+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.

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.

A Letter To Me, One Year Ago Today

Dear Nella:

It's me, I mean, it's you from a year in the future.  I know you're starting Chemo today, and I know you're really scared.  I wanted to tell you it will be ok.

First of all, the baby is doing really well.  As I/you type this, she's army crawling around trying to stuff her beautiful fat cheeks with choking hazards.  Chemo is least of her safety concerns.

Second of all, yes, your skin is going to stop hurting.  You're going to wear clothes without weeping inside and you won't be covered in sores and scabs and scars anymore.  You're going to just throw on any old clothes, even jeans, and you won't have to figure out what will hurt the least and still cover up as much gross embarrassing skin as possible.  You won't even notice or think about your skin except to notice that "Hey, I'm wearing clothes like a person and I totally forgot!".  You have scars, but you don't really care, because you just don't.

I know you probably want some advice.  I know you're scared about what you'll see today.  We hate medical stuff and you're afraid that everyone will notice that you're trying to look at the ceiling without looking at all of the needles in everyone's arms everywhere.  You'll get over it.  You will never, however, be able to not look at the ceiling in the Phlebotomy area.  But not to worry, that doesn't mean you're a wimp.

You're scared about how it will feel and if you'll be tough enough to handle it and still make everyone think you're good at having cancer.  Please stop thinking that.  There is no such thing as being good at having cancer and there is no such thing as being bad at having cancer.  You're just a pregnant lady with cancer.  It's wildly inappropriate for you to put that kind of pressure on yourself.

Which brings me to my next point.  If something hurts or is uncomfortable TELL SOMEONE RIGHT AWAY.  Don't second guess yourself and don't tell yourself you're being oversensitive and that other people go through worse things in their lives.  Yes, they do, but you've given birth 4 times without drugs and you have a decent idea about whether or not you are in discomfort.  Please save us from a lot of needless suffering.  Please tell them when you're hurting instead of apologizing and explaining it away.  Chemo isn't supposed to hurt.  Well, the needle part hurts, but after that when they push the saline and start the bags it shouldn't hurt at all.  When they push drugs into your IV with a syringe it should NOT hurt.  You have ornery veins and when your chemo hurts it's because your line isn't in right, it's not because you're a whiny over-sensitive worthless baby.   Those nurses have their jobs because of sick people like you.  You are not inconveniencing them.  Tell them it hurts.

Chemo tastes bad.  Really bad.  Actually the saline they flush your lines with tastes bad and one of your drugs (the one that's usually the last push) tastes like...methane.  I guess that's the most delicate way to put it.  It tastes kind of like toots.  You will really need Jolly Ranchers for the saline and the toot one.  When this is all over the smell of Jolly Ranchers will make you physically wretch which may not seem like a big deal because we always thought those were overrated anyway but kids eat them so you will have to smell it sometimes.

I almost forgot--be serious about germs please.  Please be serious about germs and don't care what anyone thinks.  The baby is ok but you had her early because you were not serious about germs.  Let people laugh at you and judge you and then go ahead and be serious about germs.

Yes you will make it to Owen's first baseball game of the season tonight and no you won't throw up in a garbage can.  You'll just feel gross and weird but it'll pass and it will be bizarre to think of what just happened and to realize nobody there has any clue.

Oh and you know that thing you want God to use your cancer to fix?  It's not happening today or this week but don't give up.  You might just have cancer because you have cancer and that's ok too.  You're going to learn a lot.

That's all for now.  I know you know it will be ok.  You know it will be ok because of statistics and science.  You know it will be ok if you don't land in the good part of the statistics because it will just still be ok because God.  I want you to know the baby is ok.  The kids are ok.  Michael is ok.

I'll try to write to you before the next Chemo.  Be gentle to yourself.  God loves you.

Love,
Yourself

On Ash Wednesday, Would You Pray For Them?

I don't have much to say today, except to ask you prayers for some of God's children.

