Thursday, August 30, 2007

black bears, black squirrels...and health update

I had my 4th double dose of the Gemzar and the carboplatin on Tuesday afternoon....I didn't feel very well afterwards..a lil sick to my stomach.....a lil dizzy....but that was the first time that I had a side effect...with this new chemo cocktail..not bad huh?? I still managed a dinner out with just my Jim...by the way during my vacation up north I cooked and ate like a feind...gained 4 damn pounds back....a Woman with cancer still has issues with her weight...we are a strange lot aren't we? lol lol lol

Ok, now for the serious stuff....tumor markers up both times YIKES!!! New tests are being ordered as I type.... a ct scan - c/a/p (chest, abdominal and pelvic) with and with out contrast....can you say YUM on the orange flavored Barium??? PUKE! lol lol lol And I personally think something is going on in the brain again...since middle of vacation...small seizures have returned and I haven't had one of those since first being diagnosed with breast cancer.....so new Brain MRI too.  Such is life huh? Hair is still MIA but I still don't give a rats butt! lol lol lol....late night drive, moon roof open, my favorite guy sitting next to me....then ruined completely when I'm hit in the head by a bug or pooped on, either way I didn't want to know what hit my head! lmaooooo!

Now On to more serious business..... I brought along a whole list of questions for Dr. Serious...here is how that went down.

Can I take a multivitamin...yes

Fatigue meds?...Yes  (Thanks Mary) (Provigil)

Leg weakness is unbearable.....Thinks it's the steriods...being weened off of them, being put in a rehab program since once again I wiped out..this time in the chemo room....legs just give out....I'm so graceful...just like a swan huh?? Lmaoooo....A lil worried about my left arm.  I had 24 lymph nodes removed from there and now that I partially blocked my fall on that arm I'm a lil worried about Lymphedema 
:(

VIP QUESTION......
Am I ever going to be eligible for stem cell transplant or a bone marrow transplant..now according to
Dr Alexander Hantel, MD
Medical Director Oncology Services
Edward Hospital
Professor Of Medicine
Division of Hematology/Oncology
Loyola University Stritch School of Medicine

Neither treatment has helped with Breast Cancer Patients...its more for cancers of the blood....Since I will never be curable only treatable as a life long cancer patient this isn't an option. Anybody have a different opinion on this one or been told the same thing?? Appreciate any and all feedback.

I will find out about new tumor marker test results tomorrow and I have to have the other tests run within 3 weeks before my next visit with Dr. Serious....They are sneaking me in early for both tests....I think by the middle of next week.... and rehab starts the week after that...they wanted me to do chemo one day then start rehab the next day...new girl behind the desk......sorry new girl I need a day or two to bounce back! lol And did I mention I keep getting lost in my bedroom??? 15 years same house, same bedroom, chemo is hell on the mind and body...Jim hears me bouncing around sniffling, getting ready to lose it and rescues me from the master bathroom, the closets, and the hallways.....dangerous for this lil weeble that falls down! lol really hating this tri-level about now..........gonna get a slip and slide for the two main hallways! lol lol lol and then some kind of pulley system to go back up....they give me a walker....when I have 2 staircases......walker is wider then the stairs! lol


Enjoy your weekends and your family.....time together is so precious!

Love,
kim


Now real black bear paw print? Or clever 15 year son tying to freak his momma out?? lol



And is this not the cutest little black squirrel you have ever seen??? LOL



They want me to start physical therapy ASAP, I can't agree fast enough! I have to build up my own strength again..to get back somewhat of my old life (come as I go, do as I please) Since I seem to fall about once a week....they gave me a walker....we are having a pig roast at our lake this weekend .....maybe I'll take Gramma Annie on in a walker race! I'll give her the outside edge for a lil momentum! lmaoooo

Saturday, August 25, 2007

Back From Wisconsin a day early...finally dealing with the tears.

This has been possibly the most emotional week of my life....416 days into my cancer diagnosis and I  am finally falling apart...Hayward Wisconsin was wet....fishing so-so....I had one evening on the boat alone with Jim when my 15 year old son called on the walkie talkie to tell Big Jim he had a tick embedded in his stomach and that he can feel it moving around.....Jim's best advice slather it with Vaseline...the head can't hurt you from what I understand the toxins are in the body....with vasaline it suffocates them...so they try to back out themselves..so we turn the boat around after maybe an hour of fishing (me no such luck! fish wise)(lol)......wasn't a tick after all it was an itty bitty leach...pick your ick factor! lol.....Jim was able to roll it up on a tooth pick and flush it away.....I never got back out to fish....something humiliating about trying to crawl in and out of a boat on all fours.....not sure if it's humiliation or humble pie......I basically cried all week........several times a day.......but when I read about Mother Theresa having to fight her own doubts after living what she has lived and seen the suffering she has witnessed I don't feel so conflicted between the whole religion-evolution as I AM very sure so people many do. I do believe in a better place than here....I have had family members cross back and forth before their last breath to share what they have seen....that itself is a true miracle! To me Mother Theresa is already a Saint........she took on the needs and roles far too many people were to afraid to take...........CAN YOU SAY ANGEL WHO ONCE WALKED AMONG US???

