All things considered.....

[SarahSmile]

All things considered.....I'm doing pretty well! Just wanted to give an update on how I'm doing, since it's been a while.

First of all, I'm very grateful that my transplant process has gone so smoothly -- I've had a bunch of extraneous stuff, but really, I think I've had a good ride compared to some so I'm very appreciative and counting my blessings.

It seems that I either have sinusitis and bronchitis or pneumonia. They're leaning towards the sinusitis/bronchitis combo platter, but didn't give me a chest x-ray because they say that since they'd treat them both the same, there's no reason to put me through even more radiation. So I'm on another antibiotic regimen, after having been given a different one for this same cough/wheeze/coughing-up-green-stuff that just never left after the beginning of December. I kept on taking Mucinex and just sort of figured it would take me longer to shake any bug I got and didn't really sweat it, but then when I started to get fevers I went in and this is the outcome. I'm really hoping the Z-pack works, because I'd like to be infection-free when I get my scans February 5th!

Then over the last couple of weeks, I'd developed a problem with water retention. Pretty! I was all puffy and my ankles and legs were shockingly enormous no matter how little sodium I consumed, how active/inactive I was, or how many water pills I took. Nothing seemed to affect it! I even had that crazy "pitting" in the legs! Blech. Turns out, when they did my blood cultures to check out the cough/wheeze/spitting-up-green-stuff thing, they saw that my albumin count was very low. (Apparently this is very common after transplant.) SO, if your albumin level is low AND you don't consume enough protein, you will retain water like nobody's business, and nothing will get rid of it but protein intake! Crazy! I never was a big meat-eater, chicken is skeeving me these days, and I haven't been cooking as much fish as I used to.....so I can see that there would be a protein/carbs imbalance in my diet. I just have SO little appetite for meat or chicken since the transplant. Conveniently, I'd just ordered and received some lovely protein powder from a great site I used to order it from, Protein Factory, so I started drinking some protein drinks and lo and behold.....the swelling is reduced! Not gone, but then I just started.

I was on a Mon/Wed/Fri antibiotic (with an intended 6 month duration) but because of all of my candida/yeast infection issues (see my last update or the "Chemo, the gift that keeps giving thread for more gruesome details) they're going to take me off oral antibiotics! My gyno says that as long as I'm on them I'll never get rid of it. So I'll go back to Emory monthly for an hour-long inhaler treatment instead! Pretty cool -- not only will I get in some good reading, but I get my vajayjay back! AND I won't have to taste the two disgusting medicines, since I have to take both the antibiotic and the anti-yeast medicine, diflucan, in liquid form. Blechhhhh and shudder. So nasty.

What else? Hmmm.... Energy: not so much. Stamina: nope, not really. These seemed to be improving, and I was getting in some cardio a few days a week, but lately I've just been completely knackered. I don't know if it's the sinusitis/bronchitis/pneumonia thing, or if the fatigue just comes in cycles, but I'm just a weak and tired girl these days. I only hope this improves sooner rather than later because I'm pretty tired of it. (Get it? "Tired of it?" See? Even my sense of humor is in a weakened and compromised state. It's very sad.)

My fingernails are starting to fall off. The nurse practioner tells me that I'll lose all of them and probably my toenails too, but that it's a fairly straightforward process. The nails die (as the hair follicles did) and then as the pre-transplant nails grow out and off, right behind them comes the new growth. Any feedback on this, fellow SCT'ers? The ones I'm losing have split right next to the cuticle, seem detached about a third of the way down the nailbed but then are attached closer to the fingertip, and are sore and sensitive to use. I'd love to hear others' experiences.

I gave a total hair/eyelashes/eyebrows update in my response earlier tonight to the "Delay in hair growth after SCT" thread, but here's another one: I'm still a baldy, but now have the tiniest bit of stubble. Interestingly, as soon as the first hair made an appearance, almost all of my eyelashes jumped ship all at once. I'd heard of this from someone else here, but it's definitely an intriguing phenomenon. I'd be interested to know why this happens! The eyebrows are sparse, but the eyelashes began to grow again after a couple of weeks and now I'm sporting a full set of stubbies, so it won't be long before I'm back up and batting! (Twinkle!) As for the head hair, it's much thinner on top than the bottom -- I have that same doughnut male pattern baldness/Michael Bolton thing I had last go-round, so I'm going to let it grow a tiny bit more and then I'll shave it in the hopes that it will come back in on top thicker and more like real hair than baby fuzz. (A cute look but hard to pull off once you learn to walk, you know?)

