Saturday, January 30

Sarah Smile

Today is Sarahs 2 year anniversary that she went home. I miss her dearly!
Have a glass of wine waiting for me my LOVE of my LIfe.

Sunday, January 3

New Years

Happy New Years to all of Sarahs friends. You are all in my thoughts and prayers daily!
Lorraine

Wednesday, January 30

Sarah's final Journey

Sarah passed away today. I was by her side the entire day holding her hand. She went peacefully with no pain and me caressing her head. I will miss her so much.
Thank you all for being her friend and loving her.

Sunday, January 27

Update on Sarahs health

It is with much sadness that I inform you that Sarah has been in the hospital since Tuesday. She has steadly declined and is currently on life support. Sarah was the love of my life, my strength and my best friend and I will miss her dearly.
Please keep her in your thoughts and prayers.

Lorraine

Thursday, July 19

Lifewithoutaspacebarishard!

Well! WOW, it's difficult to write without a spacebar! My notebook's spacebar broke (and then there were some connection problems) so I've had trouble getting in an update -- sorry!

The truth is also that I spoke too soon about the dosage reduction making life so much easier. I'm exhausted so for the time being I'm just going to share here an update I gave to a dear friend:
I'm just really having a hard time with this chemo, unfortunately. It turns out that it's a little bit better with the decreased dosage but just a little. I've still got some significant physical difficulty for about 12 of the 14 days between cycles. (One treatment = one cycle.) The biggest complaints are debilitating fatigue, debilitating headache, and debilitating constipation/crazy bowel issues. Once in a while there's a little projectile vomiting thrown in for excitement, but the accompanying diminished appetite is actually yielding happy results on the scale!

Isn't this a happy response? I just like you too much and feel like you're too much of a friend to put on my breezy, "I can handle it!" voice, so you're ending up with an earful. (Or eyeful, as it were.) The truth is that Lorraine and I are really worried about this chemo regimen, because neither of us can imagine it being sustainable over the longterm. I kept hearing how "well tolerated" it was, but that has just not been my experience. I don't have enough energy to even do laundry or play with my dogs, my head hurts so much we have to speak in hushed tones and I have to stay in bed, and my stomach is always cramping or in a state of flux and great crisis. I haven't lost any hair yet, so that's a great relief, as it could have thinned! We'll talk to my onc this Friday (I see him before each treatment, which is an absolute pleasure, as we adore him and trust him completely.)

Emotionally, we're both quite fragile. Of course, it weighs on everything, and there's never any escaping the reality of it. It's just so heavy. And THERE. I can only assume -- and hope to God -- that it gets easier. Lorraine is absolutely amazing, but she's in such pain. We both are.

I'll post more soon, I promise.

Monday, July 9

And there was much rejoicing!

Well, friends, I am THRILLED to report that the small reduction in Gemzar dosage --from twelve hundred something thingamajigs per metric squared something to a thousand something thingamajigs per metric squared something -- has made an ENORMOUS difference in my well being!

I had treatment on Friday. Friday night was ok, Saturday was pretty good also until the evening, when a headache hit and also a mild feeling of having the flu. On Saturday I gave myself a Neupogen shot, so Sunday morning brought back, hip, and thigh pain (it's normal; the purpose of the shots is to put your bone marrow into hyper-production of white blood cells, causing the marrow to expand, which is temporarily painful. Some folks experience pain with these growth stimulators more than others, and I just happen to fall into the hit-by-a-truck category. C'est la vie.) Sunday I felt worse, with increased headache and jaw pain, nausea, mouth pain and fatigue, but still pushed myself to be up and active all day, and probably overdid it because I really fell out in the afternoon. This morning, Monday, I've got all of the aforementioned complaints -- as well as a RAGING headache -- but I'm truly NOT complaining! I'd say I'm faring, overall, about 75% better than I was during the last cycle. That's huge! I was out of commission for 10 days on that one! Lorraine is ecstatic. She missed me last time! (I was getting out of bed around 7:00 p.m.)

The constipation is under control this time -- still an issue, but nowhere NEAR the problem it was last time. I'd say the headache, jaw pain and body aches are the worst. But seriously: SO much better than Round One.

Sorry to go through the whole litany of bodily experiences, but I record them all here, as I've done since the beginning, in the hopes that my experience can be of some benefit to someone else down the road. I know that when I first entered into what would become a sort of cancer career, I was so eager to read of others' personal experiences with treatment, and there was a real dearth of Hodgkins blogs back then. (Now there are many more.) As I've entered into new treatments I've found so little personal info online, I've vowed to share my experiences here. Interestingly, I share MUCH more information here than I do with my closest friends!

In other news, Lorraine and I have entered into a new weight loss period......of which my part will be shared here! Holy mother of GAWD it will be good to talk about something besides freakin' cancer!! Hello, Weight Loss Blog, my old friend! I missed you so! As some of you may know -- or read in my blog header -- this thing started, back in the day (2004,) as a weight loss blog, back when I was busting my ass to lose weight instead of beat (or live with) cancer. I lost about 80 pounds in 8 months by watching what I ate and exercising. (The loss was not related to my lymphoma; nothing sudden or drastic, just a steady rate of loss which actually slowed towards the end, as my cancer was progressing.) I'm currently about 20 pounds over my ending weight of that time, and I intend to do it again like I did it last time. Stay tuned.

