This is a blog intended to keep family and friends posted about my progress as I undergo a stem cell transplant to fight my relapse of Hodgkin's Lymphoma.

Wednesday, August 29, 2007

Where the heck have I been?!

Okay, so maybe I'm not so great at this whole blogging thing!!! I am so sorry I haven't updated all of you for such a long time. If nothing else, this certainly should validate to everyone that it isn't just YOU that I've always been terrible about returning emails/phone calls!!! Just ask my mom how many nights she's spent in her life waiting for me to call her when I get home, just to let her know I made it safe! SORRY!!!!!!

Okay, let me give you the run-down. It suddenly dawns on me that I should read my last entry before starting the new one to try avoid repeating and/or forgetting info...well, welcome to my world because chemobrain is all about forgetting stuff and acting like your grandfather repeating the same story 50 times!!!

I have now done two rounds of ICE chemotherapy. I finished the second one last week, with minimal "down time". I was really out of commission until about Sunday, when I kind of felt like I began driving myself out of the dense pea-soup fog that is my brain. I feel good enough, in fact, that I decided to return to work today, and hopefully I plan to finish out the week and work all of next week. Yay me!! Of course, I had my lovely 2 hour meeting with the Social Security Department on Monday. I was able to shave one hour off that meeting due to already having gone over--in painfully minute and elaborate details--of EVERY JOB I HAVE EVER HELD IN MY LIFETIME!!!!!!!!! So, I was thankful for that! Naturally, they can't tell me anything at the end of my meeting regarding my "chances" for being approved, but I will say I will be completely dumbfounded if I am not. I guess I'll find out in a mere four months!

Backing up to (almost) two weeks ago--the weekend immediately before my second round of ICE--Scott and I went on our canoeing/camping trip. What to say about that....hhmm, I had a really good time, but I will likely never go again! We had a good time with our friends who were so kind as to invite us. However, Scott and I had never been canoeing, and we were all led to believe we would have a much more relaxing time than it turned out to be!! I believe the distance was 31 miles, and we were fighting winds (which caused significant white caps on the river) for a good majority of it! Some tears were shed, some tempers were lost, but I am proud to say I did succeed in rowing a majority of the way. Scott and I needed help from time to time, and I simply ran out of energy with probably 1 1/2 miles to go, but I definitely found out how to tap into my inner strength! Even though it was not the ideal "getaway" I was hoping for, this trip was very significant to me. It taught me a great deal about myself and my relationships with others, discover strength I never knew I possessed, allowed us to reconnect with some good friends, and gave Scott and I a chance to think about something other than cancer! I wouldn't have traded it for anything, so thank you so much Tawyna and Adam! (Just don't call about doing that again or Scott may file for divorce!!)

Okay, enough for my introspective moment: here's the skinny on upcoming events! I go back to Omaha on September 10th to do bloodwork, PET scan and CT (of only my head and neck--no barium sludge to drink--YIPPEE!!!!!!!!). On the 11th, I meet with my oncologist (10:40am, CST if anyone wants to send good thoughts then!) to find out if I am in remission. If I am not, I will go into my third round of ICE, then determine if remission has been achieved. If I am in remission, I will then proceed to the transplant portion of this double-feature (triple feature, if you count radiation!). I will update in more detail on that when I know more, but basically it follows like this: several days of Neupogen shots to "pump up" my white blood cell counts; one to several days of being hooked up to an apheresis machine to "harvest" my bone marrow (I believe I need a minimum of 5 million to be "successful", which can take several days but I'm shooting for ONE--any bets?!). All of that is done on an out-patient basis, but the next part is when I start my long hospital stay.

Shortly after harvesting my stem cells, I go into the hospital for 6 days of high dose chemo called BEAM, given twice a day. We start counting with -6 and count forward--Day 0 is the day I get my stem cells back and we count the first 100 days as the most crucial. I will stay in the hospital for 3-5 weeks, all depending on how well my immune system bounces back so I don't die when a child sneezes on me! (I'm only half joking about that!!) The good news is that I learned during my last round of chemo that, assuming my children are healthy, they will allow them to visit me occasionally if I feel up to it!!!! YAY! That was good for my soul to hear, although I have purchased two web-cams to try being technologically advances with my pre-schoolers! Scott does not have much vacation time, so when I know when I will officially be in the hospital, I will be welcoming visitors. I know I would appreciate it, and Scott would be more "at ease" being at work if he knows I am not completely lonely.

Okay, I really feel like I've rambled on forever here. Guess that's what I get for waiting three weeks to update everyone! Scott and kids are doing pretty well. Both boys are officially in pre-school now and seem to love it! My mom has become my live-in nanny and tends to scrub bathrooms too, so you can't beat that!!! Having mom around has made things SO much easier, so thank you so much!!!!! (Her name is Terri, so you know who she is when she posts comments here!)

Okay, really gotta run now!!!!! Love to all!!!!!!

12 comments:

Veronica said...

Hey Skye - just want to remind you that you ROCK! I guess you know that already, but just in case.....!

Can't believe how well you're doing! There will be plenty Scottish-Highland-Fling-Dancing vibes winging their way to you for remission!!

And Terri - you're the kind of 'mom' (we call you 'mum' in my part of the world!!) everyone should have.........scrubbing bathrooms is the most loving gift a mother can give her daughter, whether she has cancer or not!!! I'll have to get mine onto it!