I didn't get out of the cabin as much as I liked...my legs are still giving me a lil trouble....but since I have been sick and haven't done hardly any family cooking I cooked up a storm in that cabin....I promised Jim I would gain 3 pounds I think he gained 12! lol....since I don't own a scale I will have to wait till Tuesday to see if I hit my goal....I'm still on a low dose of steroids so I have been eating a lot in the middle of the night...Jim said,"I don't care what time you eat just eat!" lol

I'm a smart woman, I know I'm a smart woman......now I have to get passed that stubborn Irish woman and maybe it's time to get a second opinion.....huh Mary?....I'm starting to wax and wane with this treatment of my cancer.  Jeanne that book you sent me on HOPE OR WAS IT FAITH? (SORRY CAN'T SEEM TO REMEMBER AT THE MOMENT) The Author beat terminal stage 4 breast cancer after a rough spell trying to get her insurance to pay for the bone marrow transplant...The Insurance actually didn't want to pay because after all it was "ONLY BREAST CANCER"..that book made more sense to me than "THE SECRET" which did NOTHING but repeat what every other Author who was in the compilation of that insane book trying to sound like they came up with that term themselves!  Anybody else with me on this one???? lol lol lol

Just what is the criteria for a bone marrow transplant anyway...I have numerous cancer tumors on my spine, my new belly boob, at least one so far on my liver......hoping the Brain tumor has gone for good...a couple on my left leg....I see Dr. Serious Tuesday...I can ask him my many new questions.....This Book that Jeanne sent me....the Author/Patient worked for General Motors....which my Jim does too....and even though her treatment (BMT) and remission and reoccurrence and remission once again....after all Ford has done for Breast Cancer Awareness (WARRIORS IN PINK) and you can bet if General Motors even tries to shy away from covering a bone marrow transplant if I need one to kill off this cancer once and for all....ohhh am I gonna get loud! LOL LOL LOL...Hence the name DEMANDNLILCHIT!!!!!!!   I have no doubt that if I do need a Bone MarrowTransplant that my insurance won't let me down...if that can cure me or put me in remission then theybetter give me a chance at it or this 5'00 foot Pink Warrior is really gonna get her Irish Temper in a twist! lol

I am very grateful for everything they have done for me...excellent benefits...maybe $300 out of pocket on co-pays total for Specialists and medicine co-pays...forover a year...But I know I am worth much more than a car, an SUV and a truck and I am pretty sure my Husband, children, friends and my J-land-family will agree.

I was able to get out for a long car ride and did get some amazing wild life shots...give me some time and I will post them on "Photographic Memories" Blog soon (found on top of side bar)

Again the tears I have cried in no way compromise my strength to do my best and beat this beast and have the rest of my HAPPILY EVER AFTER........DAMN IT!!!!!!!!...........LMAOOO!!!!!!

Friday, August 17, 2007

Bald Eagles,Northern Lights (some Corona lite beer too) lol and Bears! OH MY!

WARNING!!! HALF FINISHED BREAST RECONSTRUCTION PHOTO WITH VISIBLE OUTSIDE TUMOR......NO WORRIES IF YOUR A BOOB MAN! LOL LOL LOL LOL! WELL, ACTUALLY A NEW BOOB MADE OUT OF PART OF MY BELLY.....BOOBBELLY MAN??LMAOOOO


 


Computer is back and running.......Yipeeeee!  As promised I wanted to show what a tumor that is visible from the outside of the body looks like...When I first noticed it, I kinda giggled to myself as I showed Dr. Serious that it looked like my body was trying to make it's own new nipple...only off by an inch and a half to the left of where it should be...even Dr. Serious got a kick out of that and laughed hard himself..the nurses are always so surprised that I get him to laugh so often....(Extremely warped sense of Irish humor on my part! LOL)

So boys and girls..yes even men get breast cancer.......check thoroughly for any lumps, bumps, rippling (which is what my new one has), redness, tenderness, you name it..you see a Doctor about it...IMMEDIATELY!!!!  I did and I also did everything my Doctors told me to do and I'm still dealing with cancer. And even though there have been some rough days over this past year, it really and I mean this truly from the bottom of my heart...it hasn't been as bad or as scary as I thought having cancer would be. I have too many other wonderful things to be thankful to let this cancer get me down. I stumble now and then (literally fall down) sometimes that frustrates me to a tear or two, but most of the time I'm back on my feet and ready to start that step all over again.

