:: Leslie's Updates > January 2003 - February 2003: Relapse to Second Remission
2/23/03
I'M HOME!!! I got discharged this morning. I am so freaking happy to be at home. I am having sensory overload though - can't get used to the change of environment. I got to watch Trading Spaces this afternoon - I really missed that show while in the hospital. I am so happy to see my dog too. Abbie freaked out big time when she saw me this morning. I think she had given up on me.
They ended up pulling my catheter on Friday as it was starting to become infected. I am glad that I don't have it while I am at home. I can shower freely and I don't have to have a visiting nurse come take care of it. They will have to put a new one in when I go back to the hospital. I still have one black eye and a crusted nose. Larry says I look kinda scary.
I don't know when I am to return yet. I have to see the doctor this week and he will give me the game plan. My sister (the donor) arrives on Wednesday. I can't wait to see her. She has to see my doctor on Thursday for a full physical.
My stepmom, Kate, arrives this afternoon. Can't wait to see her. I will be enjoying the time with her, Heather, and Larry at home. I am also excited to be able to eat. I have to retrain myself - haven't had much besides soup and canned peaches for the last month. It should be a good time. I am hoping to get the go ahead to have sushi from the doc
That's about it. Thanks again for all the well wishes and visitors to the hospital. It means so much to me!
2/20/2003
I got the double-whammy of a whup-ass Euro-cold and the stomach flu, so I saw Leslie only briefly, while I wore a surgical mask, the day I returned from London. I miss her, but worse, I feel horribly guilty about not being there for over a week.
For her part, Leslie is flippin' her wig, figuratively, as well as literally. She was crying this morning because she wanted to be home, so the hospital sent in the psych consult. As you can imagine, she was a wee bit peeved at having been tagged for a visit by the shrink. And she didn't even get the gratification of a good vent session. This emotional counselor was just a clipboard checklist drone who went through the standard "do you feel like it is worth going on" routine. To which Leslie was too demure to shout, "Of course I feel like going on - that's the point! I'm sick of rotting in this place! Let me go on home!"
We are hoping Leslie may be allowed to come home in the next few days. Her blood counts are rising this week, although she has still had transfusions and IV antibiotics, and has been nauseous.
Thanks this week go to my parents, visiting from MI, who shoveled out our house from the record snowfalls, and took care of two sickies.
2/16/03
Sorry for the lack of updates. Lawrence had to go to London, and so did his computer.
I still have the throat pain, but it seems to be getting better. Other infections have hit. I have pink eye and my nose is crusted over red. Very, very beautiful. I can't wait for my white blood cells to come back, which should be any day now. I am hoping to get out of this joint by the end of the week.
Other news: I am bald. It fell out really quickly this time, in almost a day and a half. Of course the hair plucking party might have sped it along. My dad and I pulled off the majority of it in about an hour; a truly unique father/daughter experience.
As it is Sunday, it is the changing of the guard. My dad and his wife have been helping me this past week (Thank you!). Today, Lawrence's parents, Noreen and Sid, arrive to stay for a week.
Mentally, I am quite fed up with this whole experience. It is really though to think that I have so far to go yet with the transplant. i just want to be done.
2/11/03
Leslie still has very bad sores at the back of her mouth/throat, causing intense pain. She can barely croak out a whisper when necessary, and can hardly force down a little jello and canned fruit. The docs have had her on morphine for 5-6 days now. It only kind of dulls the pain, and makes her tired all the time. She is going through a lot of medical tests right now, nothing pleasant. With her stamina extending to a round-trip to the bathroom, she described peeing as a "f***ing Olymic event!" (Sorry, that's the extent of the humor today.) In the last couple days, Leslie's hair started to fall out from the chemo. We would think this is all really, really bad, but we have been here before. And the good news is -- for those of you who know me, I'm not being sarcastic -- she doesn't have any major infections, has been able to get sleep, and has had only intermittent, mid-grade fevers lately. The degrees from bad to terrible are on a totally different scale here.
I have to leave the country on a business trip for a few days, about which I'm not happy. Leslie's dad and his wife are here this week. Her mom spent last week with us, and next week my mom and dad will be coming from MI. So we have a great family support system.
