot....I could be declined a lung transplant. Also, the lung transplant age cut -off is 65 years old.

It is not the end though!

There is also a procedure called lung volume reduction surgery(LVRS). From what I know you don't want it to involve laser surgery. There is a Dr. Hassler associated with Froedert Hospital that uses Dr. Cooper's staple and glue method which has been succesful. I have seen it first hand via my sister Johanna & Noreen James. Not everybody is a candidate. Most Alphas lungs die from the bottom up but, some die all over. There was a pretty rigourous series of tests that had to be completed by my sister before the doctor approved...in fact, he had told her no at one point. Then he asked why he should do it. LVRS is not something to be taken lightly!!!

You have homework....

Was one of three things my nurse Sue said yesterday. The other two things were: This isn't going to happen overnight and we will get through this. This was said after I told her I didn't want to play musical nurses and that I had it in my mind that I needed to get self-infusing down in three visits. She does have a 2.5 hr drive from Minnesota so again, I can't blame her for not wanting to spend 5 hrs driving.

They sent a educational folder with first augmentation shipment. Fortunately, as she was paging through it she said at one point: This part you don't have to read because you have a pretty good understanding of this and what it is doing to your lungs(It's not the first time I have heard it sadly enough). I'm kind of an information junky. I think knowledge=power.

I began trying to set up for my infusion by myself. We used a periferial(sp?) something or other but, I think next time she is going to try to teach me how to use a butterfly. I stumbled through the setting out of all supplies needed. I did the mix and plugging in to iv's and switching IV's. I suck at not being careful about sanitary habits! I.E.: pulling out the sticker(don't have the technical name memorized yet!) slowly out of the vial, yet not touching it so I could get all the Zamaira out of the vial into the IV bag. I have to remember to not touch anything that could be contaminated with germs throughout process. If I do, I need to remember to sanitize my hands. I'm learning though! I stopped at the store and bought sanitizing wipes for the house and anti-bacterial lotion for the cabin. I had bought a bottle of sanitizing lotion for the house a month or two ago.

Cory Muller the CSL Behring Sales manager called and asked earlier in the week if I had noticed any difference since my first infusion. I couldn't notice any differences. Pam from Accredo Therapeutics also asked the same thing. Then when Sue showed up on Thursday she asked the same thing. She said we were going to deliver the augmentation therapy at full speed this time. She warned me I might get itchy or run a fever and a couple other things I didn't remember. I got itchy last night and I think I might have been running a slight fever but, for whatever reason today I felt alert and like a million bucks at work tonight! I don't want to get my hopes up too much....but I certainly am hopeful because the last month or two most of the time I have felt like something drug home from the back forty.

I also keep forgetting to comment on the fact that every event I learn either what not to do or why something is done. As Barry Bearchi that sold me my first truck when he worked at Burtness said: You love to hear the good stuff BUT, you learn the most from the bad stuff!

Have a safe Memorial weekend and don't forget to honor our veterans!

I just wanted to share this with you....

I was thinking today at work how sometimes I'm really tired, sometimes I feel like I've got myself really together and other days I feel like an emotional basket case. I have read many posts on various message boards by recently diagnosed Alpha's. Many times in caps the title reads: I'VE BEEN GIVEN A DEATH SENTENCE!

Well, I am here to tell you...you are not alone!

You have not been given a death sentence!

You have been given a life sentence and you may very well have a large quantity of quality of life left in your life. USE IT WITHOUT RESERVATION!! My healthy friends always keep telling me "I could walk out the door and be hit by a car today, Katie!" I have to tell myself sometimes: I have alpha1...that's it.

For those who are spiritual people or those who think they might like to pursue such things. I thought of a very close friend who is a deeply dedicated Christian who showed me something/told me how to deal with burdens on our hearts about 20 years ago. You may laugh. I know I did then but, it actually does help! She said that we need to quit carrying the burdens on our hearts and give them to God. Then she proceeded to give a demonstration of pulling those invisible burdens from her heart and lifting them up and throwing them up on an invisible shelf(think out of reach so you can't take them back). She then proceeded to say sometimes I have to do this twenty times a day because I keep trying to take them back! I encourage you who are overwelmed by your alpha1 or just plain lifes issues to try this method of dealing with your burdens.

Everything Isn't Always What It Seems...

That big honking box with augmentation therapy and equipment to administer it is only for a month...not 3 months. : (

I also foundout that: a) I have good veins b ) the Accredo nurse likes me but, it's too long to drive(which unfortunately I agree with) c) will be replaced by a nurse from Lakeview homecare{Rice Lake,WI}. I am not real thrilled about it...but, don't have much of a choice and I sure don't want to put the screws to the nurse who works part-time because she wishes to be a hands on Mom. I happen to think hands on Moms are cool!! My Mom & a couple of my sisters were, as well. An involved Mom cannot be beat, IMHO. I had hoped I would have more times to get the infusion process down. Now, I HAVE TO in my minds eye get it down in two more infusions.

