+100

Today is a HUGE milestone for transplant survivors.  In a way, today my transplant survivor status is official.  It's Day +100!!!!!

I can drive.  I can prepare food.  I can change diapers.  I can be in my home without adult supervision of any kind.

My post transplant scans all came back clear which was pretty anti-climactic.  We knew they would be.  I just can't get myself to feel much of anything about it because right now I can't get past the fact that my remission can be taken from me at any time.  I'm trying to focus on the positive and there is SO much of that in my life.

I'm learning that when it is most important for you to be optimistic, it's also the hardest to be optimistic.  So, in honor of reaching the +100 milestone with Bone Marrow that functions pretty darn well and without being re-hospitalized one single time, I present you with a list of positive thoughts:

• There is no reasonable explanation for why I made it 100 days without having a single fever.  I had to go to the hospital 4 times during my first line treatment to have blood cultures done because I had a fever.  I went into labor with Avery because of a fever.  Somehow, this time when my immune system was WAY WAY WAY more compromised to the extent that I as not allowed to handle dirty laundry...not one single extra trip to the hospital.  In a house with 6 small children where the baby plays in the toilet, the garbage, and plays "Ice Bucket Challenge" with the dog's water bowl.  In a house with a potty training 3 year old boy.  That's crazy, and that's pretty awesome.

• My husband is such a hard worker and such a super smart man that he was able to provide not only the medical care that I required but also Nannies 4 days a week so that I would be able to follow all my post transplant restrictions in a house with 6 kids who are home all day.  

• I live in a town and a time where I have access to world class healthcare a short 20 minute drive from my home.

• We are surrounded by friends and family who have supported us from the very beginning of this ordeal.

• I get to go back to Pilates tonight and get back to swimming my laps this week.

• My hair is really coming in and my eyebrows have come in so well that I have to pluck the ones that step out of line.  100 days ago I was completely cueball bald and had about 9 eyebrow hairs total and no eyelashes at all.

• Regardless of the what the future may hold, I have this time with my family, right now.

There's a thing among transplant survivors where you post a picture of yourself on Day +100 so here it is, from my grainy cellphone camera, taken by my son Owen:

Hair: check.  Eyebrows: check  Eyelashes: check  Functioning Bone Marrow: check

Thank you everyone for your prayers, love, and support as I continue to walk this crazy cancer road!  Day +100 is not what I thought it might be, but it's still pretty darn good.

14 Days, 26.2 Miles, and 35 years

So...this is awkward.

I've been hiding from you which is not very nice considering how kind you all are to me.  The short version of why is that:

a.  cognitive function not in the crapper anymore but mostly at capacity with daily life
b.  living with my husband and kids again
c.  the longer I wait to write the weirder it feels to start up again

I was also approached to do an awareness post in September and I had a big mental panic attack because I'm SUPER conflicted about disease related awareness and so I just went into a mental bunker to hide from the whole thing.  Then I felt guilty that I didn't do it.  Then I felt guilty I didn't do awareness posts for ALL THE CANCER!!!  Now I decided to put on my big girl pants and give my adoring public what they want...half baked ramblings and haphazard punctuation.

14 days until Day +100

Today is exactly 14 days until I'm 100 days past transplant.  Starting day +100 I'll be allowed to do all kinds of things like drive, change diapers, handle raw food, and handle dirty laundry again.  I've already signed up for my first volunteer shifts at the kids' schoolish.  I cannot wait.  My recovery has been slow but steady.  My germ fighters (ANC) were fluctuating quite a bit for a while and I was having to get weekly growth factor shots.  I finally stopped the shots 2 weeks ago and had a pretty good count so hopefully that will continue.  My platelets and hemoglobin are good which is really nice, they're usually the last to come up.  Waiting for your blood to accomplish things is weird.  You feel like there is something you should do but other than eat and be active you're pretty powerless (really cruncheroos, sorry).  When it comes to germ fighters you're totally in the dark about whether you're improving or not, I've never been symptomatic (bleeding nose or gums) when my platelets were low, but oh my goodness, I could predict pretty accurately where I was on the scale for hemoglobin just based on how I felt.  My hemoglobin is on the low end of normal right now so I'm feeling great.  

