I got a call from my doc today.
The very, very good PET scan I had on Monday showed decreased hyper metabolic areas everywhere when compared to previous examinations.
I still have a tumor at the aortic bifurcation, but it is in an area safe enough to discuss cutting back my chemo therapy.
Originally when I decided to treat my cancer as chronic I'd envisioned periods of rest, with NO CHEMO.
This isn't the same vision my doc had.
The options we're now discussing are between a half dose of velbam every two weeks or every month.
When I was on the phone, I was ambivalent.
Now, I'm pretty confident I'm up for the once a month dose.
I'm exhausted.
I've slept all morning, every morning, since monday.
I don't want to have to do that every other weeks.
Luckily I have been able to enjoy my evening.
Thank God for small favors.

Back to school

This was the only picture I could get of X on his very first day of second grade.
I had to chase him around the house, switching out camera devices to get one.
He didn't care at all about donning new "back-to-school" clothes.
Good thing, since we didn't buy him any. He's still wearing his sports shorts and t-shirts. He wouldn't even wear his good shoes, instead slipping on his 6 month old pair of indoor soccer shoes.
I was patting myself on the back, thinking I had done an okay job of getting my seven year old to avoid all those messages of consumerism. That was until he saw he was dragging in the same back pack as last year. Six month old ratty shoes, no problem. Dirty shorts and an old soccer uniform, not a big deal.
 Last years bag, call the press.
I told him the same bags selling now will be 75% off in a few weeks, and he could wait for that.
School couldn't have come at a better time.
I was absolutely exhausted.
I love that X wanted to be with me every minute.
It's just hard too pen your eyes from a chemo induced semi-coma to a rambunctious child saying, "Mom, do you want to play soccer? Do you want to go outside? Let's go pass? Can we play wall ball?"
Then, if the answer to that is no, its, "Can we play bakugan/connect four/life/sorry/play station/wii?" or "Can I invite a friend over?" all in rapid succession.
Of course, that's only if I haven't been interrupted to feed him any one of the ten meals my growing man eats.
I'm glad school is back, as much as I know I'll get bored and miss him. I need my rest. I may finally get back to doing those "mom" things.
Even yesterday, I did manage to drag myself off the couch to cook him a batch of brownies to celebrate his first day of school.
I questioned whether it was worth it.
I questioned whether he'd even care.
Silly me, what child does not want brownies after school?
He bounded into the house, eyed the batch, and asked me to cut him a giant one while he contemplated whether to eat it with a spoon or fork.
I gave him the entire pan and a glass of milk and told him to have at it, which seemed like the perfect way to end a good day.

Hoo-Ra

I had a sad day today. 

I'm depressed. 

I cried reading Good Housekeeping.

 That's bad. 

I couldn't hold it together. My friend called, asked how I was, and I burst out crying. 

My O2 sat was 90 percent sitting yesterday. 

That's getting too close for comfort. 89 percent on room air puts me on o2 all the time. 

My shortness of breath is worsening, and none of the tests I thought my doc was ordering got ordered...... Since june. 

I met with my NP Anna yesterday, luckily, bc doc was on my shitlist. 

Of course, like any good nurse, she took good care of me.

 She even got the thyroid panel I asked for in june after my TSH came back high and low and behold my throid isn't working. Probably part of the reason I have no energy and can't shake me steroid weight, but what do I know? 

I'm scared for those patients less knowledgable with less balls than me. I'm sure they don't live as long. 

I was beginning to think doc had pushed me over to his "terminal" pile and took a summer vacation. 

I do hope we all understand that this "chronic cancer" is just a euphemism for terminal without a miracle (keep those prayers coming). 

But then he called all jolly trying to track me down everywhere to tell me the PET scan I had looked "really really good."

 I'm glad he didn't get ahold of me bc I wouldve kicked that good mood into next tuesday. 

I'm still shopping for a f...ing wheelchair and thinking of ways I can still get around with an oxygen tank. But it did lift my mood, just a little, even though the message didn't come with a "yay, now you can stop." 

It was a "hey, maybe we could lower the dose."

 Hoo-ra.

I regret not running screaming and yelling to dana farber as soon as I started experiencing shortness of breath last year. 

From go things went badly. 

Before the second round of my chemo I complained of shortness of breath. My oxygen sat was dipping to 93. I asked for a chest xray to rule out pneumonia before getting chemo. 

I got my chemo that day but two days later found myself in the ER with fever, chills and dyspnea. 

Turns out I did have pneumonia, or may have, there is some disagreement. 

At no point since then have my lungs returned to normal. 

Managable, yes. 

A non-life threatening illness, hopefully. 

Last year I didn't gasp for breath and have to stop and sit while going through the zoo.

 I walked to the beach and played in the water no problem.

 Now I lose my breath throwing a football with x (even though I'm aware other mom's can't catch or throw a football. Luckily, that is not a handicap I struggle with.). 

It has been almost a year since my lungs failed me and in hindsight, I wish I hadn't cared about that doctors feelings and whether or not I would bruise his ego and make him feel inept by running to a different hospital. 

