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.

Tuesday, October 16, 2007

Kind of lost track of days...

Sorry everyone! I know the majority of you depend on this blog to keep you updated on my progress, since I haven't been answering private emails and my track record at returning phone calls isn't much better. Although I've been home since Friday night, I haven't felt much like writing--but I do check in for new comments at least once per day, so keep them coming!! Yes, I've become kind of an attention-whore (sorry for any offense, but it's the truth!). Coupled with my lack of energy with little desire to broadcast the dreary details of my daily life, and you have...no updates. Again, sorry!

Okay, I was officially sprung from out-patient care last Friday. I've been home--or more specifically--I've been on my couch, since that time. With the exception of when I am in my bed. I am not napping at all during the day, which my oncologist feels is good. Luckily, I AM sleeping somewhat better at night. Eating is not so great, but I did make myself take a compazine today and actually didn't feel like vomiting my lunch WHILE I was eating it--yay me!! Cognitively, I'm pretty cloudy, meaning I don't always think clearly and I have a hard time finishing sentences without assistance. I feel like my mind is on semi-permanent vacation. Unfortunately, it's been raining like crazy here, so my mind is not even enjoying sunshine while gone...emotionally I feel like I have actually stabilized a bit! Being back with my family is at least helping in that area!! Lots of other lovely side effects too, like the feeling my gut is being ripped from my body, diahrea (however that is spelled), numbing/throbbing in my hands and feet, and little motivation to do much of anything seem to top the list--but at least I've got my health, right?! I sure hope so!! Which reminds me, anyone who plans to spend significant time around me this winter may want to seriously consider a flu shot since my own immune system is too young and fragile to be able to accept the immunity from a shot. Guess we'll see who wants to hang with me this year!!!

So, the plan for the future...my oncologist (onc) wants to see me "perk up" before he starts radiation. He will send me to a radiation onc in 4-5 weeks, who will be more specific with me regarding the kind of treatment I will get. We are guessing around 4-5 weeks of daily radiation to my neck and possibly my chest. My onc is trying hard to convince me to get radiation in Omaha, which I can tell you now will NOT be happening since that would practically mean I'd have to live in Omaha for the duration of treatment. No thanks. Especially since each treatment lasts only about 15-30 minutes. I've been a very cooperative patient so far, but I draw the line when it comes to being away from my family--again. With any luck, I will then be done with treatment and "just" be under the very watchful eye of my onc, most likely for a very long time. I have been approved for disability, but unfortunately won't see a dime until the 25th of February. That will obviously make Christmas a little tight at our house, since the electric company doesn't really care about cancer!!! But, we will be together, and hopefully cancer-free, which is way better than tons of presents! Hope this finds you all doing well!!!

10 comments:

Anonymous said...

Thanks for the update sweetie!
The best gift your kids will get this year, as well as your family is that you are able to be with them, and hopefully be getting stronger every day. You still got your mama there? Love you much.

Nik

Anonymous said...

Hey Skye,

Glad to hear you are back home and doing well. by the way I know first hand that the Johnny Carson radiation center at Faith Reginal in Norfolk is a very good one. The doctors and nurses are wonderful there. Take care and see you soon.
Bette

Anonymous said...

Hey Sis!
Thanks for the update. I wish you were feeling somewhat better, but I suppose it is going to be a while until you are feeling well enough to be the pain in the a** that I know you can be. Try to keep your head up. I know the financial stuff is difficult, but don't be afraid to try to work something out. I know from personal experience that some places are willing to work with you if the hardship is for medical reasons. There is nothing wrong for asking for a little assistance now and then.
Anyway, keep fighting and rest as much as possible. Love ya BABE!
Crystal

Anonymous said...

well i guess since your brain is fuzzy I don't have to worry about this being returned marked by that dreaded red pencil (he he). Do you want to play trivial pursuit? Glad to hear that your home and again being the queen of your castle (sidebar - I have a sore throat so don't like the computer). Don't worry about Christmas, If you're on the mend things will fall into place somehow.

Love Starr

Veronica said...

Skye - SO SO SO SO glad to hear you got home on schedule! You're fantastic - I wish I could have seen how happy your 3 gorgeous guys were when you got home!! Your strength WILL return, far quicker than you expect, Skye, and you'll enjoy it so much more for having lost it for a while!
So, our little attention-whore (I like that almost as much as SuperSkye!!, but only almost!) rest, DEMAND attention, hug those boys and enjoy growing stronger day by day - hell, you ate LUNCH today - go girl!!!
Much love and side-effect-vanishing postitive vibes...........xx

laulausmamma said...

Here's hoping that by resting and taking it easy on the couch for a while will help perk you up and boost your energy level. I'm sure once you start eating more that will help also. I'd be glad to get a flu shot if it meant I could come visit you :} This will all be a thing of the past soon enough. You are SuperSkye!

Susan

LaDonna said...

So glad you are home. Sam told me that you had your bags packed and were at the door waiting when they came to get you!
I'm sure the boys are sooo glad to see you. The strength will come, just be patient (yah, sure easy for me to say!)
Anyway, you health is top priority, so do not think about anything else, but getting stronger.
Love ya

Veronica said...

Hi Skye - just checking in to see how you're going. You must be about 1/4 of the way to the magic +100 day by now - see how the days are just flying in!!! ;p Hope your strength is coming back and you're managing to stay infection free...........don't over do it SuperSkye, relax, enjoy your boys and keep us updated with your progress (hint, hint! Only when you're up to it, obviously!) Take care, Skye..........xx

Anonymous said...

Hey Skye, I hope the trip to Omaha went well. I was thinking about you while I worked. Jackson is home sick today (tis the season). So I have a few extra hours at home. Then off to work. Is your mom still with you? I hope so, you sound like you could use someone to help out. I would love to come sometime when we are free of germs! Maybe the boys could play together and we could chat. If you or Scott need anything let me know. Missing you very much! Love Steff and keep up the great work! You are doing an amazing job!

Veronica said...

Just me again - sorry to hear you've got a cold just now. The joys of parenthood ;o)

Take it easy and allow yourself time to rest - I imagine you're not someone who finds that easy but I'm a teacher and a bossy one at that so - DO WHAT YOU'RE TOLD!!

Thinking of you, Skye and really hoping you make the meet at Boston next year :o)...........xx