Thursday, July 5

#2 postponed

Tuesday's chemo was postponed because my counts were too low, so I got a reprieve! It really was a break because it allowed me to enjoy the 4th with some great friends. The low counts made me feel pretty punky, but I still felt better than I had in a couple of weeks. On Tuesday Lorraine and I met with my doc to review how the first treatment had gone, as he'd been out of town, and he was pretty struck by the severity of my response to Round One. We were in agreement that this regimen shouldn't keep me in bed for 10 out of the 14 days between treatments. (Gee, you think?)

He said that normally he'd keep the dose high for the first month or two to do as much damage as possible right out of the gate, but that because of how low my counts went and how badly I reacted, he's going to lower the dosage now, beginning with tomorrow's treatment.

Going forward, my treatments will be on Fridays, and I'll give myself Neupogen shots on every other day for the first five days after each treatment to keep my white blood counts up at a safe level. I sure don't enjoy giving myself shots in my stomach and don't exactly relish the prospect of doing that for the rest of my life, but at the same time I'm very thankful that the shots exist and will allow me to continue to receive my treatment uninterrupted.

As for my spirits, well, they're going to get better with some medicinal support. We're doubling my Wellbutrin dosage to meet the "heavier load" of my terminal status. I'm definitely depressed, so hopefully this will help. I still haven't seen my therapist (Hi, Ali!) in private yet, but Lorraine and I have both benefited from a few talks we've had with her. Maybe the Wellbutrin will warm the waters into which I'll dive whenever we do talk.

In the meantime, I'm really enjoying some canine therapy -- not only my own two, but also a neighbor's big, drooly hound as well. There's not a lot that's better than puppy kisses for making everything right in the world, is there?

Friday, June 29

Gemzar and Navelbine kicked my ass!


Alright, I'm going to go with the theory that the Gemzar and Navelbine had to shock my system in order to effectively do their intended work on putting to sleep the Evil Inside Me. Either that, or they're just heinous drugs that are unsustainable over the long term. But we're not going to go there. I'm sticking with the first theory and am working very hard to mold my mind into a welcoming, receptive shape going into this Tuesday's second treatment. But let me back up.

I had the first one a coupla Tuesday's ago, and it passed pretty uneventfully. The actual infusion was about an hour, but if you've ever spent any time in an infusion ward -- and I sincerely hope you haven't and won't -- you'll know that one hour becomes many, many more. Anyway. Lorraine was with me, making me laugh -- God, I love her -- and when we went to grab a bite to eat back at a restaurant near home, I got hit with uncontrollable shakes and shivering -- no fever. Teeth chattering audibly, hands and body shaking in just this crazy way -- in 98 degrees! It lasted about an hour and a half, until I was bundled up beneath a bunch of blankets in bed.

The headaches hit that night. Blinding, leveling headaches. Not migraines, just really bad headaches. Duane mentioned that he'd had "debilitating" headaches after his first treatment but not thereafter, so I'm hoping that will be my experience also, as those headaches put me out of commission pretty much through the end of the week. I think they were exacerbated by the extreme dizziness I get when I'm constipated -- a biproduct of my stem cell transplant. Constipation is a biggie with this regimen, and I found myself in the dreaded laxative/stool softener catch-up mode despite my best efforts to be proactive going into treatment.

Loss of appetite was another biggie, so I sort of stopped eating....and when I went back in to get my bloodwork checked a week later, I was 13 pounds lighter! (Actually, 15 now!) How's THAT for a weight loss plan? I jest. (And inwardly rejoice.)

We also found that next Tuesday that my blood pressure was 140/110 -- so they detained me and gave me morphine to address my headache and stomach pain. They threatened to keep me overnight, but the morphine got it down below 100 so they let me go. Turns out Gemzar has a less common side effect of high blood pressure, so now it seems I'll have to go on some sort of blood pressure medication to manage it for as long as I'm on this regimen. That sucks, because I never had a blood pressure problem before and was happy about it.

Like I said, the constipation was an issue, so when I finally did go (with the violent assistance of the magical and effective Sorbitol) I strained quite a bit, and now have done some internal harm to my heretofore nicely healed 10" incision from my open abdominal biopsy. The outside's fine, it's the inside that I've hurt, and the surgeon's office says that I'll just have to not strain anymore and let it reheal for a few weeks. Fabulous! It's very, very painful, and feels like I've got a fresh wound. And here am I with a big fat supply of oxycodone, percocet, and morphine -- yes, I have morphine! -- and I'm afraid to take any of them because they all cause constipation. Ah, the tangled rat in a maze that is the life of a constipated cancer patient.

On a more serious note, I'm trying to massage my mind into some sort of positive resolve around this treatment. I said about it elsewhere:
This first one was just really, really hard, and I can only hope that it was just this first one. I can't live like this for any sustained period. I was talking to someone about it today, and she was telling me that I've adapted to all of these chemo regimens in my cancer career, and that I'll figure this one out too. That's sure as heck my plan. The difference, I pointed out to her, between this one and the others is that this one has no end goal. I went into both ABVD and my SCT stuff with this mentality of, "OK, this is a means to an end; you suck it up, you make the best of it, and you do your time. This is the cost of a cure, so it's worth it." I could also give you an end date on each experience. This time, there is no end date, and there will not be a cure. So it's a really different ballgame, one which will require that I develop different coping skills and improve my emotional resilience.

The pic above is of our newest family member, Sergio. We adopted him from a rescue org in January, and just adore him. He's a pretty neurotic little freak, but then that just really adds to his appeal. Oh, and he's definitely my dog, which is nice since he's warm and soft and makes me feel indispensible and godlike even when I'm feeling all pukey and wobbly.

