So Very Thankful

We didn't have much luck tracking down the fill-in oncologist that my dad saw earlier this month, but on Friday a friend of mine who has connections in the medical world was able to help find another oncologist for my dad. (I don't know why I didn't think to ask her for help sooner.)

The new oncologist is about 1.5 hours away from where my dad lives. He had an opening for an appointment this afternoon, so my dad's wife spent Friday scrambling to get copies of all of my dad's medical records. (Another good argument for always getting a copy of your most recent records every time you go to the doctor, a lesson I've learned through these many years of IF.)

So they drove down to see the new onc today, and the appointment went well. Really, really well. I'm so incredibly thankful.

First, there's some amazing news that I didn't really go into during my last post. And the details of it are still a little fuzzy, since I didn't actually get to speak with the doctor myself. But, basically, the fill-in oncologist Dad saw earlier this month and the oncologist today think that he doesn't currently have leukemia!

Last spring when Dad was first diagnosed, a bone marrow biopsy showed 51% of his blood cells were "blasts", which are immature cells, i.e. leukemia cells. He had another BMB after his one round of chemo at the fancy schmancy medical center 4 hours from his house, and that showed 6% blasts. I don't think he's had another BMB until this month, and this month's showed 5% blasts. Basically, 20% or more is considered leukemia, 5% or less is considered normal, and I guess 6-19% is a gray area that is considered to be progressing to leukemia.

On the other hand, it's not that the doctors have said "Congratulations, you're 100% normal and healthy now!" The fill-in onc, at his one appointment with my dad and without the benefit of the results of all the tests he ordered, thought Dad might have a very rare blood disease called parox.ysmal noctu.rnal hemogl.obinuria. Today's onc, having the benefit of those test results in front of him, thinks that Dad has my.elodysplast.ic syndrome. Both of those have a 30% chance of progressing to the type of leukemia Dad was diagnosed with, and M.DS is still considered to be a form of blood cancer from what I gather in the quick research I've done online tonight. But both of those diseases can be managed, people can live for years with them, and a lot of people who have them don't die from them. So, again, very, very thankful.

The other great news is that today's onc got right on dad's transfusion issue. The iron chelator drug has already been ordered and should arrive by Thursday, and a blood transfusion has been arranged for Wednesday. Ideally he could have used it now given where his blood levels were at today, but I'm guessing perhaps the onc wanted to wait until it's closer to the time the chelator will arrive in order to try to minimize the amount of organ damage from excess iron, since Dad's now at the point where that is a concern.

I think there are also possibly some other drugs he can be given to try to address the M.DS more directly, but he and his wife didn't discuss the details of that when I talked to them tonight. I think we're all just taking a day or so to be grateful about the fact that this doctor didn't tell him to just go home and die; I'll ask them for details about the M.DS drugs sometime during the next few days.

Thank you for all of your thoughts and prayers.

Ups and Downs

Ups:
The antibiotic treatment in NY is done. My uterus should now be squeaky clean and bacteria-free.

I did not gain an obnoxious amount of weight during the trip, despite eating an obnoxious amount of junk - lots and lots of chocolate, a fair amount of other dessert, pizza at least 4 times, fish and chips, mac n cheese, etc. (Clearly one of my favorite things about NY is the food.) Must be all the walking and climbing up and down stairs to the subway and the apartment we rented that kept the pounds from piling on.

Our flight home landed an hour ahead of time. The pilot must've really been stepping on the gas pedal! But I'm not complaining - happy to be home, and got an extra hour of sleep as a result that night.

We have a tentative FET plan. There will be no Lup.ron, no BCPs. It looks like the transfer will be either the week before or the week after Mother's Day, which means no test results during that holiday timeframe (yea!).

It only took one phone call this time for the nurse and I to get beyond the issue of my unpredictable cycles. I don't ovulate with any sort of consistency. I've never, NEVER had a Day 21 progesterone draw that was above 1 during a non-medicated cycle. They are a fertility clinic. We've already been through this issue 3 times before - for the first one-day workup, the first retrieval, and last fall's one-day workup. So why the heck is it so hard to understand that when I say "I don't know when my next CD1 will be", the appropriate response is NOT "Okay, so do you think you'll get CD1 next week?" as if I had just spoken the words into thin air. But as I mentioned, we got through it (and landed on the "no Lu.pron, no BCPs" approach.)

Downs:
My first day back in the office, drama arose. I haven't shared this blog with anyone at work, but just to be safe, I won't go into the details. Suffice it to say that the drama does not involve me at this time, but depending on how it plays out, I could wind up being pulled into another job that is an area in which I have little experience and even less interest.

