Thursday, July 31, 2014

Day -8, Signing Consents, Mental Refiling

Day -8

Welp.  I'm here.  All hooked up to drug numero uno.  Etoposide for 30 hours.  I'm getting three different chemos over 6 days.  Yuck.  Today is day -8 (minus 8), which means I'll get my actual transplant in 8 days.  The day I get my cells back is Day 0 and every day after that is +1, +2, etc., until I get to day +100, which will be a huge milestone for me.  I've realized when explaining my treatment to people in real life that it's kind of confusing so I'm going to explain this phase more clearly.  First and foremost, it's important to know:

Bone Marrow Transplant Vs. Peripheral Blood Stem Cell Transplant

In a Bone Marrow Transplant they actually put you under and drill out Bone Marrow from your hips or from a donor.  I'm having a Peripheral Blood Stem Cell Transplant where they gave me growth factor shots and harvested stem cells from my blood stream using and Apheresis Machine.   Both of these treatments are called Bone Marrow Transplants interchangeably.  The kind I'm getting is much less risky since they're my own cells and bonus! no drilling.  During my last go round with Lymphoma I read about transplants but I filed it under "Doesn't Apply To Me" in my mind because, seriously, who ever thinks something like that will apply to them?  The whole thought process took about 30 seconds after I read about it: Step 1- decide it doesn't apply to me, Step 2- totally sanitize the reality of what I've just read because it doesn't apply to me, Step 3- file under "doesn't apply to me" which is just next to the circular file in my brain.  

Signing Consents Kills The Romance

So, now I've had to dust off that file and put it back under "Applies To Me" which is cross referenced with "Reality Bites (not the movie)".  Obviously, at no time since they told me this was happening was I happy about it.  But once I got going it seemed a bit romantic in a way...using my own cure me!  How human and sciency and just nice.  Don't get me wrong, it is nice.  It's just not as romantic as it sounds.  My transplant is really a rescue.  My cells aren't really curing my cancer.  I'm already in remission.  Again.  I need this transplant because the best chance at keeping my cancer from coming back is to blast my Bone Marrow to kingdom come using extremely high doses of extremely powerful chemotherapy.  I get 6 days of it.  The Etoposide I told you about, Cyclophospamide, whose evil twin I've already had, and Carmustine.  This Chemo is going to completely destroy my bone marrow.  All of it.  It is going to completely destroy the source of my red blood cells, white blood cells, and platelets.  It is going to destroy me.  We need to wipe it all out in the hopes that any little bit of my cancer that is hiding will also be wiped out.  Without intervention following these 6 days of chemo, I would die.  I would die of some kind of infection, or I would bleed to death.  I would die.  The stem cells that were collected are being used to rescue me from my treatment.  For a short time, I will be mostly dead.

This is a TAD dramatic.  Only a TAD.
 The reality of this sunk in slowly as I explained the procedures to others, although in my mind it continued to have that sanitized soft focus sheen of "can't possibly apply to me" even though I knew I was describing my own treatment.  What really killed any romance in the idea of being "saved by my cells" was signing the consent forms for my treatment.  In bold on several pages it said "1 in 20" patients will not survive this treatment.  I've signed a Health Care Proxy and Advanced Directives.  I will survive this treatment of course.   1 in 20 doesn't really mean me because that includes 4 year olds and 80 year olds and people who are not in remission before transplant so obviously that won't be me.  That doesn't soften the impact of signing all that paperwork and having to write out in black and white "I am a Roman Catholic, if my death is imminent, please call a priest so that I can receive the sacraments."  It doesn't take the bite out of knowing I'm letting them putting something in me that would kill me without dramatic intervention.  After they put my cells back, I'll get blood products and antibiotics until such time as it appears my bone marrow is chugging along, producing what I need on its own again.  For now I'm hunkering down and doing everything I can to be a good patient.  

Thank you for your prayers, and if you can, please continue them.  Please pray most especially for Michael and the kids.  God's will for them is God's will for me.

Thursday, July 24, 2014

Overachieving In Stem Cell Collection (Robert and Peter Do Not Look At This Post)

*There are photos of a medical nature in this post.  If you are squeamish this might not be for you...hence the disclaimer for my brothers.