Wednesday, June 20

Palliative Care

So much has been going on that the prospect of updating here was overwhelming, but I'm determined to get caught up so I can get back to posting smaller, regular updates going forward! The high points of this post: the open abdominal biopsy came back positive for Hodgkins Lymphoma, I've started maintenance chemo, and I got a tattoo!

That tattoo you see above and below is MINE! I just got it! I designed it myself with some important aspects in mind. Now that I know that I'll never again work in a corporate environment, I figured what the hell? The angel wings are meant to give me a feeling of being enfolded and lifted up, elevated out of the moment and carried up to another place. They're also meant to be MY wings, to give me a place to go to in my mind where I can feel like I'm flying and am strong and powerful up high above everything where I can only hear the sound of my own mighty wings. The green leaves are part of my "happy place" -- you know, that happy place you go to in your mind's eye when you need to escape your present reality. (My happy place is truly beautiful and multisensory, and it has helped me so much during some of the harder moments throughout my journey.) Anyway, my happy place includes lying on my back in lush, fragrant grass looking up at rustling tree bows whose green, green leaves cross over one another and the blue sky peeps through along with dappled sunlight. (There's a lot more, but I'll spare you every agonizing detail. ) The word, "Grace" is meant to encompass so much; not just the way in which I hope to travel through the remainder of my days, but also to serve as a reminder to appreciate all the gifts we receive in this life and to savor every moment -- for each one is a gift.

In other news, I started my new chemo regimen yesterday. I'll return to that topic in a minute, but first I wanted to say that I did end up getting the invasive abdominal biopsy. They tried to do it laparascopically, but once they were in there they realized that it would not be possible; apparently my intestines are larger sized, and that, combined with the fact that the node they wanted was right next to a major artery and completely surrounded by organs prohibited doing the biopsy the easy way. So they cut me open, did what they needed to do, and kept me in the hospital for a few days. I now have 4 new scars on my stomach, one of them 10" long! They told me there would be a 6-week recovery time, and I think that really will be the case because it still hurts, surprisingly.

A cure is not an option for me at this point, so the purpose of this new chemo regimen, Gemzar/Navelbine, is to, for the time being, get me back into a temporary remission for as long as possible. The Gemzar and Navelbine (I'm getting them without the Doxil discussed in that link) won't secure me a forever cure, but I'm really hoping it can buy me at least a couple of years without negatively affecting my quality of life. Ah, the "how much time have I got, doc" question: The least I've got is a year, and the most is probably 4-5, unless something else comes out that is (1) effective and (2) available to me. So we'll see.

I got my first treatment yesterday, and I'll get it bi-weekly for as long as it's working. I'll get scanned in 2 months to see if I'm responding. Then, provided everything's still going well, I'll get a little break -- maybe a month? -- in the fall before going back on it again. So far I feel nauseous and really tired. Yesterday, right after treatment, I got a serious case of crazy shakes from feeling freezing when it was 78 degrees...but no fever. There's also a headache that won't quit, and a general feeling of being hungover. Constipation is rearing its ugly head, also. I've got some pill or another to address all of those issues but the fatigue...and that's what beds are for! There's a small chance I could lose some or all of my hair on this, but it's small. I really will be devastated if that ends up being the case, so I'm trying to just think positively and expect a positive outcome on all fronts.


Emotionally, Lorraine and I are pretty messed up. It hurts so much to think of her being left behind, and I can't believe I'm actually going to die from this cancer. I don't want to die -- I thought we'd grow old together, she and I, and that I'd still get to see and do so much more in my life. There's just so much....it's too much to put down here, it's just too much.

Anyway, I'm trying to focus on savoring all my remaining days and moments while acknowledging that this is just really hard.

Saturday, May 12

Looks like it's back

It's been a while since I updated. The latest is that the cancer seems to have returned. My 3-month post-SCT scans showed several nodes in my abdomen, and my onc assured me they were probably just inflammation. Then the 6-month scans showed that they'd doubled in size and increased in number and lit up the PET with the same degree of intensity. The area they really want to get to is surrounded by organs, so my oncologist wanted to spare me an invasive and painful surgical biopsy if possible, so we took a shot at a needle biopsy, notorious for yielding inconclusive results for Hodgkins Disease. Sure enough, the tissue they got after 9 "passes" (attempts -- the needle had to go through organs to get to the node and the surgeon really did hit the node -- I saw it on the CT scan in the doc's office) was what they call "nondiagnostic," meaning it couldn't yield a diagnosis either way. So I'm moving forward with the surgical biopsy, and I'll meet with the surgeon this Friday. He's going to see if he can perform it laparascopically, with a laser and a scalpel. If not, he'll go through my back, cutting a foot-long incision through back muscle and then he'll move my organs to get to one of the nodes to cut it out. I'd be in the hospital for 5-6 days and then recovery would be 4-6 weeks. We have to do it, though, to either confirm or deny the presence of the Hodge. If it is the Hodgkins, then my options are extremely limited and a cure is pretty much out of the question. I'd be looking at palliative care, just trying to keep the cancer's progression and side effects under control for as long as possible. I think I'd be looking at somewhere from one to four years.

Yesterday, Lorraine and I met with my onc to talk about where we are with things and also his recommended treatment plan if it is the hodge back again.

