Tuesday, September 26, 2017

Chemo's for the Cancerous...Right?

So it's been a very long time since my last post here. To catch everyone up:
- we raised the down payment for an absolutely amazing house that we continue to be in love with
- Brynn did have to switch to a new school (again) but her grades have increased *dramatically* and she's in loads of honors classes (even honors chemistry!)
- I've continued to be mostly fine. My chronic GvH (graft vs. host) is as annoying as ever. I did land in the hospital again for myositis. That's what almost killed me last time. But this time we caught it much earlier and I was only in for a week, not a month, and never made it as far as the ICU. I'm still pretty weak in general and I get winded going up stairs or walking up a slight uphill grade, but I'm able to work part-time and do some crafting and go fun places with Brynn, so that's nice.
- The new boyfriend I mentioned back at the end of 2014 continues to be amazing and an unwavering support. He's also very funny (he'll tell you so) and makes some of the world's most groan worthy puns...but so do I, so it's a pretty good match.

That mostly brings you up to date. I'm on immunosuppresants, so there've been too many colds, viruses, and infections to mention. And they always drag on foooooor-eeeeev-eeeer because my immune system is, you know, suppressed. But that's really par for the course.

The primary issue is the GvH, and it's usually manageable. I carry eye drops 24/7 that I use all day long because I have dry eyes. My skin gets itchy (especially when it's hot out) or crazy dry when it's cold out. I have all sorts of issues with all my mucus membranes, especially my mouth where I have raw spots all the time. I can't eat spicy foods at all any longer. Pretty regularly I have rough places develop on my scalp, which are both itchy and unattractive. All in all, it's manageable but it isn't any fun.

So imagine my surprise when my doctor told me that a drug had *just* received FDA approval to treat chronic GvH! Up until August 2017, there were no prescription drugs available as a treatment for chronic GvH, so this was big news. It took about a month to negotiate financial assistance type issues. Imbruvica (Ibrutinib), the new drug, runs about $13,000 for a one month supply. Without financial assistance and my insurance (Medicare, which I have through disability) I wouldn't be getting the drug at all. But last week a package arrived on my doorstep, a month's supply of Imbruvica.
The Imbruvica Welcome Package
I began taking the Imbruvica last Wednesday, so I haven't quite been on it a week. It is technically a chemo drug and is used to treat a handful of different varieties of cancer. But I'm not taking it for its chemo properties; I'm taking it to help with the GvH. Unfortunately, the side effects are the same for everyone. So far I've experienced: nausea, light-headedness, loose stools (sorry, TMI, I know), fatigue, loss of appetite, and muscle pain. In all honesty, I feel pretty crappy. I've cancelled a few different commitments because I just constantly feel tired, nauseous, achy, and not-hungry.

Hopefully, my body just needs a little while to adjust to the new medicine and then I won't feel nearly so bad. I have noticed that one of the rough spots on my scalp, that had been quite red and itchy for months, has largely cleared up. I've not noticed any other GvH related improvements yet, but it's only been a week and I'm hopeful that more good things are down the pike. In the meantime I'll just be over here feeling like I'm going through chemo again. Blargh.

Friday, April 3, 2015

Radical Favors

For the past seven years Brynn and I have fought hard against my cancer. We've had highs (remission!), lows (recurrence), and times we bottomed out (unconsciousness, inability to walk, stopping and re-starting my heart). But we have persevered.

And now I'm asking for help.

It seems the worst of it is over. But the financial aftermath is devastating. Brynn has never lived in a home that has truly been hers. We've lived with friends and with family for years. She's bounced from one school district to another as I've had to relocate for medical treatments.

I want to give her a house for her birthday.

