Countdown to BMT!

[squirrellypoo]

Thanks for the sympathy, Ruth. I haven't got that much to lose to go back to my normal weight, really, and once I can start running and lifting again it'll come off of it's own accord, I'm sure.

Great news! The doctor brought me the fantastic news this morning that my neutrophils went up (for the first time ever!) to 0.7 today, which is the highest they’ve been since about February and the first sign that my donor stem cells are beginning to graft and do their job!! And it’s only Day 11!

[Ruth Cuadra]

Fantastic! GO CELLS!

Best,
Ruth

[squirrellypoo]

Good news! I'm typing this from HOME!! yes, I've been discharged, exactly 3 weeks to the day since admission, which just blows my mind! I've got to report in to Outpatients there twice a week, and I've got a dizzying array of medicines to take, but I'm home.

My trend view printout of my CBC is in front of me, and it's really cool...

On 15 July 09:
WBC: 0.03
Hb: 9.5 (transfusions)
Plt: 62 (transfusions)
Neutrophils: 0.02

And then yesterday, 20 July 09, with the help of GCSF:
WBC: 5.36!
Hb: 10.1 (went up on its own!)
Plt: 81 (went up on its own!)
Neutrophils: 4.61!!!

Bad news...
My hair started falling out today. Really disspiriting, since I'd gone past the point where people usually start to lose their hair (2 weeks past start of chemo), so I thought maybe I'd gotten really lucky indeed. But I guess not.

[Hawaii Bill]

That's fantastic news!!!

I dare to say that you'll take the blood counts over the hair! At least for now!!!

Best wishes and aloha!

[Ruth Cuadra]

Wow! We need to patent whatever it is they've done for you and for Vera. Your counts are amazing. The hair thing is always unpredictable. Mine didn't start falling out until about the third week because it's so indestructible. I hadn't even lost it all when it started to grow back.

Regards,
Ruth

[squirrellypoo]

Well, my neutrophils and WBC fell to around 2 (as expected now I'm off the GCSF), but more spectacular is that my platelets skyrocketed to 138 on Thursday!!! I've never had a CBC with them higher than my bowling score, hahah! I mean, this is just jaw dropping, they haven't been above 50 since my diagnosis in October...

And the last of my hair is gone now, so it took less than a week to go from a very thick head of hair to patchy enough that it looked so horrible that I just had my fiance take it all off with the trimmer. He said Sinead O'Conner, but I'm pretty sure hers was never this patchy! We did discover that I've had freckles under my hair this whole time, though.

We ordered 6 rather nice and fun wigs off a Hong Kong-based eBay shop that had a much better selection than most, with more youthful cuts and colours and better quality than the other wig shops we'd seen. So I'm getting some "non-stare" colours - auburn, blonde, and black, and some fun colours, too - red, pink, and royal blue.

But until they arrive, I'm wearing the stretchy teeshirt caps I sewed up and matching them to my (also sewn by me) outfits.

[launch]

Melissa,
I'm so happy to hear how well your doing and you have such a positive & fun attitude! Will continue to keep you in my prayers. You know, you had mentioned wigs. A friend of mine who battled breast cancer purchased a wig before she lost her hair, and went to the hair dresser who normally cuts her hair... and had her cut the wig the same. During treatments, I hadn't seen my friend in a month and she had the wig on, but, I didn't even know it! Amazing how natural it looked! Especially having it cut the same way.

But, the "Colorful" wigs sound like a "hoot".... enjoy your recovery! You and Vera give people so much hope!

Hugs, Cindy

[squirrellypoo]

Launch, your friend had way more foresight than me!! Though I think it's going to be kinda fun to match my hair to my outfits every day!

I had another outpatient appointment yesterday. My Hb fell 0.1 point and my WBC and neutrophils fell slightly again to the 1.5-2.0 range of things, but the real star were my platelets, which jumped up AGAIN to the dizzying heights of 173!!! That's in the "normal" range, woohoo!! I've never seen them so high, and the nurses are thrilled.