Lots of love and gratitude to everyone sending cards and messages on the guest book and email. All the support really does help!
2/8/03
The mouth/throat sores pain has gotten unbearable. I can't eat or talk (imagine that - me, quiet!). I have been put on morphine which doesn't so much get rid of the pain as make me not quite give a shit. The pain is from what they call mucositis; I guess it is common, but I didn't have it the last time.
Other than that, I am doing well. I'm tired, 'cause I ain't got too much blood, but no fevers for the last few days. I have lost 13 pounds so far. And they say the Atkins diet has health risks.
Some other FAQ's:
Q: Why did I shave my head?
A: It is going to fall out soon enough, so why have bed-head for 4 weeks! (Extensive personal grooming isn't in the regimen here.) And no, I don't have the mohawk; it was just a 5 minute thing.
Q: Why am I not at Sloan-Kettering?
A: SK is in the same neighborhood as my hospital. SK is awesome at solid tumor cancers. However, I don't have tumors. New York/Cornell has a long-standing, cutting-edge leukemia program. This is where I want to be, not SK.
BTW, the roommate from hell was cast from my little slice of heaven the next night as I cheered and applauded. Apparently they found a room for her on the ingrown toenail ward.
2/5/03
The roommate from hell arrived around 1 a.m. Think of an annoying personal characteristic. Now add 100 more. You are starting to get the picture. Remember momma in “Throw Momma From the Train?” That’s exactly the voice and the constantly complaining attitude, with an even worse NY accent. Louder than hell until 4am, and then only louder than middle earth from that point on. The kicker: she is only hospitalized for dehydradation!! Unfortunately, the only bed available was in my room. HOWEVER, she thinks she is the sickest human on earth, clueless to the fact that she is on a cancer ward where there are truly sick people. I wish I had a recorder so I could laugh about it later. The good news is that she is supposed to transferred to another floor at 8 p.m. I am throwing a party. You are all invited.
Still feeling well today (aside from the above thorn in my side), which is weird, but a good weird. An “I’ll take it” weird. Did get my first transfusion today – platelets – as my counts are in the toilet. The doctors are pleased at my progress so far.
Keep good roommate thoughts for me…
2/4/03
Sorry I haven’t updated in the last few days. The remainder of the weekend turned out to be rough. I had horrible fevers. They lasted for about 10 hour stretches with one peaking at 40.9C (over 105F; they work in Celsius here). I was packed with ice and put on a cooling blanket. It was not fun to say the least. I was left very dehydrated, which is what they are guessing might have made me collapse on the way to the bathroom on Sunday evening. Luckily, I didn’t hit my head and I still had platelets at that point. No bruises have developed so far. So I was kept in bed until this morning, when I was allowed to walk all the way to the bathroom again (across the room) with a nurse escort. I did, but then needed an hour nap afterwards to recover. So, to sum, right now I feel pretty darn good all considering, just dog tired.
Bad news with my roommate today, though. She had a cardiac arrest today in her bed. They pulled her out of it and moved her to intensive care. She is only a few years older than me and undergoing the same leukemia treatments. I was glad my brother was in the room with me at the time, because I had to stay put to hear everything. It really spooked me. It makes me realized how quickly things can change. Say a little prayer for Houri.
2/1/03
Last night of chemo!! They usually start around 9pm and finish before midnight. it is really starting to kick me in the pants. The family has been great helping me out.
The nursing staff is really nice here as well. Each only has 5 patients, so there is much more attention. They also work 12 hour shifts, so you get to spend more time with them and develop relationships.
I started switching my diet: soft, cold foods. My throat is really beginning to hurt. I have an array of mouthwashes to help out, and they are working OK.
Many have asked about the donation process. It is a lot nicer than it used to be. They used to extract marrow from the donor's hip bone. Ouch. Now, they will give my sister injections of Neupogen to stimulate her stem cells. Then they will hook her up to an IV and take the stem cells, much like a blood donation. These stem cells will then be given to me in a blood transfusion after some radiation and chemo. Then we wait to see if they start to grow. So it is pretty painless, which I am glad for. Don't want to hurt Heather!