Last Friday I started getting shots called Filgrastim to make my bone marrow produce tons and tons of stem cells.  I had them Friday, Saturday, Sunday, Monday, Tuesday, and Wednesday morning.  On Monday I started another shot, called Mozobil, which actually forces all the stem cells that my bone marrow produced out into my bloodstream so that they can be collected.  The thing you should know about Mozobil is that they INJECT IT INTO YOUR TUMMY!!!!  But that turned out to be not a big deal.  I might ask to get all my shots that way from now on.  I know.  I'm shocked by this turn of events.  Before this if you'd told me I was getting an injection in my stomach I would have told you that if you tried it you'd be getting an injection in your eye.  I'm really not kidding though, shots in the stomach don't hurt as much as shots in the arm or your rear end.  Promise.

In related news on Tuesday Michael bought me some new bling.
He really spoils me.
I had a double lumen catheter placed for the stem cell collection and I will tell you what--you get the red carpet treatment when you're a Bone Marrow Transplant patient.  When they placed my port I had to wait in a waiting room and then wait in another pre-op area where they had everyone waiting in beds in stalls and when it was your turn they wheeled you in.  I did also need some sedation for that one because they mess you up a lot more to get the port in since it's totally under your skin.  Well, for this one they just walked me right into the operating room or procedure room or whatever they call it and I hopped on the bed myself.  I got all arranged and thought they were still doing all my numbing shots and the guy was like "Ok, 2 quick stitches and you're done."  Wow.  That was easy.  It felt tight and weird where it was and I couldn't wait to get it out, but it wasn't too big of a deal.  Anyway, they used that to hook me up to an Apheresis machine that collects my stem cells.  I'm hooked up for 4 hours, it's pretty easy except that you can't move it around like an IV pole so if you have to use the restroom you have to just hold it.  Actually, if you have to use the restroom there is a commode, so...I have to hold it.  I just do.  Luckily I didn't have to live under the threat of the commode for long.  I'm a stem cell overachiever.  The goal for me was to collect 2-5 million cells per pound of my body weight and the first day they got 6 million and change.  Nailed it.

I had to be collected one more day to be absolutely sure we have enough.  Yesterday I finished that and had my line removed which is really nice.  I have about 7 days untethered before they put another different line in for the BIG chemo and transplant.  Why do they have to change lines?  Well, the one for collection has to be really wide so that we don't damage any cells as they come out.  This line has 2 lumens (or feathers, as I prefer to call them) just one for the blood to go out and one for it to come back in and it is not the coziest thing I've ever had sticking out of a hole in my chest.  When I'm admitted I'll have a new catheter put in that has 4 or 5 feathers but it will be thinner and more flexible.  That's thinking too far ahead right now.  I took a pulmonary function test and as far as I know I did fine.  I'm not too worried, last time I crushed it.

For the next 6 days, aside from some meetings at the hospital where nobody pokes me, I'll be resting and spending time with my family.  Please pray for Michael and the kids, this is so hard on them.

Monday, July 21, 2014

Tales of Woe, Tales of Triumph And The Limits of bareMinerals

As I write this, I'm technically cancer free, which is weird because I didn't even do the hard part of my treatment yet.  What does that even mean, Nella?  I've finished two rounds of ICE chemo and I will not need a third.  I had a CT scan and a PET scan and they came back negative.  All good news.  Great news.  I've begun the shots that will get my stem cell production into overdrive and then force them out of my bone marrow and into my bloodstream.  I'll get a special catheter/line placed in my chest this Tuesday and they will begin to collect the stem cells.  This is such a whirlwind.  I'll be admitted the 31st of this month for the GIANT chemo and transplant.

I'm gonna do the rest of this post in reverse chronological order or maybe just weird disjointed stream of consciousness order.  Cut me some slack...I've got Chemo Brain over here.  I'm sure there are more literary ways I could do a post in reverse chronological order and I'm pretty sure I would be capable of conjuring them up and executing them but that's too tall an order right now.  So here we go, you know the first part, currently in remission and starting Phase 2 of treatment...

Tales of Woe:

I just came home after spending 2 1/2 weeks at my parents' house.  TWO AND A HALF WEEKS.  I came home from my last chemo on a thursday and our 7 year old Madeleine woke up throwing up that following Sunday.  Next thing you know, 2 1/2 weeks had passed as some kind of bug worked its way through the entire family, including poor Michael.  Michael has been, as usual, a hero.  He's been sick himself, working during the day, taking care of sick kids at night and in between bouts of sickness he's taken ALL SIX KIDS to THE BEACH and STRAWBERRY PICKING ALL BY HIMSELF.  Now I'm home and it's glorious.  I get tired really easily so I can't get much done, but I'm in my own house and the kids are just happy I'm around.