He showed us the scans on the computer and explained the particulars. I have 5 nodes in my abdomen, lots of spleen activity and what looks like the beginnings of liver involvement. There's one tiny node in my chest with minor uptake.

Bottom line, he's an optimist and still thinks there's an outside chance that it's inflammation, but finds it "highly unlikely" that it's not HD. If the surgical biopsy comes back positive for HD, I'll heal for a couple of weeks and then head right into chemo: Gemzar and Navelbine, delivered every 2 weeks for as long as the combo works. So, in the rosiest picture, the rest of my life I guess. We talked about an allo BMT but I have a significantly smaller chance of its curing me than my dying of GVHD-related illness. I knew already that it would be a real long shot --I have no contact with my one full-blooded sibling, who only has a 25% chance of being a match anyway. I just don't think it's worth it, and at this point I'm not interested in pursuing an allo transplant because it's got such a tiny chance of doing me any good. That said, my onc is going to be watching my response to the Gemzar/Navelbine, because if I'm nice and responsive, he'll find the allo prospect much more encouraging. Regardless, he's already begun the search for a 10/10 match in the donor database. If he comes up with a match, and if I respond well to the chemo, we'll revisit the conversation about an allo. At this point, however, I'm more motivated by maintaining some sort of quality of life for less time than chasing after some elusive cure at the expense of my daily well-being. And Lorraine and I are talking about how far I'm willing to let myself deteriorate before I pull my own plug, because I'm not willing to put either of us through the misery of a slow tumble down a slippery slope. When things start to head south I'm going to call it quits with a sense of purpose and dignity.

Obviously all of this is just really hard, and I'm trying to balance my compulsion to put a shiny, brave face on with my desire to just look up into the sky and weep. On a more positive note, I said to Lorraine in that meeting with my doctor that there is a gift of sorts in this; so many people die suddenly, with their lives yanked unexpectedly. Getting advance notice allows you time to say the things you wanted to say and do some of the things you wanted to do before you go, so you're given the gift of time even as you're losing it. You know?

I'm going to start to see a therapist weekly beginning next week, and I'm working on Lorraine to convince her to do the same. I want us both to have our own therapists for 1-on-1, and then to do some sessions together also. I didn't see anyone during ABVD or when I relapsed and had my transplant, but now that I'm facing my own death it might be time to get some support.

In other news, I adore my oncologist, and he seems sincerely upset by this unexpected turn of events. Again, I fall into the category of "Huh??? I didn't see that one coming with her." I always respond beautifully to treatment, but then it's short-lived. The first time I got 14 months out of it since I was in remission after 3 cycles of ABVD, then when it came back I got a nice remission going into the SCT, and now it seems it must have come back immediately after the transplant.

Lorraine and I keep protecting one another from our grief with brave faces and (mostly) hidden tears, but I think we both have this sort of "freshly punched" look. We're trying to hold onto the tiny glimmer of hope that the biopsy and "generalized inflammation" explanation offer, but we are doing the requisite emotional preparation that accompanies this kind of diagnosis.

I'll update again when I have more.

Friday, February 23

Simone's home! Scans disappointing.

Simone is home!!! We got him back night before last, and I can't even begin to explain how relieved and happy I am! He did not find us, we found him. He was down the street from us, and a neighbor called with another "Simone Sighting," only this time we actually saw him! The poor guy was completely traumatized and tried to run away from us. He'd been lurking around where I'd been calling his name and walking around looking for him, a fact which bewildered me but the vet said was not uncommon when a cat is traumatized. We cornered him behind a grill under the plastic cover, and it ended up being a sort of violent capture, with him obviously terrified and peeing all over himself, Lorraine getting rather badly bitten, and me getting scratched. We spent the evening at Immediate Care and then I took him to the vet yesterday. He's a bit banged up (he had to get the last vestiges of a screwed up claw removed under anesthesia) and has been sneezing nonstop from having been out in the rain and sub-freezing temperatures. He was dehydrated, but that has passed. We're giving him antibiotics and painkillers. The poor sweetie has clearly been through the ringer and needs to reacclimate to our home. He's sleeping SO much (I'm sure to catch up) and he just wants to be on top of or next to me. He seems pretty freaked out and jumps at any sudden movements or loud or jarring noises.

What a gift to get him home! If we hadn't been relentless in our search, we wouldn't have gotten him back. He was separated from our home by construction and a big, barking, loose dog....so I'm not sure he would have made it back. His nails were all almost down to the quick and shredded, so it looks like he was either trapped somewhere or maybe tried to climb our wooden fence to get back in. At any rate, my baby's back home!! He was gone for 7 days and it felt like a lifetime.

The scans: the latest is that the abdominal CT showed enlarged nodes in my abdomen. The thing is, those nodes (increased to about 1 cm to 1.5 cm) don't line up with the nodes of the CT portion of the PET/CT that lit up, nor does the PET portion showing nodes line up with either CT. Wacky.

I spoke to my beloved onc a little while ago, and he doesn't think this is cancer. I agree with him but of course am still a bit freaked out and would have preferred to get good news instead. He believes that it's inflammation and scarring from the transplant, and says that when inflammation is present after receiving intensive chemotherapy, it frequently presents in the abdomen. I don't have any B symptoms, and my disease at the time of relapse was present only around my clavicle, not anywhere in my abdomen. I asked about the high SUV of the PET (ranging 4.1 to a high 10.2) and he said that even at the 10.2 it could be caused by inflammation.

