Barley52's Pint of Cheer

Catching Up

Mon, 12 May 2008 14:24:42 GMT

Sorry for the delay in getting this posted...

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.

Huh? sick again?

Sat, 03 May 2008 14:51:37 GMT

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.

Update

Sat, 03 May 2008 12:04:46 GMT

B got a full night's sleep on Thursday, thanks to the judicious application of morphine and lorazepam. He also was receiving some steroids and antibiotics.

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.

Not Again!

Fri, 02 May 2008 12:39:02 GMT

Yesterday morning, Barleypop was admitted to the hospital again. :( I think it's been about 13 mos since his last stay.

He's either got a severe intestinal virus or a severe intestinal bacterial infection. The blood cultures will tell us what's what, but they're still incubating. He spent two excruciating days fighting it at home, but it was very obvious that he wasn't going to beat this without the help of IV fluids and meds. He hasn't eaten anything solid since Monday, and what little liquid he's managed to get down has pretty much boomeranged.

The only good parts are:

+He lost most of the water-weight brought on by the lymphedema, albeit in an alarmingly short time, and now has actual ankles and calves. (~10 lbs in ~half a day)

+He gets to see most of the nurses that he loved so much from the initial stay. A couple have moved on to new phases of their lives, but there were several familiar faces yesterday, and he was happy to see them all even though he was feeling miserable.

Unfortunately, they switched him off of morphine to some other narcotic, because they didn't like the way morphine makes him retch right after he gets it. I say unfortunately, because the new drug made the retching and nausea even worse, and didn't do as fast or complete a job on the pain as the morphine. They're going to revisit his eye pain while he's there too since the Restasis doesn't seem to be helping much. And they're going to look into pain management strategies if he's still having pain after this is cleared up.

He's got his computer, so we may hear from him if he's feeling better this morning. We'll definitely hear from him as soon as he does feel better though - not much else to do in a hospital room with a view of a different wing. B6/644 this time - it's roomier than the last 2 rooms, but the view from the bed is nothing but building. We watched Survivor and CSI last night in the dark, and then visiting hours were over.

Ye-loww

Sun, 20 Jan 2008 16:06:34 GMT

Yup, still here lurking about. for the past two weeks things have been very much the roller coaster ride. I went with fullygoldyto Milwaukee for three days and while she attended her meetings and required dinners and such, I lavished around the Phister Hotel. What a grand place this is and if the walls would just talk I am sure there would be stories of Beer Barons, businessmen, and romantic meetings of all sorts of the " upper crust" .

For the first time in 2, yes Two years I totally immersed mySelf in water, I had the hotel pool ( the one on the twenty third floor ) all to mySelf for about two hours one afternoon. It was quite the experience to be in a bath water warm pool, looking out over the city from such a fine vantage point. Later the same afternoon I spent some time in the day spa getting a massage, a nice steam bath and a shower of grand style. This shower was amazing, it had a rain fixture overhead which totally drenched you in water while jets from all sides attacked the body with stream of water. each and every jet, 8 total and the overhead, were completly independent of each other so temps and pressure were toally adjustable for each one. I spent a good 30 -40 min just allowing mySelf total relaxiation. It was a wonderful trip and I am sure this is what gave me the endurance to get through the past week.

Daily pain continues and it is always something different,generally 3 or 4 things to contend with, and it is getting harder and harder to maintain good mental health. When I feel bad everything is bad, I am angry at so many things and when I am down physically I am unable to shake the disparaging attitude. I sometimes have to take mySelf away from anyone else around me just so I do not unleash all the gunk onto them. Family is also learning the signs and they tend to stay away from me during these times .This tends to become a double edged sword needing support and comfort but unable to be civil enough to allow it.

Yesterday however was such a wonderful day. It started out very badly , lots of hurting and discomfort, bad mood, dangerious thoughts . I had to return to bed mid morning go back to sleep and start over again. Later in the afternoon the family gathered together for hanging out by the fireplace and playing dominoes. Much laughter, comfortable cozy setting and some good food . After Rupert beat us all in Dominoes ( still dont know how he managed that ) we all watched Pirates of the Caribeian (??) Worlds End and laughed some more. I had such a wonderful time with those which I love the most that I totally forgot about how difficult the morning was. WOW thats powerful !!!!!

I am looking forward to gathering with friends later today for a Packer Party. Hopefully the badies will stay away and I can enjoy mySelf and the company of friends.

A funny joke!

Thu, 17 Jan 2008 21:47:26 GMT

Maxine was driving down the street in a sweat because she had an important meeting and couldn't find a parking place. Looking toward heaven, she said, "Lord, take pity on me. If you find me a parking place I will go to church every Sunday for the rest of my life and give up sex and tequila."

