Countdown to BMT!

[squirrellypoo]

I will not be carrying the Olympic torch afterall. Big disappointment after getting nominated and through the first round.

Guess I'm just going to have to do extra well in my first half marathon in Paris in March. I signed up last week and I'm very excited for it, especially since I just found out a friend's running it, too. I'm just hoping to finish under 2hrs, but if I beat my friend it'll be even sweeter!

[mausmish]

Sorry, Melissa

Good luck in Paris. You are amazing, an inspiration for all!

[squirrellypoo]

I just realised I haven't updated my thread in a while and it was about to drop off the first page in the Transplants sub-forum. So let's see, updates...

Paris half-marathon - I absolutely exceeded my wildest expectations in Paris and I finished in a very respectable 1:47:12! I was most proud that my pacing was rock-solid the whole way through, and I beat my previous 10K PB in the first half of the race! I then spent the rest of the weekend self-medicating with macarons. More info and photos in this thread

Hormones - the HRT patches started off great, but after a month or two, had zero effect anymore, and I found the patches to be irritating and uncomfortable. So the gynae/endocrine doc switched me to Livial/Tibolone pills, which act in a different way to just giving you hormones outright so she thought it was worth trying. The first two months were rough, I felt really aggressive and stressed (testosterone, yay), but I'm on the third month now and it's settling down, and I'm finally having something approaching a libido, so I'll see if it carries on. And enjoy it while it lasts! At least the "take one pill every morning" routine is easier for me than the patches.

Illness - I picked something up on the flight from Montreal at the end of March/beginning of April, and while I was laid low with a fever, a secondary infection jumped on board and gave me a full body, horrible pox/rash thing that made children cry to look at me (it was either HSV, shingles, chicken pox, or something, but the treatment was the same for all of them - super high Acicolvir dose - so they weren't that concerned in narrowing it down). At the same point, our beloved, wonderful, bundle of joy, our kitty Bosco died suddenly in his sleep from a heart attack, so it was an awful week all told. The spots faded well before the pain of loss has, let me tell you.

In general I'm still way more germ-phobic than the average population - I don't touch anything on public transport, and use a germ-killing spray after touching anything (any buttons, I always hit with my knuckles rather than finger tips, too). In general, I don't get sick very often (less than the guys in my office), but when I do, I go down hard and extremely fast. I'm fairly certain it was touching the hard surfaces on the airplane that did it to me, rather than the recirculated air.

Upcoming - I'm running two 10K races, one at the end of May and another 1 July to celebrate my 3rd rebirthday, and I've made a big step in signing up to run the full marathon in Amsterdam in October, omg. It'll be my first, and I'm terrified, but I've got to see if I can do it, and I've got an excellent level of fitness already. To be perfectly honest, I'm in the best shape of my entire life (I can run way faster and further than I could before I was ill!) so if I don't try now, when will I? And, as with every race I run, I take the memories of Vera, Rob, and David along with me, and I spare a thought to Serkan and Laura and all my other transplant friends, too.

[Chirley]

Hi Melissa,

I'm sorry to hear about Bosco. You posted some photos here before and I remember thinking what a beautiful cat you had.

I still feel the loss of my little old dog who died suddenly in February. As time goes by I can laugh and smile as my memories of her come back at unexpected times but I still feel the empty space everyday.

I understand your sadness and I'm sending my thoughts your way.

[Laura]

Melissa,
So happy to hear that things are going to so well for you or you are able to recover well from the aliments (sickness, etc). I am so sorry to hear about your cat. Being a cat lover, I feel your pain and I am very sorry for your loss.
I can't fathom how you have the energy to run like that. I can barely make it up the stairs in my house!

