Tuesday, April 28, 2009

Infusions Completed!

I got my last infusion yesterday, and I guess it's a good thing that it was my last one because I got hives from it. Now to wait and see if they help!

I'm scheduled to visit the lab on May 11, and see the hematologist on May 18.

Meanwhile, I came down with a cold over the weekend, which sucks, but the upside is I don't have to leave the house for the rest of the week. And that is definitely a total blessing after the way I spent most of April.

Friday, April 24, 2009

The Infusion Center

I know this sounds odd, but I think I'm going to miss the infusion center after I get my last iron treatment next week.

In some ways, coming here (I'm hooked up to an IV with Venofer as I type) reminds me a little bit of what I enjoyed about going to work in an office. I come in, and everyone recognizes me and knows my name. They greet me and kid around with me as I get settled into a recliner and get vitals taken and hooked up to the bags of liquid dripping into my veins.

Then I spend an hour or so on my laptop doing my own thing. I occasionally exchange a quip with someone, sometimes chat a little with the person in the chair next to me, but mostly do my own thing.

When it's time to leave, everyone says goodbye to me, wishes me a good evening and asks when I'm back in next.

It's a very friendly place to be, and I'm convinced that the nicest nurses and medical assistants work in these oncology departments.


I'm feeling very optimistic about these iron treatments after chatting yesterday with the woman in the next chair, who was getting the same treatment. She has some sort of genetic problem that affects her ability to absorb iron from food or oral supplements. (Her mother and aunt have the same problem and have gotten treatments all their lives.)

The woman, whose name I didn't catch, said it usually takes her about a month for the iron treatment to kick in. Then, she said, it's not the lightning burst of energy I was sort of hoping for, but it's a noticeable improvement of everything from attention span to muscle weakness/strength to shortness of breath.

She said the treatments last longer than they did before chemo for cancer put her into menopause. She now gets them about once a year, and previously received them two to three times a year. She cautioned me about letting my ferritin levels get too low; in her youth, she sometimes was in denial and would procrastinate getting them until her ferritin levels were zero and she became anemic. She told me that now that they know I don't absorb iron properly, I should ask to be tested whenever my energy levels start sinking and ask for infusions when my ferritin hits 30 or below.

I'm kind of excited at the thought that maybe some of these symptoms that I thought were caused by my apparent autoimmune disease might really be caused by my iron deficiency. While it's time consuming to commit to five 2-hour treatments, it's still a fairly easy fix if it helps me significantly.

Time will tell.

The reason it takes 3-4 weeks for the treatment to kick in is because it needs to get into my bone marrow, and my bone marrow has to start churning out red blood cells with more iron in them. At least, that's my layman's understanding of what's going on.

Here's hoping that my June is looking way better than my March and April have been. :)

Wednesday, April 22, 2009

Extreme Fatigue

Just when I think my fatigue/exhaustion can't get any worse, it does.

It's been a killer couple weeks, and this week is just piling it on.

I just can't seem to cope with having something that needs doing and somewhere that needs being on a daily basis. I'm getting desperate for a full day of downtime, although it's bad enough that I suspect a single day of downtime isn't going to cut it.

Yeah, I guess this is turning out to be a "Poor Aviva" post again. Sorry. But if I don't whine here, where can I whine? :)

I think April 9 is the last day I was able to just veg at home alone, and that was trying desperately to recover from not getting home from seder until 10:30 p.m. the night before. Since then, it seems like it's been one commitment after another, mostly doctor appointments but also some social and volunteer commitments.

So the really weird part? It's getting harder to sleep instead of easier as I get farther and farther past exhaustion. I'm walking around like a zombie, but it's challenging to actually fall asleep when I have the opportunity, and I'm waking up earlier than I'd like and not being able to fall back asleep again.

Don't get me wrong -- I'm still getting 10-11 hours of sleep a day, and I have plenty of friends with young children who would be thrilled to get 8 hours. But since I got sick, I've needed to average closer to 13 or 14 hours a day to feel even semi-functional. And let me tell you, I'm not feeling very functional these days, although I'm going through the motions as best I can.

I'm craving caffeine in a way I haven't in years. (I gave up caffeine when I had chronic peptic ulcers in 2000-04.) And boy do I wish I could still take the Provigil for an energy boost.

I figure if I can just get through the next six days or so, I can crawl into bed and not come out until the following weekend.

In the meantime, I've got those iron infusions Thursday, Friday and Monday. I sure hope they kick in over the next few weeks so I can believe it was worth the time, effort and energy to get them. And money. I don't know yet what they're going to cost us out-of-pocket, but I know they'll cost something.

