Countdown to BMT!

[Laura]

I am surprised they will keep you on that for life. I will have to take PCN and Acyclovir for a year post transplant. It is interesting how different places do different things.
Laura

[Vera W]

Hi Guys, Can't believe it has been 7 months!! Personally I am dying for some seared rare ahi. OMG Melissa I wish I had your energy. I feel alot stronger but I still need more stamina, I had a few outings. When I went to San Francisco for my appointment we met up with my best friend and went out to have some awesome Chinese food.This place serves mostly to go food and there was no one in there so we ate there. Dennis took me out to lunch and I helped him shop at Winco (LARGE WAREHOUSE STORE) and Costco. Wore my mask, I bought some of those N95 masks and they are so good that sometimes I feel like I am suffocating but I believe they are doing the job! Saturday my husband took me up to North Shore Lake Tahoe, it was a crystal Clear day, lots of snow, beautiful! Laura I would hate to see you jeopardize your health, I know you really like your job but maybe you should put your feelers out else where? As for me I put my sweats on and trundle down the hall way to the office. actually first I grab a cup of coffee and watch the weather report and Dr OZ. Dennis bought me a 32 inch flat screen tv for Christmas because he new that I would have days where I would just want to hangout in the bedroom. So I did some data entry, helped Dennis write checks for the business bills, and started my next series of deposits..the only downfall about working at home is the house work is always there. When I first got home I was really pushing myself I would get up early and have projects all day long, Dennis would tell me to go rest and I told him I had to keep going. I am very driven and I had a feeling that I needed to accomplish everything NOW, it is hard to describe, like life would pass me by if I didn't keep up. Does that make any sense? Finally I have learned to relax and let things come as they may and now I am laying in bed writing to you!!

[Neil Cuadra]

Originally Posted by Vera W

Dennis bought me a 32 inch flat screen tv for Christmas because he new that I would have days where I would just want to hangout in the bedroom.

We got a new TV for the same reason -- a lot of time stuck at home. And when my wife could go out we'd go to movies. She didn't have the energy for anything more strenuous.

As you say, you have to learn to relax and that's true for us caregivers too. It's good for you!

[squirrellypoo]

oh Vera, I completely know what you mean about being driven! I have a really hard time relaxing - every time I sit down I think of things that need doing...

But I have a big milestone to share - I went running for the first time this afternoon and it felt GREAT! I set low expectations and exceeded them - I ended up crossing over Southwark Bridge for about a 4.5km trip, but it was a very slow slog at ~30min. That's including a minute or two wait while the Beefeaters and Met Police held everybody back at the Tower for the cannons(!!) and military personnel to drive out the gate. Don't see that every day...

I know this'll sound funny contrasted with the above, but I've spoken to my boss and I'm going to start out at 4 days a week at the office because the full 5 these last two weeks was wiping me out physically and mentally and I was a zombie by the time I got home. So he's happy to let me be flexible and take Mondays when I have HOP appts and Wednesday when I don't (to have a break in the middle of the week) and come back to the full week when I'm ready. I've been really sinking my teeth into the big project now and using my brain again is refreshing.

A good side effect of walking to and from work (the bus is a pain, just as much effort, and way too crowded), is that the 6km/4mi round trip has taken off a few kg even in the last two weeks! So the scale says I'm only 3kg up now on where I was before I got sick, even though the inches are higher (I need to get back to lifting weights to lose some fat and put muscle back on, which is where the discrepancy lies). Clothes that I couldn't close at Christmas now fit nicely. I'm going to wait until payday to ring up my gym and have them reinstate my membership, though (they very kindly halted it after receiving a letter from my consultant so I don't have to pay reactivation fees). It's a nice perk of being a long-time member of the council-owned gym (a bit like the YMCA in the States, I'd say). I think the free weights will really make a difference to my strength and stamina again.