The FET isn't going to happen before our communicables expire, so we'll be coughing up several hundred more bucks for that.

Really Down:
My dad saw a new oncologist a couple weeks ago, while he was filling in for the oncologist in my dad's small town while she was on vacation. The new doctor (new to my dad, he's actually been practicing for 40 years and is semi-retired, so not new to medicine in general) gave my dad hope and said he thought there was more that could be done to try to treat him. But now the other doc is back, and she refuses to try. She discharged my dad from her care around Thanksgiving because she feels there is nothing more to do, that blood transfusions are pointless (despite the fact that they've kept him alive for the past 4 months), and she thinks he should just go into hospice, stop trying, and accept death. I'm trying to find a way for my dad to get in touch with the oncologist who filled in.

I could understand her feeling that it was time to stop trying if he was like he was in the hospital - delirious, constantly restless, sores all over his body, requiring oxygen to keep his levels above 90%, a respiratory system that seemed to be in decline at various points, etc., but that's not the case. He has his full mental faculties, he's able to walk without assistance, feed himself, talk on the phone (he sounds pretty normal, other than sometimes he has mouth sores that cause him pain), go out to lunch, lead an hour-long church service, and play Yahtzee all day long. It still seems to me like a life worth fighting for.

In the middle of all of that, another challenge arose this week: My dad's iron levels are way too high - 5,100, when the normal is below 400. It's apparently a common problem in patients who get a lot of blood transfusions. Because of the iron level, he can't have any more transfusions. But the transfusions are what's been keeping him going, and he's been getting them every 10-14 days. So we don't have a lot of time to figure out a solution.

The options seem to be phlebotomy (taking a pint of blood at a time out of the body) or iron chelation medications. Dad's not a candidate for phlebotomy because some of the other levels in his blood are too low; that's why he's getting the transfusions in the first place. So it looks like iron chelation is his only option, but the oncologist won't consider doing any sort of treatment at all. I'm hoping we can get in contact with the other oncologist tomorrow.

Obviously, depending on what's going on with him, the FET may need to be postponed again.

Info About the Antibiotics

First of all, thank you to all of you who commented on my last post and gave your thoughts about the transferring one vs. two question. I appreciate all the input, and it's given R and me lots to think about.

A few of you also had questions about the antibiotics stuff and who we're seeing. I don't usually mention the doctors I'm seeing by name (although I realize that by mentioning the location of our clinic, that pretty much gives that one away). But since there isn't much info about there about this topic as compared with mainstream fertility treatments, if you Google "fertile vs. infer.tile" (without the second period), you'll find one of the books that the doc wrote.

He's not an RE, and he doesn't do IVF or IUIs - he pretty much sticks to his antibiotic therapy from what I understand. He's a gyn and pathologist. For those who asked why I'm doing this: we've had several miscarraiges, and it was something that annother IFer mentioned on a bulletin board I'd read a few years back that had helped her after recurrent pregnancy loss. There wasn't any particular test result of ours that made me think "we definitely need to go see him, he's the one who could address this particular test result", we were just looking for another potential solution to all the losses.

I won't go into all the specific details of his treatments here, because there's info in his books and on his site that explains it better than I could; there's also a Yaho.o group started by some of his patients that has a lot of info, and I blogged a bit about what we did back in 2007 when we first went to him, so you can look at Sept. 2007's archives if you're in the mood for more in-depth reading.

What I will say is one of the reasons I chose to go with his approach (aside from desperation :-) ) is because I liked the fact that he is trying to address a root cause of infertility. So much of what infertility treatment is about, at least in our case, has seemed like treatment that attempts to find a way around the problem rather than address it. Sometimes there is no way to address the problem other than to go around it, but in our particular case I think perhaps there are things that can be done to try to address the root cause, and so I wanted to attempt to do that.

I don't know if it will work. Like all doctors in the infertility world, some people love him and some don't, some have great success that they attribute to his treatment and some don't. We'll just have to see what happens in our particular case.

Um, about 'the plan'

Mrs. LC's comment on my previous post made me realize that while I've alluded to various bits and pieces of it, I hadn't actually posted "The Plan".