Miraculously, a parking place appeared. Looking up again she said, "Never mind; I found one."

Because I couldn't resist

Fri, 23 Nov 2007 15:36:00 GMT

Dear Santa...

Dear Santa,

This year I've been busy!

Last Friday I ruled Iran as a kind and benevolent dictator (700 points). In September I stole kitnish's purse (-30 points). In August I pulled cfxjosh's hair (-5 points). In June I saved a busload of nuns in Angola (326 points). Last month I helped old_man_summer across the street (6 points).

Overall, I've been nice (997 points). For Christmas I deserve a Nintendo Wii!

Sincerely,
barley52

another post

Mon, 05 Nov 2007 19:39:27 GMT

Ok fine, I just lost my whole big post and explination about last weeks events but LJ did not like it so its gone, bye bye! so much to your benifit you geth the abbridged version. Long week, fullygoldycame home on Tues and did a very good job of keeping everything very low and easy going for the upcoming day of testing. Visitors and phone calls keps me pleasently surprised all week . thursday came and I was in a calm peaceful space and while it was a long and eventful day, it all went well. Apparently this time in my Bone marrow Biopsy, I botched and grumbled and complained the whole time, even though I was really not there. I got enough of the memory forget drugs to forget that evening and a good part of the next day ! Fullygoldy broke out her new toy and that table saw made a quick job of finishing out the panneling in the kitchen. Wow what a difference, sucha finished and quality lok the kitchen has now. French counrty says it rather well. Dinner Sat night with bzdchrisand busman1994, S and T was wonderful, great friends, really good people, and good food too. Thanks gals-n-guys
So there ya go, no cuts and I am not going to spell check this one as I just spent 20 min cheling that lost one..pfffttt! Visitors and callers are most welcome, you are most especially appreciated and good peeps as well, especially dancers, I have really enjoyed my Monday lunches and brunches with roguebitch, thanks sweetie. You are all special people, and I did not even mention all of you, but you know your there and so do I :)
Peace Ya'll

day 362 of the long road

Fri, 05 Oct 2007 16:02:27 GMT

Thursday's Dr. appointment marked ( close enough) my one year since transplant. In addition to my normal lab work, I also had a pulmonary functions test. This was done in conjunction with my 6 months since going on prednisone for pnumonia. I have had a nagging cough and Dr.L wanted to determine if I would benifit from the use of an inhaler. Well the test went fine and my lungs are in better shape now then they were so thats all good.

With a clean bill of health on my lungs Dr. L changed his approach to my coughing problem as well as putting that together with how hard it has been to eat lately. It seems my food gets stuck on its way to my stomach and causes great pain. It seems that my esophagus has srunk, due to my glands not secreting properly, and thus is restricting almost anything including normal sinus drainage...yuck huh? So the plan now is to have a endoscope of my esophagus that will streach things back out . According to other patients who have had this done the end result and relief is well worth it. I will have those wonderful "twlight drugs" which I like, but to get them I will have to have an IV and that I do not like at all. I have no place left to stick, well no place that would normally be used and even thinking of alternative veins squicks me badly.

I started Physical Therapy this week as well. Just the initial assesment, where the PT tested my strength by simple resistance, wore me out and I am still sore, although not as bad as I thought I would be. I am familiar with this process and how slow and consistant it has to be. My rebuilt shoulder has exceptional range of motion due to having really good PT's and doing the work necessary . Hopefully this experience will allow me to get into this part of recovery and maybe settle down a bit on the roller coaster effect.

All in all it has been quite a first year for my new female assesories. While there is a bit of a rub between what is me and what is becoming me there always seems to be that bit of "healthy" agitation between male and female. I know things could be a lot worse and after talking to two BMT survivors in the waiting room yesterday, I know things will get better.

Wed, 26 Sep 2007 14:38:55 GMT

Several people have commented to me lately that I have not posted here as often as I had been and were wondering how things were going. Well OK, I guess I tend to not post as much when things get a bit tough. For me, postings like that just erode away at my positive and determined direction so I keep things to myself.

The past few weeks have been difficult. Graft vs. Host has made me very uncomfortable with major outbreaks on my chest,neck, face and head. Lots of burning and itching. I have also been fighting off a cold in hopes of not getting pneumonia and returning to the hospital. Just this week it seems things are a bit better on that front and the nagging cough I was concerned about seems to be calming down. I have once again lost most of my taste and appetite, my mouth tends to break out in blisters when I eat so that makes it even harder to maintain my nutrition. My legs are just about gone completely, I can only walk a very short distance now without my legs becoming very tired and weak. There are several other simi minor discomforts I will spare you of due to the nature of such.