The entire Western New York community has heavy hearts this week, as we learned that Ben, a little boy I've mentioned here previously, has weeks to live.  Despite surgery and initial treatment his brain tumor has grown so inexplicably that he has been sent home to spend his last days in peace surrounded by his family.  The grace and strength that Ben's mother has shown through this ordeal are nothing short of a call to action for the Body of Christ.  We may want to cry and wallow in the unfairness, but if Mindy can find the strength to rise to this challenge, we must find the strength to pray her through it.  Please pray for this family.  If you feel called to do so, please donate to help them or for information about attending Ben's benefit.

I mentioned another child facing brain cancer here once before.  My friend Jeff's little girl was diagnosed with brain cancer around the same time as Ben.  Please pray for Ava and her Dads as they begin the arduous treatment process.

Finally, a friend of mine from college contacted me recently to let me know that she has been diagnosed with breast cancer.  Her cancer is in stage one and is very treatable.  Regardless of the great prognosis the treatment will be difficult and she has 4 small kids.  Please pray for Sweetie.

You may read this list and feel hopeless and helpless, and you are.  But God is not.  Please join me in praying that His will be done and His children be comforted.  Ben and his family, Ava and her family, and dear Sweetie and her family will benefit from them.

When You Assume...

That's me up there after those last two posts.

Get it?  I made an ass, not really out of you, but definitely out of me.  I ended up dangling from a metaphorical cart because I broke a cardinal rule of writing and I assumed you knew what was in my head without me communicating it as clearly as possible.

When I wrote the What NOT To Say To Someone Facing a Health Crisis I made some fatal mistakes.  I mentioned that each person's response to facing a health crisis will be different and that is so important to remember and I just did not emphasize that enough.  In fact, each individual response will be SO different that I followed up with a post about what you SHOULD do that effectively contradicted the first one.  I heard from dear dear friends who read the NOT post and felt like they had messed up somehow and that could not be far enough from the truth.  So I'm going to try to filter the mud I mixed up over the last 2 day and communicate things a bit more effectively.  

Clarification #1

I wrote those posts with a certain group of people in mind.  I guess I was envisioning that advice going to the friend/acquaintance on the periphery who was moved to act but was not necessarily close enough to the patient or family to be able to easily identify their needs.  What I realize now is that a) I didn't make that clear and 2) I didn't account for the extrovert-y types who don't really have this "acquaintance" category.  

Clarification #2

I originally wrote those posts remembering certain incidents where I encountered someone who, while still meaning well, lacked appropriate boundaries or was just so codependent that they didn't realize that they were making my illness about them.  These are a small minority of the interactions I had during my illness but they were the most draining and traumatic.  I generalized those to inform all of my advice and didn't emphasize that the majority of people who would want a list of do's and don'ts aren't the kind of people who would ever make it about them anyway.  I didn't think that through completely which created a situation where when I listed "I can't imagine" and "How are you?" as things you shouldn't say I alienated a lot of well meaning people because I wasn't clear enough about what I was trying to say.  

So What Were You Trying To Say?

I'd like to clarify my stance on "How are you?" and "I can't imagine".  These are likely ok for most people but understand, if you ask how someone is and they say "Fine", don't push.  Unless you are very very close to that person please respect whatever boundaries they are setting at that time.  Don't say "I can't imagine" and then fish and fish for "it's not that bad", or if you get "it's not as bad as it seems" or some such don't push and push for all the gory details.  You wouldn't put a veteran on the spot about what they've seen and gone through if you are not extremely close to them.  I'm not comparing cancer to war, but when you have cancer or watch a loved one go through it you don't go to the hospital so they can feed you Skittles while they braid your hair.  It is traumatic, it is grueling, and it's hard to discuss every single time you have a conversation.  So express concern, ask after their wellbeing, but don't push a cancer patient or their caregiver or someone else going through a crisis to make you into their confidant or savior.  I hope this helps clarify things a bit.