But with all that good news, I had a real downer yesterday, too, talking to a guy in the outpatient waiting area who had his BMT one week before mine, and also had a really easy time of things inside and got released after three weeks. But he's taking public transport and going into crowds without masks, eating whatever he wants and not doing his mouthcare regime, being best man at a wedding next week(!!) and saying he'd do anything to not go back into hospital because he hated the food so much. Oh, and he wants to go back to work ASAP. He basically just had the attitude of "oh I feel great I must be invincible". Hearing this so soon after Rob's sister's words of warning, I had to tell him how reckless he was being, but he just shrugged me off. I really, really hope he continues to do well, but the odds are not in his favour, and the whole conversation just left me feeling so sad that he's gone through so much to just throw it all away now... Especially since he mentioned he has little kids (he seemed to be about my age, late 20s/early 30s). What a waste.

[launch]

Melissa,

At least you took the time to discuss your concern with the guy who is taking dangerous "Risks" after a BMT. Perhaps at the time it seemed he just shrugged you off... but, maybe... just maybe... when he's sitting alone at his home later... he'll think back and remember your words of "concern"... and take heed.

Good for you for taking time to talk with him and explain how reckless he was being... In the end... your words may be what saves him...

God Bless you,
Cindy

[JEZ]

Launch,

I really believe that there are many times we act or say something and never know the impact it has on someone else.... thank you for reminding us of that. Melissa, I think that your comments may well have made a real difference... you may never even know it but Rob's experience may change things through us all if we have the empathy and concern and show it to others going thru this like you just did.

JEZ

[squirrellypoo]

I had my first post-discharge clinic appointment today (I didn't see Mr Dangerous in the waiting room, either, despite his saying he comes in Mondays and Wednesdays for bloods). The doctors are all really pleased with my progress and bloods, but want to see the results of my BMB tomorrow before they get too optimistic.

I'm getting sedation for the first time tomorrow for the biopsy as they seem to be getting worse and worse for me - the last one, the Doctor got me so upset beforehand by pushing my appointment up several hours and saying she couldn't wait for my fiance to jump in a cab and be there with me to hold my hand that I ended up sobbing through the entire thing. I find them unspeakably horrible, excruciatingly painful, and extremely drawn out, so I'll try anything to try and deaden the horribleness even a tiny bit.

So I'll be back in clinic in two weeks for the results, but until then, the Dr gave me prescription refills for the next two months, and I was shocked at the size of it all! Three enormous bags full! In the UK, if you're not exempt (old age pensioners, on benefits, pregnant, a child, etc) you pay £7.20 per prescription, no matter how long the doseage. So my bill was a WHOPPING £72. Aye yae yae. So I'm really glad the chemist told me about the NHS prepay scheme, where you can pay £104 for an entire year's worth of prescriptions and be done with it. So I did that today, and I'll get reimbursed the £72 when it arrives.

It does steam me up, though, that even though I've got "pre-lukaemia" I've still got to pay for all my prescriptions, when cancer patients get all theirs for free. So if they'd just have waited long enough for mine to turn into AML, I'd not only get free prescriptions, but have access to personal nurses, masseurs, benefit advisors, support groups, and free money to help out with the costs of not being able to work. As it is, I (and others in the same boat) get nothing. I think it's that there aren't enough MDS cases and we don't shout loud enough to be classified under the cancers, but it still winds me up, especially when everyone assumes every baldy out there has got cancer!

Sorry, rant over. I should probably not post when I'm so uptight and anxious over my BMB in the morning...

[JEZ]

Originally Posted by squirrellypoo

I had my first post-discharge clinic appointment today (I didn't see Mr Dangerous in the waiting room, either, despite his saying he comes in Mondays and Wednesdays for bloods). The doctors are all really pleased with my progress and bloods, but want to see the results of my BMB tomorrow before they get too optimistic.