On top of all the physical discomforts, my emotional stability has hit rock bottom. After a consult with the psych dept , on the orders of my Dr., I have obtained yet another diagnosis to deal with. Yup you guessed it, Major Clinical Depression with psycho adjustment features. Heh, sounds fancy doesn't it. Well simply put it means , I have dealt with way too much change and uncertanity and find myself unable to trust my feelings, constant irrational thoughts and bouts of panic and anxity and I am not adjusting to the changes very well if at all. .

I know all of this will indeed get better. My Dr. assures me that I am doing very well and in time things will only get better. I read accounts of others who have gone through this procedure and I am experiencing exactly what most others do at this stage but hey, it does not make it any easier to deal with for sure. It also does not lessen the impact it has on my DW and family. I am thankful for frineds like
bzdchris
and
busman1994
who continue to find ways to distract me from the crap and remind me to keep living that rich life. You guys are great.

Type your cut contents here.

I think about my friends
oakwind
and
wayfinder
, I know they are going through much of this as well, I empathize with you both and hope that with our combined strengths and support we will all be beyond this by this time next year.
For my DW who has been so understanding and taken such good care of me and our family 143 more then ever, thank you.

Well, Dang.

Thu, 09 Aug 2007 18:06:30 GMT

barley52 had his latest checkup on Tuesday, and he's back on the Tacrolimus, in addition to the Sirolimus, in an effort to pull him off the Prednisone sooner.

The bad part of that is he's not allowed to drink alcohol while on Tacrolimus - since both tax the liver. In the short term, this means that this Saturday's annual trip to the Great Taste of the Midwest will be seriously dampened for B. Imagine being surrounded by hundreds of yummy yummy beers and not being able to partake! OH NOES!! So if you're at the "Day of Public Drunkenness" look for us sitting under the trees on the "ugliest blanket ever" (60s Orange floral thing) with bzdchrisand busman1994. I suspect we'll all be spending more time than usual on the blanket instead of in the beer lines.

The good news: Dr. Longo remains very upbeat and positive about B's health. Even with the GVH setback, he's still healthier than any of the other BMT patients from his time period. Dr. L says, "You're not going to die from this. You will get better. It won't always be this way." He attributes his medical opinion to his skill, expertise, and cutting edge use of the Tacrolimus/Sirolimus combo. He doesn't always come out and say this with as much fervor and conviction, but it's the message he's been giving us since diagnosis in Feb, 2006, and he always seems to know when we need reinforcement.

Also good: B's platelet counts are high and stable enough that he can now use any over-the-counter pain reliever he chooses. Woot!

Special message to aenodia, oakwind, legogeekgeezer and wayfinder38 - stay positive. We think of you every day, and are looking forward to being together again.

slowly I turn...

Fri, 27 Jul 2007 18:23:54 GMT

It's been a long and boring three weeks. The GvH continues to be an irritation and because of the flair-ups I have had to remain on a high dosage of prednisone. It has begun to really take its toll on my legs and torso. Extended usage of this drug will begin to " melt" large muscles so my legs get very week and even standing on them for 10 min or so produces rather noticable tremors. Also being back on Serolimus I have to be careful about how much sun I get so most of the day I sit inside, working on a project 15 min or so and then sitting and resting for 20-30 min. By the end of the day (6:00) I am totally wiped out and can barely hold my head up. It does not help that I only sleep 2-3 hrs at a time at night having to get up for one thing or another. Yesterday things may have finally taken a turn, I felt a bit better and the GvH seemed to have calmed down a bit. I had enough energy to even take a walk around the block late in the evening with fullygoldy. Someday this will all be the past, but I really need to stop looking for that day to be tommorrow, it's just not going to happen that soon. Thank you all who have visited, it helps to have company to break the boredom. Thank you for all your thoughts,prayers and concentration of your healing energies. Goldy, thank you for being there for me.

No more beer !

Mon, 09 Jul 2007 12:56:38 GMT

Today will most likely be the last day that I will be able to have a nice refreshing beer. The Dr. had allowed me 1 or 2 a week once he took me off my immune suppressants but the in the past three weeks GVHD has progressively gotten worse and I am almost sure that Dr. Longo will once again put me back on Tacrolimus. This immune suppressant taxes the liver badly and adding ETOH to that mix for the liver to deal with is not a good thing to do. Now I will be the first to say " ...but my liver has been through rigorous training and has held up very well throughout this whole process" however my Dr. takes no risks what-so-ever and I have followed his instruction from the get go. The good news here, hopefully, is that this will effectively end my use of prednisone which will give me back my legs and should improve my energy level as well. I suppose it is a win-win trade off, not to mention I will shed a few more of the weight I have put back on but I surely will miss my weekly treats. So at the end of your day, when you get home and pour that cool refreshing barley treat, hoist the glass up to me and lets share one last pint for awhile and give positive thought to not having to be on immune suppressants for too long.