1/30/03
The fevers and nausea have set in. They are also giving me tons of saline to keep the kidneys working.
So right now I look like a sweaty, green moon pie. Very attractive. But the good news is that I am
half way through the chemo treatments.
The transplant coordinator stopped in today. I was excited
to learn that I will indeed get my own room once I move up to the transplant floor, fully equipped with
free tv/phone, dvd, vcr and laptop computer. I guess they have to give you something to do, because
I also learned I will not be able to leave my room at all. This is a bummer. I am a frequent lapper of
the hospital floors. This floor has signed Roy Lichtenstein prints decorating the walls which are nice.
I want to thank everyone who signs the guest book. It is a high point of my day when Lawrence lets me log
in to check them. Haven't got access to email just yet, so I am sorry if there are emails out there in
email wasteland.
1/28/03
I started chemo on Monday. They didn't get it going until about 10pm so I was up most of the night. I had the "C" wrong in the MEC protocol. It is actually ARA-C. I've had ARA-C before. It tends to cause me horrible fevers, so I'm not too excited about it.
My room is nice. Tasteful decor; NO MAUVE!! It isn't a private room, but I have the window side. Nice view overlooking the East River and 59th St Bridge. My roommate also has AML and will be going to transplant about the same time as me.
1/26/03
Haven't been feeling so good today. I think I overdid it yesterday. Kinda in denial about being sick and all. I should have rested after the surgery on Friday. I guess I am finally ready to surrender to being "Cancer Girl."
I was lucky to have some friends drop by this weekend to wish me well. It was so good to see them. Thanks Dina, Neal, Douglas and Kathy for taking the time.
Lawrence had a lot of fun this morning shaving off my hair. He made a mohawk again this year before shaving it all off in a military style. I hope he isn't starting to think of this as our Super Bowl tradition! Here's pictures -- don't laugh too hard.
I head to the hospital tomorrow morning. Starting the chemo right away. I am on a new protocol this time: MEC. It is mitoxantrone, etoposide and cytoxan. I've been told the mitoxantron is cobalt blue and what goes in blue.... should be interesting. I hope this new cocktail isn't too brutal.
I will post the room info here as soon as I know it. Many have already asked what they can do to help. Well... please consider donating blood. I will use a lot of blood products during my stay and it is a good way to give back.
1/24/03
Got the Hickman put in. It's on my right side this time. Whoopee, matching scars! They were unable to get an IV in my arms because my veins are so blown from all the previous chemo. Lucky me, I got to start the procedure WIDE AWAKE. It wasn't until they made the intial puncture in the neck that I got some drugs. And boy did they give me the drugs! I am still sleepy here almost 8 hours after the procedure. I am doing fine, just my neck aches a lot. Hopefully it will be better by morning. My dad has arrived this morning and it makes me feel real good that he is here. I am still, afterall, daddy's little girl.
1/23/03
I go in for outpatient surgery tomorrow to get my hickman catheter put in. This means I won't have to be poked with a thousand needles. Then I get to have the weekend off. I report for induction chemo on Monday or Tuesday (depending on when they can get it scheduled). I will be in the hospital for 4-5 weeks. Then I get to have a week or so off for R&R. We are now about early March. My sister is requested to show up at this time so that she can get a full physical workup. Then they start prepping us both. My sister will start getting Neupogen injections which will make her white blood cells grow like crazy. I will get four days of radiation and two more days of chemo. And then the transplant - sometime in the second week of March. The transplant is basically just a blood donation on my sisters part and a transfusion on my part. I will remain in the hospital for 5-6 more weeks, hoping to finally get sprung by late April.
The whole procedure will be in the Manhattan hospital. In fact, I have been told the patient rooms are unbelievable. They are the former VIP rooms (celebrity rooms) on the penthouse floors with sweeping views of Manhattan and the East River. I am glad it will be so nice since I have to spend so much time there. I bought some funky pjs the other day and new slippers - always need a new outfit no matter what the circumstances.
I am a little scared, but because I have been through most of this before, I know I can handle it. I just can't believe I will be hospitalized for so long!!