He gave me 3 options:

1. Get a CT-guided biopsy, but because of the location and depth of this node, they'd have to go through my liver, which would present risk.

2. Get the node surgically removed, involving cutting open my stomach and cutting/moving around my organs to get it out.

3. Wait until my already scheduled scans in April and see what they show.

I'm going with the third option. 2 months isn't going to cost me my life if it is cancer, and really the only thing I'll lose is sleep.

He said that he has another patient that experienced this same thing, only they did biopsy that guy's abdominal node and it showed only inflammation.

So I'm in watch and wait until April. It sure as hell would have been nice to get good news, but I'm just going to have to cling to the knowledge that ICE got me into remission going into my SCT and reduced my tumor by more than half, and that radiation reduced it by half again, so it's now down to about 1.5 cm, which is certainly scar tissue, since nothing at all lit up there. I am just going to have to continue to tell myself that this is residual inflammation. In a way, I wish we'd waited until the 6-month point before scanning at all -- hindsight being 20/20, that is.

Lorraine wants to know what we do if it IS cancer. I can't answer that. I can only concentrate on maintaining hope that it's not.

So there's my update! I have the gift of a returned Simone and a little uncertainty with my scans....but all in all I feel well and truly blessed. I know that the next scans will show that these recent funky scans result from inflammation and scarring. To think anything else is madness.

Sunday, February 18

Unclean Scans and My Cat's Gone Missing!

Hello all. On Friday I was supposed to get the results of my post-SCT scan. My oncologist moved up the appt. to Wednesday, Valentine's Day, and he delivered news that we weren't expecting. He does think I'm still in remission, but my PET/CT showed multiple nodes with an SUV of up to 10.5 in my abdomen. The PET slides don't line up with the CT slides in a situation the radiologists calls "misregistration." (That link refers to cardiac misregistration, but in my case it was in the abdomen. See, I had a regular CT of my neck, the site of my relapse. Then I had a full body PET/CT combo, and that's where the disconnect lies. Because of Classical Hodgkin's Disease's orderly and predictable progression from neck to abdomen, it seems unlikely that this is cancer, but we can't say I'm in remission until we see something to refute that scan. My onc thinks my abdomen is lighting up because of residual inflammation from my SCT, as that was the area that took the hardest hit. That really does make a lot more sense than having new cancer develop in a place it hadn't been before and skipping the normal steps of neck and chest before hitting abdomen. Oh well, the CT will tell more, because we will be able to compare the size of my nodes there to the previous scan, without trying to determine activity. So this Tuesday I'll have an abdominal CT, and if that gives continued cause for concern, then I'll have a biopsy of an abdominal node.

So we left trying to be positive about all of it, tried to enjoy a romantic meal for Valentine's Day, and when we got home we realized that my cat of 13 years (my original cat and the keeper of my heart) had somehow gotten out that morning and was missing. All of our animals are inside animals, and we are maniacal about the doors, but somehow that morning one of us messed up. Simone is ALWAYS intensely curious about the outdoors and has been a runner in the past, but never for more than say 10 yards before I got him back in and tried to scare the bejeezus out of him. We have a fenced yard, but we found one of our birdfeeders on the ground and the hook that it had been hanging from bent way down, so that's how he got over the 6 foot fence.

Anyway, we've been searching high and low in our development ever since. It's like looking for a needle in a haystack though, because there are at least 1,000 homes in neighborhoods all built around a very large and winding golf course....so if he crossed one hole, he could be in a completely different neighborhood very far from our house if he took to the streets. Also, 30% of the development is made up of trees and woods -- a fact we used to love. We've put up hundreds of fliers on mailboxes, we've borrowed golf carts daily and ridden the course (strategically) looking for him, and we've spent at least 10 hours a day driving around, walking around, entering homes under construction, and just calling and calling. Lorraine and I are both hoarse and exhausted, and I've been crying since Wednesday night. I swear, this is so much worse than either of my diagnoses, and I'd have another transplant in a MINUTE if I could just get him back. There have been a few sightings in areas quite far from one another, so we race to where they've said they've seen him and either it's another black cat or we can't find any cat at all. Overnight it's been about 15 degrees, and during the day it's in the 30's, so it's COLD! It is supposed to warm up to the 40's and maybe low 50's, so that's good news. I am just devastated; I've had Simone since he was a 12-week old kitten, he predates Lorraine by like 5 years, and he is my SON. I'm just heartbroken.

I guess the good news is that I'm so desperate over Simone that I haven't had time to worry about my uncertain remission and upcoming scan.

Please pray for my Simone, friends. I'm heartsick without him.

Sunday, January 28

All things considered....

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. Some of this update was posted over on the Hodgkins Message Board, but not all of it.

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.

More soon!

Thursday, January 11

Sergio!

I'm going to write up a proper reply to Alan in my next post, but I did want to post a pic of the Italian Greyhound we're adopting on Saturday! His name is Sergio and he's 3-4 years old. The greyhound rescue woman got him from the humane society, where they told her that he'd been "mistreated" by his owner, who ran a pet shop. (She says that she sees no sign of abuse or mistreatment in his behavior.) He's very shy and needs a good bit of reassurance, but I'm sure he'll settle right in once he realizes that he's safe and loved. He's SO submissive he should be a good match for Louie, who's pretty submissive and passive himself. One of them will end up dominating the other to some degree probably, but the key is that they're pretty evenly matched in terms of energy level, temperament, and disposition. I'm so excited that Louie's going to have a friend!