In my last posting I hoped I thanked all my prayer warriors, my good karma senders, my well wishers, but I forgot to thank all my Chemo Angels....Jeanne I know your trying real hard to get healthy and lose some unwanted weight but I hope you know girlfriend that what all that is nothing but pure heart!.....you are all heart girlfriend!..and I love you for it!  So many of you brighten my day and I appreciate every gift, card and prayer sent my way!  When I finally beat this beast I will pay it forward....we are all on this earth to make it a little easier for the next person in need whether it be a prayer, a card or a really good hug or even time spent chatting...some people just need to talk and have a sincere ear to listen to them....such a simple gift of the heart.

Have a great weekend everyone.....I'm going where the eagles fly, the northern lights put on the best show on earth....now if the 3 baby black bears stop showing up on the caretakers back porch I might just survive this trip...petrified of bears like you wouldn't believe! But I do still giggle when I watch that old 80's movie "The Great Outdoors" with John Candy....Bear! Big Bear! Big, Big Bear! Big bear gonna get me! Big bear gonna eat me!....ROARR!.....I just love that movie!  If the baby bears do come around you can bet I won't be the one trying to get it on film....I'll sacrifice one of the kids maybe! lmaoooooo




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Thursday, August 16, 2007

I'm doing great! My computer not so well...virus=shop

I'm sorry I haven't posted again in a while...right now my computer has a virus and is at the shop at the moment....some sight one of the teenagers went to...Arghhhhh!

I had another double dose of chemo on Monday and NO FOUR DAY COMA.....I feel terrific! I am nowhere nearly as weak as I was when I depleated myself of food last time  and like I said I won't be doing that again....took a very long time to bounce back from that! In fact I have been haunting the house at night cleaning...strange side effect huh??? lol  Sorry not hiring out at the moment! lol I did mess up on Monday thought, I was supposed to be there at 8:00 A.M. for a Doctor visit, get my tumor marker results, have the chemo but I didn't write down the time in my cancer appointment book and I showed up at 1:30 which I thought was my normal time....thing is Mondays aren't my normal Dr. appointments.....Tuesdays are at that time....Dr. Serious is at another location late Monday afternoons.

They weren't sure if I was going to be able to get the chemo because last time my blood platelets were only 14......but because I had that week break in between and I am taking much better care of myself nutritionally they shot up to over 400....again go me! lol  I'm still having weakness in my legs more than not and living in a tri-level isn't exactly fun right now....I'm doing so much better with this last chemo (Monday)

With it being over a year now battling this and trying to find a chemo that works, then seeming to have to adjust to new side effects, new dosages it seems after every blood test.....I am really looking forward to more of a same old, same old routine.....sometime...maybe.

Well, I just wanted to give a quick update on me and my even sicker computer and I still plan on posting a picture of the tumor visible on the breast they said cancer would never reoccur in...they said no breast tissue.... no more cancer...I guess I will always be the exception to things that rarely happen....like the mastectomy not working, 2 chemos (so far) that worked momentarily then stopped and still crossing fingers that this Gemzar and Carboplatinum is the right blend this time.

I also want to once again tell all of you who have been with me since the beginning of my blog (August-2004) and the beginning of my illness (July 2006) how much you all mean to me....your support, your encouragement to fight even harder and your heartfelt comments do so much to carry me on more days than you will every realize....so many of you call me inspiring.....when it's you and my friends and my family that inspire me everyday. Illness and death are a part of life and come what may I have truly been blessed with much love in my life and love is all I need.....OK, and really good Japanese food once in awhile! lol

I'll update again as soon as my computer is fixed.

Love,
Kim

Friday, August 10, 2007

TGIF!

All my life I have been in control of body...I wanted to do something I did it, without thinking twice....now here I am at 44 and I am no longer in charge of it. I had no idea of how much freedom I really had until I got sick. When I was first diagnosed and first treated with A,C & T chemo I had good days and bad days but my good days let me be the "on the go girl" I had days I could do whatever I wanted to do. Then we found out the treatment stopped working and moved onto a new chemo, I was told that it would be an easier functioning type of chemo but the side effects of the chemo really sidelined me with pain, so back on steriods I went and within 12 hours I was back to being pain free but really too weak to do anything...so now I'm on a new chemo again and I am still not in control of my body....I sleep too much, I eat too little and it seems my will is not my own right now....so damn frustrating.....I miss being able to come and go as I please.

