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October 2013

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Your U.S. Representative Needs to Hear from You Today

Dear Friends,

Yesterday, Representative Doris O. Matsui (D-CA) formally introduced the "Bone Marrow Failure Disease Research and Treatment Act" (HR 6884.) This legislation would bring together the resources of several federal agencies to advance our understanding of and treatments for aplastic anemia, myelodysplastic syndromes, and PNH. You can read summaries of the bill and the legislation by visiting AA&MDSIF’s Action Center for this legislation.

Thanks to your efforts, more than 300 Congressional offices are already aware of this legislation. In addition, Representative Matsui yesterday sent a letter to all of her colleagues in the U.S. House of Representatives asking them to cosponsor this bipartisan legislation.

The following Members of Congress have signed on as original cosponsors:

Chris Van Hollen (D-MD)
Sanford Bishop (D-GA)
John Doolittle (R-CA)
Robert Etheridge (D-NC)
Jim Ramstad (R-MN)
Pete Stark (D-CA)
JoAnn Emerson (R-MO)
Jason Altmire (D-PA)
Henry Waxman (D-CA)
Peter King (R-NY)
Jan Schakowsky (D-IL)
Madeleine Bordallo (D-Guam)
Diana DeGette (D-CO)
Jim McGovern (D-MA)
Jim McDermott (D-WA)

If your U.S. Representative is NOT on this list, please CONTACT HIM/HER TODAY and request that they cosponsor this important legislation! Don’t forget, you can also contact their local constituent home office, as well as email their Washington, D.C. office. If your Representative IS on the list, be sure to call or email them to thank them for their support.

The timing is critical. Congress is expected to adjourn in a few short weeks, so our time to act is very limited. Go to AAMDS.org/action and urge action now. Forward this to your family and friends and ask them to join you in contacting their representative. We all know what an opportunity this is!

Current Mood: productive
Current Location: cube farm on earth

Today I got a bit of a reality check from the receptionist at Dr. Hei's office. She has always been so sweet, and happy to see B when he checks in for appointments. Lately she's been sick herself, and away from her post for days or weeks at a time. So B was very happy to see her back today, for the 1st time in 2 weeks.

While I was waiting for B to come out of the restroom so we could leave, I decided to stop by her station and let her know our news.

"They found a donor."
"Yay! That's wonderful!" Accompanied by hand-clapping, squealing and bouncing.
"yeah."
"Why aren't you more excited?"
"Well, it's not a perfect match, so there's more risk, and that's kind of scary."
"Okay, I can see that it would be scary."
"It's not perfect, but they said it's 'good enough'."
"Good enough is all that matters!"

YOu know what? She's right. A perfectionist like me needs to be reminded of these things from time to time. Good enough is perfectly acceptable. Especially after a day of further research re: GVHD and cord blood transplants.

GVHD is on the decline. People are only 30% likely to have a severe case. That really means the mortality rate is closer to 15%. That's a workable number. Also, even though cord blood transplants are looking very promising for children, they're very difficult to accomplish for full-grown people right now. The sheer volume is a problem. And you may not know for a full year whether or not the transplant will "take." That's an awful long time to go without an immune system. With a BMT, you know within several weeks if it's working. If it doesn't work for some reason, you can go back to the original donor for another try (can't do that with cord blood).

The cord blood thing is in clinical trials right now, so there isn't a lot of info on the topic. But if the BMT just doesn't work, it's still in the realm of possiblity to try. It doesn't take as long to find the match for cord blood - just a few weeks, because they're only matching 4 loci. It turns out that the Bone Marrow Donor Bank says you only need to match 6 of 6 loci for a perfect match, 5 is acceptable, less than that is not. B is matching in 7(!) locations with his potential donor. And the one mismatch is in a DNA criteria, not an antigen criteria. So really, it's a very very good match. It's not nearly as scary as it was this time yesterday. Aren't processing and the internet wonderful things?

Tonight, we're having a family dinner and family meeting to discuss everything that's coming up. Gazpacho and communication, what a great combo :)

Current Mood: okay
Current Location: my earth
Current Music: little league world series

This morning we met with the BMT specialist, Dr. Longo at UW Hospital. It was interesting, disturbing, bracing...

