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!!!!!!

Wednesday, August 15, 2007

Back at work!--and other news

Hi everyone!!!! I know it's been awhile since I've updated all of you, and I am really sorry about that. I am happy to say my lack of updates is due to feeling pretty good and trying to get a lot done!!! For starters, my tomatoes are trying to take over my back yard!!! I planted 10 plants this spring, thinking I was going to be needing a "project" since I didn't have cancer to fight this year! Well--that was a thought-out plan, wasn't it!! So far, I have canned 42 jars of the little buggers, but I think I am done now. I still have tons of tomatoes, but have just run out of time to do anything with them. I went back to work this week, and I go in for my second round of chemo next week. (Secretly, my hope is that my tomatoes will be all gone by the time I feel well enough again to do more canning! But don't tell anyone!!)

Yes, ladies and gentlemen, I did say I went back to work--on Monday, to be specific! It feels good to be like a "normal" person again, although I admit I'm not really doing a hell of a lot of work! I've met with a couple clients, mostly to process with them what is going on with me and to refer them to another therapist. That is sad, but I feel confident I am leaving my clients in good hands! I plan to work the remainder of this week and next Monday, then I'm off to Omaha for 3 days of chemo. Yippee!!

I didn't mention the weekend canoeing trip Scott and I are planning to go on this weekend! Before all the "fun" of next week, we were invited by Adam and Tawnya (Scott and I met at their wedding and they were in our wedding) to go on a 30 mile trip down the river and camp overnight! I am so excited about doing this, but am keeping a watchful eye on my health to make sure I am safe to go. For those of you who have been skeptical about how wise it is for me to go on this trip (and I know you're out there!), I really do appreciate that you haven't been too vocal regarding not wanting me to go. Afterall, you all know how stubborn I can be--and this is something I really want to do!

Finally, the big "fallout" of hair is definitely beginning. I started noticing it on Monday and had my next door neighbor/cosmetologist cut it real short yesterday. If there's one thing I can't stand, it's chunks of hair falling out everywhere. So, I'm hoping it hangs on through the weekend (although I plan to wear a big floppy hat during my vacation), and then it gets shaved off--again. Emotionally, it feels a little harder for me this time around. I am confident, however, that when I'm "ready" to shave it, I will be fine. The hardest part for me is actually my oldest son, Riley, who is (and was the last time I was sick) very sensitive about it. He told me last night that he doesn't like it when mommy is sick and he doesn't want me to take the medicine that makes my hair fall out. Damn. There's just no easy way for any of us to understand this crap. Of course, five minutes later, he was happily eating ice cream! See, ice cream does fix everything!!!

Well kids, I think that's all for now! I will try to be more vigilant about updating here--ya know, since I continue to avoid replying to emails! I'm not trying to be rude, but I just know I would feel obligated to respond to everyone's emails and I just don't have that kind of energy. As always, I absolutely love to see when people leave me comments here!!!!! Take care and love to all!!!

Monday, August 6, 2007

Hello everyone! What a nice surprise to log on and see all the comments left for me! You all have no idea how much strength that gives me, knowing people care enough to check out the blog, sometimes leave messages, and even "chew me out" when I don't post on here often enough!! So the big news of the day today is that I almost feel like getting back to work, but I can't until I get permission from my doctor...go figure!! I'm working on getting permission, and don't plan to overdo it, but I definitely need something to distract me from cancer all the time. So, hopefully I will get a chance to get back to work by the end of this week--that's the plan, anyway!

I also stood in line at the Social Security office today--just so I could make an appointment to come back in three weeks to spend a glorious 2-3 hours there, defending why I need to be placed on disability. The good news is, assuming I will qualify for disability (which I should since I'm going into a transplant), I can continue to work with the doc's permission and as long as I feel up to it. I just can't make over $900 in a month--which should allow me to work pretty much all the hours I want since I am a counselor!!!! (That's a joke, people!!) Seriously, though, having the ability to get out of the house and do "normal" stuff until I actually get to the transplant part (probably in early to mid-September) will go a long way in helping me get through all of this.

It just dawned on me that I have definitely made this blog all about me. This whole experience, cancer, has definitely NOT been all about me. I've had the easy part. I have an enemy to fight and weapons in my arsenol. My family and friends, who have to stand by, helpless, have the truly hard part. It can't be easy trying to figure out how to help someone who is sick....does she want to eat, sleep, be left alone, talk about the cancer, talk about ANYTHING else??!! I wish I knew how to answer that question for anyone asking it. The truth is--it changes from minute to minute. What feels like a ravenous appetite one minute is complete nausea the next. Feeling full of energy is absolute and complete exhaustion the next. What I can tell you all, is that I love every one you. Thank you for asking. Thank you for taking the risk of my rejection. Thank you. And please don't stop asking. Even if I turn your offer down, please know that your well-wishes get stored in my chemobrain, so I can rely on your caring when I feel I am too tired to do all of this. I WILL beat this, and the love, caring, well-wishes, thoughts, prayers, and offers for help, is what gives me the confidence I need to do it. Love to all!!

Sunday, August 5, 2007

Things are looking up!!

So, yesterday was pretty much a craptastic day. I'll spare you the details, but will say that I've managed to lose about 5-7 pounds since I first started chemo on Tuesday. The good news is that my stomach is actually rumbling, so I guess I better eat something soon! Too bad everything still has a lovely metallic filmy taste to it!!! Even my headache has died down to a dull roar, so everything is getting better.

I've had my first Neulasta shot (growth hormone to keep my white blood cell count from plummeting), which caused some aches and pains, but nothing like the Neupogen shots used to do to me. I have bloodwork every Monday morning to keep everything monitored closely, then the plan is for me to return to Omaha for round 2 of ICE on August 21st.

I know I've gotten emails from some of you telling me that you are having problems posting on the blog. Maybe try using the "anonymous" option. You can still email me (preferably at but I just don't have the energy to respond to everyone's emails individually. I am really sorry about that, but I'm just not sure how I'd be able to even remember who I've written to, so keeping it simple by only posting here is my best option. I hope that doesn't offend anyone, and I really do love getting email--I just don't want to take the chance of inadvertantly leaving anyone out.

Love to all, and know that I'm doing pretty well so far!