What I did learn is w/ Zamaira after mixing the powdeed product w/ the water it is only good for 2 -3 hours. I also learned you cannot vigourously shake it or the pontential for destroying it!!

Woot!! I gotta Brag!

Although, I didn't do the original 60 miles I signed up for I did complete the 38 miler in 5.5hrs. I remember Noreen James telling me she didn't expect me to finish and I told her " I might not finish first but, I WILL FINISH!!". I decided to change to the shorter course because I wasn't able to train consistently.

I would have gladly traded the smell of fresh cut grass, flowers and suntan lotion for more wind at the beginning of the trek. It was kinda tough on my lungs. We had plenty of wind throughout the trek! It was interesting....sometimes the head wind on hills benefited me and other times it hindered me. I tried to keep myself hydrated which I suck at under any circumstances! I also tried a Mango flavored gel. They have 100 calories. I tried to avoid the fresh baked goods at the rest stops because I figured they were largely made up of processed ingredients and would be harder for my body to utilize. It wasn't great but, it wasn't horrible either.

I did pretty well until after the last rest stop. I got about a mile into the last leg and the roads were such that they were energy stealer's(if you do any amount of bicycling you'll understand this). I pretty much"hit the wall" and kept pedalling. I just knew if I stopped pedalling I would never start back up to get back to Palmer Park. The last leg(10 miles) took 1.5 hours to finish. Once I got back to the bike trail every time I came to a crack or a bump I would "post"(it's something you do when you ride a horse English...basically lift your butt up) because my butt was sooo sore! I'm sure my Terry Damselfly bike seat was better than the Bontranger seat my bike came with. I had adjusted it three times since I first time I put it on. I was told not to do drastic adjustments or it could hurt my biking quite adversely. I'm hoping I only have to adjust it one or two more times. I also decided I am going to get a side view mirror for my helmet after all!

My sister Johanna came down to support me and try to spread the word about alpha1. Somebody asked me about whether I needed my inhaler like I did at the third rest stop and it opened the door for me to explain a little bit about alpha1 as well as the benefits of biking for my lungs. I also want to say that the smell in bathrooms at Big Hill park are worse than that of our two holer at the family cabin. OMG!! I don't ever want to use that bathroom again as long as I live!!!!

This was my first trek ever and I gotta tell ya....bicyclist ROCK!!! A couple of times when I wasn't in respiratory distress a bicyclist asked if I was ok. I got a lot of compliments on my Curious George bike jersey as they passed me. I do envy them for being able to bike and talk at the same time. I heard a lot of good mornings, hi, how ya doin',passing on the left and encouraging comments about the hills(either it's almost over or were on the downhill end).I also got an email from Ed Brailey(board member of the alpha1 association) saying he was tryng to get the Leader-Telegram to do a story on me in conjunction with my RCU charity walk.

Guess What....I didn't cry!!

It was no where near as scary as I thought it would be. Accredo Therapeutics sent out a nurse that was really cool and kinda near to my own age. The toughest part was watching the needle be stuck in my hand. I can remember bits and pieces of what she told me and did but, it's gonna take a while! She told me of a person so stove up with rheumatoid arthritis their hands were just near balls who self infused and I figure if they could do it SO CAN I!! It took about 2.25 hours but, that included paperwork. They are really thorough! They ask about advance directives, do you have enough money to buy food, do you have fire alarms and a bunch of other things. They ask these questions in our best interest as well as their own. I was surprised to hear that at one time they were giving a fellow augmentation therapy treatment and stopped after six months because he wouldn't quit smoking or clean his house. I certainly don't blame them but, MAN why would you keep smoking and not attempt to clean your home if it would enhance your quality of life and possibly extend it???

Yesterday was a very sad day for me

I received my 3 month shipment of Zamaira(augmentation therapy product) with all the butterfly needle inserts and the sharps container. I didn't expect to feel that sick feeling in the pit of my stomach when I opened up the box and peered in! I realized I hadn't wanted to ever be getting an IV or if I did I expected to at least be 60 years old. I'm 41 and I'll be getting a weekly IV for the rest of my life(unless by the grace of God I receive a lung transplant) or until I can no longer afford it. I get my first infusion today. They are sending a nurse over from the twin cities to assist me until I can get the hang of doing it myself.

I would not be surprised if I did cry afterwords. I'm sure if I do though I'll likely joke with friends that it is because my hormones are all out of wack!