So out of 6 possible hits from the donor bank, 5 were a total no-go. The remaining one, #3, is a match in 7 out of 8 criteria or "locations." The A, B and DR locations all match perfectly, but the C location only matches by half. (I have no idea what this means medically or scientifically, I just know they'd prefer 8 of 8 to match). The problem with this type of mismatch is that there will definitely be Graft vs. Host complications. An 8/8 match will have a possiblity of no G v. H. If the G v. H is severe (that's a big, important IF), there's a 50-50 chance that it will be fatal. For the 8/8 match, the odds are better, only 30% risk of mortality. Of course, not proceeding is 100% fatal, eventually (within a couple of years). Heh. Life is 100% fatal eventually.

Anyway. For a second opinion, we're going to be checking with the U of Minnesota Hospital. They're doing interesting things with cord blood. No one cord donation produces enough stem cells for an adult transplant, but because cord stem cells are so immature, they don't have to be perfectly matched either. Only 4 major locations have to match up, and UM is doing this thing where they combine 2 or 3 cord donations into one transplant. The recipient takes much longer to develop a new immune system, and apparently, over time, one of the donor parts will establish dominance in the recipient's body, and the other two will fade away. So recovery from this experimental procedure will take at least twice as long - up to 2 years. And that's assuming our insurance would be willing to pay for it.

From the research we've been doing already, we believed that B would be in the hospital for a minimum of 100 days before coming home to near exclusion for at least another 3 months. Today, we learned that if we go with the UW procedure, the hospital stay would only be 5 weeks (plus the 3 months at home still). And, UW doesn't need us to provide a full time caregiver during the hospital stay. If we go to UM, we're back to the 3 in and 3 out scenario, plus it's 5 hours away from home. If he goes to UW, he'd be in by Oct. 1 and out before Thanksgiving. We've got no idea when he'd go in at UM.

We got to tour the unit today, and yes, it's definitely a hospital, but they've done a lot to make it comfortable for a longer stay. B can totally bring in a laptop, and all the TVs have DVD players, and there are nice gathering rooms with windows and views. If you're not totally sick, you're encouraged to leave your room (but not the wing). Bridgett Flynn, the coordinator who gave us the tour was wonderful. We didn't have an appointment to see her today, but she dropped everything to spend time with us. Dr. Longo sent her in at the end of the consult to bring us some info, and she offered to sit with us and answer questions. Once we had our chat, she offered the tour. The appointment was at 10:00, we didn't leave until 12. My mom will be happy to know we got a copy of B's DNA work for her geneaology project.

After that, we went to World Buffet on South Towne for lunch. That's a pretty good buffet. Came home, napped on the couch, continued the conversation and the processing. That's where we are now - processing. Tomorrow, he'll go in for labs in the morning, and we'll probably snag a minute with Dr. Hei even though it isn't our week to have a consult. B will probably also need a transfusion this weekend, and that always brings Dr. Hei by for a chat. So we'll get his opinion too.

I guess I'm looking for input here. I've never been shy about asking people to weigh in. I know I never consider all aspects of a situation on my own. I need other POVs to make good decisions, and I go looking for them.

So that's the update from my side.

Current Mood: worried
Current Location: home sweet earth
Current Music: PrimeTime

Friday was an interesting day for our household.

1) DH returned from his Friday injection and blood work to find that the mailbox held two items. The first was from Meriter hospital. They've granted us 50% financial assistance. Now we just have to set up the payment plan on the no-longer-a-luxury-car outstanding balance.

2) The second envelope was from Social Security. They've approved DH's disability application, and his first eligible month is July. He'll get his first check at the end of August, and every month thereafter, until he's no longer disabled. The kids may also be eligible to receive assistance, but that decision will be made at a later time. In 2 years, he'll be eligible for Medicare, but that will be too late to help out with the bills for the BMT.

3) DH's blood levels held steady this week, even though he'd typically be due for a transfusion. His hemoglobin actually went up! That's a first,a nd we were all quite relieved and impressed. So no having to spend an entire day mucking about at the hospital. Instead, we were out very early for the farmer's market, and it was truly golorious. We made it back to the house by 9:30 am - the time we've usually left so far this season. However, all we purchased was a new daylily and a box of edible flowers (and breakfast). With our own garden coming on line, we're not so much in need of lettuce or garlic scapes right now.