Today was the first time I left the house on my own in over a month even if it was just for coffee, it felt so good to get out on my own, behind the wheel  :) More than anything I want all my strength back so I can come and go as I please....I hope this is the chemo that works and that we can finally get me on a regular schedule so far it's been a year of trying to adjust to something....new chemo's, new side effects...I just want more normal days.

I will be posting a picture soon (kinda graphic) of the tumors that are visible on the outside of my reconstructed left boob. Most tumors are on the inside and you are only able to feel it, but I want you to see what it can look like too. I's so weird to know that here I am taking all this treatment and my body continues to grow these damn tumors! Jim can feel the ones along my spine and said that they are much smaller than they were before I started this new chemo....I just hope this one doesn't crap out on my like the last two...the one on my left boob doesn't look like it's changed much....I'm just hoping for a huge drop in my tumor maker test. (Find out Monday)

I know so many of you that read my blog have either gone through cancer yourself or are taking care of someone who is, so I just wanted to share this new thing I'm going through...loss of freedom and how very frustrating it is for me and that it a new aspect for me to deal with and that the person you might be taking care of no matter what the illness is might be experiencing the same thing but not able to articulate it just yet.

Have a great weekend everybody....I'm going to the lake! And I'm driving myself! lol

Tuesday, August 7, 2007

Hiya!...long time no keyboard! lol

I think might be the longest I've ever stayed away from my blog! I'm still trying to adjust to my new chemo, not as harsh as the A,C and T that they give you when you are first diagnosed with breast cancer but not as easy as the Xeloda. The first week they gave me back to back treatments to get a jump start..that was a Monday, I didn't wake up till Thursday......seriously! Whenever I woke up it was day light but I didn't know if it was A.M. or P.M. I lost 7 pounds in my sleep even though Jim tried everything to get me to eat including calling in the reinforcements! lol Mom, Sister, Brother....2nd chemo was only 1 dose.......not so much a coma that week....still tasted buds are M.I.A :( 3rd week just blood work but they already had to reduce my chemo....blood count dropped enough to warrant it. So I'm hoping by the this time next week I'm settled into a routine with the new chemo/sleep....I still lose my words (very frustrating), I still lose my voice after each chemo session....So just when I start to have some really good days ( bad days aren't bad at all...not sick just sleepy...how hard is that right?? lol lol lol) ..... its chemo time again! lol Other than that we just did tumor marker tests yesterday and I won't know the results of those until next Monday... So once again I throw my faith, trust and hope into a new batch of chemo and hope 3rd time is the charm!

I'm going to be going up north soon and I can't wait!.....Bald Eagles, Northern Lights, friends we only get to see once a year and I hope by then I will regained enough of my strength that I carelessly gave away. It's weird, I've never gone that long without almost proper (I'm bad) nourishment and how fast it attacks the body and the mind...everything gets weak on you, your muscles, your eyesight, your mind plays tricks on you....so many times I thought I heard things I didn't, seen things that weren't there! Some of it was pretty funny but it had Jim worried enough that he took off last Friday because he thought he was going to have to hospitalize me for dehydration and maybe a feeding tube. I'm not going to let myself do that again....fridge is stocked with ensure, boost, carnation instant breakfast and moose tracks ice cream! lol.....vanilla of course!

Well, I'm going to try and catch up on journals....I turned a majority of them off when I was in Kentucky last month so I wouldn't be overwhelmed when I got back and I haven't been on the computer since right before my 1 year anniversary with cancer.......July 27, 2006....I thought I would have a hard time with that, but I didn't, just another day.......besides I have something better to spend my thoughts in.......my wedding anniversary is tomorrow and I have way more than a year to go through and realize all that I have been blessed with.....starting with the Man I married......My Jim....blessed indeed!


I have also been very fortunate to have the best insurance which covers my whole treatment....which leaves me with a trail and error of prescriptions...half used.....so many people could use this medicine....does anyone know a program that will take my old meds and give them to those less fortunate (which means FREE) I know my girlfriend was able to do that with her shots while trying to get pregnant....once she was pregnant they gave those shots to couples who didn't have the best of insurance or who's insurance didn't cover trying to get pregnant at all.....any info would be helpful!


Love,


K.