Ninety eight percent of the people we've encountered on the road to recovery have been nothing but generous and loving and wonderful.  One other thing I'd like you all to remember is that when someone is diagnosed with cancer, or loses a child, or faces some other awful crisis, they do not become a character in a movie.  They stay the same unique, flawed child of God they were before, so the same hang-ups, impulses, and baggage they had before the crisis will inform the way they receive your efforts.  The human spirit combined with the grace of God can meet immense challenges in ways that are incredible, this is true.  What is also true is that extreme hardship brings out all of our personal protective measures, so using me as an example, everything in me was screaming to get in the bunker and hide all the while I had to be out at appointments and accepting people into my home more than I ever had in my adult life.  This colored my interactions with everyone all the time so that there were times that well meaning conversations were just too much at that particular moment.  So if you do reach out to someone and it doesn't go how you thought it would, please have mercy, they are bringing so much stress to every interaction and that is going to cause some awkwardness from time to time.

Finally, I want you to know that I remember what it's like to be on the other side.  To hear about a situation that is (here I go contradicting myself) unimaginable and to short circuit at the enormity of it and your powerlessness to do what you most want--which is to stop it.  I know what it's like to want that person to know how deeply you feel for them and what it's like to realize nothing you say seems like it can do much good.  When you approach someone with love and prayer and your very best intentions, you will bless them.

 You will not take it away.  You cannot take it away.  

You WILL still bless them and lift them up.  

Back to you dear readers...help me sort this out...is that any clearer?

7 Quick Takes: What You SHOULD Do For Someone Facing a Health Crisis

5 posts down, 2 to go!  

I'm just chugging along and joining all the links ups I've been telling myself I should join and then never got around to it.  Today I'm doing a double Fulwiler.  I'm pretty sure that's what it's called in the biz.  I'm doing 7 posts in 7 days AND since it's Friday I'm also doing:

Also hosted by Jen Fulwiler

Yesterday I talked about what you should NOT say to someone facing a health crisis.  Thank you everyone who contributed to the conversation.  I mentioned in that post that everyone faces difficulties differently and that that list was from my perspective.  Well, after talking to my friend Sarah, you'll be surprised to see that 2 of my don'ts are also on my list of dos.

In order for this to make sense you need to know that my friend Sarah is a complete weirdo, otherwise known as an Extrovert.  She took an MBTI personality quiz just so I could be 100% accurate on my blog because that's what good friends do, waste time on the internet for someone else's blog.  Anyway, for reference, Sarah is an ESFJ and I am an INFP which means we are completely opposite except that we both favor Feeling over Thinking.  All that to say, we are so so different from each other that our running joke is to call each other "Weirdo" and ask "How are we friends?", but we are dear dear friends.  Anyhoo, Sarah told me today that she experiences "How are you?" and "I can't imagine" totally differently than what I described, and Sarah has faced some true hardship in her life.  So, to make things really confusing, here are the things you SHOULD say or do for someone facing a health crisis:


1.  Say "I can't imagine."

Confusing right?  I know.  I'm going to quote Sarah now (with her permission):

I know I say that one but I don't feel like I say it in a way that is looking to be comforted.  I say it in a "I have never gone through what you have been through so I can't say that I understand so I am not going to pretend I do."...I feel like it is annoying when someone acts like they understand your situation when they really don't.

I get what Sarah is saying here.  I don't think anyone who says this is purposefully trying to make the patient or caregiver they are talking to comfort them.  I know they are trying the exact opposite, and I stand corrected, because for some it really is a sentiment they appreciate hearing.  Sarah went on to say that when people expressed this sentiment to her it made her feel like she wasn't carrying her difficulties alone.  I guess a good policy is to reflect on what you know about the person who's facing the health crisis.  If you don't know them, my instinct is to just stick with "I'm sorry you're going through this".


2.  Ask "How are you?"

See above.  I really don't know exactly what to think of this.  It is so foreign to my personal instincts, but I do know Sarah and I know that if she were going through something difficult this would truly be an important way to love and support her.  If Sarah is this way, I'm sure there are many others like her who read my advice yesterday and were like "What the heck?".