4) My mom sent us some money! She recently sold her townhouse, and she gave my sister enough to get a good, reliable car that can accomodate two car seats, now that she's separated and her ex took possession of the "family" vehicle. She sent "a little bit" to her own mom. And she says, "I figure you're no less deserving than either of them." So we took the kids shopping for summer clothes. We'll get the car fixed (brakes & tires), get a new water softener, and get the hot tub back in working order. If there's anything left, I'll want to put it in savings, but DH will probably convince me to do something "fun" with it. I think the hot tub qualifies as fun. ::shrug::

5) (not so serious) Friday night we went up to the Dane to celebrate the day's news, and sat once again at the outside bar. We visited with all our young friends and acquaintances, and then a fairly attractive, middle-aged guy sat near us. He turned out to be a UW professor of 18th century literature, originally from Sweden. He is quite passionate about Madison in particular and the US in general. It was quite interesting to hear his point of view on our Puritan-based society. He loves our frenetic pace and drive to accomplish and acquire. He loves that we try to accomodate everyone. - Let me 'splain. No, it is too much, I summarize. When he arrived for his first teaching position in Milwaukee, he had almost no English. He was disabled. "It is like being in a wheelchair with no legs when you lose your words." I'm thinking it had to be even worse for someone whose whole career is based on words. More like being confined to a wheelchair when you've been a track star or downhill skier. His peers and students all helped him to succeed. Now he is a popular teacher, and he has many friends and a wife, and feels he belongs here. He says, "If I am from America, and I go to Sweden to teach, with only a little Swedish, I will never belong. They will all laugh at my Swedish and noone will help me. This is why I love America." As it turns out, his favorite hangouts are our favorite hangouts,a nd we know many of the same people. So maybe we will continue the discussion. I certainly hope so. I can't wait to get his reading list out of him!

Current Mood: pleased
Current Location: still earth
Current Music: funniest home videos

Some of this stuff is a repeat for regular readers here, but this is the update I sent out to my family's yahoogroup today:

Well, as you can see below, Wayne has gently kicked me in the butt to get me to post an update about

barley52 (thanks, Wayne). The real kicker is, Aunt Jean had to call this weekend and ask for an update to get me to sit down and type. Sorry about that.

( long, repetitious update of the past month )

For my part, I've been on the receiving end of such kindness from so many people from strangers to dear friends, that I find myself attempting to be more patient with other people, and more giving of warmth, affection and kindness. I'm finding a lot of wisdom in the motto "love shared is love multiplied." Today was the first work day after the time change, and it was truly a delight to be able to take a walk after dinner (after 7 pm), with the sun above the horizon the entire time. Mavis joined B and me for the 'short block,' ~ half a mile, which we had to do at B's reduced pace, but that just means we had more time in the sun :) We talked baseball strategy for most of the way (the new season is now underway), because B and Rupert are co-managing a fantasy league team. B used to do this yearly, back in SC, but had dropped it. He got back into it this season at my urging. I figure if you've got to be cooped up in the house, you might as well have something fun to pass the time with. Baseball is his favorite pastime, so.... brilliant, right?

Ok, I guess that's a month's worth. I'll try to do better in the future, but no guarantees. After all, I'm related to people who take 3 yrs to write a letter, then give it up for a phone call <wicked grin>. /family post

I've got stacks of old holiday cards that have handwritten messages in them, but never got addressed and stamped. You'd think that would be the easy part! LOL So, LJ pals, you can see that this format has actually improved my communication skills. OR at least it has increased the frequency of communications, FWIW.

Current Mood: rejuvenated
Current Music: SG-1

We've had a week (not really) of meals out because DH had jumped up out of the neutropenic phase again, starting last Monday.

( Casa de Lara )

On Thursday, DH needed a transfusion of whole blood and platelets (1 unit each) that took a full 5 hours to get done. We left the hospital at 8:00 pm. It's a good thing none of the good shows were playing that night (The Big Dance wa pre-empting everything).

Friday morning I went with DH to his Dr. appointment. Dr. Hei is happy with the way DH is responding to the blood growth meds and he's also happy that we've started the donor search. He wore a mask to come talk to us because he had a cold. Very thoughtful. We met his nurse practitioner too (Karen) and she seemed very capable and nice. In fact, everyon in that office has been terrific.

( The Old-Fashioned )

After dropping DH back at the house for his phone interview, I went to the office and put in 4 hours. I had only planned on 2, but stuff happened, and I had to address it before I could leave. On the way home, I beeped DH and he said he was bored, so I said, "let's go out." Hey, it was payday, and we might not get to go out next week...

( Casa de Lara Again )

After seeing BC lose to Nova (yay for Miss Katie's alma mater), we stopped in at the Great Dane to say 'hey' and have a beer with the crew there. Matt , Justin & Rory were working the first floor bar, the lovely and sweet Jen was hostessing, and Sara was waitressing in the upstairs bar. We each had an IPA (hand pulled) and then DH also had an APA. We were home by 11:00, and hit the bed shortly after Mavis got home at 11:30. Rupert made himself a pizza for dinner, and was it was a little underdone on the bottom and overdone on top he said. So that's another thing he's learning to make that will take some tweaking.