Laura

[squirrellypoo]

Just a short update to say that yesterday was my 3rd year rebirthday! I ran another 10km race last Sunday for a lovely little charity, ACLT (Afro-Caribbean Lukaemia Trust) who help promote blood and bone marrow donation, and I just couldn't say no! I ended up *finally* getting the sub-50 time I've been chasing for years, finishing in 47:53 and as the first woman charity runner. The people there were really wonderful and supportive and I then spoke about bone marrow donation to my 150-strong person running group last week and got (hopefully) loads of new donators on the registry. My running group is very racially mixed, with a great mix of ages, too, so hopefulyy everyone can spread the word.

I'm starting week 4 of my marathon training now, it's feeling (shh!) quite easy at the moment but I know it'll get much tougher soon.

Oh! And I forgot to mention that there's another transplantee in my running group now, too! He's only 9 months post transplant, but he's already running in the same group as me, and doing SO well! I was so excited when I found out, I almost hugged the life out of him.

[donna j.]

Congratulations you are such an inspiration to us all. Keep up the good work and great running!

Donna

[Laura]

Hey Melissa!!! Happy rebirthday!!! So glad to hear things are great with you!! Laura

[squirrellypoo]

I haven't posted in ages but just by way of an update, my training for my first marathon in Amsterdam in October is going well - I ran my first 20 miler last weekend and this weekend I had a fun half marathon race. It was costumed, very hot and very hilly, through a lot of trails, and I ended up as the 5th female finisher in a field of about 500 runners. I passed a lot of elite guys on the uphill stretches, and dressed as a sailor girl, too!

It's our wedding anniversary next week and we're off to France for a low-key holiday. Healthwise everything's great - I've finally found an HRT that seems to work for me and the gynae-endocrine doc has upped the doseage on my request, so that seems like the last little bit of the puzzle.

[mausmish]

Melissa, always wonderful to hear how well you're doing, and I love the sailor suit! Karen

[Laura]

I totally echo Karen!

Glad to hear you are doing great Melissa!

Have a nice anniversary!

[donna j.]

Melissa,

Congrats and Happy Anniversary,Ohh La La!

Donna

[squirrellypoo]

Just a note to say I posted in the News & Events forum here about running my first marathon on Sunday!.

[Lori Patrick]

You are doing SO WELL! I'm happy for you.

[squirrellypoo]

Just an update to the thread for anyone reading it later - I've been pretty much continuously ill since October, picking up every single bug that's going around. At first I thought maybe it was due to my reverse taper post-marathon being too short (which can really affect your immune system), but then I had flu for 3 out of the 4 weeks in December (despite getting the flu shot), and here I am in January ~10 days into a recovery from shingles. Absolutely every person I've shown my torso to has gasped in horror and said it's the worst case they've EVER seen, lucky me! I'm a tough bird, but this was extremely painful and has really knocked me back.

Anyway, I think now it may have to do with the stress I've been under at work, which ramped up significantly around the end of September, so I'm doing everything in my power to ease that, and just hope for the best that when I reach the magic 5 year mark that my immune system might mature into that of a school-age child, which all my friends with children says makes a massive difference. Things weren't so bad when I was on Aciclovir for the first 2 years post-transplant, but man did I notice an upswing in colds and flus as soon as I came off that and I was essentially "on my own"!

I've got four half marathons and a full (Copenhagen in May) booked, plus two city breaks and a week in the States to look forward to, so that's a lot of time in planes spent NOT touching any surfaces!! I just hope my body can stay illness-free long enough to train for them - my mind is definitely stubborn enough, so no worries there!

[Lbrown]

Well, as painful as it is, it shows your immune system is working. I had shingles myself and it was NOT fun. Colds / flu symptoms are caused by your immune system waging war on the pathogen(s). Annoying but supposedly a good thing.

Good luck!

Deb

[Neil Cuadra]

I'm sorry to hear about this setback, Melissa. This has been one of the worst flu seasons in years. So many people we know are home sick. But getting shingles is even worse. I wish you a speedy recovery.

