|Brian Cole made this for me!! It is called "Stem Cell" Notice the jail cell he made for the stems. Brilliant!!!|
We made it through the winter folks! I remembered thinking way back in early December when I started this whole process that I was grateful that I'd be going through this during the winter, and how wonderful it was that I would be coming out of it in the Spring. Spring is a time of rebirth and growth. It makes me happy. And that is just the kind of medicine I need right now. I need to remember though that Spring means growth...it doesn't mean grown.
Mom has been keeping a journal on her calendar of everything we've gone through since starting this journey at the bone marrow clinic in January. She read it to me today as I was lying on the couch completely exhausted and wondering if this was ever going to end. After she finished reading off every day for the past two months I thought, WOW, we have been through SO MUCH. It is really unbelievable. She's even been noting things like if I've walked for the day, or if I've gotten blood products, or even if I've done a happy dance, or worn a bra (finally put one on on day 8 at the hospital...we saw it as progress....), or felt an interest in playing words with friends. (She is probably going to write down that I wrote a blog post today, because I haven't felt like doing this in a long time).
So, let's start with the good news. I am out of the hospital and my mouth sores are all healed. Hallelujah!! I haven't been on pain meds since last Friday. My labs look better than they have looked in a couple of months!!! My absolute neutrophils, a sign of how well my body is engrafting the stem cells, look great, within normal range. All of my red blood cell markers are normal...meaning I am not anemic...something I have been since starting ICE back in December!!! My white blood cells are hanging in there....waivering between normal and just barely low. Platelets are normal and growing in number everyday. My liver and kidney function are normal. The clinic has decreased my IV fluid to one bag instead of two, meaning 3-hours less in this clinic everyday. The best news is that we hear I might start going to every other day starting as early as this Friday!!!
So we are making good improvements.
I need to keep reminding myself of all of these improvements when I start to get down about the things that aren't moving as quickly as I'd like. Namely I have no energy. Zip, zero, nada, none. I sleep all the time and when I am not sleeping I feel like doing nothing else. I am walking a mile every single day, albeit very slowly. I've lost 12 pounds since transplant, and while you think this big lady would be jumping for joy, I'd be much happier if it didn't leave me feeling like a shell of a person. My face is sunken in, dark circles under my eyes, cracked, dry lips, no eyebrows or eyelashes. I look rough, and not healthy at all. I started to tear up when I got out of the bath the other day seeing how bad I looked, and Michael told me I looked beautiful. And I cried and hugged him more. And then he said you should have seen yourself last week, you look much better than you did then! haha.
I am not eating very much. My appetite is really poor, and nausea is ever present. Mom and Michael are keeping me eating at least some good protein shakes with lots of nutrients supplemented in them. Michael put a bunch of nuts in my most recent one which was a good idea to get some good protein and fat. They are bribing me...saying if I drink my shake then they will give me a foot massage. And that works :) I am eating bone broths made with love by Pat and Becky whom I am forever grateful for. Mom meticulously froze in individual portion sizes the food that the chef made for me the week of the transplant, so I am trying to get some of that food down, although solid food is a bit cumbersome and I don't have much interest in it.
So I've had a few pity parties the past couple of days about why me and blah blah blah but I cry it out and then move on.
On a lighter note...I am typing this at the clinic and in walks my friend who I met when I first got here. She is a very similar case to me....Hodgkins in the same areas as me, 10 ABVD, remission, and then relapse within 3 months just like me. She is about 35 days ahead of me and today is her discharge day!! She is looking GREAT and says she feels better than she's felt in as long as she can remember. I needed to see that encouragement today. And, I just got my labs back from today and everything looks even better than yesterday. WBCs, RBCs, hemoglobin, hematocrit, platelets, neutrophils, liver, kidney all within NORMAL range!! yippie! So we have hope. My body will catch up....
And lastly, I never posted about my stay in the hospital, but I wanted to send a bundle of thanks to those of you who made the extra effort to make me feel loved. To my visitors, you brightened my day, thank you Linda, Michaelle, Becky, Patty, and Karen and Brian. To all those who e-mailed me, thank you, your letters were read and I hope you forgive me for not writing back. To Metametrix, Amanda and Mark, Bonnie and Rob, Karen and Brian, Deana and Milburn for sweet gifts to lighten the soul. To my women's circle for skyping me in, what a bright shining light in my day. Rin, Chuck and Dawn, your daily check-ins and love, and skyping were so nice and made me feel so loved. I can't believe I lucked out to have such great inlaws. And to my loving parent's who visited, cared for me, loved me, walked with me, kept me company, bathed me (mom), you are the best. And last but certainly not least, my dear sweet husband who suffered three overnight stays with me despite the incessant beeping of the pumps, the constant interruptions, and the hourly trips to the bathroom, you are my light, my love. You worked all day, and stayed with me every night. You have proved time and time again you are in this with me for the long haul and I sometimes feel like I am the luckiest person on the planet that I found you to walk through life with. I look forward to happier times when we can frolic and play and live life to the fullest.
|Karen and Brian's visit :)|