( Eno Vino )

Now that I'm done with the food report, it's time to go make brunch. We (meaning I) have decided to start a new family tradition of Sunday Brunch. We started 3 weeks ago with the Arrogant Bastards' brunch, and have managed to keep it going all month. Today will be waffles with fresh strawberries and sausage. Last week we had baked 'toad in the hole' with a salad that had an orange-dijon vinaigrette. And today I'll be working in the kitchen with my brand new faucet courtesy of Rupert and DH. Rupert helped me pick it out last weekend, and DH coached him through the installation. It took him a bit longer than he expected, but he did a fine job.

Current Mood: impressed
Current Music: windham hill

The Da Vinci Code - Dan Brown
The Catcher in the Rye - J.D. Salinger
The Hitchhiker's Guide To The Galaxy - Douglas Adams
The Great Gatsby - F.Scott Fitzgerald
To Kill a Mockingbird - Harper Lee
The Time Traveler's Wife - Audrey Niffenegger
His Dark Materials - Philip Pullman
Harry Potter and the Half-Blood Prince (Harry Potter 6) - J.K. Rowling
Life of Pi - Yann Martel
Animal Farm: A Fairy Story - George Orwell
Catch 22- Joseph Heller
The Hobbit - J. R. R. Tolkien
The Curious Incident of the Dog in the Night-time - Mark Haddon
Lord of the Flies - William Golding
Pride and Prejudice - Jane Austen (actually, I may have read this)
1984 - George Orwell
Harry Potter and the Prisoner of Azkaban (Book 3) - J.K. Rowling
One Hundred Years of Solitude - Gabriel Garcia Marquez
Memoirs of a Geisha - Arthur Golden
The Kite Runner - Khaled Hosseini
The Lovely Bones - Alice Sebold
Slaughterhouse 5 - Kurt Vonnegut
Angels and Demons - Dan Brown
Fight Club - Chuck Palahniuk
Neuromancer - William Gibson
Cryptonomicon - Neal Stephenson
The Secret History - Donna Tartt
A Clockwork Orange - Anthony Burgess
Wuthering Heights - Emily Bronte
Brave New World - Aldous Huxley
American Gods - Neil Gaiman
Ender's Game (The Ender Saga) - Orson Scott Card (I've only read part)
Snow Crash - Neal Stephenson
A Prayer for Owen Meany - John Irving
The Lion, the Witch and the Wardrobe - C.S. Lewis
Middlesex - Jeffrey Eugenides
Cloud Atlas - David Mitchell
The Lord of the Rings - J. R. R. Tolkien
Jane Eyre - Charlotte Bronte
Good Omens - Terry Pratchett, Neil Gaiman
Atonement - Ian McEwan
The Shadow Of The Wind - Carlos Ruiz Zafon
The Old Man and the Sea - Ernest Hemingway
The Handmaid's Tale - Margaret Atwood
The Bell Jar - Sylvia Plath
Dune - Frank Herbert

I'm going to have to check up on the ones that are not italicized because mostly, I don't recognize them. It's possible I'd actually read some of them.

Also, I'm almost finished with "Bone Marrow and Blood Stem Cell Transplants, A Guide for Patients" by Susan K. Stewart, a transplant survivor. It is a fairly short and easy read, being 179 pages long, with several appendices and an index. It attempts to describe the entire process in plain english. Unfortunately, "easy read" is a misnomer, because some of this stuff you just don't want to know, ya know? OTOH, it is also very straightforward, and does a good job of categorizing risks and their likelihood of happening. So, it's like tough love - all the good and the bad whether you want it or not, because you need it. And it helps you think of things you want to ask the doctor yourself. This one wasn't on my list of books for the year the last time I posted it, but once it arrived in the house... Anyway, I recommend it for anyone who wants a quick and thorough course in BMT.

Current Mood: gloomy
Current Music: Bones

barley52 has been having chest pains all week. Not the gripping, can't breathe or move kind, more like the achy, deep kind of pain down in his bones. This is a side effect of the blood growth drugs he's taking. Did you know that when you are born, you have marrow in all of your bones, but by 6 or 7 yrs old, pretty much only your torso still has marrow (and for some, the long bones in your thighs)? So that weird, deep pain he's got in his sternum means the drugs are kicking his marrow's butt. Finally.

