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 unfortunate 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 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! Some friends have really been there for me and others just really bailed after I got out of the hospital, but that's how you learn, right? C'est la vie.
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. Did I talk about the horrible skin issues before? This is what I said elsewhere:
I have had a yeast infection since my transplant (I had full body candida, so I had it at every single point on my body where skin touches skin -- in my belly button, my underarms, where thigh touches groin, behind my knees, between my buttocks, under my breasts, in the scar on my stomach, and on and on. It's been hell.) In my case it resulted from the massive antibiotics they had me on in the hospital and then to a lesser degre after. My gynecologist told me that as long as I'm on antibiotics, the best we can do is keep it down to a dull roar, so I've been looking forward to 6 more months of it as a result of the post-SCT antibiotic regimen they've got me on. Well, yesterday I had a doctor's appt. at which they opted to switch me off the oral antibiotics because of the yeasty hell I'm in! Instead I'm going to go in monthly for hour-long inhaler treatments that will apparently do the same thing for me without affecting my body's flora system!! I'm ecstatic. No treatment has worked, nothing I've tried.....nothing! Yay, yay, yay!!! I'm hoping the [girly parts] dryness goes away, but since I'm in menopause now, I'm trying not to get too hopeful.
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.
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? The days between the scan and the results will be pretty torturous for both of us, so it's a good thing that at least Survivor will be starting a new season! Alright...so now we'll be distracted every Thursday from 8:00-9:00. That block of time is filled!
In other news, Sergio is settling in beautifully! We've had a very hectic week and a half, as first Lorraine's daughter (her ex's) was with us for a couple of days (love her!) and then we had some dear friends from Baltimore, Rick and Bob, come down for a week to do some preliminary stuff to the home near us that they've just bought! They even did a small drag show for me to cheer me up!! (Not normally their thing, so quite a gift!) They were HILARIOUS and I so appreciated all the thought they put into it, all with the purpose of making me smile.
Anyway, getting back to Sergio: we'd had him for less than a week when Christina came, and then the boys hit....and we now know that Serge doesn't really like the men so much. Who knows what he's experienced before....but these are two very nice guys who really made an effort to reach out to him and make him feel safe, and he just wouldn't have any of it. But with us, he's deliriously happy! Big snuggles under the covers every night, and lots of tummy rubs and stinky kisses. I say stinky because Mr. Serge definitely needs a dental, which he will get in February. Also coming up in February will be a visit to an orthopedic vet to check out the pin he had placed in his leg last August for a serious case of luxating patella. The poor sweetie walks on 3 legs the day after any time he runs around our back yard, and overall, he clearly favors it. So we're just going to get that checked out. I can't bear the thought of him silently suffering. He's very, very sweet, and he's making strides with Louie, who still doesn't love him but has gradually modified his definition of personal space. Under the covers he'll let Serge spoon him, but only for a little bit, and it does seem reluctantly. Apparently what happens under the covers STAYS under the covers, because when Serge tries it out in the open, Louie gives him the cold shoulder. But there's definitely progress, and both Lorraine and I are sure it's a good match. It will just take time. As soon as Lorraine tells me where the CD is for the digital camera software, I'll upload some pics and post them. He's a real beauty.