First they didn't have his x-rays and wanted to take new ones. We said no. We just paid for complete series in August. So they finally worked out an email swap, and came up with usable printouts.
Then the Dr was worried about how much of B's radiation had been directed above the neck, so there was another hold to call the Oncology folks. We got a green light there.
Finally, they were getting started, but the Dr, poked B's good arm 4 times trying to set the IV, gave up and switched to the "bad" arm, which he got in one try. Weird.
They'd told me "about an hour" when they shooed me out to the waiting room, so I ran to my office to pick up some stuff. Left at 0939, returned at 1015 to be told "he's done!" ::double take:: I paid, and then was escorted back to recovery where we received instructions from the assistant and a hearty goodbye from the Dr. Apparently, "done" is a relative turn, because it was 1045 when we left.
B says he wasn't even aware they'd begun extracting until they were suddenly fitting the new upper denture, and confirming the hard part was over.
A quick stop to pick up more chicken noodle and ice cream (lactose free) and now we're home waiting for the bleeding to stop enough for B to eat. I know the teeth are in there, but I haven't seen enough of them yet to make a report on how they look. They're kind of obscured by the gauze.
So he's back on the soup and jello diet for a couple of days, and softer foods until Monday or Tuesday we think. After that, he'll be smiling wide :D
It has been quite awhile since I have added anything here so I thought a review would be a good thing. The here and now news is that all things are improving again and I am able to do quite a bit more now without paying that high price days afterward. My energy levels are up and endurance is increasing as well. I am looking forward to an upcoming canoeing/camping trip with my DWfullygoldy , and BFF bzdchris , and busman1994 . Getting the boat back on the water will be very therapeutic for me.
The getting here from back there (looking over shoulder) has been exhaustive to the point of not knowing where the next minute of life would come from. Physically my body went through another year of side effects of medication combined with a series of issues not related to BMT but unfortunatly not diagnosed for extended periods. Included in these are a kidney stone OUCH and becoming lactose intollerant what no more cheese AGGGHHHHHH NOOOOOOOOOOOO !!!!!
I have to give a lot of credit to my medical team for being tenacious in there approach as well as including and accepting my own opinion of things. I believe that recovery is enhanced by being and feeling a part of what it takes to get better. Much credit also goes to my mental health team. I began working with a therapist almost two years ago. I knew from experience that I was going to be quickly overwhelmed by all that MDS and a bone marrow transplant would require. I had no idea how I would be able to handle everyday life issues with so much on the table. After working with someone for almost 8 months counter-transferece issues caused a situtation where I had to find a new therapist. This is not easy work when already overtaxed and exhausted. Fortunatly I was connected with someone who not only was able to keep up with me but was also able to challenge my mind to begin making necessary changes. A mens Cancer Group was formed and this was one of the best theraputic interventions I have ever experienced. Currently a break from therapy is in order so that I may now begin to actually put these changes into my life as it is now. I feel very confident that the work that I have done will be as beneficial as the physical healing that my body has accomplished.
I went into this 3 years ago with the attitude and confidence of someone who considered himSelf strong, tenacious and experienced in long term recovery issues. Well I here and now admit that the "BIG C" kicked my ass HARD through hell and half of Georgia ! Give me that Genie Lamp and let me make a wish. I wish that no other person should ever again have to suffer in the manner in which those who face Cancer every day of there lives do. Strength to my good friend oakwind and rest in peace my frined wayfinder .
B came home this afternoon! Calls and visits can begin tomorrow. :)
He says he doesn't feel any better than when he went in, but I can positively say he *looks* better. The puffiness is completely gone from his face, especially noticeable around the eyes. The perpetual frown lines are much less evident - he doesn't look like he's in pain.
Of course, the majority of his symptoms still exist. Thankfully, the fever/chills thing has abated, and the Marinol is definitely helping with nausea and appetite. His pain is pretty much limited to the migraine, and is being controlled by Tylenol instead of Vicodin. He's had veg. soup, crackers w/ peanut butter and 2 cups of herbal tea since he's been home, with no ill effects.
The ultrasound on the gall bladder turned up nothing. The team is pretty much convinced that all his symptoms are drug related, and the goal is to reduce the meds as quickly as possible to reduce the ill effects.
B is down because he really thought and hoped he'd feel substantially better when he came home, but that was not the case. He is very grateful to be home though. Better to feel this way at home than in the hospital.
The other thing that's happening is that the team is trying to get him to grieve for his past life and to "accept" that this may be his life now, that this is as good as it gets. And this is where my ability as caregiver gets called into question. Because I can't believe this idea is anything but utter crap. This cannot be as good as it gets. Just last year at this time, B was driving himself to Dr appointments. He was visiting people, making plans weeks out in advance with no worry that he'd have to cancel. He was cooking dinner nightly and baking breakfast goodies weekly. He was puttering in the garden. He was going out with me at least once a week and enjoying himself. He was living a quiet, but rewarding life.