Thanks for listening, folks. And if you wondered why I have owed you email for weeks now, well, this is my excuse.

Tuesday, April 21, 2009

The Visit to the Neurologist

I saw my neurologist yesterday, and the good news is she does not think my brain MRI is typical of MS. Of course, that doesn't rule it out entirely (like lupus, it seems as though none of the tests rule out MS if they're negative, but they can confirm MS if positive).

She did a neurological exam and looked at the pictures of my MRI as well as reading the radiologist's report. (She exclaimed at the idea of bilateral mastoiditis.)
I related my history in the 18 months since I saw her last, as best I remember it.

Conclusion? Probably not multiple sclerosis (good news!) but she doesn't know what I've got either and found it sad that I have not had any significant improvement since I got sick in June 2007.

Since my hematologist has not yet opined on the significance, if any, of my ganglioside antibodies tests being somewhat positive, she wants to wait for my appointment with him in a few weeks before running tests. If he determines that my MGUS is responsible for causing nerve damage, my impression was she won't pursue more tests. If not, she wants to do a spinal tap and several nerve tests to see if that will shed any light on what's going on with me.

Meanwhile, I had just two of my five iron infusions last week. I had to reschedule my third because of car problems (the power steering on my Dodge Grand Caravan sprung a leak in the power steering, and we didn't realize it until it was essentially empty). So I get infusions on Thursday and Friday of this week and the last one next Monday.

Thursday, April 16, 2009

A Weighty Subject

My family is always complaining that I never have any good (medical) news, especially in my blog.

Well, never say never, because here's a piece of good news:

I've officially lost (and kept off for 30 days) the 25 pounds I gained in the first six months of being on high doses of steroids in 2007.

Mind you, there's plenty more to lose. My next focus is the 25 pounds I gained after my 2006 car accident that left me with apparently permanent neck and back problems. At the time of the accident, I was feeling pretty healthy, working out two to three times a week at a gym I'd joined a few months earlier. After the car accident, I found that going to the gym aggravated my back and neck pain, even if I limited myself to walking slowly on a treadmill. I thought it was temporary, and put my membership on hold but after six months of that, I eventually canceled it. Between the calories I was no longer burning at the gym and the extra calories in "comfort food" I ate as I tried to cope with the pain, my weight had climbed.

So, I've got a long weight loss journey ahead, but I'm happy that at least the scale is moving in the right direction these days.

Wednesday, April 15, 2009

The Mystery Continues ...

Have I mentioned that I really don't enjoy mysteries?

It's the one genre of book that I almost never read.

And I certainly never expected to become such a huge mystery to myself or so many doctors.

My personal mystery took a little twist yesterday when one of the infusion nurses gave me a copy of the blood tests I was awaiting from the hematologist. And despite doing a bunch of reading online trying to figure out the test results, I'm still pretty confused.

It doesn't help that the tests are apparently unusual enough that my favorite LabTestsOnline.org doesn't include them. So I googled, refined my search terms, and came across a number of sites that mention them. Unfortunately, most of them are research journal articles that are a bit beyond me at this time.

The hematologist told me he ran these tests to see if my monoclonal gammopathy of undetermined significance (MGUS) was causing any nerve damage. I'm pleased he did, since I've been having neuropathy in both hands and my left foot/leg.

The MAG Antibody IgM (Elisa) test was normal (255 and anything under 999 is normal), as was the SGPG Antibody IgM (0.20, anything under 0.99 is normal) and the ANNA IFA Screen, Reflex (<1:10).

But then there's the series of four Ganglioside tests: GM1 (26, negative); GD1a (50, 30-50 weak positive); GD1b (54, 51-150 is positive) and GQ1b (19, 0-29 is negative).

Here's what the lab result sheet says about the two I'm in the positive zone for:
"GM2 and GD1a antibodies have been associated with Guillain-Barre variants, motor neuropathies and sensory demyelinating neuropathy, while GD1b has been associated with sensory neuropathy."

(My test results don't mention a GM2, fwiw.)

An article I found that was somewhat helpful said this:
Antibodies recognizing GD1a, GD1b, and asialo-GM1 are found in association with motor and sensorimotor neuropathies, as well as ALS and GBS.

GBS, of course, is Guillain-Barre Syndrome, which I'm pretty sure I don't have. ALS is amyotrophic lateral sclerosis, aka Lou Gerhig's Disease, which I'm positive I don't have.

I see the hematologist again in a month to see whether the iron infusions I'm getting are raising my ferritin levels, and I'll definitely ask him about that then. And I'll bring a copy to my neurologist appointment on Monday and see what she thinks.