I'm starting the re-staging process this week.  CT Scans on Friday and then next week PET scan, cardio/pulmonary test and DEXA scan to see how my bones weathered this storm.  My guess is my bones are fine because they have me on enough Calcium to cure a horse with osteoporosis.  

26.2 Miles for The Leukemia and Lymphoma Society

Yesterday, my best friend from middle school and dear friend for life, Dr. Joelle Taylor, finished the New York City Marathon in 4 hours, 19 minutes, and 49 seconds.  In the process of preparing for this incredible accomplishment she raised $4,655 for The Leukemia and Lymphoma Society.  She ran in my honor and I am deeply humbled and grateful.  Joelle, I am so proud of you and I am so grateful for your love and friendship!

35 years

On October 25th, I turned 35. 

 Remember in elementary school when you learned to round to the nearest 10?  5 or more in the ones place and you round up?  Well, Michael is 3 years older than me and so I've mercilessly teased him since he was 25 about "rounding up".  It went something like this..."You're so OLD, you're not 25 you're really 30!  You have a wife and a house and your age ends in 5 so round up!"  Super funny Nella.  That used to seem like a funny joke when we were dumb kids.  So anyway, we've been teasing each other in this manner for a long time.  

This year Michael gave me the old speech about rounding up (haha!  You're really 40!) and I realized that while it's not a guarantee, statistically there's a decent chance that rounding up is the closest I'll ever get to 40.  My chances for surviving the transplant were good, but the truth is that my chances of surviving this cancer for 5 years are not the kind of odds that make you feel awesome about the future. 

It's weird how our mind boxes things up without us really knowing.  After I found out that I had relapsed and went through the initial whirlwind, my mind became very focused on the task at hand and not on my prognosis.  As each step of treatment intensified I became more and more consumed with the tangible steps in front of me.  In the last few weeks as I've felt more and more healthy and my recovery from treatment has become less and less of a full time job, my mind has opened a door that looks like this:

Fancy bloggers with discipline would have photoshopped this to read:  "Don't Open, Cancer Inside"

One day a few weeks ago all of these really scary statistics that my mind had cordoned off behind yellow tape and razor wire were released back into my thought stream.  Now that I've survived the transplant process I'm back to thinking about cancer.  That may seem weird because how could you be at a cancer hospital and not think about cancer, but to get through something like the transplant process I really needed to focus only on that and not on the actual cancer stuff.  

I can't hide from the truth anymore, which is that the chance that I'll still be around and Lymphoma free in 5 years is 50%.  50% is actually being a little generous based on how quickly I relapsed last time and some other factors.  That's a lot of reality to deal with.  Truth is, sometimes I'm ok with that and sometimes I'm just not.  

Please do not mistake this for not having a positive attitude.  I've realized  through this that many people think that a positive attitude is some kind of magic spell that makes everything just work out.  I'm here to tell you that that is not why a positive attitude helps you when you're sick.  A positive attitude doesn't have much control over whether or not cancer grows in your body.  What a positive attitude does is makes you swallow your pills when you don't feel like it and you're tempted to think "What difference does it make?".  It makes you get out of bed and get dressed and go to the hospital when you feel like you just can't face that place again.  A positive attitude makes you keep moving when it's just so hard.  A positive attitude doesn't involve avoiding reality.

Michael and I have adopted a policy of "expect the best and plan for the worst".  We've started researching the most commonly used treatments for 3rd time relapsers and evaluating clinical trials.  I already have a list of questions for when I return to my Lymphoma Oncologist at day +100.  I may still have some treatment to go, even if my scans are clear, which they should be.  

I can't be positive that I'll make it to 40 because I know about math, but I can be positive I'll fight like crazy to get there.  

Getting old is the best thing that could ever happen to me.

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 cells...to 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.

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.

Aphere-sizing

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.

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 breathe...now 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.

Fun with Weapons of Mass Destruction or Life on ICE

So I made it through Cycle 1 of the chemo that is preparing me for the Autologous Bone Marrow Transplant.  Wow, it's tough.  It's really really tough.  It hits hard and it's gross.  I'm actually back in the hospital for round 2 and at least I know what to expect this time.  What I expect is this:

ICE Chemotherapy: What to expect in a cycle.