This is borne out by this week's numbers, which are nicely improved. That neutrophil count is at 850, so we're really close to the magic 1000. Hemoglobin is really close to normal, being 11.7. They don't let you donate blood unless you're above 12, but the lab report says 14 is on the low end of normal. His platelets are 14, which excites only his Dr, him and me. The nurses just shook their heads, because they're looking for something over 100 to be considered normal. But after so many results in the single digits, 14 is an improvement. Especially since the only reliable way to boost them is with transfusions. He had his last platelet transfusion last Sat., so he's at the tail end of those (lifespan is 6-9 days). If next week's count holds steady or improves, that'll mean he's getting some spillover from the Darbo and Nupagen.

We're in pretty good spirits, considering that on Monday, Mavis stayed home with a stomach ache, on Monday night, I had a fever and ended up staying home on Tuesday with flu-like symptoms, and Rupert stayed home with a stomach ache on Wednesday. Monday and Tuesday nights, DH slept in the living room by himself. Whenever we were in the same room, we both wore a mask. And I had to wipe down the bathroom with disinfecting wipes every time I used it. With all these germs floating around, DH managed to stay healthy! I washed the comfy flannel sheets and he remade the bed on Wed. so we could be together again. The bed really is too big without your partner.

Of course, we're still waiting on the final part to make our vacuum work properly. We thought we'd rigged a lid that would seal okay, but when I tried to use it last week, nada. I'm kinda nervous about not doing the vacuuming, but hey, he survived flu germs, so as long as he doesn't roll around on the floor, I think he'll be okay.

On the insurance front, we were rejected by Badger Care - too much income. We may be able to qualify for a "spend-down" program though. And Meriter has sent the paper work to apply for "uncompensated care." That will all apply to Jan & Feb's expenses. As of March 1, we're covered by United Health Care. It's expensive, and not very extensive, but it should allow the blood & marrow typing to get done. I may be added to the JCI payroll as early as May. At that point, all these insurance worries will be gone. We'll just be paying off whatever's left of the Jan & Feb expenses. I feel pretty confidant that whatever that number ends up being, we'll be able to handle it. It won't be much fun, but we'll handle it. ::nod::

Isn't it funny how you can receive many positive and uplifting comments, knowledge, wishes, etc., but all it takes is one harsh or negative thing to deflate your mood? We try not to let the "ones" actually burst our balloon, but it takes an awful lot of energy. I'm really really grateful that so many people, including total strangers, are willing to keep contributing to the positive side of the equation. We couldn't be doing this without all your support.

Current Mood: content
Current Music: Paul James

I'm not sure I'm in denial, per se. I've been feeling pretty blank the past 3 days. If I've been working my way through those pesky stages, it certainly hasn't been in order. I don't believe I've hit angry yet, but grief showed up back in Jan. Bargaining doesn't seem to be on the radar either. There was a moment, yesterday, when DH said, "shoot" or some such, while we were at the Dr.'s office, that I could feel the tears coming on, but then he did the funniest thing to the nurse, and had all 3 of us gasping and laughing, and that moment passed.

Wednesday, we had the consult with the bone marrow transplant specialist. I thought we were going to learn if DH is a good candidate for the transplant, or if it is even an appropriate prescription for his situation. What we actually learned was this form of MDS with the 7th & 8th chromosomes being affected, will eventually turn into leukemia. Not "possibly" or "probably." WILL. Also, on the way there, the need for transfusions will come closer and closer together. The growth hormones (Darbopoetin and Nupagen) might help keep the transfusions at maximum intervals, but they'll not prevent this outcome. A bone marrow transplant is not something that might be a good idea, it is the only idea. There is nothing else at this time that could possibly work. So, no point in waiting around to see how the maintenance therapies work, Dr. Longo wants to start looking for a donor ASAP. He would have begun on Wed. if our stupid insurance situation had been resolved. We're really only days away from that, but it's frustrating still.

Bone Marrow Transplant. Huh. There's a 30% mortality rate just from the procedure, and graft vs. host disease. If you're in the 70% that survives, there's a 20% chance that the MDS will return. If it returns, well then, it sounds like you're going to be S.O.L. How do I factor these together? Does that mean there's only a 50-50 chance that this extremely dangerous and expensive procedure will work (30+20)? Or is it more like 75% ((70+80)/2)? I'd prefer thinking the latter, really. But I fear the former.