Here he is with some of the big greyhounds at the greyhound rescue center. (He's the little guy on the bottom.) While he's crate-trained and pretty much housebroken (it's always a struggle with Italian Greyhounds,) it doesn't seem that he's been trained otherwise. He doesn't walk on a regular leash, only a harness, and he doesn't know "sit" so it's doubtful he knows other commands. I'll have a little work to do with him. He's just such a sweetheart, though, and smart too, so I am completely confident that with some steady love and some consistent one-on-one attention for the first time in his life, he'll just blossom. He may never be a totally at ease, happy-go-lucky fella in public or large groups, but I know we can help him to feel more confident and less fearful.

I'll post more pic's when we get him back home.

Sunday, January 7

Sarah drags her sorry ass back in.....

Hello, all! I apologize for my silence since getting out of the hospital. I know it's been just a crazy-long time since my last post, and I'm sorry for any worry and annoyance that I might have caused. I honestly do appreciate your caring and interest.

I've reached Day +65, and while I'm doing pretty well now, it's (predictably) been pretty damned hard, both physically and emotionally. My oncologist told me that it would be a start-and-stop practice of recovery at home, sort of a two steps forward/one steps back and then one step forward/two steps back sort of thing – and that's exactly how it's been.

For those that just want to get to my current state without all the gruesome details:

The long and the short of it is that I'm ok now. A lack of stamina and weakness continue and will for some months to come, my mental/cognitive functions are definitely diminished, and I've got some persistent yeast and dermatological issues that I'm told will dog me until I'm off the antibiotics that I'll be on for the next 5-6 months. No hair growth yet -- it takes much longer after the high dose chemo you get for a transplant than for normal chemo. (I got 10 months of chemo over 6 days.) But life has gone on, and I had a great Christmas with Lorraine and the furkids. It's good to be alive, to be honest.

That said, I'm much more tearful now, and I'm battling depression for some perverse reason. I say perverse because you'd think I'd just be grateful -- but I definitely feel grief and anger that my life has been turned upside down by this disease. I'm crying now as I type this. I haven't just neglected this blog, I've neglected my friends also -- I haven't kept up with my oldest, dearest friends, and I'm very quiet at home because I just really struggle with being my old cheerful self. I just don't have it. PTSD (post-traumatic stress disorder) is said to be quite common after a bone marrow transplant (and cancer treatment in general, to a lesser degree,) so maybe I've got some of that going on. I think I'll start with some anti-depressants and then maybe see about a therapist later on. Some people deal with anger afterwards -- I've got some of that, in addition to the sadness and sense of loss. When I talk about it, I speak in terms of gratitude and hope, and refer to the positive possibilities that lie ahead, but I don't know if that's just an old positive habit of mine kicking in. Maybe it’s a defense mechanism. I know that I do feel positive on one level, and then afraid and angry and sad on another altogether. The former is for public consumption, and the latter -- until writing about it here -- has been entirely private. People don't typically want to see or hear about the ugly emotional underbelly, so I've kept it to myself. “If you don't have something nice to say, don't say anything at all” -- and that left me with an ignored blog, and you with no updates at all.

But I am alive, and 2007 does bring hope and possibilities! I'm hoping to be able to return to work in the spring and I know that with time I'll just continue to feel better. Soon I should be getting approval for the Social Security Disability benefits I applied for last summer, so we'll get that desperately needed income at last, and I'm in the process of looking into food stamp benefits (which I definitely qualify for as well) so that ought to help also until I can go back to work. So things should steadily improve.

In other news, I’m back on the weight loss wagon! I’m doing about a half hour of cardio (a far cry from what I used to do, but it’s a start and I’m sure my heart and lungs are thanking me for it!) and I’m following the same plan I did to lose the big weight before. So far I’ve lost 4 ½ pounds. I’ll post more on this another day.

OH! We're going to be rescuing another Italian Greyhound adult male so Louie can have an iggy friend! He's just slightly younger than Louie – 3-4 years to Louie’s 5) and apparently very sweet and playful. He's fully recovered from leg surgery (they're prone to broken legs) and is ready for his forever home! We met him yesterday and he was adorable. He’d just been attacked by one of the new full-sized greyhound puppies at the rescue place, and had just gotten a few stitches in his back. So now we wait a couple of weeks to return with Louie to make sure they get along ok on first meeting, and we’ll take home this new guy! He’s purebred IG (Louie’s a mix but seems much more iggy) and he’s very, very wimpy. I think he needs some focused TLC to let him know he’s safe in a new home that doesn’t house another 16 dogs! His name is Sergio (Serge) and I don’t know if we’ll change it or not. We’ll see. For now I wish him good healing – and I can’t wait to see him again and bring him home! I really feel with his temperament and energy level he’ll be a great match with Louie, and he’s a big cuddler on the couch, so I anticipate some iggy-on-iggy LURVE once they relax in their friendship.