My emotional state is alright. Not great, not awful, just pretty OK. I'm a bit depressed, but not horribly so. I mostly see the effects when I observe how I communicate (or don't communicate with people.) I am normally a pretty bubbly and talkative girl, but I just don't seem to have it. I think it's more the lack of energy and reduction in social interaction than anything else, so I'm looking forward to steady improvement as my energy and stamina increase. In the meantime, I just need to remember to take my Wellbutrin!

I feel some anxiety about my upcoming scans, but not as much as Lorraine who, about every other day, says to me, "You can't die on me." How heartbreaking is that?? She's finding Xanax to be of great help in lieu of counseling, which is just NOT going to happen. I think we'll both feel better once we hear that I'm ok, that I'm still in remission. I definitely want to get a copy of the report, but I won't pick it up till after I get the news from my onc on the 16th. I want him to give me the news rather than reading it myself. Then, of course, I'll want all the detail he spared me!

I'm still peeling off the brown, discolored skin from the horrible skin issues I was having, but I'm in the final stages I think. I do still have the brown rectangle on my neck delineating my rads site. I'd rather I didn't have that, but I'm sure it will fade eventually, and I can always put on some sunless tanner in a couple of months if it still hasn't faded.

Mainly, I'm in the process of figuring out my limits. That seems to be a moving target! Some days I can really accomplish a lot, and then others I'll attempt to do the same amount and get so exhausted! Overdoing it takes MUCH longer to recover from also. But it's all a process, and I'm happy to have made the gains I have....and to be upright and with positive expectations of my upcoming scans! I take very little for granted these days but I do have high hopes.

In other news, we adopted another Italian Greyhound rescue, and we love him! His name is Sergio, and I'll post some photos of him in a separate thread once I upload the pics! He's about 6 months younger than our other IG rescue, Louie, who's 5 now, and poor Sergio's had a really hard life thus far, so we're very focused on letting him know he's safe and loved here in his forever home. He's a real sweetie.

I think that's pretty much it, health-wise, so I'll close here. Keep a kind thought and send those positive vibes on Feb 5th (scans) and 16th (results) ok, friends?

Love you guys!

[kristna]

Sarah,

I am glad that overall you are doing pretty good. I am sorry that you have got the funk. Bless Lorraine's heart...how worried about you she must be. My fiance' developed blood poisoning several weeks ago from a cut on his leg and it was a tough TWO WEEK fight..I was worried sick, I can't even begin to imagine how she feels. I will keep everything crossed for you. I know that your scans are going to be great..I just know it! Get to feeling better! Can't wait to see the new doggie.

[Moondoggie22]

So until your water starts letting go and draining, do we get to call you Puff Mommy? P Mimmy for short?

To be honest, little miss not-complaining-could've-been-worse, I've always been grateful that my SCT didn't have all of the weird stuff yours did So don't go around thinking you got off scott-free, 'cause some of us got off scott-freer

For example, the fingernails thing. If I recall correctly, you had some fingernail issues with other chemo before, right? Through all of the different stuff they've pumped into me, my nails never did anything really bad. A bit after the SCT, once they'd had time to grow a bit, I found that there was a hard speed bump-style ridge on all of my nails, all around the same distance out. Kind of like my nails had been wanting to grow out, but the SCT had held them in one place. Now at...

TODAY'S THE DAY! +200!!

Sorry, I just remembered that 'cause my PocketPC's alarm hasn't told me yet

Anyway, now at +200 days out, my thumbnail bumps are about an eight of an inch from the end and most of the other nails are either right at the tip or already cut off.

I wonder if the nail thing is like the hair thing, where they tell all of us we're definitely going to lose our hair in ABVD, yet some of us don't. Maybe my follicles are more persnickety than I give them credit for

You poor girls out there (meaning you and Lorraine, rather than "girls" in general). Next time Lorraine says you can't die on her, tell her "Well of course I can't die on you, I'd probably roll off the side. I have to die somewhere flat, like the floor." She probably won't say that again, but she also might just not say anything at all for a bit

Seriously though, I can't imagine what she's going through, as I don't know if I could keep it together if it was Barb instead of me. But now that she was so strong through all of this, that means I have to be strong through anything that might happen to her.