In short, The Plan was:
- Lose 20-25 pounds
- Go to NYC and get antibiotic uterine lavages in March
- Lose another 5-10 pounds
- Do an FET with 2 blasts in April

In reality, The Plan is looking more like:
- Lost 14 pounds
- Go to NYC (tomorrow!), may or may not get lavages depending on if I'm bleeding
- Lose another 1-6 pounds, depending on how long it takes CD 1 to show up
- Do an FET, number of blasts debatable, in April or May, again depending on CD 1

So, not perfect, but I'm long past obsessing about perfect. RE thinks the antibiotic stuff is "voodoo", but he didn't expressly forbid it. And we got further during the pregnancy when I had the IV antibiotic than we have with any other pregnancy, so we decided to give it another try. (That was the pregnancy with the Turner's syndrome baby, so it's not that the antibiotics didn't work. My body held onto the pregnancy very well that time; unfortunately there was just no hope of the baby making it to the second trimester because it was a complete Turner's. Some babies with partial Turner's do progress.)

Honestly, I would kind of feel better about another IV since that's what we did last time, but NYC doc thinks that's unnecessary this time around. And the lavages are cheaper, so it's not that his recommendation is motivated by getting more money out of us.

With regard to the number of blasts to transfer, a year ago RE was thinking two or three. But given the number of twins from CGH transfers, he told us in October that he'd recommend two, definitely not three.

That sounded fine with me, except that I've been lurking on the boards lately, and there seem to be a lot of twins coming up from CGH/MA transfers of two blasts. A lot. And while I would love to have two at once, I'm concerned about the wisdom of that. I'm already at risk for lots of complications, weigh more than I ideally would like to, and don't even know if my body can carry one baby for any length of time, much less two.

Then I came across some very scary stories about preeclampsia and almost bleeding out during emergency deliveries of twins. R wanted to start packing last night, but instead I forced him to sit and read said stories.

So now I'm thinking maybe it's best to transfer just one. But on the other hand, I have a feeling that if we transfer just one, none may stick. Thoughts? Suggestions? At least we've got a little bit of time on that one.

I plan, nature scoffs

Today is CD 8. We get on a plane in less than 48 hours, and my uterus is supposed to start getting bathed in antibiotics on Monday. I can't be bleeding during that time.

Today I poofed out (my term for bloating) and started spotting. Almost everything about me seems to be so much more normal and healthy since the thyroidectomy - why can't that include my cycles becoming normal, too? Ugh.

I told R he is going to just have to go with the flow (no pun intended when I said it to him.) We have plane tickets, we have an apartment reserved, his parents are coming with us - we're going. Either the bleeding is going to stop and the lavages will start as planned, the bleeding will continue but eventually stop and the lavages will get started a few days late, the bleeding will continue the whole time (I really hope not!) and I'll get IV antibiotics instead, or the bleeding will continue and it will be just a working vacation and nothing more.

Whatever will be, will be.

A (Small) Success

It's amazing what time can do for perspective. When I was in high school and college, if I stood on the scale and it said 130 pounds or more, I was devastated, and my day was ruined.

This morning, I stood on the scale, and the number (notice I'm not telling you exactly what it was) equated to a BMI of 29.9 - the highest possible number it could be without falling into the "Obese Class 1" category on the BMI chart. And I was thrilled!

That's because at least the number is going in the right direction. A year ago this month, at my highest weight ever, my BMI was 36.55 ("Obese Class 2"). I managed to lose 28 pounds - which I don't even feel like I should take credit for since I lost them by eating more and not exercising - before my thyroid surgery. Then I spent four months at pretty much a standstill while my meds got adjusted.

Now, since the beginning of the year, I've managed to drop another 14 pounds, mostly by cutting back a lot on sugar and just being careful in general about what I eat. But still, it mostly feels like it's just my body doing what a normal body with normal thyroid levels is supposed to do, so I still don't feel like I can take a ton of credit for it. Instead, I'll just be grateful for it, and do my best to make it continue.

I don't think I'm going to reach my goal of 30 pounds before our next transfer, but hopefully I can manage to drop at least another 6 to 8 pounds before then, for a total of 20-22 pounds.

Speaking of the next transfer, we are off to NYC in a few days to bathe my uterus in antibiotics, and then as soon as the next CD 1 shows up, we'll get started on the meds for transfer. Although since my last cycle was 48 days, I'm kind of nervous about whether we'll make it for transfer before our communicables expire.

If we don't, I'm not going to stress out about it too much though, because it's dawned on me that if we are able to do a transfer before they expire, we'll either be mourning a BFN or reaching 6 weeks right around Mother's Day. In my world, historically Mother's Day around 6 weeks = miscarriage, so perhaps the transfer being postponed for a week or two wouldn't be such a bad thing after all.