I'm getting sedation for the first time tomorrow for the biopsy as they seem to be getting worse and worse for me - the last one, the Doctor got me so upset beforehand by pushing my appointment up several hours and saying she couldn't wait for my fiance to jump in a cab and be there with me to hold my hand that I ended up sobbing through the entire thing. I find them unspeakably horrible, excruciatingly painful, and extremely drawn out, so I'll try anything to try and deaden the horribleness even a tiny bit.

So I'll be back in clinic in two weeks for the results, but until then, the Dr gave me prescription refills for the next two months, and I was shocked at the size of it all! Three enormous bags full! In the UK, if you're not exempt (old age pensioners, on benefits, pregnant, a child, etc) you pay £7.20 per prescription, no matter how long the doseage. So my bill was a WHOPPING £72. Aye yae yae. So I'm really glad the chemist told me about the NHS prepay scheme, where you can pay £104 for an entire year's worth of prescriptions and be done with it. So I did that today, and I'll get reimbursed the £72 when it arrives.

It does steam me up, though, that even though I've got "pre-lukaemia" I've still got to pay for all my prescriptions, when cancer patients get all theirs for free. So if they'd just have waited long enough for mine to turn into AML, I'd not only get free prescriptions, but have access to personal nurses, masseurs, benefit advisors, support groups, and free money to help out with the costs of not being able to work. As it is, I (and others in the same boat) get nothing. I think it's that there aren't enough MDS cases and we don't shout loud enough to be classified under the cancers, but it still winds me up, especially when everyone assumes every baldy out there has got cancer!

Sorry, rant over. I should probably not post when I'm so uptight and anxious over my BMB in the morning...

I am so sorry you have to go through that BMB and for all the painful things you endure because of this illness. I will be thinking of you tomorrow... that you would have an unusually easy time of it and experience peace.

JEZ

[squirrellypoo]

Just an update to say that my counts this morning all went up, though only a little over last week's. Still, they're all my own - I haven't had a single transfusion since I was discharged over 3 weeks ago (as opposed to having 2 red & 2 platelets each week pre-transplant)!

Today they were:
WBC: 1.95
Hb: 9.7
Plt: 177
Neut: 1.59

And, on comparison, having the sedative for the BMB really didn't make much difference, except that there were so many nurses in the little room that my fiance wasn't allowed in and I slept at the outpatients for 2 hours after it was over. They said the sedative was supposed to give me amnesia for the procedure itself, but I still remember everything. I'm going to have to decide soon whether it was worth it for my Day 56 BMB... :/

[Beth I]

Hi,

I've had the same experience with BMBs and now have conscious sedation rather than a sedative. I had to put up a big stink, and it took a few times to get it right, but it makes a world of difference - you're actually out, for all intents and purposes.

I wish you much luck with that and with your continued excellent progress!

Beth

[carolyn]

Hi Melissa,
How are you feeling? I am so happy that everything has gone well for you so far Really hope the results from the BMB are good. I have been reffered by my haemotologist at Guy's to see Prof Marsh at Kings. I am really pleased to be seeing her as i've actually never been seen by an AA specialist. I was told they'd probably want to do a BMB on me at King's, I hope i'll have some more answers soon!

Take care,
Carlyn

[squirrellypoo]

I was just discharged this afternoon - I was getting headaches from Tuesday evening that progressively got worse and worse until Friday morning I just couldn't do anything without bending double in pain and clutching my head in both hands. And paracetamol (tylenol) did nothing, and the codeine (60mg 4x a day) they gave me on Thursday did nothing, so they tried morphine in the Day Unit and THAT did nothing so they tried all three together and STILL the headache won out so they admitted me.