[squirrellypoo]

Another good clinic appointment today - all bloods were in the normal range and I had a record high for haemoglobin again (14.2!). They're still cautious about my super high liver function tests but think my immune system might be strong enough now to deal with whatever's there without the antifungals getting in the way, so they're booking me in for another liver CT scan in a few weeks.

But the liver stuff is just numbers on paper, I feel just fine. Still working 4 days a week, still very happy to be running, and my skin GvH is getting better, though this horrible acne is staying firmly put. I have a gynae appointment in April so I'm really hoping they can clear it up then, as the dermatologists are almost certain it's related to my polycystic ovaries (only diagnosed when I went through IVF to freeze embryos pre-transplant).

But some really awful news this weekend from my Welsh friend David who also had his transplant last summer and whom I always count in our circle as "one of us summer transplantees". His lymphoma is back, and it's terminal. They're both younger than me (in their 20s), and been married only since Oct after years of long distance relationship and visa battles and now they won't even have a full year together. The news and her outlook on it all has just broken my heart. It just doesn't seem fair that I got all the Good and he got all the Bad. Please, please keep him and his family in your thoughts for the little time he's got left.

[Neil Cuadra]

Keep up the good work, squirrellypoo. And keep running!

We're sorry to hear about your friend David.

[squirrellypoo]

My 31st birthday was last week (hmm, guess I'd better change my sig now) and it's all been really good and positive to throw away the old crummy year and start with a new fresh year just as the buds and flowers are emerging and the sun is peeking out.

I had a clinic appt today following last week's CT scan and the result there is that the lesion in my liver is still there, but my liver function tests are all still trending downwards. So even though they're all above normal, they're going in the right direction so they're taking me off the Posaconazole (anti fungal) entirely since my counts are so good and they suspect the lesions might be a drug reaction anyway.

My counts were:
WBC: 6.something
Hb: 13.8
Pl: 288
Neutrophils: 5.something

(no printout today so these are from memory)

...which make me really happy! And they're happy enough to let me only going in for blood tests once a fortnight now instead of weekly, and in a month or two when they can see my liver function without the antifungal, he said I might gown down to monthly (and have a drink again), which would be nice.

Another thing is that I'm involved in a study looking at whether the rehabilitation of transplant patients can be helped by life coaching, so I'm pretty excited to start my first session with the coach on Wednesday. I'm a pretty organised person anyway but I've got a lot going on this year and I think I can really benefit from someone else helping me to realise what I really want and setting goals to get there.

[Julianna]

I found your posts and had a bit of a read! Just read a little. Feeling a bit overwhelmed myself with what's going on for me at the moment.

So glad your counts were so great the other day! Sounds really positive.... And it's nice to be in touch with someone that is so positive about the future too. Life coaching sounds interesting. Like to hear more about that! Hope it is refreshing for you.

Jules

[Laura]

What great counts you have. But one question. What does a fortnight mean? How is work and running going? Happy Birthday!

[Chirley]

Hi Laura, don' t Americans use fortnight? It's just another name for a 2 week period. I have to admit when I look at the word objectively it does look very old fashioned.

[squirrellypoo]

oh sorry about the fortnight thing, yeah it's two weeks. It's been ten years since I lived in America and sometimes my internal US/UK translator gets broken.

Laura, work and running are going really well. Still doing 4 days a week in the office with a break on Wednesdays, but I'm thinking about going full time in May (bit of a cheeky reason, but May has two bank holidays, so I'd be getting full pay for doing 2 4-day weeks and 2 5-day weeks!). How are you coping with the 8 hour shifts? I can't even imagine how exhausted you must be after being on your feet for that long!!

I had to take a couple weeks off running since I picked up a cold that left me really super tired, but I've been feeling better over the past week so I went out for a run on Saturday, and when I got to the bridge I had been crossing over (I run up one side of the Thames, cross over a bridge, run back down the other side, then cross over Tower Bridge to home, so I can change up how far I go based on which bridge I cross) I didn't feel halfway done so I went one bridge further down to cross. I had a couple points when I had to walk, but those were really only for 10 or 20 seconds before I felt fine again. All in all, I did just over 5km (3mi) at what was a leisurely pace for me but ended up not being too bad, considering - 33min. At my fastest I did 5km in 24min but that was when I was healthy, after weeks of training, and in a race where I didn't have to dart in and out of pedestrians so I was really happy with that!