Tribute to Family Caregivers

Thu, 28 Jun 2007 17:00:00 GMT

In the past two years I have experienced the most challenging task of my life. I have had to literally fight for my life and put total trust into the hands of people I have never met and personally know very little about. I have had to endure procedures that have ravaged my body, taken away my strength, my ability to think clearly and at time my emotional ability to continue. I gave up everything in my life and focused solely and exclusively on myself becoming selfish and totally narsisistic. It is by far the most difficult thing I have ever faced and hopefully will be the penacle of endurance and devastation in my life. Taking all of this into consideration I want to give a tribute to those people who make this most difficult task possible.

Taking care of a person who is going through a process that is life threatening and long term may sound like just another thing to do when someone is sick, HA! When I take a real look at what my DW does for me and what she must endure to complete her day I am totally in awe of how she has managed to maintain any sense of stability. I look at my friends who are going through similar situations and those family members who care for and about them and realize that these people are truly saints, a special breed of individual with the tenacity and endurance of any pro athlete setting records while at the top of there form.

First let us all realize that the process of care giving is a most time consuming function. In terms of longevity, personally, it is about a 3 maybe 4 year process before you can even begin to think things may be back to what you once considered normal in your relationship. I have been going through this for just over 18 months and I have come to realize that my journey is nowhere near complete or normal. I still need more care then I can provide for myself and so thankful that I have someone there to provide that. It was hard for me to drop everything, stop doing for and thinking about anyone else but myself but in terms of thought and emotion I had the easy part. My caregiver </a></b></a>fullygoldy, had to then take on everything that I let go of and continue on plus take care of whatever needs I would have. So think about this she had to continue to be the sole breadwinner, paying attention to her career and her job maintaining a loyalty and dedication to her employer. She had to become the sole head of household and single parent. Making all the decisions, providing all the transportation, either doing or finding ways to keep the household maintenance in check. Cleaning, cooking, scheduling, bill paying, all of this fell into her hands and without her attention would have created a disaster of outlandish proportions. As if all of these responsibilities and duties were not burdening enough, she had to put all of this aside at any moment I may call and say “I need you” and she did. </font>

These were all of the physical parts of being a caregiver, now lets us examine the emotional parts. This for me is the difficult part because in making the decision to take care of myself I had to give up everything that was special and dear to me. My best friend, my lover and my partner was put on the back burner. There was no time for romance, no energy for passion, and no ability for intimate time together. For me this was something I had no say so about. Between procedures, pain, debilitating medicines, body destroying radiation and chemo therapy I had not desire or ability. This also meant the person who was most important in my life had to go through the same changes and losses and she did not ask for that kind of life at all. This is something we still have to deal with and I suspect will have to deal with for a few years to come.

You would think this again would be the hard part but I am learning differently. It is one thing to readjust yourself to take on these decisions and tasks, but it is totally another thing to then reverse the process as slowly I become stronger and able to take on more of what life is about. This realization really pushes me and I find myself doing way more then I should just to try and get back to some form of familiarity and comfortability. Not a good idea because I think this creates more setbacks then it does good. Strength and patience are what is called for here. It is so hard to reverse the roles and begin the process of reacquainting yourself with your partner and lover. Things have changed, nothing is ever the same and now we have to figure out what those changes are and find a way to fit ourselves into those changes and be comfortable. The only choice you get her is to do it or not. As a therapist I have seen families totally destroyed and broken apart because they were unable to make the shift, this right now is my greatest fear, I cannot imagine what goes through the mind of the caregiver. In my opinion this is not something that a casual love or a relationship of convenience could endure. It takes commitment, discipline and a desire to provide a quality of life for someone you deeply care about. The process of reconnection has just begun for me and fullygoldy and already I can see difficulties, misunderstandings and how stressful it is going to be. I am so fortunate and grateful to have </a></b></a>fullygoldyin my life, I dare say I would be here or in the shape I am in without her.</font>

I post this because I feel that people rarely get enough, if any, credit for what they do how hard the work and being able to make the hard decisions that are presented to them. I want to remind myself what a wonderful and special relationship that I have and what it means to me. I want to be able to give importance to what I do have and not moan, and complain about what I do not have. I want others to realize that the process of caring for someone during these times is not a casual thing that can just be incorporated into your everyday life. It totally changes your life and forces you to operate on a level that you could have never imagined nor would have ever chosen. To my dearest wife, thank you. My hope and desire is that some time in the not so distant future we will be able to once again share that specialness, that unique relationship that made us who we are and that while it will not be what it once was, it will be worthwhile, satisfying and complementary to each others wants, needs and desires. I cannot begin to tell you how much my love for you has grown and I hope that I will be able to live up to your example of dedication for the rest of my life. My hat goes off to those other family members who are also in this same position. Stand up and receive your due props Dianna, Julie and Tom. You are special people and deserve all the good things that life could ever supply anyone. Bravo, Bravo, Bravo and Thank You.