Day 1: 

 Easy.  I actually came into the hospital in the evening this time and started my chemo at around 2am.         This was only the second time my port has been accessed and it makes me really nervous.  I took Ativan before I came to the hospital this time to chill me out a bit and to help me handle the taste of the saline when they flush my lines and it seemed to really help a lot.  My actual chemo not including pre-meds (steroid, anti-nausea) was only a 2 hour bag so I was able to sleep pretty well, the nurses aids are great about doing my blood pressure, pulse ox, and temperature even if I'm asleep if they can get to my arm which is nice.


Day 2: 

Easy.  I was able to eat well, walk 33 laps around my wing (which equals a mile), have a wonderful visit with a very dear friend and 2 visits from my husband.  I also took a shower and dressed in real clothes so I could visit with my friend OUTSIDE in the hospital courtyard which was so nice.  Tonight I get all 3 of the chemo drugs in my protocol.  One of them runs for 24 hours and it's difficult.  Really difficult.  It smells so bad, just when it hangs in the bag, before you're even hooked up.  I'm not sure if I can taste it when I'm getting it but I'm pretty sure I can, even after I leave the hospital.  Guess why it's so stinky...did you guess?  It's derived from mustard gas.  I know.  A bunch of my "pharmaceuticals are the devil" readers just passed out.  Anyway, I have to be hooked up to that from 5am to 5am.  That's my fun with WMD.  I also have the 2 hour bag I had last night and another 1 hour bag of something else.  Which means day 3 isn't exactly a barn burner in the productivity department.

Day 3: 

I'll be hooked up to the mustard gas all day and all night today.  It will be gross and my appetite will suffer.  I have to force myself to eat the best I can because last cycle I lost a lot of weight.  I lost about 7 pounds, which I really don't have room to lose.  I rallied in the following weeks, but I didn't manage to get it all back before I came back here to start the new cycle.  It' really important that I maintain my weight to the best of my ability in order to give myself every advantage going into the transplant because I'll definitely lose weight when I start that super chemo and the ensuing process.  At my hospital there is Mass at noon on Wednesdays so I will be going.  By the time I get back my day is pretty much over.  I get in bed and I'm pretty useless.

Day 4:  

Today I pack up my stuff, get cleaned up, and wait to be discharged.  When I get home I go to bed and I sleep almost solid until day 6 or even into Day 7.  I get up to (hopefully) eat, drink water, and use the bathroom.

Day 5: 

 I forgot to say that on Day 5 I go to the hospital to get a Neulasta shot.  It's really hard to go to the hospital because I'm so tired.  I get home and day over and like I mentioned above under Day tomorrow and possibly the next day over.

Day 7: 

Hopefully I wake up this morning and can get out of bed to go to Doughnut Party at my parents as long as nobody is sick.  I get to sit at the table with my family and possibly eat a bit of toast.  Then I go home and straight back to bed.  I still mostly sleep, but I'm getting into a weird status where I'm to weak to sit up or move but my mind is very awake.  I end up watching a lot of TV on my computer.

Day 8:  

Back to the hospital today for bloodwork.  I spend the whole time praying that I don't need a transfusion.  Unfortunately this cycle it won't be a question of if, but when.  Blech.  Then I hopefully go home, go back to bed.  I try to read to the kids in short spurts while I have enough energy.

Day 9-12: 

I alternate between hospital free days and hospital days for blood work.  I get a bit more energy each         day but all that means at this point is that my eyes are open more than they're closed and the kids                 can come in my room  more if they're healthy, they've changed their clothes, and washed their hands.  My appetite is beginning to improve and I don't require Zofran to control my nausea anymore.

Day 13:  

Watch out!  I spend most of the day sitting up in the DOWNSTAIRS OF THE HOUSE as long as everyone is healthy.  I even eat some of my meals in the kitchen with my family.

Day 14: 

Back to my parents' house for Doughnut Party, more sitting up like a person and even walking around a bit.  I beginning to get a tad full of myself.  My appetite is improving but I still have to get into bed by 6:30 pm or so.

Day 15:  

I am now officially big for my britches (figuratively) and have commenced doing more than I should because I'm feeling guilty and I'm losing my mind.  I still have to lay down quite a bit.  I've also been told that this time around I need to do even less.  Boy oh boy.  I continue to visit the hospital every other day for blood work.