For those of you seeking to learn from my SCT experience – or otherwise just gluttons for punishment – I'll share more details on my post-SCT experience below:

When I got out, the biggies were weakness, an inability to eat (I ended up going like 3 weeks consuming nothing more than about 300 calories a day,) bowel/stomach problems, and a horrible case of full-body Candida resulting from the astronomical doses of antibiotics they gave me in the hospital. It totally wipes out your body's flora system, which for me, anyway, resulted in a pretty stubbornly yeasty existence that will continue to some degree or another until I get to stop taking antibiotics. A huge problem also was a gruesome case of "radiation recall" in the areas I had radiated (right front neck and upper chest and the same area on the rear side.) It was livid purple, with open, peeling, painful and raw open burns over the entire area -- so I had a straight line straight down the center of my neck (at least now I have visual verification that they DID manage to avoid radiating my esophagus!) Apparently our cells retain a memory of what has occurred to them, and the high dose chemo exacerbated the effects of the radiation to my skin. Poor Lorraine gets major points (as if she needs them!) for applying the cream to my raw, peeling back -- I was like an alligator shedding their skin and it was pretty disgusting. It's healed now, but still much darker in that area, so you see a brown rectangle representing my rads site.

I couldn't eat for a few weeks after getting out for a couple of reasons. First, my taste buds were totally shot -- things either tasted like crap or I couldn't taste them at all. Second -- and this was actually worse than the first reason -- I had this greasy film in my mouth, as if I'd just eaten a bunch of lard. SO disgusting! Anyway, it did pass....and I'm eating just fine now. I did lose 30 pounds though, from my transplant!

Two months out, still no sign of hair growth, and now over the last couple of days my eyelashes have opted to bail also. Not all, so far, but at least half – and I thought I’d been issued a reprieve!

One of the chemo drugs really darkened my skin, which I was told to expect. It has to peel off, and where I had/have the candida and have peeled, it's very light, so I have all these light patches over a dark landscape. It's not the end of the world and will eventually pass, but my reflection in the mirror definitely serves as a constant reminder that I've been through a war. Between the bald head, the radiation scars, and the discolored and patchy skin, I am definitely looking the part of the cancer survivor. It's hard. But this too shall pass, right?

So that's where I am! There are negatives and positives, and the process continues. I’m on the right road, though, and I’m pleased with my progress overall.

Happy New Year, everybody!

Tuesday, November 7

Day +13

WBC - 3.7 (up 500 from previous day)
Platelets - 208 (up 66 from previous day)
ANC - waiting on segs/bands to calculate, but they'll be considerably higher than yesterday's high of 163,200 (will update here when known)
Hemoglobin - 10.9 (down 200 from previous day)
Hematocrit - 31.1 (down 700 from previous day)

Well, I made it through the night without a fever, I am indescribably happy to report. I should be able to get out of here TODAY!!! Lorraine's already left for work, and in the back of the car she'll have a jacket for me and suitcases into which we'll pack up my stuff! No matter how much you go in with, you always leave with more. (Thanks to the kindness of friends and strangers.) She did one little haul last night, taking all the books, games and DVDs, so that's out of the way.

This morning I'm just waiting for the pre-rounds meeting with the Registered Nurse, Ken, whom I love dearly, followed by the rounds at which will be attending the attending onc who manages the rounds, Dr. Flowers, Ken, 2-3 representatives of the pharmacy department, my nurse of the day, and sometimes an interning oncologist who has a sour face and a name I find utterly forgettable.

I can't believe I'm going to be able to see my beautiful Simone (gorgeous black male cat from heaven who's been inseparable from me for I think 11 years) and Louie (the most perfect puppy in the world.) I'm thrilled to death to be seeing Boo (the little, black, terrified, secret cat who literally only comes out of hiding for me) and Gracie (also terrified but still fully committed to fulfilling her role as House Diplomat.) And then of course I can't wait to see Bughead (out-of-her-freaking-mind but indescribably fun and loveable cat) and little Piccina (Italian for "little one" is the name of this scarily fearless, pain-in-the-butt pretty calico.)

Right now I'm having a lot of diarrhea-related pain, so I'm going to close here...but I'm looking forward to updating from home!!

Monday, November 6

Day +12 - Going Home Tomorrow???

WBC - 3.2 (up 1,600 from previous day)
Platelets - 142 (up 65 from previous day)
ANC - 163,200 (up more than 162,000 from previous day)
Hemoglobin - 11.1 (up 1,900 from previous day)
Hematocrit - 31.8 (up 5,900 from previous day)

I might be going home tomorrow!!! I'm so well engrafted, they don't think I'm getting much benefit from being in the hospital any longer. The only remaining concern is the fact that I'm still almost daily getting a fever. They say that they're sure that these are "engraftment fevers" and not any result of infection -- and they have tested literally all potential sources of infection -- so I don't see why having one more little, short term spike would be a dealbreaker on my release.....but it still could be. We'll just have to see first how I get through the night, and then how much weight should be attributed to the fever should I get another one. Very nervewracking.

The other source of concern is the very ugly case of "radiation recall" I have now on my chest and back. I've lost a couple of layers of skin, so my skin looks at best like I've been badly sunburned, and at worst like raw hamburger. They've given me a cream, but I'm going to request a different one that another patient told me worked much better for her because this one isn't doing much of anything and it's given me no relief.

I'll find out tomorrow during the morning's rounds......say a prayer!!! I WANT TO GO HOME!!!!

Sunday, November 5

Later on Day +11

Quick post-rounds update: The attending onc who's on rounds now feels that we can shoot for getting me out of here somewhere around Wednesday/Thursday. Yay! They're phasing me off some of my stuff now, reducing the amount of fluids they're giving me and also cutting out a couple of the antibiotics. They'll watch my dependence on my PSA (morphine pump) and will be looking for reduced use. In order to get out of here, they're going to want to see that I can eat and drink adequately on my own, that pain and fevers are not an issue, and that my counts continue to rise so I can fight infection and all kinds of other good stuff.