Day 255

Wed, 20 Jun 2007 13:43:41 GMT

Yesterday was day 255 post transplant . Monday morning I had noticed that I had a rash pretty much over the majority of my body. I had noticed that the itching had increased over the past week or so but just blew it off as sun dried skin. NOT so much ! On top of experiencing some side effects of radiation ( 8 months out thank you) I have developed a mild case of Graft vs. Host. This is the first sign of this since transplant and is a direct result in my prednoisone being reduced too quickly. So back up goes the dosage of predniosone, which will once again increase my appitite so I will eat enough for 2 people now. Worse then that, it will take more of a toll on my legs which have just begun to recover. Apparently long term usage of this nasty drug will take the legs right out from under you, literaly and eventually render you bedridden because your muscles will be so weak you cannot walk ~ sigh~ . This will probably sound petty but with my appitite increasing and legs getting weaker I will gain back most of the weight I lost with no way to burn enough calories to keep it under control. Not to mention that my mobility and endurance will decrease so doing things becomes more difficult.

The funny thing is I am more concerned about my legs and weight and the real issue here is the GvH. While it is mild right now , IF it becomes more severe it can be a real threat, a real serious threat . This would mean another hospital stay with more IV's and such and I really just want to avoid that. So I am back into my positive mind thinking that my Dr. will take care of the physical part of controling this while I do the positive mental work of fighting and allowing my body to accept the healing. GvH can be an issue for years and years so I suppose what I really hope for is that if I have flare ups from time to time that they all be mild and easily delt with.

I am constantly reminded, both physically and verbally, that this is a long term recovery process and during that time there is a list of side effects and conditions that could be possible.The problem is no-one knows when or what might occur. Possibly nothing and possibly the entire list. I would have thought that 8 months post radiation treatment that any side effects would have abaited by now, guess I was wrong, nasty stuff that radiation.It is hard because as my friends who are going through similar treatments will tell you, you just want it to all be over and have your life back. I think that whatever my life will be when and if this is indeed all over will be so different I will need time to re-discover who I am and what I can do.

Please do not stop the positive thoughts, energy, prayers and support. I have come this far with such good results because I have been able to take this energy and use it to keep a positive outlook towards healing. If you can please remember my friends oakwind, wayfinderand K. Parker. They are all going through tough times and need your thoughts and energies as well.

Day 202

Thu, 03 May 2007 21:39:28 GMT

I have just returned from my weekly Dr. visit this 202'nd day since my BMT and the Dr. has declared me disgustingly healthy. He says I am a bit tanned, been working in the yard, although he would like to see less of the sun on me, thin, fit,blood work all in normal levels. My blood type has now completed it's change over from a+ to O+ so the Red blood cell counts , which have been hanging just inside the normal range at 4.4 will now begin to climb higher and faster.

I have more energy right now then I can harness at times and I can honestly say that I do not remember when I felt this good. The last time I was this fit, felt this good emotionally,physically,spiritually and peaceful was when I met and married fullygoldy20 years ago.

While I realize this journey is not over by far, I am way down the road now and have less of it to travel then I have already traversed. To all my friends who have and are still there with me, Thank You so much for all you have done,EVERYTHING, each and every little thought,prayer,favor,ride whatever it was all a part of where I am now and how I got here. Bless you all. To my friends who are working there own journey through this difficult and unpleasant time. Stay the course,fight as much as you can and do not allow the poison to reside inside your body.Tell it to leave, it is not welcome and cannot thrive. My energies are sent to you for your healing, and endurance.

Peace

Dietary Adjustments & Spring Cleaning

Sat, 21 Apr 2007 12:53:03 GMT

With barley52's medication-induced diabetes, we knew we were going to have to be more careful about what we're eating again. The funny thing is, when we seriously looked at the diet, the overall adjustments were pretty minor.

We switched from plain english muffins and sourdough bread to multi-grain and whole wheat. We switched from regular pasta to whole wheat, and from white rice mixes to plain brown rice. We already were eating lots of fruit, but now we have more kinds of fruit and less juice. He now drinks as much milk as the kids, plus we already drank Silk (flavored soy milk). Oatmeal and Raisin Bran for breakfast have been supplemented with granola, but pancakes and waffles have faded out. Eggs and bacon are still the heavy breakfast.

We've never been much of a bread-with-every-meal family, and lean sources of protein such as skinless chicken breast, tilapia filets, and soy-based substitutes were already highly represented on the menu. Vegetables were never going to be a problem. Salads, greens, raw, al dente - vegetables in any form are always welcome on our table.