I think that after reflecting on reasons you should or should not say "I can't imagine." and "How are you?" the conclusion I've come to is this:  if you know this person well, do what you think best fits their personality and what you know about them and that you aren't saying one of these things because it's what you would want or because it's what you want in that moment.  If your goal is to love that person, even if your foot ends up in your mouth, you are still doing the right thing.  So now, on to the rest of the list of things you should do:


3.  Pray

I know that, even if you are a believer, there are times when praying doesn't seem like enough.  There are times that "I'm praying for you." sounds trite and like something that people just say.  Please, please, please, if you do nothing else, pray for their healing, pray for guidance, pray for their peace of mind, pray for comfort.  Please pray.  I cannot overstate the power of your prayers.  I cannot overstate the tangible support and relief your prayers offer that no other gesture or statement can even touch.  If you are not a believer, when you tell someone you are thinking of them, that you are sending love and light or good vibes, or a myriad of other similar sentiments, please do not doubt the efficacy of these offerings.  Not only do these prayers and similar offerings lift up the recipient at that moment with their love, they truly have lasting effects.  There is no real way for me to convey it except to say that up until my cancer diagnosis my belief in the power of prayer was largely on blind faith, but now, having walked through that valley, "I was blind but now I see".  "The power of prayer" is not a catchy phrase, it is the most egregious understatement of all time.  In fact, prayers and well wishes and good intentions are the reason that "you can't imagine", because when you try to imagine it you are not factoring in the effects of the very real prayers and grace you will benefit from when you are in the thick of it.  It is beyond human understanding.  So please, if you do absolutely nothing else, pray pray pray and rest assured you have contributed the single most important thing you have.


4.  Reach Out

If you hear that someone you know is facing a crisis, even if you haven't spoken to them in a very long time, even if you only know each other through friends of friends, even if you've never actually met them in real life--if you feel moved to reach out to them to offer encouragement, just do it.  Don't worry that it will be weird, or awkward, or intruding.  I know that after all I've said about being private and introverted and concerned about burdening people this sounds counter-intuitive, but so many people reached out to me in big and little ways after many years and over many miles and every single time it was so uplifting.  Send a card, a note, a Facebook message, an email, a tweet, whatever.  Don't feel weird.  I felt so loved and supported and I was delighted every time someone reached out to me to say "I'm thinking of you, I'm praying for you, I'm here for you.".

Let's get practical, practical...

I should be banned from Google Images.  Moving on.

5.  Meals

Who doesn't love food?  The Terrorists.  No really, this is a 1/2 brainer.  I was going to say no brainer but there are a few things you should keep in mind to make this as easy and helpful as possible.  First of all, be sure you know of any dietary restrictions.  After you know what the family can and cannot eat, it's great to coordinate with others as much as possible.  When the enormity of our situation became apparent, some dear friends (including the previously mentioned Sarah), got together to plan amongst themselves how they could best serve our family.  The idea they came up with was genius.  Very often when a Mom has a baby, her friends and others around her will put together a calendar using a program like Care Calendar.  This is a great option, but when a family is facing something that will last more than a month or two, it can become really difficult to manage continuous, consistent help no matter how badly you want to.  If you have young kids and all of your friends do, which is our situation, no matter how much you'd like to think you could keep up the pace of providing meals for months on end, it is really difficult.  My super smart friends figured out that if everyone who wanted to contribute meals made a frozen meal or two and dropped them at the homes of a few "Meal Coordinators" who had deep freezers,  many more people could contribute consistently over the long term.  It eliminated the hassle of trying to get a meal ready on a certain day for a certain time when lets face it, it's hard to do that for your own family most of the time.  It made it possible that on a day when things were going well in one of my friends homes and things were clicking along they could double or triple the recipe they were already making and freeze it and voila, they fed our family for a few nights instead of just one. It eliminated the hassle of moms with young families having to pile everyone into the car during the crazy dinner hour.  It also offered more privacy to my family during a time when things were constantly disrupted.  Once a week one of my "Meal Coordinator" friends would email me and say "How many meals do you want this week?" and then would drop off what we needed.  That way, if Michael was home and wanted to cook (because he is amazing like that), he could do that and we could use the meals when it was best for us without worrying about anything going to waste.  What if you want to drop a fresh meal?  What a treat!  That is always welcome too.  