This continues until I have to come back to the hospital.  This time around it was for my 2nd cycle of chemo, I came back on Day 22, which resets to Day 1.  After I finish this cycle, God willing I will begin the transplant process.

Other Stuff

I lost my hair.  I mean really, really lost it.  It started to go this past Wednesday and by Saturday I had so many totally bald bald spots that Michael had to buzz it for me.  It took me so much by surprise because last time it took so long to finally begin to fall out and then when it did, while quite a bit came out and I had to buzz it, it never came out in huge totally bald patches.  I mean I would run my hand through my hair and it was like a bunch of gorgeous Italian babies first haircuts were caught between my fingers.  My pillow was absolutely coated. It was gross.  So Michael buzzed me and now I have a few very small patches of stubble, each about the size of quarter, all floating in a see of pale smooth scalp that has never seen the sun.


My goals for tomorrow (Cycle Day 3):

1.  Shower and wear my bareMinerals.
2.  Wear real clothes and not pajamas until after Mass (around 1pm)
3.  Pray in the morning and evening.
4.  Possibly walk 33 laps if I can do it before Mass (this may be ill advised, we'll see)
5.  Visit with some friends in the afternoon.
6.  Eat appropriately.

So that's it, an update and a "what to expect" for any cancer patients getting ICE chemo who may visit hear.
I have a few quick requests for you:

1.  My brother in law Nate is participating in the Ride for Roswell, which is a wonderful fundraiser for Roswell Park Cancer Institute, the hospital where I'm being treated.  He is dedicating his ride to me and my family.  I'm humbled.  His fundraising page can be found here.  If you are able and feel moved to do so, please send a few bucks his way.  It is a very worthy cause.

2.  Local friends have asked about donating blood and platelets for use in my treatment.  Last cycle I made it without transfusions of any kind but this time I'll definitely need at least one.  If you are local and would like to donate blood or platelets please go here, to the website of the Roswell Park Donor Center.  I am type A+ so if you have a compatible blood type with me you can do a regular donation.  If your blood type is not compatible you can still donate platelets.  Both are hugely helpful.  I was borderline for both types of transfusions this past cycle and just made it without them.

3. Finally, if you have a prayer intention could you leave it in the comments?  If it is something private you can just write Private Intention.  I'd like to pray for you and offer some of this up for you.  If you'd prefer to email your intention to me at nellakat at gmail dot com, that's fine too.

Thank you for your continued prayers and support.  I thought I'd be able to write more but it's hard to write when you can't sit up.  I hope to update you again soon.

The Thing About Remission

My cancer is back.

I'm just going to come right out and say it.  The cancer is back.  It is back and I'm going to have a major butt kicker of a treatment plan that is starting June 2nd.  I'm disappointed.  So so disappointed.  I'm also hopeful.  That is the short version.  If you're into medical details you can keep reading.  If not, you've got the gist.  I have cancer.  Again.  But OH! OH!! I'm not pregnant this time so there's that.  Since I'm not pregnant I get all kinds of red carpet luxuries like general anesthesia for surgery.

Remission is a history report, not a promise.

The thing many people don't understand about remission is that it doesn't mean you are cured.  You have to have 5 years of remission to be considered cured.   I understood that totally, and even felt a little funny when I would post about remission on the blog or on Facebook.  I knew that remission wasn't a promise, but I also knew many people don't really get that.  I felt like I was leading my friends and family down the primrose path, but I also knew any time cancer free was worth celebrating.  I don't regret any of those posts because those milestones came with real joy and real accomplishments and those were real months where I could be present with my family and serve them and set goals for myself and work towards achieving them.  So, while in some ways posting about remission felt like whipping up false hope, it wasn't false hope.  That was real health and real time spent living this beautiful life I've been blessed with.

Unfortunately, that doesn't change that remission isn't a promise of days ahead.  It's really just a history report of healthy days lived.  When they scan me during remission checks the truth is that they can't guarantee the next three months, they can really only say: "The last 3 months seemed fine, and hopefully the next 3 should be ok too."

So how did this happen?  Cancer is a tough enemy.  It can hide just one cell in your body, waiting to start growing again.  It can be totally eliminated and your DNA can start switching switches and BAM, it's back.  There was nothing in my past diagnosis, staging, or treatment that would have indicated that I would be in the 10-15% of Hodgkin's patients that relapse.  Even pregnant, I was as low risk as low risk could be.  That's why understanding statistics is important.  Numbers are numbers even when they're people.  Even when they're people you love.  Even when they're you.  Someone has to be in that 10-15%.  That someone, this time, is me.