NOW, he's lying in the bed or on the sofa, usually crying from pain, frustration and fear. This is not a life. The team says you have to accept that your life will be different after the BMT. DUH! We accepted that! Okay, he can't work 50-60 hrs per week in a high stress industry anymore. He might never work again. But lying around in pain, practically unable to care for yourself is a far cry from "a different life." This is not what we signed up for. We've seen people who've done the BMT. They're at worst, semi-retired, healthy, and happy to be alive. That's what we are aiming for. Not this crap he's been living with for months. No one in their right minds would be happy with this.
I wonder if I should keep track of all the drugs he's taken one or two doses of/used for 1-2 days. It could be entertaining. Although I think the cumulative total of the copays would give me palpitations.
So, they decided today that B did not have a bacterial infection in his gut, nor in his blood. Which is good in that you don't want either of those nasties in you. But they still don't know exactly what is wrong. He's just miserable.
His stomach hurts. He gets nausea from food, from drugs, from lack of food and from smelling food on an empty stomach.
His gut hurts.
His lower back/kidney area still hurts, but not as much as when he had the stone. But it will flare up if he doesn't pee regularly. Which is hard to do when you can't eat or drink anything.
His head hurts. This could be stress, medicinal side effects, stress, or a side effect of his eyes being damaged.
His eyes hurt. Probably because of the full body radiation - they warned him this would happen, that he'd develop cataracts eventually. But they're also extremely dry, and one wants to pull crossed frequently.
The edema seems to have been resolved in the aftermath of the kidney stone, a blessing we keep reminding ourselves of.
He has anxiety attacks.
He has no physical stamina to speak of. A walk around the block can knock him down for a couple of days.
Today, they realized that his potassium level was so low that it's practically not on the scale. So, lots of yucky potassium pills. They're big, they expand in your stomach, and they're no fun to endure. But they're easier than taking it by IV which apparently burns like a SOB. They had to quit that endeavor in just a few minutes today becasue he couldn't bear it.
Right now, they've decided the best approach is to back off as many of the drugs as they can, and see if some of the symptoms will go away. They quit the IV anti-biotics this morning.
Yet, he's started a 3rd anti-spasm drug for his intestines (the other 2 had to be discontinued after only a couple days each), they've renewed the marinol - because of the nausea reduction and the appetite stimulus, they're starting a sleeping pill because he hasn't slept a whole night in god-knows-when, they've put him back on potassium, and they've slapped a testosterone patch on his arm (another way too low reading).
I think they're deleting the sirolimus (immune suppressant), and another anti-inflammatory (non-steroidal).
I don't see how they can delete the anti-depressant, the anti-anxiety (unless the marinol resolves this one), the anti-viral, or the heavy-duty acid reducer at this time.
They think he may have to go back on Prednisone, albeit a very low dose, and this may end up being his long-term support drug instead of the sirolimus.
And finally, they've ordered an ultrasound to check for gall stones. (The CT scan on Thursday showed no more kidney stones).
After a terrible night and a pretty rocky morning, B had a decent day today. Tylenol for pain management, he ate a sandwich and some fruit for lunch, but didn't really want the canned peaches we talked him into trying for dinner. He didn't have a major chill or spike a temp, and although he had every reason to be in a terrible mood, he managed to hang in there with a pretty stable and somewhat upbeat mood instead.
We thought he'd go home Monday or Tuesday when he was admitted, but now we don't really know when they'll let him go. The whole clinic is upset by this turn of events. They've told us it's all about B right now - he's the focus of all their attention. But it's very frustrating to watch the professionals be as stymied as we are.
I'm thinking about making a chart that shows all the drugs, what they're for, their side effects and dietary restrictions. Maybe that will help us all visualize what's going on inside of our B.
He's not feeling really well yet, he still has a lot of nausea, but the pain is manageable with OTC pain-relievers, so no narcotics at this point. He did get a decent amount of sleep though, and he's napping again right now as I sit here with my feet propped on the bed, typing away.
There is a consensus that it's past time to start weaning him off the Sirolimus, the main immune-suppressant he's been on since day 1. The treatment team is fairly convinced that the high levels of this drug in his system are causing a lot of the symptoms that have made him miserable for the past few months. The kidney stone was just a very special insult on top of all the injury. Added onto the low-level bacterial infection, and it's really too much for a person to deal with in the long term.
Hopefully this stay will represent a turning point in his recovery, putting him back on the path of continuous improvement. It's really hard to see him like this, knowing how well and healthy he was at this time last year.
We've had a lot of up and downs over the past 2 years, and last year at this time, he seemed a lot healthier, happier and stronger.
Since then we've had treatment for 2 GI infections, discontinued the steroids (but not before they completely trashed his body), discontinued a couple of support meds, suffers from major edema and dry, sensitive eyes, had an accident requiring 4 stitches, and he's now suffering from a kidney stone. He's been on various specialized diets, and is currently avoiding sodium and dairy/lactose.
But. Once the stone is passed, things *should* improve dramatically.
All of his blood counts and liver/kidney function are in the healthy and normal range, so once he's not acutely sick any longer, B should be able to begin PT to get his strength back, and go back to doing the normal, every day stuff he enjoys - driving, cooking, gardening, or as we like to call it, "life."
