I’m so excited! Alan and Sheera are arriving here Thursday night. So much to catch up on and I’m so glad they’re coming now.
Woohoo! 192 ANCs just reported. Body on the mend. Maybe 420 was too high over the weekend, and I think yesterday’s zero was just wrong. 192 seems right.
I’ve been having terrible night sweats since yesterday – 4 times they needed to change my bedding last night after waking up sopping wet. I know I have some immune system fighting something! As a matter of fact, they took me off one of the anti-biotics but as of today, given the sweats, they put me back on the Vancomycin.
So I’m feeling encouraged today, but know that the ANC number can vary as I start to recover. So don’t expect a steady rise, necessarily; it’ll be an upward trend that we want to watch out for.
I think some of the full force of the emotions around losing my dad finally hit yesterday. I was terribly depressed and sad and crying in the morning. The enormity of it was finally hitting me – not just the loss, but it’s the loss goes on when there are estate matters that need to be settled which aren’t going to be quick to resolve, which means constantly having to deal with the loss.
Then, I had some health complications yesterday. I’ve developed a lump in my lymph node. We’re not sure exactly what this is from, but I have been spiking fevers and there is some pain associated with this growth. The doctors aren’t quite sure what this is from just yet. There could be many causes and we’re monitoring it to determine next steps.
Then, there are some environmental issues. It is 80 degrees F in my room this morning! That’s just totally unreasonable. I just turned the thermostat all the way down – no wonder I’m feverish and sweating. So on top of wacky environmental controls, some brilliant person called last night at 10pm and let the phone ring 15 or 20 times. Let me assure you, that at 10pm at night, I am worthless with the amount of drugs I need to take, and given the pain and fevers from last night, that ringing was more annoying than anything else and I just couldn’t get the phone let alone talk on it. So we’re going to have some new phone rules:
1) Don’t call me after 9pm – I’m taking drugs by then to put me to sleep and I’m physically too tired to have a conversation.
2) If you call the hospital room line and I don’t answer after 4 or 5 rings, hang up – I’m not going to answer.
3) If it’s urgent, call my cell phone and leave a brief message. And speaking of cell phones – since everyone’s using that to call and leave messages, please limit the length of your message; I already have great intolerance for long, rambling messages – please keep it to 10 or 15 seconds at most (Hi, it’s XXX — give me a call back — that suffices.)
I know I’m in a bit of a cranky mood today, but I’m terribly uncomfortable and just need a little respect on the phone side of things so I don’t look at it as a curse but as a blessing to keep in touch.
Thanks, strength and love,
I know it’s been a while since I wrote last. It’s been a very difficult week. I cannot begin to explain what it’s been like getting through my father’s passing while still on chemo. It took every ounce of strength I had and I was so weak at the end of the last round. I had no ability to manage any of the details, no capacity to really talk to anyone but my mom, my brother, my sister-in-law and my uncle. And just my physical energy was so sapped by the jumble of emotions, I all but slept through the past few days.
But on Monday, I came off of the second round of chemo. Instantly, my strength was back. Night and day. Not all of my strength – both mentally and physically – but substantially so. It was amazing. Almost like switching on a light bulb. And then the enormity of my dad’s passing hit hard. We organized a gathering for the hospital on Wednesday. It was small and private with my friends giving me an opportunity to best observe shivah as I could, while also observing certain rituals.
I was out of bed yesterday for several hours – first time that had happened in weeks. Probably too much time out of bed because today I’m exhausted. I feel feint like I need blood. But hydration and eating sugars are helping but I’m still a little on the weak side. I can’t even make a lap down the floor today. But getting up from my bed to the chair I’ve done a couple of times and I think I just need to do things slowly. So I’m going to rest today, get back my strength, and restart doing laps around the ward tomorrow.
Enough of an update for now. Will write more tomorrow – I promise – so I can get back in to the routine.
Thank you for everyone’s emails and comments and DVDs and books and magazines. It’s making pass the time much more enjoyable.
Strength and love …
My hair is falling out, my counts are low and I’m getting a little more sluggish. I’ve been in touch with some long-lost friends and distant family and it’s all been helping. For the first time, the weather outside (frigid today here in PHL) seems to have seeped into my room a little and I can feel a little bit of a chill — or maybe it’s the lack of my hair.
So my brother is in town and I can’t wait to see him. He’s going to get typed and cross-matched as a possible bone marrow donor (but that’s still several steps away).
Allison, the dog sitter, told me Voodoo is sneaking onto furniture during the day and we have to do something about it. At first, Allison wanted the crate, but given Voodoo’s age and the trauma of this switch right now, I didn’t think that was a good idea. I suggested we put a sheet on the furniture for now, and I just saw a training blanket that let’s out a high pitch squeal should a pet venture onto it. So I think I’ll pick up a couple of those for Allison and send them over. Boy do I miss Voodoo though! I wish there was a cancer ward that could accept dogs on-site.
I know I need to plan for a home office for the near future. But I’m giving up on measured drawings. I was going nuts trying to lay things out by the inch or centimeter, but in the end, I know roughly what will fit where and just need to get a desk and some office supplies and bring the whole thing together when I get out of here. I just can’t do that level of planning now, and I certainly don’t think anyone can do it sitting, sick, in a hospital bed.
On the bright side, I got a letter from my insurance company that I’m being covered so far for my stay which is an enormous weight off of my shoulders. I never really needed insurance before, and boy, now I am very grateful.
I bought tickets for my mom and her sister to hear Gil Shaham play with the Philadelphia Orchestra at the Kimmel Center last night. My family has been so good to me and I wanted to express my thanks.
Many people have asked if I have a portable DVD player … I do. Others have asked what DVDs they could send. This is really the best way for me to pass the time – it helps to conserve my strength and is entertaining (don’t worry, Kip, I’m still working on getting up to speed on the DS Lite … thank you very much … but games require attention span which waxes and wanes with me during the day). And as much as I like watching movies, I don’t really collect them, but with the limited video resources here, I’ve compiled a list of DVDs that I would like. It’s at Kaboodle, and please use their reservation system so if you decide to send me something I won’t end up with six copies of the same thing. The list can be found here: http://www.kaboodle.com/sdpalmer/dvds.html?showAll=true (link opens a new window).
Thank you in advance. And please …. keep those photos coming …. as long as I still have wall space, photos are welcomed (even when I run out of wallspace, the photos will still be welcomed.)
So at first my mom was taking care of me and running home to take care of Voodoo. We got a dog sitter – highly recommended – here in Philadelphia so Voodoo’s taking a little bit of a vacation. At first, I was worried that she wouldn’t remember who I am when I get out of the hospital, but as my family reminded me, my cousin’s dog remembered my cousin after she spent 6 months hiking on the Apalachian Trail. I’m holding out for the best.
The dog sitter told me Voodoo’s already scoped out a comfy spot on her bed and was licking her hands as she made pulled pork sandwiches. Good Voodoo! I did, however, warn the sitter that Voodoo is a “counter terrorist”.
This is my favorite picture of Voodoo that my good friend Emily took this past summer on her deck.