Snacks are interesting - cheese and low-fat triscuits have been a staple for years, and are perfectly acceptable still. Saltines are a thing of the past, but apparently, roasted soy nuts are a tasty, crunchy alternative. Smoothies made with bananas and Silk and occasionally peanut butter seem to go over well. Hard-boiled eggs replaced Jello.

Last night for dinner, we went to the Dane, where he had his one beer of the week (the Marzen) plus we split some meatless nachos with the boy. Then for the entree B & I split the pilsner-battered walleye (yes, WI fish fry!). I had one of the pieces and more than half the fries, plus I actually like the Dane's slaw (it's not sweet at all). B had the other two pieces, which he mostly pulled the breading off of, eating the bare fish, very few fries and Rupert's slaw. We were all stuffed to the gills when we left. Later on, B had what i consider to be an enormous bowl of ice cream, and still, his sugar was 200 at bedtime - slightly elevated, but not enough for extra insulin.

The evening Prednisone dose is down to 20 mg (1 pill) now, so I suspect we'll be seeing lower numbers and having to watch that more than high numbers this week. He's being tapered faster than the pulmonary specialist wanted but slower than the BMT team wants. The compromise appears to be working. He's down to 186 lbs, looking very trim and healthy, although he still needs to tone up, and seriously, this is probably the weight he was when we met. If I don't start losing some myself (that 10 lbs came back - argh), we're going to look really funny standing next to each other. But it's nice to see him looking and feeling healthy again.

B spent most of the past week doing projects around the house - rigged an inside button for the garage door opener, added a lock to the basement door, added a new light to the back of the house, replaced a failing lockset on the back door and got everyone keys, finally got Ruby's one key duplicated, supervised Rupert on some yard work, trimmed hedges and burned out recalcitrant stumps. He's got permission to plant things if he's wearing a mask and rubber gloves. Oh yeah, he gave Mavis a long lesson on driving a stick. All of this on top of last weekend's huge effort to clean out the garage with the help of the busman. The old homestead is looking pretty spic and span today :)

Today, I think we're off to the Farmer's Market, if only to walk around - not much to buy this time of year. Then possibly a trip to the mall, so we can get him some pants that actually fit, LOL! It's a shame to not show off his cute butt. Plus some shirts that are only Large would be nice. It's a reasonable way to spend a piece of the tax return.

Recent dr. update

Thu, 12 Apr 2007 16:57:36 GMT

Well out of the hospital again, nasty bout of pneumonia, that really set my energy levels on low low low. I am taking heavy doses of prednisone right but yesterday Dr. Longo cut to dose from 80mg twice a day to 40 mg daytime and 20 mig night. This should help the energy, emotionality, and volitity of mood considerably plus allow me to get longer and better sleep. Overall health is still very good, all my blood counts are way up in normal ranges with the transplant firmly grafted in now. Still watching for signs of ""GvH" but none seen so far, very good news. I am very tired, physically,emotionally and spritually and it wears on me and the family considerably, but we get by with lots of love and talk, and a few rehearhed signs to me from Goldy to keep me in control :-)
Good News ! I have been taken off Tacrolimus(immune supprescent) and the Dr. has cleared me to have 1(one) beer per week. Woo Hoo ! I will probably wait just a bit to take to much advantage of that hoping to gain some more health . Heads up, Goldy will be out of town Mon,Tues and return Wed night next week and if anyone is interested I would love to have some company, lunch,dinner,evening visits whatever. I would enjoy some company. New diseases to learn, the prednisone has given me diabetes(short term) so I now take insulin shots daily, oh boy. this should all end by May hopefully as they continue to reduce the drugs the diabetes will decrease, but still new diet and more shots, and I have to give them to myself ...eeeeekkkk! Your thoughts and e mail keep me going and I appreciate you all, soon I would like to party again but need more health to endure that, Maybe July. Peace to you all

Yay! and Drat.

Fri, 06 Apr 2007 02:24:59 GMT

Barley52 is coming home tomorrow! They switched him over to oral meds today, and did an O2 test, deciding to send him home with oxygen for when he exerts himself too much or has a coughing fit. The rest of the good news is that his lungs sound much clearer today than yesterday, and the visual part of Tuesday's exam has them pretty much ruling out anything fungal. Fungal is bad. Viral is not fun but better than fungal. He also feels much better but doesn't have much of an appetite yet.