Speaking of the iron infusions, I seem to be getting mild allergic reactions to them. After the first one, I had a weird feeling -- tightness, slight difficulty swallowing -- at the base of my throat. I took Benedryl and was fine. After yesterday's infusion, I had tingling on my face and the tightness in my throat again. The tingling felt sort of like it feels when novocaine is wearing off after a dental treatment. I also developed a bad headache during the infusion, but I don't know that it's related. I'm a little nervous because it's a stronger reaction than the first day, and I worry it's going to increase the next time.

I'm waiting for a call back to see if they're going to make me abort the treatments.

There was a really neat thing that happened during yesterday's infusion. The center is a combination hematology/oncology clinic, so most of the patients are cancer patients. I was reading my email in my recliner when all of a sudden there's a bunch of clapping and singing, kind of similar to what happens in many restaurants when you tell your server it's your birthday. But they weren't singing happy birthday -- they were singing a song congratulating a young male cancer patient for finishing his last chemo treatment. All the nurses and MAs were gathered around his chair and then gave him hugs after their song and wished him well.

It was rather touching, until I heard him telling the patient in the chair next to him that his cancer had shrunk but wasn't gone so his doctors were going to do a "wait-and-see" what happens over the next couple months. He looked like he was in his 20s, and that is just too young to have a cancer that won't go away. :( I'm guessing chances are good that they'll be seeing him in the infusion center again someday. :(

Monday, April 13, 2009

Yet Another New "Normal"

A person can learn to live with just about anything, I told my acupuncturist last week.

I was complaining about the ear specialist I'd seen who dismissed my worries about mastoiditis (based on my MRI report), who said that if I had it, I'd be writhing on the floor with pain.

But, I told Abby, he never asked me about my pain levels. And he doesn't know the depth of the other pain I live with each and every day since I gave up pain meds. The pain levels I have most days now used to make me cry. Now it's "normal."

Anyone who reads the Rose Is Rose comic strip regularly is familiar with Rose's Dungeon of Resentment. She ends up sitting chained to an iron ball at what looks like the bottom of a very, very deep well. Usually it's because she's angry at her husband, or just in a very, very bad mood. And she always come back out. Eventually.

Rose Is Rose

Last week, I told my internist that that was sort of how this flare, that started back in mid February, felt: I've fallen into this Pit of Fatigue that sucks every drop of energy out of me, and the pit is so deep and has no hand-holds to help me climb out. And yet, I find myself adjusting to this too. Either it will be temporary, and I'll feel better and become more functional again, or this is my new "normal" and I need to find a way to live with it.

I mean, what are the options? You either learn to live with the hand you're dealt, and work around it as best you can, or you kill yourself. And I'm not the suicidal type.

I wish it were as easy as making my mind up to feel better, or "pushing through it" as I've had more than one doctor recommend.

I still have hope that this mystery illness will either go away or get under control, and I intend to continue to pursue a diagnosis and treatment plan. But in the meantime, this is normal. This is my life.


Today I'm scheduled for the first of five infusions of iron to try to improve my low ferritin levels. The hematologist says that the ferritin level is unlikely to be my only source of fatigue, but he's hopeful that bringing it up to recommended levels will give me at least some boost. I get three this week (Monday, Tuesday, Thursday) and two next week (Thursday, Friday). Hopefully this time I'll absorb it properly and maintain my level.

Friday, April 3, 2009

Medical Frustrations

It's been a week of frustrations, trying to get a doctor to determine whether or not I have mastoiditis as suggested on my MRI report last week.

On Monday morning, I watched the clock and called the ENT I've seen in the past at 8:02 a.m. to try to get an appointment asap. First I was told he couldn't possibly fit me in until late May. I immediately started trying to explain that mastoiditis is potentially very serious and I couldn't possibly wait that long. So I was told that they could squeeze me in on April 10 because there had been a cancelation.

So I called my internist's advice nurse. (My internist was out this week because her son had surgery.) I asked whether it was OK to wait that long if there was a possibility had mastoiditis, which can potentially (in rare cases) be fatal. She told me to call the ENT's receptionist again and tell them to ask the ENT if it was OK to wait until April 10.

Meanwhile, I called my immunologist because I figure he treats kids as well as adults and sees a lot of ear infections because kids with allergies and asthma seem to be prone to them. I leave a message asking for a call back and a recommendation for an ENT.

When I haven't heard from him by a few minutes before 5 p.m., I decided to see if I could make an appointment since I still have a wheeze from the infection I had a few weeks ago. They fit me in the next day.

