+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.

26 Days

Tomorrow morning, on my 26th day as an inpatient on the Bone Marrow Transplant Unit at Roswell Park Cancer Institute, I will be discharged!!!  It's 99% certain which is as close to 100% you'll ever get from a doctor.

Thank you, thank you for your prayers and support.  This process is not over for me, but this is a huge and welcome obstacle cleared.

Please pray that I will never be admitted here again.  Please pray that I can leave this behind and raise my babies with the love of my life and tap dance into old age with him.

Please pray for my husband and kids.  I'm still not going home...I'll be at my Mom and Dad's for 2 weeks.  These 2 weeks are critical in ensuring that I don't end up readmitted.  This is the best decision, but it is a very difficult one.  We'll be able to see each other as much as we want, but they just want Mommy home.  Mommy just wants Mommy home too.

Pray for my Dad who will be in charge of my care and supervision for the next 2 weeks.  If anyone can snap this patient into shape it's him.  He's going to be in charge of my meds, making sure I'm exercising, monitoring my symptoms, and taking me to my appointments.  He's also going to be in charge of getting me to gain back the 10 pounds I've lost.

Please offer a prayer of thanksgiving for my husband who was nothing short of heroic during this time, for my Mom and Dad, for my In-Laws, for many dear friends and loved ones who supported us with prayers and meals and rides to swim lessons.

Please offer a prayer of thanksgiving for the Doctors, Nurses, Health Care Aides, Nurse Practitioners, and everyone who cares for the transplant patients on 5 East at Roswell Park Cancer Institute with great compassion and skill.

Day +13: Sometimes You Just Cry

*The management makes no promises for coherence, grammar, or punctuation.


I'm kind of a crier.  I cry a lot.  Happy, sad, mad, relieved, undecided....cry, cry, cry, cry, cry.  I cry enough over random stuff that now if my 10 year old son finds me crying about something and I start to tell him not to worry he kind of rolls his eyes and says "I know, Mom, sometime ladies just cry."

In the car, when there is ANY country music playing except Luke Bryan, if I see a really great bird, almost EVERY time I see my husband,  if I think one year--sometimes one month ahead in my children's lives.....etc.

I try really hard at the hospital to not cry at all.  I try very hard to be super special patient that causes zero trouble.  I say thank you for every pill, every IV pump reset and I say sorry for every single gross thing such as puking.  I apologize between pukes as though they'd assume it's my hobby and I just decided to fit in some recreational puking right now and I regret I've inconvenienced them with my poor timing. I need them to know I did not want to cause puke for them to handle.  I wish I had a stack of $5 bills on my tray to hand out every time I have to push the call button.  I HATE pushing the call button. I basically only push the call button when my IV is beeping because I know if I let it go they'll say "why'd you do that".  Anyway, I try to be sunshiney patient in their day and yesterday I was an epic fail.

Yesterday was day +12, or 12 days since my transplant.  I cried all day yesterday.  All. day. long.  Did I get some bad news?  Nope. Great news.  Yesterday was the day my Absolute Neutrophil Count was almost where it needed to be for us to tentatively maybe discuss, barring any unforeseen bumps in the road, the possibility of me being discharged at some point.  Possibly.  (It's hard for doctors to commit to anything). Today the news was even better.  My Absolute Neutrophil count needed to be greater than 1.5 and it's 1.76.  They're giving me one more growth factor shot to keep things jumping up and hopefully  after today I'll get a break from them.  They make me very achy.  I might even get unhooked from my IV's tomorrow.  It's awesome.  I might even go home sometime next week.

But I spent all day yesterday just crying and crying.  I just want to go home.  I just want to walk around with out dragging an IV pole everywhere I go.  I want to see my kids.  They've visited once and I was so happy to see them and they were happy to see me, but they each only got to visit with me for 3-5 minutes because there can only be 2 visitors in the room at a time and the people who weren't with Mommy had to be entertained in the waiting room.  I can't help but wonder how that feels to a kid, to not see their Mommy for nearly 2 weeks, then see her for literally less than 5 minutes, and then leave.  I can't think about it much because I know what it did to me.  It hurt like hell to watch them leave.  It hurt like hell to see their eyes darting around the room and taking inventory of "Everything they're doing to Mommy".  It hurt like hell to not just scoop them up and hug them properly because we have to be careful of my lines.  So anyway, yesterday I was a total sad sack loser.  I barely walked any laps, I just sat around crying.  If it weren't for my Dad coming to visit I wouldn't have done any.

Even now, when things continue to look up in very concrete ways and I'll be home sooner rather than later, I'm on the edge of tears.  I try really hard with the Medical Types to be super cheerful and courteous at all times.  Their job is really hard and the last thing they need to deal with is Mrs. Weepy McWeeperson.  Plus I'm paranoid that if they see my runny nose from crying they'll assume it is microbe related and ruin everything by making me stay longer.  No way.

I'm pretty mad at myself for crying.  Things could be so much worse.  I carry a lot of shame about the privileged life I lead, but today, I'm just going to say this is hard.  It really stinks.  I don't feel like doing this anymore.

Anyhoo, despite the whining and crying, 13 days out from the transplant, there is progress being made on multiple fronts and I am grateful for it, truly.  I still wish it never happened and sometimes when you carry something this big, you're just gonna cry.

Day +13 ended up much better than I expected when I started writing this.  There are lots of good things happening today and there is a light at the end of the tunnel.

In case you'd like to know just how easy it is to make me cry with even the weirdest things...

Go to this link and understand that EVERY TIME I watch it I start tearing up by :44 and full on cry the rest of the time

I realize cool kids embed videos.  I just didn't have it in me.  But seriously you guys?  That video makes me ugly cry EVERY time.  That video is 3 years old.  Perdiodically for 3 years I have revisited this video to see if I am free from it's clutches and can be considered  marginally sane again and I CANNOT.  I cry everytime.

So there ya have it, sometimes I cry about cancer.  Sometimes I cry about Lester Holt holding up a cardboard TV cut out and some intern getting to bust out her backyard backhandspring on asphalt for the Today Show.  That's a lotta range.

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.