The bad news is heavy doses of Prednizone for at least 2 mos to totally kick this thing and then a slow taper off. Unfortunately, Prednizone has many side effects, and one of them is insulin interference leading to high blood sugar and medicine-induced diabetes. So B learned how to use a meter today to test his own blood sugar and learned how to inject himself with insulin. He'll be getting 10 units a day of a long-acting type, with a sliding scale short-acting type to use if necessary before meals. As the Prednizone is reduced in his system, the need for insulin will decrease, and eventually he should be back to normal. In some cases, when people use such high doses of steroids for extended periods, the induced diabetes becomes permanent, but his Dr. said today that they really only see that in people who were borderline diabetic before they went on the steroids, and that B doesn't seem like a likely candidate for that outcome. whew. Other side effects are agression, loudness, racing pulse and mania. So we've worked out some ways to help B calm down or slow down when needed. He doesn't have the energy or stamina to do the things the Prednizone is making him think he can do.

Also, a virus he had a long time ago seems to be wanting to reactivate, and that could cause some real problems, so they're changing him from Acyclovir to something else (can't remember the name). Between the steroids and the anti-viral and the anti-bacterial, he'll be coming home with about $10,000 worth of drugs, and our copay will be around $100. Whew again. I am totally amazed by the cost of these drugs.

Today was filled with all kinds of educational stuff - O2, diabetes, insulin usage, meter usage, diet/nutrition. Yesterday was the psych visits - both from cancer psych and Libby-the-chaplain. I attended a caregivers support meeting, and was told not to deprive myself unnecessarily (if I want to eat a salad or have a drink, I shouldn't avoid them because B can't have them - guess which one I wasn't depriving myself of!) Also, I have no business not spending 20-30 min/day recharging. Hah. easier said than done. I learned that my fear of losing my identity isn't unique, nor is it unique to caregivers. I kinda knew that already.

Also, B learned that the unit needs another Healthcare Unit Coordinator (it's administrative), because they'll be expanding in the fall. He is seriously interested in pursuing this line of employment, and the HUC who told him about it was very excited about his interest. Since Dr. Longo thinks he'll be released back to work in the fall, this could turn out quite serendipitously. I guess this means we'll have to work on his resume this summer. (sekrit message to cfxjosh - I haven't forgotten yours, I just haven't had time.) I'd think that an employee of a hospital would have access to pretty kickass insurance. that would really reduce my stress levels if it were to transpire.

I'm staying home in the morning until B calls and gives me a discharge time. That way, I can change the sheets and get a few hours of work in too. It's going to be a short paycheck next week.

Update

Wed, 04 Apr 2007 03:13:32 GMT

Okay, today, they stuck a camera in B's lungs to look around, and probably suctioned some gunk out too, but I wasn't here beforehand to hear the explanations, and he's so freakin' drugged that he keeps falling asleep in the middle of sentences. His, mine, the doctor's - it doesn't matter - he's there and then he's gone. He's had oxycodone, cough syrup with codeine, morphine, flexerol (sp) and twilight drugs all in the last 24 hrs.

Hopefully tomorrow we'll hear about what they saw in there. They probably also collected samples to see what might grow, but that will take longer to report.

Mavis was a real trooper this week. She's the one who brought B to the hospital yesterday morning, because I had to leave for an overnight in LaCrosse. She stayed with him until after he was settled in his room, called me with frequent updates and gave me his room and phone number. Rupert stayed home alone and called me for the phone number to give his Aunt M so she could do her own checking up.

B had a really rough night Monday, and I guess it doesn't matter much that I was in LaCrosse for that because I would have been at home asleep anyway. But he was able to tell me about it this morning, and when I finally got here at 3:30 this afternoon, I was able to discuss the problems with the nurse without screaming or knocking any heads. The day nurses here are really wonderful and take great care of B, it's just that at night sometimes he can get a clinker.

Tonight, he's breathing easier, getting oxygen at 99%, has no temp and ate half his dinner. He is complaining about being a bit sweaty though. He's had no pain meds since the middle of the night, unless you count the stuff they gave him (twilight drugs) for the procedure this afternoon. He's now PRN for all that stuff, and not feeling the need to take any of it, which is a huge improvement. He's still dropping off to sleep after just a few seconds of quiet or inactivity though.

Mavis is currently on the way back from her night class and will pick me up (I was dropped off here by my new boss today) soon. The plan is to go home for some reasonable amount of sleep, and come back in the morning to be able to hear what the docs have to say. Rupert says he had a salad for dinner. I"m going to have to do something special for them to thank them for being so terrific this week.

Yeah, it's Pneumonia

Tue, 03 Apr 2007 11:36:32 GMT

don't have time for a long post - just a diagnosis.

