Heartbreaking news

As I've mentioned before, I have a network of online friends who are all dealing with Hodgkin's Lymphoma. Everyone on the message board (or the "online support group") is fighting the hodge, has been through treatment in the past, or is the support person/caregiver to someone with Hodgkin's. One of the women I have grown closest to~~Anne-Marie Dunn~~has been fighting this disease for several years. It has come to our attention on the message board that she is in hospice care and currently (most likely) in her final hours of life. I have posted a link to her blog down below under "friends I've met along the way", in case you are interested in learning more about this remarkable woman. Please take some time to read a bit of her blog.

I am dedicating this update today to my friend, Anne-Marie, who has taught me that, even if you have been given the dreaded "terminal illness" diagnosis, you can still walk through this life with grace, determination, and an incredible sense of humor. I wanted all of you who read my blog to know about Anne-Marie. This may be the "easy cancer" and I should feel "lucky" to have such a "curable" cancer. This is still cancer--and it still kills people. I just hope to not be one person it kills.

My cold is easing up a bit, although I am on huge horsepill Amoxicillin (875 mg each) pills for 10 days. I still have a nasty cough, but hopefully the meds will keep me from developing pneumonia. I hope you are all doing well and not getting sick from the weather changes.

Cleaning up post-SCT "wreckage"

I titled this with "wreckage" because I spent some time this week trying to get myself taken care of, physically. On Monday, I got an hour long massage (LONG overdue), along with my very first pedicure! I then paid a visit to my chiropractor, who readjusted pretty much every vertebrae in my back. Yikes!! However, Monday night was the first time since I can remember being able to fall asleep without a pounding headache. Gotta get massage and readjustment on a more regular basis!! However, I promptly ended up with a cold which wasted no time settling in my chest. No worries~~I already talked with my transplant coordinator and I have instructions to take it easy and head to a doctor if I have any significant changes or simply don't feel any better by Friday. Luckily, my mom is still living with us and is more than willing to take over the majority of parental duties. I feel like such a slug!

I saw my onc last Friday and had my bloodwork checked. My white blood cell count was 3.7--slightly low, but not too bad. The rest of my bloodwork actually looked pretty good! Seems that I will be heading back down to Omaha around November 13th to meet with the radiation oncologist that they refer all their lymphoma patients to. The idea is to meet with him, ask questions, and generally get the gameplan for radiation treatment. Not exactly sure yet how it's all going to work out, but I will be getting radiation in Norfolk, which is only about 1/2 hour from where I live. Much more doable! I'll definitely keep you all posted when radiation starts.

And, finally, I want to annnounce to my relatives back east that I am (hopefully) planning to make a trip out there in late June-until early July of next year! I am part of an online support group for people dealing with Hodgkins Lymphoma, and a bunch of us are planning on meeting each other in person in Boston next year. I thought I could make a real vacation out of it and visit with as many relatives as I can squeeze in! Mark your calendars for the end of June/beginning of July, and make space on your couches!!!!! I'll let you know when any real plans have materialized.

Well, that's about all the energy I have for today! Hopefully I'll be feeling better soon and be able to post here more often! Take care!

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!!!

Day +14

Well, I am still considered "out-patient" right now, which basically means I am being held "captive" in Omaha still, although I am out of the hospital. My boys and mom all came down to help me get out of the hospital on Monday (day +12), and they were able to spend the night down here before heading back home. We took the kids to a place called the "Pizza Machine", which is kind of like Chucky Cheese on steroids!!! It was such a blast, and even though it was probably risky health-wise for me to be in a crowded place, seeing my kids run and laugh and thoroughly enjoy themselves was the best therapy I could have asked for!! Saying goodbye to them was so hard, but I am hoping to be fully discharged on Friday, with any amount of luck! In other news, I decided to have my Hickman line removed today, since I don't need it anymore and I needed to do something to "pass the time" while still here! Why not inflict more pain on myself!!!!! The actual procedure took about 10 minutes, with absolutely no form of numbing or painkiller involved. A little freaky and a little painful, but it's over now. I am currently enjoying the effects of my Vicoden, and will self-medicate as necessary since I have nothing better to do over the next couple days!!!!

Hope you are all doing well!!! By the way Ladonna, just wanted to clear up a little misunderstanding!! That "Connie" isn't my mother-in-law!!!! She is a friend of my family! The "Connie" you are thinking of usually signs her name as "Mom Anderson". Didn't want to start any nasty rumors!!!!!!

Love, health, and best wishes to all!!!
Skye

Day +11

Alright, I know I haven't been very good about updating all of you, but at least I know my wonderful husband has helped pick up the slack for me. Thank you sweetie!!! Yesterday (October 6th) was our six year anniversary. Pretty sucky that I spent it in the hospital, but I kept my spirits up by sending him an arrangement of flowers (with snack sized snicker bars in it too) knowing that he'd probably get a little bit of hassling from his co-workers. Oh, did I mention that I had the flowers delivered to his work!!!!! That was naughty of me!! He also sent fake flowers to me at the hospital. Apparently they allow silk flowers as long as there's no mossy stuff mixed in.

Okay, in other news, I am getting RELEASED from the hospital tomorrow!!!!! That is Day +12, baby!!!!! I'm pretty impressed with myself, since it's even earlier than I expected (my guess was around day +16). I'll be staying at Scott's cousin's house for my "out-patient" portion of the SCT, but I expect it to be only another 4-7 days, assuming I have no complicating issues. I thank all of you for all the good thoughts, prayers, and positive energy sent my way. I know they all made a huge difference in my being released so quickly and having a relatively easy time with the SCT. Thank you all!