The Drs were 90% sure it was all caused by my Cyclosporine (I was on 125mg twice a day) making my blood pressure spike and that caused the headache so they very slightly lowered my Cyclosporine dosage (to 125mg am and 100mg pm), put me on blood pressure meds (Amlodipine), and loaded me with morphine until the blood pressure pills kicked in on Saturday and the headache went away and we tapered off the codeine and paracetamol. Oh, and I got IV antibiotics, too, because that's just what you get when you're post-BMT in lieu of mints on the pillow. Ha!

When the big consultant came round this morning (shame he doesn't do weekends or I'd have been out sooner!!) he was all "what's she on antibiotics for, it was the blood pressure! Stop that!" and I felt smug since that's exactly what I told the nurse two days earlier.

Originally Posted by carolyn

Hi Melissa,
How are you feeling? I am so happy that everything has gone well for you so far Really hope the results from the BMB are good.

Ah yeah, I forgot to report there - yeah my Day 28 BMB results were really good - no chimerism whatsoever so it's all donor cells in my marrow and I actually got to see Prof Marsh for my clinic appt (I saw her the very first time then usually see other consultants in the appts, but she oversees everything in the background) and she's super pleased with my progress.

I have been reffered by my haemotologist at Guy's to see Prof Marsh at Kings. I am really pleased to be seeing her as i've actually never been seen by an AA specialist. I was told they'd probably want to do a BMB on me at King's, I hope i'll have some more answers soon!

Hey that's great news! I really like Prof Marsh - she's an academic mostly interested in the research side of things so be prepared to recount your entire life story in extreme detail in that first meeting but she REALLY knows her stuff. Case in point - at my last clinic appt I saw one of the consultants and complained about my overly sensitive hands and feet hurting from just grasping door handles and walking on carpet, and the consultant had never heard of such a thing before. I mentioned it to Prof Marsh and she instantly said "oh that's Cyclosporine - if you can live with it, it's best to keep the dosage as high as you can tolerate". So even if you don't see her every time, rest assured she is still following your progress and playing "puppet master" and guiding your treatment at the team meetings they have all the time.

Oh - and for BMBs at King's, they never say it, but if you want sedation (you're still lucid but have temporary amnesia, though for myself it didn't really work very well thougth others swear by it) you have to ask for it over the phone when you book the appt. They do them in a separate room so you can scream your head off, too.

I'm in the HOP Day Unit every Monday and Thursday morning if that corresponds with your appointment. Just ask the nurses to point me out, I'm pretty sure I'm the only post-BMT Melissa around there.

[squirrellypoo]

GUH. I was home for less than 36 hours! Then I got a fever and headache and nausea but the morphine actually worked on the headache this time, thank god and they brought the fever down. But they had to do a lumbar puncture (spinal tap) today to try to determine the cause of the infection. And the LP was a piece of cake compared to the bone marrow biopsies I've had to endure so that wasn't as bad as I'd remembered from the one I had ten years ago.

Anyway I may find out tomorrow what it is and exactly how long I'll be in, but they're thinking maybe meningitis or listeria now, neither of which is as bad as they sound as all of those bugs respond well to tons of antibiotics. They didn't find any live bugs in my spinal fluid, they're assuming because I had the preventative antibiotics last weekend (grr) which may make identification really difficult. But I'm hoping the antibiotic course won't be too long this time since it's so concentrated - I had three separate IV AB drips before 9:30 this morning!

I feel much, much better right now, though my back is still a bit sore from the puncture yesterday. But it's bad timing as my mom's flying back to America tomorrow after spending the whole summer with us, so now she's pretty distraught. It's not like I planned it this way!

[Vera W]

Stay strong, One day at a time!!! You are in my thoughts, Vera

[carolyn]

Hi Melissa, how are you feeling now? best wishes for a speedy recovery from the infection. Stay strong!
Carolyn

[squirrellypoo]

So I've officially been in this time for longer than my actual transplant, guh! The results were never completely conclusive, but they're calling it suspected meningitis, so that involved a 15 day course of the strongest antibiotics known to mankind (+ iv aciclovir and a much stronger antifungal, then tons of mineral ivs since the antibiotics were leaching out my magnesium, calcium, phosphates, potassium, etc). So I've been hooked up more this time than during the transplant, too.