I'm looking forward to the long 4 day weekend coming up. Maybe I can get a run in on Friday and Monday since I don't have to save any energy for work (why I'm not running on any days I'm working - I'd be asleep at my desk by 2pm in my current state!!). The other two days will be nice and leisurely, maybe some gardening (I've been given the all-clear to play in the dirt again, yay!) and sewing. I'm starting on my bridesmaid's dresses so I've got plenty to keep me busy.

[Laura]

Wow, things sure sound like they are going great! I am so happy to hear that.

Work is going well too, but I am very tired most of the time I am not at work. I either go to bed right when I get home or I force myself to stay up until 8 and go to bed then. On my days off I sleep like crazy. Although, I do really enjoy being back at work.

I have my appointment with labs today, so I hope that goes well.

Laura

[squirrellypoo]

Ugh, not a great Easter emotionally. My fellow summer transplant friend, David, passed away yesterday at 11am. His widow (god, she's far far too young to be a widow) texted me to tell me the news and handle some immigration research for her, which isn't looking grea for hert. Because of a weird quirk in timing, there's a high chance she may have to leave the country in 28 days, or at best, hire an immigration lawyer to fight her corner, which just isn't what the poor girl needs right now.

So after helping her out all day, I found out last night that the neighbour's very, very loved cat that went missing three weeks ago was found dead. He was so full of personality and was utterly best friends with our cat (they'd play hide & seek and leapfrog together it was TOO cute), and as much a part of the family to his family as our cat is to us, and I just know how broken up they are about it.

So not a good Easter, all told. It was good to wake up early and get a run in this morning to get some of the stress out. The only good thing I've got to report is that this week is the first week in about 18 months (since my diagnosis, anyway) that I won't have to go to hospital at all. Not once! So that's a nice feeling.

[Neil Cuadra]

squirrellypoo,

Life sure has a lot of ups and downs, doesn't it?

You said David and his wife were in their 20s. What a shame. She must be in shock. I'm sorry to hear that your cat lost a friend too.

Here in Los Angeles we had an earthquake yesterday. The epicenter was in northern Mexico, over 200 miles from us, but it was 7.2 on the Richter scale and we felt it here. It triggered some aftershocks near us. Those weren't the kind of ups and downs I was referring to, but they are part of life on the U.S. west coast.

[squirrellypoo]

Thanks, Neil.

I suppose in your case life has been going side to side a bit too much as well! I'm glad you're okay, I've never been in an earthquake - thunderstorms are about the fiercest natural phenomenon we get on this little island (though I remember being terrified by tornadoes growing up in Pennsylvania).

[Laura]

I am so sorry to hear about the loss of your friend. That does make for a hard holiday. Best wishes and thoughts to you.
Laura

[squirrellypoo]

Boring is good, right? I happened to get Prof Marsh today for my clinic appointment and I joked with her that I didn't think I was interesting enough to see her these days.

Not much to report, other than that my chimerism tests came back from last month and all the DNA tests show I'm still 100% donor so that's good. Bloods were all normal again: WBC 5-something, Hb 14.1, Platelets 329, Neutr 4-something.

I'm just waiting to the gynae/endocrine specialist on the 22nd now, really, as everything left going on is allllllllllll his (wait til he asks "what's up?" and gets a laundry list as long as my arm!)

That, and I noticed my favourite nurse from St Thomas's has now transferred to Kings so that's nice. Since I switched to Kings the month before the transplant I'd missed our swapping band recommendations.

