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.

Love Birds

Xander has been sitting vigil by my side since I got home from chemo Monday.The week has flown by for me in a haze of sleeping, waking and that middle state where I'm awake and trying to find the ability to move.

I assume X has left my side during my long naps, but I wouldn't know, because he is always there when I open my eyes.
On Monday I managed to separate us by paying him off.
Yes, X can still be "persuaded", but it's getting more expensive. He will not be getting a video game every time I have chemo, but he can now stay home with me.
I never imagined I'd allow my 7 year old to roam free and rule the roost while I napped, but I also never imagined I'd be twenty-seven with lymphoma.
Of course, I've chosen to adapt.
X is still taking Dad's words that he's in charge very seriously, and I have a feeling Dad hasn't had the talk with him that I'm okay without X attached to my hip.
For 7, or any age, X is a great caretaker. HE hugs and snuggles and plays games. He's just as attentive as any of my other best caretakers. HE also tells great stories.
 My favorite this morning explains the mystery of why he came home from a field trip from the zoo asking to buy a bird.
Apparently, a very wise zoo keeper advised him that there were love birds that always stay together. They never fight, and their love is contagious! If you own a pair of lovebirds, everybody will be happy and in love just from having them around.
I didn't realize their was a mystical reason behind the purchase of a bird.
We got him a bird book instead, and told him birds were too dirty, and I was too sick to have birds in the house.
Way to stomp on little X's peace keeping technique. Today he asked to look up lovebirds in our bird book.
Not knowing his intentions, I told him that was easy.
Love birds are doves. They're all white, and I would find them for him.
Just like my little man would, X adamantly stated that, "No, those were not lovebirds."
Ad like so many times before, I knew he didn't quite have the articulation to elaborate, but that he would stick to what he knew just the same.
So I acquiesced and turned to the place that had cleared up so many mysteries before: Google.
Low and behold, there are colorful lovebirds that look exactly like the ones he described.
Mom's wrong again. Outsmarted by her seven year old.
One my toes, as usually, with my clever little man I told him that since I couldn't physically have the lovebirds in the house, we could make a collage in it would work out just the same.
He signed, rolled his eyes, just like a child that still wants to believe my crazy ideas but is starting to know they're not exactly true, and said, "Okay, yeah, that'll probably work."
I also reminded him of the bird families that live in our deck every year. Those families have lived in our house as long as we have, but X tells me those don't count.
Just because they're a family and love each other does not make them contagious love birds.
So now we have our little love bird collage hanging on the fridge, and I'm thinking I might make those a theme of our house from now on.

I was hoping to get an update in before the chemo kicked in, but don't know if I'll be able to. I'm in the infsion room, which is more like a dept, with beds, chairs, isolation rooms and tele monitors, sitting in the comfy green pleather chemo recliner. I've had an eventful couple weeks. X and his cousin went to soccer camp last week so I was on mommy duty carting them back and forth. I'm impressed with how much x improved. He is really a soccer superstar, and I'm not just saying that because I'm his mom. X is still anxious and I'm looking into ways to help him cope with the reality that I have cancer. He worries more than I knew. Last night he talked about praying to God every morning and trying to make medicine but not being able to find the right ingredients. I told him not to worry, lots of other people were looking for the right mix too. It will come. He's with meme this week while I recover. Thank goodness for family that helps. She's been a Godsend this past year being available to babysit. Again, lucky lucky me. If it wasn't for this nasty cancer thing I know you'd all be jealous of how spoiled I am. ;)

way late update

Mom made it out of surgery like the superstar patient she is. Dr. Houde, C-town's finest orthopedic surgeon was able to arthroscopically remove both angry bursas. Her right was more severely and diffusely inflamed but the left side had one major "hot spot" causing her severe pain. Though her hot spots are now gone luckily she hasn't lost her hot hips. She gets to keep those. We now know where I get my loopy reactions to narcotics (she"s been zooming around from her oxycodone) and stubborn "I'll just do it myself" attitude. Thanks to Valley Regional Hospital for taking such good care of her. VRH, my old stomping ground, has undergone some beautiful changes. I enjoyed my brief career as an RN there in the ER and ICU covertly studying the differences between inner city and rural hospitals. Sorry it took so long for a status update. Her healing isn't going as quickly as she'd like and it's lookin like she'll need the full two weeks to rest and recover. It has been nice to have the script flipped and be able to help take care of her instead of vice versa.

Always Something. . .

I'm with the big guy

Yesterday I looked in the mirror and noticed the area above my left clavicle (that's geek speak for collarbone) was swelling.
Of course, I kind of freaked out.
In times past, this has shown a re-occurence.
I brought out my feeler fingers and poked around. I didn't find anything. No lumps or bumps.
Big sigh of relief.
I called the hospital anyway, just in case.
The same exact problem happened last year around the same time and turned out to be nothing.
We're going with lymphedema on this one.
The best predictor of present/future behavior is past behavior.

Look closely, it really is me

I remember the swelling from last year, but I didn't remember the outcome.
When I tried to get an appointment then, I was given to some nasty NP that hollered at me and made me cry. Then I started treatment not too long after that.  The diagnosis got lost in the mix.
I'll be scheduled for a PET scan sometime in the next two weeks to check the chemo's progress.
My life certainly isn't boring.

And As promised, some pictures from my 15 minutes of fame at the Swampbats game.

My dreams have been extremely vivid recently, to the point I almost can't decipher between what's dream and reality. 

Maybe its that alternate plane coming into play. 

My mom was nasty to me in one. 

I pimped j out to the whorehouse in another and when the girls liked him I cried and became jealous. 

But the chaos of my dreams has nothing on reality. 

My treatment schedule will soon be chemo and pheresis every two weeks.

 Hoo-ra, but x is starting with his anxiety and depression again. 

He found me passed out on the floor in the kitchen. He heard my call for help. 

Now, he follows me everywhere, refusing to allow me to be by myself ever. He'll have a tearful anxiety attack if I try to send him away. 

Going to places like school is fine, but to get him to go camping this weekend with J's fam I had to tell him who would be watching me everyday.  

He finally cried today and said he didn't want to lose me.

 I promised I would do everything possible never to let that happen and we'll keep praying to God everyday that I'll live to 100. 

 It's the first time he has said clearly that he's afraid of me dying. He knows I'n sicker than last year. 

We don't go for walks. 

I can barely play sports. 

I told him I was going to start exercising with the wii, and he has set it up and forced me to play everyday since. 

X is my greatest motivator, my greatest inspiration. 

He's smart and talented and would grow to be a fine young man without me, but I don't want him to grow up motherless. I want him to come home to brownies and have floor parties when he's sick.

 I wish when he was sick, he didn't have to worry about me taking care him, but he does. He's said it before in the midst of a raging ear infection that was keeping him up through the night in pain this spring, he apologiZed for being sick and keeping me up.

 I told him now was his turn to be sick and not to worry, - was fine. He gave me a side glance and said, "but you know you are really sick, right?" 

That's when I knew he had really grown and matured faster than I ever wanted.

I think I'll sign him up for an upcoming study at DHMC on childhood anxiety.

This comes with the realization that I accepted long term steroids and palliative care diose narcotics.

 I'm one hot medicated mess. I'm such a mess I doubt I'd be accepted asd a patient in germany.

 I'm considering consulting a nyc doc that specializes in complementary care 

I've read many of dr ralph mosss reports. He was recommended by friends in the know. 

He also costs 700 for a consult but I think he may be my only possibility for a vaccine or other foreign approved proven treatments that are impossible to get in the US.