How did you know the cancer was back?

Well, in a weird way cancer helped me catch itself this time.  I learned through my last treatment the importance of being confident in my experiences and intuitions and being assertive about voicing them when I felt something was off.  My natural impulse is to doubt myself and assume that I'm being oversensitive and overdramatic and not tough enough.  I learned during my last treatment to tune into what my body is telling me and to think it through and be ready to communicate to the best of my ability.  I learned to believe in myself and to advocate for myself. 

One day I felt a flare of itching on my ankles and my heart dropped into my stomach.  Please, God, no.  But the thing about itching as a symptom is that plenty of people itch for a gajillion reasons that are not cancer.  It's just something humans do.  But, it was that itch.  It's just different.  It's not on top of my skin, it's down way underneath and has a raw burning quality even though the skin on top looks totally fine.  Instead of telling myself I was crazy I made a mental note, said a prayer, and decided that if it happened again I would take it seriously.  It was such a short little flare, about 2 minutes, and then it was fine.  I also knew I had a CT scan coming up and I figured if it happened again I would tell my doctor at my follow up.  I had 1 or 2 small flares and decided that yes, I would tell the doctor.

At my appointment following the CT scan I was told they saw a small area that was a bit enlarged but within the normal range.  I had a really bad respiratory infection during the scan so that could easily have been the explanation.  That's what lymph nodes do when you get sick.  They get mad and help fight the infection.  I almost didn't say anything about the itching.  The doctor was turned away and noting the respiratory infection in my chart and I managed to stammer out "I....um...I've had a few weird...I know it's probably just paranoia but...you see I just had a few very small flares of itchingandIknowI'mjustbeingparanoid.  Hehe.".   Well, her head just snapped right around and she looked right at me so seriously.  So I started in again: "I mean I know people itch all the time but it just makes me a bit nervous because it's the same quality as before and I just thought I should tell you and I know I'll get scanned again in a few months and I'm sure it was nothing but I thought you should know.".  Then she started writing in my chart.  Crap.  "You were right to tell me.  We'll keep an eye on it and it's likely fine, but if it happens again you need to call.".

Doctors love to say: "It's a straightforward procedure." 

About a month later, I had to call.  I had a few other little flares of itching.  When I say flares that actually makes it sound worse that it was.  They were just whispers of that old itching, but it was still had the same character and quality as the really bad itching before my last diagnosis.  I called the doctor and Michael and I joked that now we would get empirical proof of how crazy I am.  I was scheduled for a PET scan the next week and we were really nervous but tried to pretend like it wasn't happening and joked a lot about how crazy I am.  We went to the follow up after the PET scan and we were nervous but hopeful.  The nurse practitioner came in and sat down and said:  "The PET scan lit up so we're going to need to do a biopsy.  It's a very straightforward procedure."   CUE TO ME LOLOLOLing and interrupting:  "No offense but according to you guys it's almost always a straightforward procedure but YOU'RE NOT THE ONE GETTING CUT OPEN TO FIND OUT IF YOU HAVE CANCER!!!!".  Then she was like: "......yeah...."  I laughed a bit more and then finally let her explain the procedure to me and then my oncologist came in.  And she gave me a long hug.  A long one.  I knew why, because I already knew at that point what the biopsy would show.  I just knew.

She told us that in Hodgkin's patients that have PET scans light up this soon after remission the chance that the cancer has returned is 50%.  She told us it was also possible that it could just be some other infection or my Thymus coming back online after Chemo and being a bit overactive.  It was nice to have those options to cling to, but I already knew.  I also knew I'd have to pretend for everyone that I didn't already know I had cancer again.  I asked what we would do if it was cancer.  The three words that I heard next hit me so hard, like a hit to the face, stomach, and groin all at once.

Bone Marrow Transplant.

Tears.  Gasping for air that seemed inexplicably to evaporate from the room.  Bone Marrow Transplant.  I don't know how I got up the courage to ask the next question:  "If I have to do that, what are my chances?".  Pause.  (Doctor collects herself as if to recall lines from a script): "In Hodgkin's patients the prognosis is 50%."  