[squirrellypoo]

Just an update 5 weeks on that my shingles (the worst anyone's ever seen) caused nerve damage so I've been on lots of painkillers, and I'm still waiting for the neural-specific ones (Gabapentin & Amitriptaline) to take effect so I can stop with the others (paracetemol/tylenol, naproxen, and tramadol, plus topical lidocaine). I've got a really good GP right now and she recognised that I was feeling worse doing absolutely nothing so she said I'm okay to do the odd afternoon at work and go for some gentle/short runs (yippee!) so I'm feeling better now mentally just for those.

I saw a Pain Clinic nurse who said what I'm describing isn't technically PHN since I wouldn't even be able to touch the skin on that, so it sounds like mine's nerve pain but without going full-blown PHN. So fingers crossed the neural painkillers can deal with it and stop it getting worse.

(I've had to pull out of this weekend's half marathon in Paris and I'm getting nervous with only 11 weeks to go before the Copenhagen marathon, but my trainer's not concerned yet so I'm just going to try to relax...)

[Lori Patrick]

I am sorry to hear of your setback. It's hard to imagine how bad things can be until you get them. The shingles sound horrible. I recently had liver problems and I had horrific itching. So bad that I was going to ask to be put in a coma. Itching does not "sound" that bad, but it was! Hopefully you will be strong soon and ready to run! Blessings. Lori

[LoveRapheal1]

I am so happy that you survived this with such a positive outlook. I too will schedule my bone marrow transplant. I am 38 years old. I plan on scheduling it April 9th 2013 if my counts do not improve. I am going to buy a wig too, but not to match all my outfits like yours. I would rather call it a Diva wig because I love singing and I think that I am going to sing throughout this entire procedure. Thank you for inspiring me with your courage, determination and strength.

Originally Posted by squirrellypoo

I posted my story a few months ago but haven't had a chance to update much since then, what with juggling hospital visits, work, and my social life...

But my bone marrow transplant admission date is rapidly approaching, and this seems an appropriate place to keep a running saga as it goes along. I had my pre-transplant clinic appointment yesterday, so I know a lot more specifics than I did previously, too.

2 June - admission to Derek Mitchell Unit (dedicated BMT ward) at King's College Hospital, London, UK, under the watchful eye of Prof Marsh and Prof Mufti
3 June - chemo for "mini transplant" starts. I'm getting Fludarabine, Busulfan, and a very new one, Campath, that attaches antigens onto the surface of the donor's T-cells or something like that. Apparently it's fresh out of trials...
11 June - stem cells from an unrelated matched donor

It's nice knowing I'm in the best place in the UK for BMTs, but at the same time, the statistics are a bit frightening because they're all for BMTs as a whole, and I feel like I should be above the odds since a) I've not got cancer nor have I already been weakened by years of chemo and b) I'm young and (at least before I got sick) very fit and healthy. But since there's very few cases of Aplastic Anaemia that get BMTs, it's almost as though the Profs are developing my course of therapy as they go along and what the research would suggest is best, too.

The only thing left for me to do is get my Hickman line inserted on Thursday (May 28). Oh, and pack up lots of activities to last me 6 weeks!

Anyone have any experience, either at King's or with the same chemo drugs, or have any advice on what to pack? I'm not quite sure how I'll feel, and there's no amount of reading that can predict it either!

[squirrellypoo]

Originally Posted by LoveRapheal1

I am so happy that you survived this with such a positive outlook. I too will schedule my bone marrow transplant. I am 38 years old. I plan on scheduling it April 9th 2013 if my counts do not improve. I am going to buy a wig too, but not to match all my outfits like yours. I would rather call it a Diva wig because I love singing and I think that I am going to sing throughout this entire procedure. Thank you for inspiring me with your courage, determination and strength.

Oh thanks so much! I'm glad I could help. This thread has turned into something of a BMT diary over the past few years!

Definitely buy a fun wig, and a few snug, soft little caps, too, because I know I didn't want to wear the wig while I was lounging around home or sleeping.

Best of luck to you!!

[Laura]

Oh Melissa I am so sorry to hear about the shingles, etc. How are you doing now? How is the pain? I liked Lyrica much better than Neurontin for nerve pain. If Neurontin isn't helping much maybe try switching? I am always thinking of my "transplant buddies"...you...etc from this site.