The major hurtles now are the eating and drinking. They say that my mouth and throat are looking a little better, but I'm definitely still on an all liquid diet. Even oatmeal is too much for me now.....but not for long!! I predict that tomorrow I'll feel much better than today, and that an upward trend will just continue!

Man, I'm so excited! I am completely comfortable with a Wednesday/Thursday timeframe. I feel like I'll need that time to progress further, and that it will arrive before I know it!

Yay!

Day +11

WBC - 1.6 (up 800 from previous day)
Platelets - 77 (up 34 from previous day)
Hemoglobin - 9.2 (down 600 from previous day)
Hematocrit - 25.9 (down 2 points from previous day)
ANC - 976 (they say this number can fluctuate up and down, but today it looks great, since 1000 is apparently the goal, and even 500 is a great number!)

Get a load of those white blood cells!!! Wooo hoooooo!! I've got a double or nothing bet on tomorrow's results which should make me poorer by 2 dollars and also absolutely joyous! I'm predicting 2.2 -- my night nurse, Mike, says 2.4. I would absolutely love to lose to him again! Today's nurse, Karen, whom I love, is going with a more aggressive 2.6. See why I love her?

Oohh! And there's something called a "Seg/Band" which is some sort of marker in the white blood cells which reflects the really important, best part of the white blood cells. Apparently you want this number to be high to get the best reflection of positive changes in the WBC, and I have a high number, apparently! There's a calculation which uses the seg numbers and the band numbers to calculate the absolute neutrophil count (ANC) which is very important in its reflection of new healthy cells. Segs + bands x total WBC = ANC. That's one way to combat chemo brain!

Now the red blood cells are not doing as well as the white, but that's ok. Angie, you asked me a couple of days ago if I'd been given any blood transfusions or platelets. I have not received any platelets (and I'm participating in a platelet study as well!) but 2 days ago I did get 2 bags of blood, as I did this morning also.

I'm happy to report that I didn't have any fevers last night! Now that is definitely a step in the right direction!

Still got the mouth/throat/head pain, so the PSA (morphine pump) is still a strong ally. I'm hoping that the hemoglobins I'll get from this morning's transfusion will increase the oxygen volume of my blood, thereby allowing my nice new white blood cells to rush to perform repair in my mouth and throat right away.

I'm going to take a nap now because I had an awful night's sleep last night. Then early this afternoon I'll get in some walking laps. With my counts going up I'm feeling much better able to get in some cardio.

I'm going to miss seeing Lorraine today, but she needs to take care of herself now and knock down that cold or flu! I'm so glad she's got a doctor's appointment tomorrow -- maybe she'll be able to get some medicinal support to speed it along before I come home. God, I can't wait to go home.....I miss everybody so much.....

Saturday, November 4

Day +10

WBC - .8 (up 400 from previous day)
Platelets - 43 (up 25 from previous day)

As you can see, my counts are now steadily climbing upward! I feel like a superhero! I'm really looking forward to another jump tomorrow -- I fully expect to be in the 1-somethings with my WBCs...and to some upcoming pain relief accompanying the increased counts as the cells rush first to where repair is most needed.

My abdominal pain has lessened but has not left the building, and my mouth and throat continue to worsen. I'm still running a fever most of the time, which doesn't bode well for an early release, but oh well. Of course I want to go home when they think it safest -- I was just hoping that could be sooner than later.

The "radiation recall" I had before has actually RETURNED! Now does that seem fair? So I have this bright, livid purple-red square which lines up with the outside of my esophagus front and back -- all the surface outside of that vertical line was radiated and is now raw, welty and itchy again. I'm told that it will remain a very dark brown block for at least a few months, until it eventually peels off as all skin does. It's not at all the same color as the other side of my throat and chest, so it's very obvious that some fairly harsh baking has occurred!

In weight loss news, my weight on the scale is holding at the same point it was a week ago (when I stopped eating altogether [again.]) I know that at this point, I must have lost a total of at least 20-25 pounds by the way my clothes are fitting and the feel of my own body. They're loading me up with hydration since I haven't been able to eat OR drink, and I'm just retaining that fluid quite nicely. I'm STARVING and experience so much pain when I try to eat or drink, it's just WONDERFUL to get a nice benefit from this misery! Gotta love the silver lining, no?

I've asked Lorraine to bring down the exercise bike from the bonus room (our home gym) so I don't have to tackle the stairs to get in a little pedaling. I'm really going to try to get in regular exercise (in tiny, gentle doses to begin with) right from the start, and I know that those stairs are going to be too much for me for a while. I seek to remove potential barriers/excuses, not add to them! I told her to ask a friend for some help getting it downstairs -- she doesn't think it's a good idea, so I'm going to have be a hard case about it because I feel very strongly about its benefit. Later on, we can move it back upstairs, but for now, I need it handy.

And on the follicular front, my little stubbies are falling out now. My eyelashes, too, I'm sad to say. Ah well, out with the old and in with the new!

I probably won't be able to see Lorraine tomorrow because she seems to be coming down with something. My nurse and I sent her home today because she kept complaining that her throat hurt her. She's also been sneezing a lot and feeling really run-down -- and she took a 2 1/2 hour nap in my arms this afternoon when I spooned her lovely in my hospital bed. (My nurse got more than a couple of giggles out of her snoring!) She has a doctor's appointment on Monday, so hopefully he'll clear her to come back to me on Monday! I can't stand losing a day with her....