Mon, 02 Apr 2007 18:34:05 GMT

After a rather rough night last night I was not really sure I would be here today period. My chest completly closed up and felt like an elephant was standing on it. Breathing was a gasp at best. I went into the clinic this morning at 8:00 and by 10:00 I had been x rayed,blood drawn x4 and addmitted into the hospital. Back up on my ole vacatation room on the 6th floor, Room 630 ph# 267-8496. I will be here for at least 4 days while they run every tube,light,suction hose and needle into me to find out why I am having such a hard time beating this. So I just thought I would let all of you know where I was and it ain't over till somebody thats A LOT FATTER THEN ME SINGS !!!!

I need your help

Sat, 31 Mar 2007 05:17:27 GMT

Once again I need to call on my friends to help me out. For 4 weeks now I have been fighting a virus which may now have turned into Asthma. I am running a fever daily and so far it has stayed below 101. If it hits 101 I have been told in no uncertain terms that I will be put into a room with a view. I struggle now daily with getting enough air to breathe much less muster up enough to clear out my lungs. I am having reoccurring broncialspasms and the pain in my chest is extremely difficult to deal with. Please once again send me whatever energies and healing thoughts you may have.I have come way to far now to fall to this but it is beginning to get very serious. I know I can count on your help.
Peace
B

Yuckness

Mon, 26 Mar 2007 16:29:58 GMT

Well life goes on and so do the health issues. I am now fighting a virus that has basically kicked my butt progressively for 3 weeks now.I was down to seeing the Dr. once every other week and now I have been there twice in one week. So much for those medical bills slowing down a bit. Last week I coughed so hard that I had to go the the Dr. for x-ray's and probably cracked a rib. Now my head hurts, my chest is on fire and each time I cough,burp,sneeze yawn, hiccup it is a new adventure in pain. The Dr. gave me the heavy duty pain killers and more anti virus meds along with a nebulizer to open up my chest. Things were looking a little better over the weekend. I cannot sleep in the bed now so I sit up in the recliner to sleep and last night my cough or the pain in my chest woke me up every 30-40 min. The pain killers allow me to go right back to sleep, but only for another 40 min. My appetite is gone again and I have now lost another 5 lbs. The constant drain of energy really wears on you. It takes an increible amount of focus to remain positive. Fortunately my body is dealing with this, my white cell counts and still high as is my hemoglobin. The new marrow is working, it is just having to work really hard. I can tell that mentally I am wearing out, I can no longer watch TV during the day because all I do is sit here and criticize the stupidity or commercial repetitiveness. Music does help but right now pain free uninterrupted 10 hrs of sleep a few days in a row would really help turn things around. The family is helping and making sure I am comfortable but thats about all they can do. I know this is hard on them as well.
The current mantra we are passing along to everyone is " NO PNEUMONIA, NO PNEUMONIA"
Peace

6 Month Milestone

Thu, 08 Mar 2007 18:48:58 GMT

barley52 pointed out to me that yesterday was his 6 month or "half" birthday. It was exactly 6 months prior that he received his new bone marrow. It's so weird to think that because at first we were counting the days, and now we can really switch to months.

In celebration or validation of that switch, Dr. Longo also reduced the tacrolimus by half yet again, meaning he's taking one capsule every other day. In conjunction with that, he gets to drop the magnesium supplements all together. (If anyone wants some extra magnesium, let us know, LOL, it makes a great laxative!) So he has gone from 2 different immune suppressors twice a day to a half dose of one, every 2nd day. That is a dramatic decline. Of course, he's already noticing some increased itchiness in places, his main (so far) GvH reaction. Sure it's annoying, but it is also tolerable, and less pills every day means it's easier to get them all in on schedule.

In addition, the dear Dr. was taken aback by B's admission that he hasn't been wearing his mask in public for the past couple of months. He'd never really said it was still required, and we still avoid large crowds and sick people, so we thought that being allowed to eat fresh produce also meant it was safe to go without the mask. Apparently we were right about that even though the Dr. would have preferred for us to be much more conservative on the subject. The kids have even each been home for a day from school with various winter-related symptoms, and B has avoided catching anything from them, although I did have a short-lived run in with some cold-like stuff.

Dr. Longo also stated that he thinks B will be able to go back to work in about 7 months! That would be October-ish, making diagnosis through recovery about 22 months total. With BMT through recovery being almost exactly 12 mos. That's freakin' amazing, man! B is one tough and healthy dude, I tell you what. /Hank Hill

So of course, now that a return to work is on the horizon, B has to figure out just what the work will be. Full-blown restaurant work is probably off the list for good. He's been investigating some distance-learning opportunities, in fields that have interested him in the past, but no real decisions on that front yet. To keep him busy for the interim, I've assigned him the task of getting our various savings, investment, 401k mechanisms under control and working together in a cohesive manner. We've both got tasks to do in this realm, but he's going to be in the driver's seat.

It all feels like progress and it's encouraging and exciting too, so "Yay! Six Months!" is really the point of this post.