Let's see - anywhere from 8-12 mos just to find the donor (and I'm going to assume one will be found), an extended hospital stay where they kill your own immune system, leaving you vulnerable to ANY DAMN THING that could wander by (yeah, yeah, I know there are precautions), and then another good 12 months recovering. Because your new marrow has to grow, and then it has to produce, and what it produces has to be healthy and plentiful. And then, check ups twice a year to make sure it stays working. It's a damn long row to hoe.

Then yesterday's numbers were so pathetic that it was off for another big transfusion today. Everything slipped. Hemoglobin wasn't too bad at 9, but platelets in the single digits!! (9 also) and white blood cells back down to 2.0. Dr. Hei decided that after only 2 weeks of the growth hormones, he's doubling the Nupagen to twice a week. Those results were really disheartening to all of us. With the neutraphile (sp) at 500, we're only halfway to emerging from the bubble-life. It just doesn't seem fair. OTOH, everyone at our house has been amazingly healthy this winter, so all the handwashing and cleaning and quarantine must be working. But it seems so sad to me that the 15-20 minutes I spend on a barstool waiting for our Friday night "dinner out" to be ready, or the 20 min chatting with the wine or beer guys are pretty much my social life now. I'm somewhat of an introvert, but this is a bit much, even for me. It's at least an order of magnitude worse for DH. HE's the extrovert in the family. All I can say is, if he hits 1000, I'm calling all y'all to come right over and celebrate. It might only last a day, so don't be late.

Looking forward, the timing looks really sucky for the con too. September could be either the time he's getting transplanted, or it could be that he's so neutropenic, that even attending would be impossible. It's all up in the air right now, and I just wish I could see that far ahead, you know? I'm afraid the most realistic thing to do is bow out of the con, but I don't know who would be able to pick it up right now. I'm afraid if I let go of it, it will just be gone. That would make me sad. A lot more sad than knowing all my poly friends were together again, but not attending myself.

Well, I'm off to the hospital to collect up DH. Maybe we'll have a wine tasting tonight with the new finds.

Current Mood: blank
Current Music: olympics

Today, I took DH to the Dr's for blood work and a consult. All his levels were seriously low again, and tomorrow he gets 3 (!!) pints whole blood and a unit of platelets. We're taking him up there at 0800 and he'll pretty much be there all day. At least 8 hours, maybe more. Also, his particular form of this MDS is "RA - intermediate/high." This has to do with the fact that he's consistently low on all three types of blood cells, and he has multiple 'cytogenic' factors (he's got more than one affected chromosome). The other interesting development is that Dr. Hei has worked out a way for DH to start on the blood boosting drugs gratis, so he started on Darbopoetin (which will continue every other week if it's effective) to boost his red blood cells, AND also started Neupogen to boost his white blood cells (which will probably be a weekly thing). We're expecting him to have flu-like side effects for 24-48 hrs from the combo of these two drugs, and he'll also be pretty groggy from the transfusion process, since they load him up with Benadryl to prevent any random reactions.

The hope of all this flurry of stuff happening this weekend, is that his cell counts will be boosted up to a pretty normal level, and the drugs will kick in to put him over the top and out of the danger range. However, it appears that DH is now going to be formally 'retired.' Dr. Hei said to send him the paperwork for permanent disability, so he could fill it out. I guess that's good, because there's no way you can commit to working when you never know when you'll be healthy enough to do it, and even with improved levels, the anemia is so draining that you can't really be highly productive every day of the week. But it's kinda sucky too - our whole life, or world, everything, is changing. Out with the old and in with the new, baybees.

We did get confirmation that whenever DH is NOT neutropenic, he can have salad and venture out in public, so that's heartening. And hopefully that condition will be more prevalent than the other. Also, we're going to be scheduling a consult with the bone marrow folks, but they'll probably want to see his reaction to the available drugs for awhile before doing something that drastic.

On the financial side, I'm now eligible for insurance through my temp agency, and as of 2/20, we'll be covered, and supposedly, there are no pre-existing condition restrictions. So the bills will be manageable instead of catastrophic. Now, if I can just get hired directly by JCI, I'll be able to get even better insurance for even lower premiums, and that would just be super. I mean, if we've got to go through all this, it would be cool to feel like we could handle the costs. Emotionally, we're hanging in there, I'd really hate for the money to be our undoing, ya know?

Current Mood: hopeful
Current Music: John Doe

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Entries tagged with mds

October 2013

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PSA for MDS and other Bone Marrow Failure Diseases

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