Well...not exactly. But something like that. And I want everyone to be in on it. It is extremely difficult for me to ask for help, but I am asking anyways. Please, *please* help me raise a down payment for a home to call our own.

http://www.gofundme.com/qte5n4m

Monday, December 29, 2014

No News is Good News

I know it's been awhile since I updated the blog, which means it's been awhile since I've updated anyone on my health issues. The positive side of that is simply that I've not had many issues to report. The negative side is sometimes a long abandoned cancer blog is worrisome. In this case though, I was caught up in the whirlwind of being relatively healthy and living the life that affords.

On December 16th I went for yet another CT scan (PET scans are still not covered by insurance). The scans themselves feel very routine at this point, but I'm always nervous about what the results will be. In fact, I'm usually convinced that I've ridden my luck as far as it will take me and that this next scan probably will be bad. I'm always hopeful for good results, but always bracing myself for bad.

This scan was yet another clean result. Nothing to worry about. No need to further investigate anything with a PET scan. My doctor has so much confidence in this and the last several good scans, he is pushing my scan schedule back to every 6 months. I've been going for scans every 3 months for years now. Once, we said we were going to move it back to 6 month scans if my results were good, but it turned out they were not. Now though, my doctor feels like my continued lack of cancer warrants delaying the scans. It's both a blessing (health-wise and financially) and a curse (6 months is a long time to wonder if perhaps the cancer is sneakily re-growing), but definitely a move in the right direction.

For those who have been following along more closely (in real-life or on Facebook), I also had a bout with GvH. The lining of my mouth became so raw that even drinking water was painful. I was put on 60mg of prednisone (a steroid) a day, but not before losing even more weight. This is a large dose of steroids and it did get the GvH under control but it also had (fully expected) consequences.

The one I think is most noticeable is often called moon face. I've experienced it (much more severely) before. I'm overly self-conscious about this, even though it's relatively mild this go round. Other effects include a significant loss of strength, an inability to sleep, an accumulation of fat cells in the belly, and my sense of taste being screwed up (things don't taste like they're supposed to taste).

No where near as much moon face as 2012.
I've been on the steroids for months now, because you have to slowly taper off of them. I was down to 10mg/day but stalled out there for several weeks because my mouth and skin looked like the GvH was trying to flare up again. Finally at my last appointment the doctor told me to taper to 5mg/day. I've already noticed differences, both in the GvH (which is persistently a pain in the arse) and in the negative effects.

During the recent period when my GvH was the worst, I wasn't able to eat properly. We relied on things like Carnation instant breakfast to get the nutrients I needed, but that wasn't quite enough. I was essentially malnourished for several weeks because I *couldn't* eat (oh how I tried). During that time my fingernail growth was thin and brittle. Now my nails are growing out and that paper-thin nail is at my fingertips. It's frustrating because I can see where the healthy nail begins again and can hardly wait to have strong, normal nails.

Lots of other (much more interesting) things have been going on as well. I have a new job, which is wonderful. A new boyfriend, who loves and looks out for me. Brynn is as stubborn as always, but is growing into a young woman I'm proud of (if also infinitely frustrated with). Those are all things for other blogs...or perhaps just for living and enjoying and learning and growing. If I'm busy doing those things and don't make it back to to blog too often, just assume no news is good news.

Sunday, July 20, 2014

A CaT but not a PET

I was due for a PET/CT scan in late June. Actually, in my own opinion, I was *overdue.* Previously, my insurance would not pay for a PET scan any more frequently than once every 3 months and my last PET was in February. That scan had ambiguous results though, so we did a follow-up CT scan in March. My doctor said we would do another PET 3 months after the CT scan, rather than 3 months after the PET (as I had hoped).

But I was patient. I knew the follow-up CT scan had shown that what looked ambiguous in February remained the same size a month later. A good sign, since what cancer does is *grow.* So I waited. But as late June approached and my nerves began to twitch, I got a phone call from my doctor's office explaining it was too soon for a PET scan and insurance was saying they wouldn't cover it.