So Tuesday I see the immunologist. He doesn't like the sound of my wheeze and wants to put me on Prednisone to try to clear it up. But then we talk about the possible mastoiditis, and after he takes a minute to look it up, he tells me I need to see an ENT asap and that he's not comfortable suppressing my immune system if there's a chance I have a serious infection like that. He wants me to go through my primary care doc (no doctor wants to step on another's toes) but reluctantly gives me several names of ENTs he works with and likes. I call my ENT's office again and repeat what the immunologist said about needing to be seen asap and asking if someone can ask Dr. E directly if it's OK for me to wait. They promise to have him call me back.

Meanwhile, I get a chest x-ray to rule out pneumonia or whatever.

I don't hear from Dr. E that afternoon. In fact, I don't get a call until late the next afternoon (Wednesday), and then it's not from Dr. E. It's not even from his medical assistant. It's from the receptionist, who got instructions from the MA, who got a note from Dr. E saying he doesn't think I have mastoiditis and doesn't think he needs to see me at all. And they cancel my April 10 appointment.

I am not happy about that. And I clearly remember my internist telling me last week that I needed to follow up with Dr. E about my sinuses if nothing else. Whatever.

I go to acupuncture, since the call from the ENT's receptionist comes just minutes before I need to leave. I brought the disk with my MRI on it and the radiologist's report to share with her, and we have fun looking at the MRI on her computer. Her monitor is bigger than my laptop's and clearly has higher definition because we find the two punctate foci on the right frontal lobe mentioned on the report. Of course, we also find two others near each other but in a different position on the left frontal lobe. Or at least we think we do.

At the end of my session, she asks if my mastoid process is sensitive and presses on it. I practically levitate off the table. Yes, very sensitive. She urges me to please call and make an appointment with one of the ENTs the immunologist told me about.

I call the one the immunologist particularly liked and they can't fit me in until April 9, which is actually pretty quick considering I'm a new patient, but they put me on the cancelation list.

On Thursday morning, I wake up to a phone call from Dr. K's office. The receptionist I'd spoken to the previous day had spoken to Dr. K and he wanted me to see a different doctor, who specializes just in ears. He also had his receptionist call the other doctor's office and get me worked in on Dr. W's schedule right away, which was an appointment this morning. Dr. K's receptionist said that if I really wanted to see him, I could keep my April 9 appointment, but that they would probably have to refer me to Dr. W anyway.

I'm thrilled that I don't have to wait yet another week to find out if I have mastoiditis.

I get to Dr. W's office a little early to do paperwork. I'm surprised when they take me for a hearing test, but I'm fine with that. I finally see Dr. W, who is a very nice but not chatty man in his 70s, I'm guessing. He looks in my ears and says they look fine, which I knew. So he tells me I can't have mastoiditis because I'm an adult and I don't currently have an ear infection. (I had a double ear infection in mid February, treated with antibiotics, which was the start of my ear problems.)

He prescribes a microdose of Xanax for my vertigo. Doesn't address my ear pain at all. Says the tenderness of my mastoid is irrelevant (which isn't what I've read on the Internet, but a lot of doctors don't like hearing that and he dismissed my questions). He confirmed I have increased hearing loss from my last tests, particularly in my left ear. He wants to monitor that annually, and tells me to come back in three months if I still have vertigo.

So frustrating.

And I spent the week waiting for other doctors to call back as well. My OB, who was supposed to call me several weeks ago to discuss the results of my sonohysterogram is MIA. I called her last week to discuss it and was told she was on vacation. Her assistant promised she'd call me back this week, but no such luck.

After two phone calls to my new hemotologist this week seeking the results of my blood work from March 17, I finally heard back from him late today. Most of the stuff was what he expected. He's unhappy that my ferritin levels are only 26 despite my supplements -- 50 or higher is normal -- so he's going to order some IV iron for me. I'll get infusions over five days, and they don't have to be consecutive days. He says that while it probably won't cure my fatigue issues, that most people feel a lot better and are less tired when their ferritin levels are at least 50.

The hemotologist also was unhappy that my Vitamin D level was just 16, again about half of what it should be despite prescribed megadoses of supplements.

He said he wasn't sure what to do about that, but he has a colleague at OHSU, an endocrinologist, who specializes in Vitamin D issues. Who knew that could be a specialty? Anyway, he said he would email his friend today and let me know what he hears back.

He's still waiting for a test result to see whether my monoclonal gammopathy has harmed my nervous system, something I hadn't even realized was possible. He said he would call the lab in Utah and see if he could hurry them up a little.