But what bothered the drs is that I still continue to have a low grade fever and mild headaches despite being pumped full of the above, so to try to find the source, I had 2 lumbar punctures (spinal taps), a chest xray, a ct scan, an MRI, an echo heart ultrasound, and, lucky me, my day 56 BMB during all this, too. Bleurgh.

But they found absolutely nothing wrong with me and the antibiotic course has finished so they're letting me go home today or tomorrow since I'm local and they can't do much about the fever and headaches whether I'm here or there! So I'm fine with that!! I'm getting really sick of being in here and just want my own bed and my own food and to pet my cat.

[Birgitta-A]

Hi squirrellypoo,
Good that you have managed to overcome the complications in connection with the SCT!

Wonderful that you can come home to your own bed, food and cat. I have two blue persian cats (mother and daughter) that I love and who love me but since I had neutropenic fever Sept 2007 I have a mask when I groom them and mask + gloves when I clean their litter box. I try to avoid all kinds of infections though I take Neupogen 2 injections/week for low white blood cells and the counts are normal with that treatment.
Kind regards
Birgitta-A

[squirrellypoo]

Good news - they let me go last night! The big consultant said they're still not sure precisely what I had (meningitis is their best guess), but they are certain from the 2nd LP that whatever it was, it's all gone now. I'm just so happy to be back and even doing little things like making my own meals. I was just getting weaker and weaker in there having everything done for me...

Oh, and Brigitta, I'm really lucky in that technically the cat is my fiance's, so it was part of the deal that I never have to deal with the litter or hairballs or anything, even before I got sick. So of course, the cat takes a shining to me, who only ever just rubs his belly and scratches his chin, heehee I make sure I'm in a different room with the door shut whenever the litter tray is being cleaned - I don't want anything airborne drifting my way!

[Beryl]

Hi,
I've just been reading your posts. You sounds good. I hope things continue to improve for you!
Take care,
Beryl

[squirrellypoo]

Thanks for the encouragement, Beryl!

Shortly after I wrote my last post on Friday, the registrar rang me at 1pm Friday to say that in Thursday's chest/abdomen CT scan, there were some shadows on my liver showing a possible infection and that I needed to come in for a review and likely admission. Well, having been home for half a day, I hung up the phone and just sobbed, then had to repack all my hospital bags again, and by the time my fiance came home from work to drive me in, I was strung so tight you could've played me like a violin. Then we spent two hours waiting for the registrar to get out of a meeting, which I spent getting even more and more worked up while I constructed every argument in my head for why readmission was completely unnecessary. Luckily, the first words out of her mouth when she came to me were "We're not going to admit you." Apparently her meeting was with Prof Mufti and he overruled her, and I'm going to KISS that man next time I see him! And he essentially had the same arguments against admission that I had...

So I'm getting a second liver ultrasound tomorrow morning (they gave me one about 3.5 weeks ago after some abnormal liver blood results but found nothing amiss), and they've referred me to a liver specialist, but I don't think they're going to find anything - I haven't had a fever or a headache since I left hospital, which makes me think that either the superpowered antibiotics/antiviral/antifungal I'm on took care of it, or it was stress related from being stuck in hospital for that long.

But it's not all bad news, take a look at my blood counts from this morning, OMG!!

WBC - 6.12
Hb - 9.8
Platelets - 245
Neutrophils - 4.47

The Hb is still refusing to budge, but holy cow, the others are the highest I've ever seen them, and that's without any growth factors or magnifiers or anything!!

[Ruth Cuadra]

Those counts are amazing! I didn't have anything close to that for years after my transplant much less at Day 68. Here's hoping the liver issues are gone. Keep up the good work.

Regards,
Ruth