I didn't accept that for one second. I insisted they pull up my records, which showed I certainly was due for a scan based on the 3 month rule. After some investigation and several additional phone calls we finally found the actual problem. Medicare (my primary insurance) has decided to allow 3 PET scans in a person's lifetime. Which means I've had about 7 lifetimes worth of scans already!

Needless to say, I'm not very happy with this development. Clear PET scans also cleared my mind and soothed my nerves, so missing a scan has been stressful.

But we didn't simply abandon the idea of a scan altogether. The scan I usually would have undergone is a combined PET and CT scan. Since my primary insurance declined coverage of the PET, my secondary insurance followed suit. But I was still allowed a CT scan. So we scheduled one of those for early July.

The CT scan I got required 2 types of contrast (which helps to differentiate things on the scan). The first involved drinking a giant cup of liquid.
And this is after I'd drank the first 1/4 of the contrast
The second is an IV contrast which, when administered, makes you feel like you've peed your pants. It's an unfortunate side effect, especially paired with the fact that I had just downed a small lake's worth of liquid!

The good news is that my CT results appear normal. It's not as good an indicator as the combined PET/CT, but it will have to do. Insurance won't pay for another PET unless there's a change in my status that leads us to believe my cancer has returned. Most likely I would get a CT scan showing potentially cancerous activity. Then insurance would pay for a PET as a follow-up. Hopefully I won't find out. As long as my CT scans are normal, I'm willing to give up the injection of radioactive sugar I was receiving every 3 months with my PET scans. There go my dreams of a radioactive-sugar-induced transformation to a superhero. A sense of having wet my pants is a poor replacement.

Thursday, May 15, 2014

The Warrior...A Poem by Brynn

I have been meaning to post the poem I wrote about having a central line. It's a funny little Dr.Suess-style poem and I read it recently at Jewish Hospital's survivor's reunion. I'll still get around to posting it, but today an entirely different sort of poem came my way.

In the car on the way to dance class Brynn explained that her English class had to write a narrative poem and she told me to guess what it was about. Horses? No. Running cross country? No. Our trips to Disney World? Still no. I finally had to give up. She told me she'd decided to write about us and my cancer.

It might be a little late for Mother's Day, but I don't care one single bit.


The Warrior
By: Brynn

She laid on the hospital bed.
Everywhere you looked,
There would be cords sticking out of her like needles.
Her face was the size of a balloon,
Her curly golden blonde hair was gone,
But the hope and strength in her eyes never left.

“I’ll be out of here before you know it,” she assured me.
But as the days, weeks, months, and years past,
I thought the cancer would never end.

She wasn’t there for Christmas,
She wasn’t there for my birthday,
I had to do a lot of things that a little girl shouldn’t have had to do by herself.

It seemed as if cancer had stolen her from me.

The doctors had done so much,
And the battle was just so rough.
Once everything seemed to be okay,
It all started to break away.

Cancer was beginning to take over the heart and soul.
She had lost a lot of strength,
It had gotten to the point where even her phone was too heavy to lift.
She had to wear a breathing mask because it was too hard for her to breath.
We were all terrified that she wouldn’t last much longer.

But after a while of hard work,
She got better again.
She had to do weeks of physical therapy,
But in the end, she was cancer free.

People say to never be ashamed of a scar,
Because it shows that you were stronger than whatever tried to hurt you.

My mom has taught me to be
Strong,
Brave,
And fearless.
And I wouldn’t trade the world for her.

Saturday, March 29, 2014

When I was dying...

I've been meaning to write this post for awhile. But it's a hard one. Hard to think about and hard to talk about.

Last summer I was sick. So sick I was in the hospital for a month and then in a live-in physical therapy center for awhile after. At various points my friends thought I might not make it. My doctor thought I might not make it. Even I thought I might not pull through. But I thought we'd done an okay job conveying to Brynn that while I *was* very sick, the doctors and I were fighting very hard to get me better.