Also, and I wish I had a picture to share for this, the girl has new ink. On the inside of her right wrist, is 24 pt black script, it says "Bravery" and below that in tiny script, it says 10-06-06 with a tiny red heart at the end. She came home with it last week, to commemmorate B's journey. I kind of want one too.
Well, B came home earlier than expected, on May 6. So early that I went back to work after getting him settled in the house. :)
The best theory is that he had a small intestinal blockage in his small intestine. Too small to see on the CT unless they were really looking for it, but enough to cause a major backup eventually. And once the blockade was well under way, the introduction of NOLA soil into the system via fresh strawberries probably caused the infection. The antibiotics were clearing the infection, and the colonoscopy prep cleared the rest of the blockage, so that when they finally performed the colonoscopy on Monday afternoon, there was nothing important to see. The biopsy confirmed no internal graft vs. host issues too, and that is a major blessing, since treatment would have required a couple of weeks in the hospital.
In the meantime, all the dehydrating activity relieved the lymphedema dramatically, although he's already gaining some of that fluid back. He also had his eyes checked again, and the meds adjusted there, and thinks he's finally getting some improvement. Although, he was getting another of those headaches again when I was leaving this morning. He's off Prednisone completely now (yay) but he's taking a tiny (2 mg) dose of another steroid that he tolerates much better. They're adjusting his pain and anxiety meds too - less narcotics, but actually better results, which is a relief in more ways than one.
He was careful about the reintroduction of food into his system, and as a result was able to enjoy dinner with the Bastards on Sat, and a full-on Sunday dinner event southern-style, with fresh fried chicken and vidalia onion rings, green beans, mashed potatoes and a lovely lemon tart for dessert. The fried chicken was courtesy of bzdchrisand busman1994, since B was craving it the entire time he was in the hospital. It was a fun way to spend Mother's Day. We all ate way too much.
During the past few days, B has been able to be a lot more mobile than he'd been in many months, taking walks in the neighborhood and roaming around town. He mowed the whole yard over a few days! The trip around the square for Farmers Market didn't wear him out, and it seemed to go at our normal meandering pace, without having to stop for rest. It was very encouraging.
We also learned during the hospital visit that the treatment team had been much more worried about graft vs. host issues than we knew about. His mismatch makes it impossible to predict how the GVH will express, and tends to result in difficult to treat cases. But the team is extremely impressed still with his excellent recovery, and were more surprised by the lack of follow-up hospitalizations than they were by this latest trip (only the third one in 18 mos!)
Long story short - it's all good.
HI gang, here I am again in a very samll hospital room flirting with all my favorit nurses. so here is what we know so far ......................................
Yup, lots of NOTHING. More testing is on schedule but it cannot be done until Monday so I am here until at least Monday unless things clear up on there own. There is still a large suspecion that much of this is the result of GvH but nothing definate so far. Monday I shall be scoped, not sure if it will be upper or lower, I was afraid to ask. Toady ,at least there is no pain so far and that in and of itself is a WIN. My biggest regret is that I will be missing my lovely daughters Senior Prom tonight. she , however has promised to come up here and show off her lovely self before she goes. I do love that girl, pics to follow.
Ok thats about it from here, please write and let me know whats going on in your world and thanks to all of you who have sent there prayers ,blessings and energies my way, rest ashured they have been returned two fold.
Friday, he was feeling at least rested, and slightly better in that he was hungry. He still has pain in his eye and his lymph system. He was visited by an opthamologist to get a second opinion on whether or not the Restasis he started 2 weeks ago is the right thing for his eye. That guy merely seemed reluctant to contradict anything the initial Dr had said. He did mention that the drops would take a month to start having an effect. Isn't it interesting that drug companies can make these designer drugs? They all seem designed to mostly part you from your money while you wait for them to take effect. He also had a CT scan. It was ordered in the morning. I arrived at his room during lunch hour. They came to take him to the scan at 7:50 pm.
By 4:00 pm, B was so hungry, even the IV contrast for the CT scan sounded appetizing. Of course, it was not. But it was the first thing he'd consumed since Monday that didn't boomerang. They finally let him try some real food after the scan. He pronounced the chicken noodle soup (noodles!), wheat crackers and jello to be heavenly. He didn't eat much of the applesauce, but I think that was because he was full.
We watched "Bury My Heart at Wounded Knee" in the afternoon. It was sad. It was hard to watch the hero be so frustrated his whole life. He wanted to help his people so much, but the times and the systems were not conducive to actually helping. All the white man cared about was getting the land. And look at what we did with that land (the Dakotas) - practically nothing! All that area is still practically empty, and yet we nearly annihilated multiple cultures to take posession of it. SAD.
We tried to watch another installment of Weeds, but in my enthusiasm, I somehow got Season 2 Disc 2 ahead of Disc 1. So "Wounded Knee" is on the way back, and Disc 1 has been promoted to the top of the queue. We'll be mainlining Season 2 shortly. Weeds is witty, smart, shocking and has some pretty pretty people in it. I wonder if the creator would cite Alan Sorkin as an influence?
So, we're pretty sure they'll send B home on Sunday. Unless he spontaneously heals today. This morning, I've got to get groceries/do laundry, and this afternoon the girls will be in prom frenzy.