He's not the one struggling to coach sports and looking at models of wheelchairs. 

I'm disappointed in myself for making such a stupid mistake for such a silly reason. 

Also in this past year I gave up the idea of traveling abroad for treatment. 

This was a family decision.

 I worried about the cost. J felt like it was giving up. 

Instead of hyperthermic radiation or customized cancer vaccination I accepted....... Long term steroids.

 Yuck. I've destroyed myself, and I'm not even talking about my unrecognizable exterior. 

I would no longer be accepted as a patient at the klinik I'm alpenpak.. This scares me. My options are almost nill and staying on chemo forever (which is what has been suggested) is not ok with me. 

Confession

I have some energy now!
I'm still tired, don't get me wrong. I could curl up in a ball and sleep any second.
That's just the way life goes after pheresis.
The day I do treatment and the day after are sleep days whether or not I get a boost of two pints of blood to improve my hemoglobin and hematocrit.
I'm also short of breath, which seems backwards to me.
My dyspnea gets worse close to treatment, but then it gets better, thank goodness.
Confession time:
I've been losing my love of writing.
It's been a shore to sit at the computer recently.
I may take a break.
I don't know. I'm feeling a little confused about exactly what I'm supposed to be doing.
I don't think I'm putting in the effort I should.
Maybe things will change when X gets back to school next week.

Who-RA. Today is my day, Holla Hill is 28! You would think I had stopped celebrating my birthdays like a 13 year old girl, but hell no, I don't think so.
Not since I made it to the first birthday I really, truly thought I may not have made it too (That was 25 my friends, three LONG years ago).
Twenty-five was memorable because on that birthday I got my very first PET results telling me that my cancer had come back AFTER my transplant.
Yes, earth-shattering, life changing news on my 25th birthday.
I told J right away, but didn't tell anyone else until after dinner.
Hey, it's my sister's bday too. I can't be wrecking days.
Nobody has wanted to go back to Koto's with me since.
Hmmmm, I have so much more to say but can't. I'm off to the movies with X and friends to see Kitty Galore of course.
We're saving the big celebration for the weekend. Beach here I come!

I've made it mostly through the pain of chemotherapy. 
I'm still exhausted in the afternoons.
I still haven't mustered the tolerance to clean anything.
I'm in the "hanging out" phase of recovering.
About this time, I'm just around, hanging around, having fun, not doing much, not contributing anything.
As soon as I get beyond the "kicked on my ass phase," there's a "exhausted/groggy phase" and then there's the "hanging out" stage before we get back to where I call normal. 
Where I call normal is very different from everybody elses, but its working out for me.
In the hanging out phase X and Lex created there very own playroom by cleaning out a place in the basement. I got to supervise and offer up all our old furniture collecting dust

In the medical department, I cut my decadron dose down to five before during chemo so this time I cut it to 2.5. 

I ended up taking it 3 days instead of two though because on day 3 the mouth/jaw pain hit. 

I also cut my pred down to 2.5 and.... My gvh is coming back in the eyes and mouth. 

UGH.

I knew it would happen sometime. I'e allready started with the maintenance therapy. 

For my eyes, hot packs to the eyes twice daily for 10min and drops six times daily or risk possible blindness.

I think I have an eye infection. I've been sloughing white cells. I need to see Dr. Dana, the Boston Eye Guru.

He, supposedly, has the cure for GVH eye problems.

I believe he has it, but I don't qualify for the study.

I can't remember how much it cost.

Either $3600-$4000 total or $390 a month- FOREVER.

I know, I know, those two estimates are kind of far apart.

I remember hearing $390 a month.

Then I went blank.

That's more than my car with insurance, possibly gas on a good month.

How awful would it be to go blind because I can't afford the cure.

Sad, sad.

Luckily, we will swing that.

And in more good news, I'm getting off the steroids.

I'm feeling better. I've been able to be more active, less cranky, and all in time for my special day. . . 

I turn 28 years old tomorrow!

Another Dose Down

I'm finally recovering from mondays full dose of chemo. 

I thought it would be over in four days but apparently the awful mouth sores wait three days to present themselves.

 By that time, my protective steroids are gone.

 Luckily, I have an arsenal for mouth care. 

I have a sonicare toothbrush with proventil sensitive toothpaste. I have natural dentist mouth wash which is less painfil than the alcohal based stuff. 

Adding alcohal to my charred cheeks would be terrible, just downright mean. Then I have maalox, canker care, and blm for pain. I also tried the new pot pill since the marinol would just kick in whenever it felt like with no rhyme or reason but it failed to give me the giggles. 

I"m pissed!

 And finally, I'm confidant enough to state, legalize that weed. Just regulate it. It does wonders for my pain, nausea and appetite without the scary, permanent side effects, like twitches.

 Yes, twitches. 

Marijuana gets you high and giggly. Phenergan and compazine give permanent dyskinesia. 

I'm just saying.... It's clear to me what the scarier one is.

And just for fun, I've added cartoons.