Jesus deliver me.  I lost it.

I could hear my dear sweet doctor telling me we had to positive and that we could do this and that we needed to wait for the biopsy.  

But oh Jesus, please PLEASE take this from me. 

I calmed down enough for her to give me an overview of what the treatment plan would entail but I was too upset and too "just thrown into a washing machine on the spin cycle" to understand anything other than "inpatient treatment" ie. a lot of time away from home, and "blood transfusions" ie.  gross.  And then suddenly we were in a numb fast forward in slow motion where we met with a surgeon, scheduled a surgery where bonus(!) I would be under general anesthesia because I'm not pregnant this time.  And then another numb fast forward in slow motion to the day of the surgery where I got put under and then woke up and vaguely remembering Michael telling me they thought is was Hodgkin's as I fell asleep again.  When I finally woke up from the surgery I asked Michael if I dreamt that and he had to tell me that I didn't dream it.  The pathologist who was present at my surgery thought that it was Hodgkin's but there were more tests they had to run.  I already knew.

As I type this I'm recovering from surgery and I have now received confirmation that my cancer is definitely back, and June 2nd I will begin treatment.  If you're still reading you are a really patient nice person because I haven't even told you what they're going to do to me yet.  You can drop out at anytime.  Seriously.

What's the plan?

I'm having an Autologous Bone Marrow Transplant.  That means they will actually use my own stem cells for my transplant so there are no concerns about matching a donor or about Graft Versus Host Disease.  I'm still semi fuzzy on all the details because we haven't met with my transplant team yet.  What I know for sure is that this Friday, May 30th, I'm going in to have a Medi-Port put in.  I didn't have one last time because YUCK but this time, for the amount of pokes and the ornery nature of my veins it's a no brainer but it's still yuck.  The medi-port is a thing they surgically implant under the skin in my chest to make it easier to give me stuff intravenously as well as to draw blood.  The following Monday, June 2nd, I'll be admitted into the hospital for 3 days, during which time I will receive continuous chemotherapy that is much more powerful than the chemo I got last time.  This time I'm receiving chemo called ICE.  I will be really sick most likely WAY sicker than last time, I will lose my hair again, I will need to be monitored constantly even after I come home after the initial three days in the hospital.  I will likely need transfusions of blood and platelets.  I will be at a much greater risk of infection than I was the first time when I "just" got ABVD chemo.  3 weeks later, if my blood has rebounded adequately and I don't have an infection, I'll go back in for 3 days of chemo.  

Hopefully, after doing the ICE chemo twice, there will be room in the Bone Marrow Transplant Unit for me.  If there isn't I'll have to do another cycle of chemo.  If there is a bed for me, I'll be given shots over a course of a few days that will force stem cells out of my bone marrow and into my bloodstream.  The stem cells will be harvested and frozen in preparation for the transplant.  Then I'll get a course of even more powerful chemo and I may or may not get radiation as well.  When my entire immune system is good and dead, my stem cells will be given back to me intravenously.  That part is the actual transplant.  Gross right?

Then we wait.  I will be supported with blood products and antibiotics until, God willing, my bone marrow begins to repopulate and produce healthy blood on its own.  During this part of the process I will be hospitalized in a specialized unit for 3-6 weeks.  Three.  To.  Six.  Away from my husband and babies.  

That's an overview, we're still a bit fuzzy on some of the details and chronology because frankly, we are still in shock.   We are disappointed and we don't want to do this.  But we're going to do it.

To summarize:

Bad Things

• My cancer is back
• I'm having a Bone Marrow Transplant
• I'm going to hospitalized a whole lot
• I'm going to be really sick

Good Things

• We caught it really early
• There is a very small amount of cancer
• My prognosis is better than that initially quoted 50% because:
•  I'm young (they transplant patients up to age 75)
•  I'm healthy (so much that each time I see a new nurse or doctor their jaw drops, I'm working on swimming a mile people!)
•  I'll be going into transplant in remission which isn't always the case
• We have the most incredible support system

Please pray for my husband and children, this is going to be so hard on them.  

This is going to really be yucky and really difficult, but I'm going to let Emma Stone tell you why it will be ok:

All I do is WIN.  Drop the mic.