[squirrellypoo]

Hi Laura! I often think of you and my other transplant buddies, too!

I'm doing much better with the shingles pain. I weaned myself off the tramadol in Paris at the beginning of March, then off the paracetemol & naproxen shortly after. About a week ago my GP gave me the go-ahead to try stopping the Amitriptalyne, and even though I did a super short taper down (4 days instead of 3 weeks), I had zero withdrawal and the low level pains didn't increase. She said in a few weeks I could try a looooong taper off the Gabapentin then, too, leaving me with just the lidocaine patches, which I really like, and are no bother at all.

I'm SUPER happy to be off the Amitriptalyne, though, because it was preventing me from drinking (not usually a big deal but it was just my birthday and we're going to the States for a week now) and preventing me from training hard (because of a slight risk of increased heart strain when combined with my daily antibiotic, Azithromycin). So I'd spent most of March running slow and long and getting my mileage and routines back up again, and now I can add my tempo and hills sessions back in the mix so I'm much happier.

Having lost 8-10 weeks of training, I'm no longer aiming for a Boston marathon qualifying time in Copenhagen (it sound hardcore but it'd only mean shaving 8min from my Amsterdam time now I'm an old lady ), but I'm just going to get out there and enjoy myself and enjoy the race and the city. I got my London 2014 qualifying time in Amsterdam and that was what I really wanted so anything else is just extra. A few friends from my running group are also going, and I've met one of the Danish runners, too, now so I'm really feeling positive about this marathon and at least being able to put in a good showing.

Thanks for checking in, and I hope things improve for you soon, too.

melissa

[squirrellypoo]

Just an update to say I ran my second marathon last weekend in Copenhagen!

I lost 8-10 weeks of training due to an awful case of shingles (which I'm still on two pain meds for now), then I started to transition to midfoot strike about a month ago so my feet were still tender/damaged in a few places from that. Plus, I picked up a cold the week before the race so I was still really snotty & tired even as far as Friday, but ended up feeling about 85% on race morning.

The short version of the rest of the race is that my hips and quads just weren't able to take the 3:45 target pace (5:18min per km). The former I blame on the frequency of cobbled stretches, the latter I blame on my recent midfoot striking building up my calves and hamstrings, but heelstriking during the race itself meant my quads were taking the brunt. When I realised that 3:45 wasn't going to happen, I just settled in, tried to smile at as many spectators as possible, and breathe deep and calm. The 20s felt harder than the 30s to me, but I think that's because I was still trying to maintain that pace then, and in the 30-kms I allowed myself to take a few walking breaks, though only of (honestly!) 10-20 second each. Just enough time to say "see hips? It hurts just as much when we're walking as when we're running. So let's run again!". Silly hips. They do lie, Shakira.

Unlike Amsterdam, I stayed perfectly lucid throughout - no fuzzy headed haze at 30km, and it really was just my mind against the gnawing pain of my hips, quads, and my poor battered, blistered feet. But like Amsterdam, I got to 40km, and thought "2km left? That's NOTHING! Let's go!" I picked up the pace considerably in the final stretch and managed (what felt like anyway) a sprint finish for a time of 3:52:37. Not the GFA I wanted, nor a PB, but considering I've only really had 6 weeks of training, I'm okay with that.



And there's an official race photo of me mid-run here, too!

My parents got up at 3am to follow my race - my mom's iPad with the official app tracking my 5km splits, the Dailymile site watching my iPhone app update every 5min and my dad leaving me messages that got spoken into my ear, and the official site with the live video stream. It totally makes a long, foreign race feel friendlier to have messages from family and friends all over the world throughout the race!

[Neil Cuadra]

Melissa,

A personal best wasn't in the cards, but given the circumstances I think that willing yourself through the entire race was achievement enough!

Not being a runner I'm puzzled about your transition to a midfoot strike. I know it's about changing how your foot impacts the ground, but what's the reason for switching?