What if you're far away?  Well, one of the most humbling gestures I received was from a dear lady I used to cheer with in college who now lives far from me.  I was not always very kind to this loving soul.  It shames me to say that.  She got in touch with another dear friend who is still near me and arranged to have a whole Panera Bread lunch sent to me so that I wouldn't have to worry about getting lunch around for the kids one afternoon.  I can't begin to express what a fun, generous blessing this was to receive.  So if you're far away, send something!  We also received edible arrangements and grocery store gift cards and grocery bags full of staples and all were such blessings.  All of these things lightened our load and helped us to focus more on the task of getting better and to focus on each other rather than the practical aspects of feeding our family.

6.  Hire Someone To Do Housecleaning

I'm not very adept with PicMonkey yet.  PS, this is not really my house but all Moms know how fast this could happen.

The other amazing thing that Weirdo Sarah (xoxo) arranged for us was weekly housecleaning.  You read that right.  She collected money and arranged for a very adorable, very sweet, very efficient young lady to come to our house for 3 hours every week to clean up.  In those three hours she picked up, vacuumed and washed our downstairs floors (our entire downstairs is tile and hardwood), cleaned the downstairs 1/2 bath and the kids full bathroom upstairs, vacuumed the stairs and upstairs hallway, wiped down my kitchen cabinets and island bar stools.  If it had not been for her our house really would have looked like that picture up there.  Moms out there I know you feel me.  Even if you can't manage to get together funds for a weekly cleaning like this, even if it's just one time, it is such a blessing.  You don't need to hire a professional service, find a college or high school student.  Ask around at your church, your local Newman Center, or a local homeschool group.  This kind of help isn't always easy to accept, but it is vital, especially when a young family is facing a crisis.  

7.  Expect Nothing In Return

The kind of whirlwind that ensues when you or a loved one gets a life changing diagnosis is all consuming.  Sometimes you will send a note or an email or a gift and hear nothing.  I'm still haunted by times I've not responded to kindness in a timely manner.  In my case the reason for this is two fold, first, because when part of the time you are not capable of much of anything but the very bare minimum (at times the bare minimum being opening your eyes) and the rest of the time you're playing catch up and trying to make things slightly normal for the rest of your family a LOT falls through the cracks and you don't want it to be that way.  The other reason is that just like you don't know what to say and it all seems like not enough, there are no words this side of heaven that can adequately express this level of gratitude.  If I could lay prostrate on the ground kissing the feet of every person who has extended their love, generosity, and support to me and my family during this time and I could do it without it being The Most Awkward Thank You Of All Time I would do it and it would not come close to showing my most humble, passionate gratitude.  I want to do big things for every person who has loved us through this in ways big and small and yet there is nothing big enough.  It is paralyzing.  So, if you say something or do something and the recipient doesn't respond how you expected, have mercy.

Also, you may say something that is totally kind, right, loving, and perfectly suited to the persons needs and they might be having a tough day or just be overcome in that moment by what they are facing and they might cry, or be mad, or ignore you, and it will have nothing to do with you.  They are going through a difficult time and sometimes when faced with adversity we are very very strong, and sometimes we just lose our damn minds.  So please, have mercy.    

I hope this list is a bit helpful.  As I wrote this I realized that those of us who have faced a health crisis or other significant hardship and those of you who haven't are all in the same boat.  We each want to express feelings and intentions to the other that words cannot adequately communicate.  When someone faces an illness or other crisis we want to help so badly, we want it to go away, we can't stand the thought of someone facing it and it is scary to think it whatever it is could really happen so close to us.  I get it.  I remember.  In fact, even now, having walked through my own outlandish difficulty, I feel powerless to do what I really want to do, which is take it from them--to make it disappear in an instant.  We all want to know what the perfect thing is to say or do and I started this list with the intention of tying it all up with a bow for you, but I'm reminded now of why we all short circuit when we hear of another's suffering--it is because we are powerless to stop it and anything short of stopping it seems puny and insignificant.  Well, if you get nothing else from this list, please take away this:  you can't take it away, but your efforts no matter how imperfect, are not insignificant.  

Love is never insignificant.

These takes were not quick.  Back to you readers...what would you like to add?