This past Friday I had a Bone Marrow Biopsy which is my fave (lies).  They did it right in the Lymphoma Clinic at the hospital, so I got my good news about my scans from the nurse practitioner and the oncologist and then they got me set up for the biopsy.  Last time I had one I was pregnant and I couldn't have any kind of medicine to help me relax.  I just had local anesthetic.  This time I had Ativan on board and they gave me a Fentanyl Lollipop.  I'm not kidding.  That is a thing.  Schedule II Controlled Substances in lollipop form is an actual legitimate thing.  I thought this was going to be great because Bone Marrow Biopsies really hurt and I thought this was going to help it hurt less.  I'm not sure if it worked, because it still hurt, which--whatever that's fine.  I kept eating the stupid lollipop because I didn't feel like it was working.  They don't really give you any guidance, they're just like "Hey, here's a Schedule II Controlled Substance in a lollipop, have at it."  So, anyway I didn't think it was working.  Until the biopsy was over and I tried to get up.  It was working.  I felt pretty loopy, but I gathered myself and I had Michael to lean on.  They sent us down the hall towards the reception desk and as I was chatting with the receptionist everything got sparkly and weird and I said "I think I have to sit down".  Then ALL the nurses in the whole clinic came out of nowhere to get me into a chair and give me emergency apple juice.

Even though I'm supposed to be going in reverse chronological order you can't have a proper laugh at my expense if I don't tell you that exactly 2 weeks before this I passed out in the exact same spot, so when we came into the clinic this time I was joking around and talking a big game about how there'd "be no shenanigans."  Thud.  <---That's the sound of me falling off my high horse.  AGAIN.  I perked up from the apple juice and they let me go and then I was going to have lunch with Michael!!!  I didn't really feel right but I thought I'd shake it off in the car, because this was the first time I'd seen Michael in a week and a half and I wasn't cutting it one minute short.  We went to Wegmans and I was going to get Chinese Food but I thought better of it when I got there.  I should have told Michael to take me home right then, but I powered through it because I missed Michael so much and I wasn't messing up our Bone Marrow Biopsy Date Goshdarnit!!!!   I worked really hard at keeping my eyes open, eating my soup, and being conversational while we were at Wegmans and then poor Michael drove me home to my parents' house.  Poor, long suffering, patient Michael.  We got about 2/3 of the way there and suddenly I realized something was NOT RIGHT.  VERY NOT RIGHT.  Thank goodness we're not very good at keeping our vehicles tidy because I quickly located a bag and THREW UP IN THE CAR.  Into the bag in the car but still.  Ugh.  It was really bad.

Michael pulled over and helped me and cleaned the whole thing up and put me in the back of the car where I'm pretty sure I promptly went to sleep.  I hope I did.  Otherwise I was super fun half conscious Nella who doesn't know how to just ZIP IT because there's nothing she can do to fix anything.  Half conscious Nella would have been slurringly apologizing to Michael over and over and OVER and Michael would have been within his rights to wish half conscious Nella was straight up UNconscious.  Michael is a gentleman and won't admit which one I was.  We finally got back to my parents' house and Michael put me to bed, where I stayed for 5 hours.  That night I ate some dinner.  Threw it up.  I slept hard the whole night and woke up to a revelation.  Fentanyl and I are not friends.  I might have had a hard time figuring this out except that I had the exact same pukey sleepy reaction to it when it was in my IV pain button after I had the biopsy on my lymph nodes a couple months back.  They said "hey, no more Fentanyl for you we think it's making you sick." and I was like "no problem I hate it."  I didn't remember the name of it because I thought it only came in pain buttons.  I didn't know they give it out in lollipops because WHY WOULD I EVER THINK THAT!?!?!?.  So Fentanyl is the devil and I hate it.

What other gross things have happened that I can tell you?  OH!  I'm part midwesterner now!  I have one liter of red blood cells from Davenport, Iowa coursing through my veins, I also have one liter of locally sourced blood because I'm trendy like that.  I also have one bag of platelets that are not my own as well.  Oh my gosh you guys it is SO GROSS.  Everyone acts like it's so casual: "Dum dee dum putting someone else's blood in you no biggie." but let me tell you it is NOT CASUAL.  You can see the whole thing--you can see the bag of blood just hanging there on the IV pole being bloody, you can see the blood going through the line and INTO YOUR BODY--and I'm here to tell you it's disgusting.  Miraculous, and smart, and life saving, and DISGUSTING.