Crap.

[Judy_smile37]

Hi Sarah,

I'm so glad to see an update post about you. I have been wondering how you are doing. SO, you are OK and hanging in there. I waiting for the day that you say you are doing better than OK.

May that z-pack do the trick and get you well very soon. That should help a lot with the energy level.

I always retain water, except when on a high protein diet. HMMM! maybe I need to check my albumin.

Bummer about those constant yeast infections. They are the worst. I am always on a mild antibiotic so I push probiotics. It seems to help.

Those fingernails sound horrible. It must hurt to type. They will grow back though. So, its only temporary.

It sounds like you are on the right track. GO GIRL you are nearing the end of all this crap.

(((HUGS))),
Judy

[AnneJohn]

Hello Sarah:

It is good to hear from you - I saw your post in "Chemo, the gift..." thread, and boy, I felt for you! it is so good to hear you are generally doing well - although I think most people would feel entitled to complain a bit more than I think you ever could! It is good to hear how upbeat you sound in spite of everything.

Hang in there, girl - take care.
Anne

[chemocranky]

Hey there, I'm officially done complaining after reading this post and the one you left on "the gift..." I can't imagine going through all you have been through and are STILL fighting. I know in my heart that one day all this will be a distant memory for you--something to tell your "grand-puppies and kitties!" I know you hear this a lot, but you can never get too much encouragement...you are truly an inspiration to me. You offer such grace and dignity while going through more sh*t than the average person can ever comprehend. Sarah, you offer such a great balance of positive attitude and "reality" of what cancer is like to go through...I wish I could say I had half your strength. Get back on the Wellbutrin--once it kicks in it will do WORLDS of good helping improve outlook and attitude! You're still beautiful to me--even bald, "puffy" and without any finger/toenails!! Don't let anyone tell you different!! Big hugs to you!!

[Hyla]

Sarah,
What a trooper you are. It's amazing how our body seems to take so much abuse and also how different bodies react to the same treatment. Then to touch it off, there's that complicated thing between our ears, that probably helps determine the course of our health and general psyche. This human species is a marvelous creature. And oh yeah, don't forget the social aspect of our being... certainly a difference between fighting this thing alone or leaning on others to get us through.
Glad to hear from you!
Hyla

[RASC_NY2]

Sarah,
I truly do agree with Skye and said so much better then I could:
"You offer such a great balance of positive attitude and "reality" of what cancer is like to go through..."
If the time ever comes up that I have do the SCT thing I hope I can handle it as well as you and Lorraine. You have prepared me well if the need arises and for that I thank you. Now all your efforts need to be directed in getting strong and mothering Lorraine and your 4 footed

[SarahSmile]

Thanks, you guys! I don't know how I'd have gotten through any of this Hodge business if it weren't for this place. I really feel so sorry for the people who don't have a support resource this valuable and real.

I really think my emotional/communication "malaise" is a direct result of my fatigue. I've taken an energy pill 3 times since the transplant (I know, I know) and each time, I felt and acted so much more like my old self. I wanted to talk to people, I was quicker to laugh, I was more vivacious and bubbly -- each time gave a glimpse of the old Sarah! I wasn't bouncing off the walls, by any means -- but the supplement got me closer to my old normal, which I find illuminating. I also had the stamina to be out for a number of hours without falling out and having to rest. Obviously it wouldn't be a good idea to make it a regular practice of taking them, but it does give me hope that once my energy and stamina increase some more I'll feel so much better and happier in more aspects than one.

Not to say that I don't have any emotional grappling to do with this experience and its aftermath....but having some more energy moved me like 75% closer to being the Sarah that I remember and miss. Now to get to that point all on my very own steam! That's what I'm really looking forward to.

[robli]

Hey Girlie~
I've been thinking a lot about you! I'm sorry you're fighting a bug but I am glad to hear you're doing well! Your poor nails sound so painful! I didn't have any fingernails go but a few toenails fell off along the way. Mine just kind of fell off...like, Hey! Look at that! My toe nail just fell off!...nothing like you're going through. *hugs* I'll definately be sending you some awesome vibes for the 5th and 16th! It was really good to hear from ya!
xoxoxox