[Neil Cuadra]

Originally Posted by squirrellypoo

Boring is good, right? I happened to get Prof Marsh today for my clinic appointment and I joked with her that I didn't think I was interesting enough to see her these days.

squirrellypoo,

Yes, it's great to be a boring patient. For a while my wife was one of the more interesting cases at the hospital, often a subject of discussion at hematology staff meetings. We appreciated the combined expertise that went into her care but we were much happier when she turned boring. These days her hematologist looks at her counts at a checkup and says "ok, that's it, see you next time!"

[squirrellypoo]

I finally had the gynae/endocrine appointment yesterday I've been waiting months for! I'm not comfortable going into too many details, but the doctor said he doesn't think my ovaries are dead, just "stumbling to wake up". He can easily fix my acne and sexual problems with a pill I was on prior to my blood issues, but it affects the liver so he has to clear it with Haematology first (I see them on Monday).

He is also pretty sure that I will be able to conceive naturally when we want to start a family in the next year or few, which is a big surprise!! He took some extra blood tests just to be sure, but looking at my LH and FSH levels, he feels I am definitely pre-menopausal (despite not having any periods post-transplant). He put this down to my 1) not having Total Body Irradiation and 2) having a lesser dose of chemo in my "mini transplant" conditioning regime.

I'm still very glad we froze embryos before my transplant as it's a relief even now to know we have a backup plan, but with my specific transplant and age, I still feel incredibly lucky! And knowing that he can fix my rather long list of problems with a pill I'm already familiar with is a big relief, too.

Have a glorious weekend everyone, and I hope that the weather is as nice and sunny where you are as it is in London.

[Laura]

Hey Melissa,

I am glad they don't foresee you can't have kids. I am going to see one too as I feel some things are off as well. However, I did have TBI and I feel like that is ALREADY affecting me in this area. So I asked for a visit to get his opinion. It is just a bummer to think that I probably can't have kids after all this. Hoping for some good news at my apt.

Laura

[squirrellypoo]

Fingers crossed, Laura. Do you know when your gynae appointment is yet? I'm so happy to have started my pill today, even though they all (gynae, haemo & dermo) say it may take a few months to make any change, it's good knowing that I'm moving in the right direction and not just standing still.

They also took a bunch of hormonal blood tests on Thursday but the haematology dr I had today didn't want to venture what the results meant as she's not familiar with gynaecology and didn't want to give me misinformation. So I suppose I won't know any more on the fertility side of things until I see the gynae dr (he specialises in younger women who've had chemo and radiation) again in June.

If you want to know my specific problems or compare notes, I'm happy to tell you in a PM, just not all out in public like this.

[Laura]

Melissa, See my PM. Laura

[Julianna]

Hey Chickees! Just thought I'd like to let you know that I'm so interested in your journey's through transplant. I have been reading your posts, but I don't comment very much... so I thought I would pop in to say I am here too!

Thanks for your very important info sharing. I'm not sure if transplant is my future but we are looking into it, with my unusual cytogenics. I have an appointment with my Hemo and BMT Dr on the 14th of May to talk about it.

But I guess for now I will just keep reading here... especially Jill's journey at the moment. Go girl! Hope you gals are doing ok and remaining well at the moment. Enjoy the weekend...

Jules

[Laura]

Hi Jules,
Welcome Thanks for posting. Do you think your doctor is leaning towards transplant because of the switch to MDS? What is your current plan? Tell us a little about you and such if you wish. Also let us know how your appointment goes! Laura P.S. You might just have to start your own thread too

[Julianna]

Hey Laura... I have a thread in My Story called Julie's Adventure. And all I know is that because I am 34, and had treatment for AA over 10 years ago, they are wanting to watch me closely, and be prepared for transplant in the future. I have a few chromosome abnormalities... which might be from my former treatment. Watching and waiting is what they're suggesting at the moment. And it's a lot harder to do than I thought! But I'm just rolling with it. Have a great week.

P.S. My last platelet count was 34! So a bit of an improvement... but amazingly still leaves me feeling unerved about it all.