None of my friends took a picture of me during that time. I think that's one small way of knowing they're good friends. Jason Isbell sings a song with the lyric "One thing that's real clear to me, no one dies with dignity." And it's true. When your body gives out on you, it's ugly and shameful and very, very undignified.

At first I'd tried to ban my friends (and especially The Boyfriend) from coming to see me. The doctors had catheterized me and I was peeing in a bag. I didn't want *anyone* to see. I was even ashamed in front of my nurses. But I kept getting worse and my friends knew that even though my pride might be hurt, I needed them there. So they came anyway.

They kept coming too. They watched over me and watched my stats. They watched me get worse and my muscles get so weak I had a hard time lifting a teaspoon. They told the nurses when something wasn't right.

And Brynn came to see me. We tried to time her visits to where I would be alert and able to communicate with her, but it didn't always work out that way. I was so sick.

And so when I found this picture on Brynn's iPod a couple of months ago, I asked when she'd taken it.

She'd labeled it "MY MOMMA"
I assumed she'd say "when Katie brought me to visit" or "the day Valerie and I went to TJ Maxx then came to see you." I was not prepared for her answer. She said "when you were dying."

Not when you were really sick. When you were dying.

Cancer is so hard on the person who is going through it, but it's just as hard on the people who love that person, if not harder.

Brynn has been through so much since I was diagnosed when she was just 7 years old. I've been sick for almost half of her life. Think how scary that is! All the uncertainty of thinking the one constant in your life, the person who takes care of you, is dying.

And in that moment, when she really thought she might not see me alive again, she took a picture. Because even though my friends wanted to preserve my waning sense of dignity, Brynn just wanted one last picture of her momma.

Tuesday, March 25, 2014

The In-Between Scan

For those of you who have been following along, you know my last PET/CT scan showed some new activity (a spot) and that I was going to have a follow-up CT in a month to see what's going on.

Well it's been a month!

I went Friday for my CT scan. They're a little different from a PET/CT. When you get the CT alone it's a much quicker process. Instead of getting the injection of radioactive sugar (like during the PET) they give you an injection of something that makes you feel warm all over. Your throat feels especially burn-y and you also feel like you've peed your pants. Luckily you don't *actually* pee yourself, but it sure feels like it for about 30 seconds.

I'm told that the solution they inject into your arm is heavier than blood and shows up a different color grey on the CT scan so they can differentiate your circulatory system from the rest of you. See, on a PET/CT the doctors see the results in color, based on how much of the radioactive sugar is absorbed by each part of my body (with cancer lighting up really brightly). On just a CT everything is in grey scale, so it's more difficult to decipher (at least for Hodgkin's).

At first the radiologist thought the spot looked like it was possibly bigger. That's what the report states (not that it *is* bigger, but that it might be bigger). Well Dr. Essell is not one for mights and maybes. He marched right down to the radiology department, found a radiologist whose competency he trusted, and together they looked at my last 4 scans side by side.

It seems this spot has actually been there for awhile, and it's been the same size each time. Since there is no growth, Dr. Essell says it is likely not cancer. We didn't discuss it at the office, but my guess is the spot didn't show up on previous PETs because it's not cancer and only showed up on this last PET because I was sick and the spot was aggravated. That's my (optimistic) guess.

But does any of this sound familiar to you guys? Do you remember another spot I had that showed up, but then didn't grow for awhile so we thought it was nothing to worry about? Well that spot eventually DID start growing and is what kicked off my second move from Florida to Kentucky and my second stem cell transplant.

So I'm a little skeptical about spots that show up but then don't grow. Call me jaded. I can't help it. I do not like spots. Even static ones that my doctor says not to worry about. Spots=bad.

That's my pessimistic interpretation (and the one I will not be able to extract from my heart and my dreams) for the next three months. Then we'll get another PET/CT and we'll see how that looks.

Don't get me wrong. This is *good* news. If this scan had confirmed a growing spot, or found new spots, we'd really know there was trouble. I'll take good news every time, even when I'd prefer no spots at all.