So remember up there where I told you that Bone Marrow Biopsy day was the 2nd time I sent the nurses running for the emergency apple juice?  Well, here's the story of the first time.  You see, it turns out that IF you go and get chemo for three days straight and can't swallow anything because air is gross, water is gross, opening your eyes is gross, food is obviously gross, rolling over in bed is gross and almost impossible, etc., getting up at 6:30am the day after you are discharged to go back to the hospital so you can get blood drawn is not the best idea.  I mean, you have to go back to the hospital for your lab check.  They have to check your blood, but 7am is not the best time for it.  You can't go get blood drawn if you haven't eaten anything in 24 hours.  You definitely can't walk around the hospital unaided after having blood drawn and then wait in a waiting room when you JUST finished 3 days of chemo and haven't eaten for 24 hours, but this jackass typing right now thought she could.  It was on the schedule so I thought I should.

I woke up that day, sort of.  I ignored that I could only walk short distances without feeling lightheaded and that I had to sit(slump) on the toilet to do most of the getting ready.  I managed to get dressed and put on my bareMinerals.  I've written before about how much I love bareMinerals.  LOVE.  I put them on like armor (very sheer natural armor) before I head out in public (which is the hospital 95% of the time these days) so that everyone can exclaim over how "not sick" I look.  Particularly at the hospital I feel like it's a subliminal message to everyone there about what abysmal fail-y failures they will be if they don't get me better.  Overall, it works great.  Unfortunately even bareMinerals have their limits.  It turns out that if you turn gray (or grey), begin to sweat profusely, and then lose consciousness--bareMinerals can't hide that.  Don't write angry letters to Leslie Blodgett.  Essentially bareMinerals can't camouflage arrogance and stupidity.  I'm sure they're working on it.

Luckily I turned gray (or grey), began to sweat profusely, and lost consciousness in my clinic where all the nurses know me.  I ended up having to get fluids through my port and ended up breaking a streak I was pretty proud of.  This was the first time I threw up as a cancer patient.  As you learned in the tasteful missive you've just slogged through, it wasn't the last.  I have a tendency to puke when they flush my line while using my port.  I found out if I sniff an alcohol pad that sometimes I won't puke, so if you're a fellow cancer patient who forced yourself to read through all of this for useful information...sniffing alcohol pads when they flush your port might help you not puke.  More importantly, if you're a cancer patient you just read through all of this looking for useful information, the alcohol pad tip is useful, but this one is more important:

Listen to what your body is telling you and stop being an arrogant stupidhead who thinks they can somehow will themselves into being impervious to the effects of their treatment.  You'll end up saving yourself some humiliation and discomfort.

Tales of Triumph:

You know who I haven't told you about lately?
Remember me?

It's hard to believe that Avery Hope will be ONE YEAR OLD next week.  It's hard to believe that baby was on board when I started my first treatment but it's true.  She is doing great!  She's a chubby little trouble maker as you can see.  I'm amazed that just one year ago she couldn't eat, maintain her temperature, or BREATHE on her own.  Look:
Chubby Trouble Maker
A year ago she couldn't eat or she can rifle through the changing table:
Breathing, obviously eating well, and STANDING UP
So, anyhoo, we keep plugging away, taking each day as it comes.  We appreciate your prayers so much.  Sometimes, truth be told, I feel pretty low, but I continue to be amazed at the peace and joy that can underlie even the yuckiest of circumstances.  This situation stinks, but we are so incredibly blessed and surrounded by so much love.

How can I feel low for long when one of my oldest and dearest friends, Joelle, who is a doctor, wife, and mother of two small children is TRAINING FOR A MARATHON--THE MARTHON--the New York City Marathon actually, in my honor, to raise money for the  The Leukemia & Lymphoma Society’s (LLS) Team in Training.  Please consider supporting her.  If she reaches her goal by August 1st, she and her husband will be donating $500 to Roswell Park Cancer Institute, which is where I'm being treated.  Isn't she amazing?   She could lose a toenail.  Do you know that sometimes happens to marathon runners?  *JOELLE*  Please please do not lose a toenail.  I can't have that on my conscience.