Much love and respect...........xx

(and no apologies for lack of updates - you ARE otherwise pretty busy, you know, with canoeing, work and CANCER-KILLING..........xx)

Anonymous said...

Skye, Here you are apologizing for not updating sooner with all you are going through and how long was it before i posted my 1st comment?! Boy am I embarrassed!!
I am Really glad to hear that it wasn't all bad news that kept you from posting!! Of course, like your mom, I can't help but worry about you!
I would LOVE to have someone clean my bathrooms, but if I have to get cancer in order to get that, I guess I will Gladly do them myself!
As for Terri...I have always known she's the best! Somehow she manages to be wherever she is needed and never complains. God Bless You, your mom, and your families. We Love You..Connie

Kelly Kane said...

Skye thanks for the update! I'm glad your mom is helping out with things, I'm sure it helps to put your mind at ease (and you get clean bathrooms!!). Ya know what I was thinking, if you want, I could update your blog for you when you're in the hospital -- we can chat on the phone and you can give me the low down and I can post for you if you're not feeling up to it - of course, you'd have to be up to chatting-- anywho, just throwing it out since I know you have so many folks worried about you and checking in. Oh and I'm glad you're keeping busy at work, you're a rock star!!

Please let me know if there is anything I can do!!
XO

laulausmamma said...

Hey Skye ...glad you got around to updating your blog. So glad the 2nd round of ICE was doable. I'm so relieved for you....and glad to hear you felt well enough to go back to back to work too. I admire your spunk! I know you'll remind your forum friends of the scan date in Sept so we can do the cheerleading we do so well.

I'm housesitting for my next door neighbor who has at least 5 tomato plants that I get to collect from every day while they're away for 2 weeks. Brought a big bag full of tomatoes and peppers for them to share....nothing like fresh veggies. Rich is tired of marinated tomatoes so I'm not making any more of that receipe for him. What do you do with all the jars you put away...sauce??

You are one of my heros.....xoxox

Anonymous said...

Hey hon! Can't wait to see you this weekend. Your Godson is so big you won't believe it!! I am ready to be put to work, do some casseroles up for you, or just plain hang out. Since I will have my 2 youngest, we probly can't go out and party... bummer! Your mom scrubbed the bathroom so that is out, aw darn, I really was looking forward to that, hehe!

Love you very much, I am so proud of you for dealing with all this like such grace.

Nik

Anonymous said...

I meant WITH such grace.

Anonymous said...

Hey big sis - we are all glad to hear that you are doing so well. I honestly thought you were sugar coating how you were feeling, but when we talked last night, I knew you weren't.

Keep putting mom to work, because I know how much it means to her to be able to help out. Besides, I think she missed cleaning bathrooms (LOL).

Keep up the positive attitude, and we will all keep up the prayers. Douglas wants you to know that he is always thinking about you, and he hopes you feel better soon. Claire probably isn't thinking about you (more like how she can catch that crazy dog), but I know she'd give you a sloppy kiss if she could. Kevin and I are always thinking/praying for all of you too. Please let us know if thereis anything we can do to help you out.

Take Care! Love Ya Babe!!
Crystal

Anonymous said...

Skye-
so glad to hear from you agein. Your crazy ol'uncle (yeah, he is old now, had a birthday and can't call me his ol'lady anymore, since we are same age agein!) think about you and admire you.
To be honest, I don't want to MOVE to Nebraska, three years there was enough, but I would love to live closer to you and your family.
(and by-the-way your Mom is GREAT, can't wish for a nicer sister-in-law).
Love
Leena

shugar said...

Hey girl! Left you a message on your mobile. I had no idea you are facing this crap again. I'm still living in the "hood" - Dundee that is. I've got plenty of time on my hands because of post chemo health problems, I am unable to work. If you would like a visito - just gimme a call. Good Luck sweetheart, I'm totally thinking of you. Donna Kelly

Anonymous said...

Skye
Just wanted to let you know that you are a true inspiration. Just hearing the word cancer is scary enough and the very idea of canoeing (forget it), but look at you tackling both at the same time! wow! You are a true fighter and you can beat this! Love ya and will keep praying for you!
:)

Anonymous said...

Wow, maybe it's because I don't have Internet and very rarely get to a computer, but I had no idea you weren't keeping up with the postings. Stop apoligizing for it dear, I know that it's just a means of making it easier for me to catch up.

I can't believe you canoed for 30 miles. Ever since Jason got that canoe I think we've maybe gone a total of 10 miles (in about 5 years) perhaps it's because I can't swim and don't like bugs. Very impressive none the less.

So do you have plans for when you are a prisoner? Can we send you things like books, crafts, puzzels, naked pictures of Johnny Depp (I know you don't like Bruce like I do), etc.? Or does the hospital frown on pornagraphy?

Take care and keep plenty of ice cream handy.

Starr

Anonymous said...

Hi Skye, I have been thinking of you a lot lately wondering if there is anything I can do. It looks like we won't have a chance to go to lunch before you head off to Omaha which makes me sad. But, oh well, we will do it when you get back! I will definatley be visiting you in Omaha so have Scott post where to see you and any other information. If you need someone there on any certain days or times, please let me know. You know how I love to have an excuse to take time off to go to Omaha! Keep up the great work! And sorry that you can't make it to the party. Definately the next one! All my love, Steff