Tuesday, June 24, 2014

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.

Friday, June 13, 2014

In Honor Of My Grandma

Doris Rexford 
On June 1st, this world lost a Great Lady.  Capital G.  Capital L.  My maternal grandmother, Doris Rexford, was just simply a Great Lady.  I cannot possibly do her any justice here, but I want to honor her in some way, so I'm going to tell you a bit about her.  She was a woman whose life, if I were to list all the events, the chronology, the hardships and the accomplishments, sounds like a movie.  I can't do that here, but I need to share a little with you, because she was a Great Lady.

She was born in Exeter, Devonshire, England in 1928.  Her town was targeted by 18 Nazi air raids during WWII and she told us many times about the metal cage they had in their home so that when there was an air raid they could climb inside and be protected in case their home was hit and collapsed on them.  My grandma was known to say "England is my homeland, but America is my country".  She came to the United States at age 17(!) as a war bride, knowing no one but her new husband.  She went from a modern, suburban life in England as essentially a schoolgirl in her parents' home to life as a wife and very soon a young mother in a very rural home with no indoor plumbing.  When she would wash her first daughter's diapers in the winter she would have to hang them on a line indoors and they would freeze.  Solid.  She kept her home immaculate.  IMMACULATE as in it looks like it was hermetically sealed in 1955 when it was built and nobody ever crossed the threshold again.  But people did cross the threshold.  She raised 5 children in that home and welcomed 15 grandchildren and 20(and counting) great grandchildren.  She just never stopped.  She never stopped cooking and cleaning and gardening and learning.  She was a force.

She followed the news very closely and always knew the ins and out of everything that was going on here in the US as well as at home in England.  She kept a close eye on the Weather Channel and was quick with a phone call whenever something serious was going to hit an area of the country where one of her grandchildren had settled.  She watched the financial news and was extremely well informed about what it all meant for her savings, which she recorded meticulously.

One of my favorite stories about my Grandma was a time that I drove her to the bank.  I can't remember now exactly when it was but I think it was about 9 years ago.  Anyway, I drove her to the bank because her CD's were coming due and she had to do some stuff with interest rates and who knows what.  I'll tell you who knew what--she knew what.  Oh my goodness.  She came in there, quite elderly at that point, unable to see particularly well, with all of her calculations written on the back of an envelope.  She had calculated what the new rate on her CD should be based on the financial news and "what Mr. Greenspan said".

Have you ever seen those posters at the bank where they try to sell you CD's and they write interest rates on it with a sharpie to make you think they're on top of things?  It turns out they're not that on top of things, but Grandma sure was.  We were ushered into the cubicle of a poor young man who had no clue who he was dealing with.  My grandmother began to discuss the business she had to complete and he began telling her that the rate on the poster was the rate that they would be using for this upcoming term on her CD's, and that Grandma could expect a return of x amount.  Well, that did not match what was on the envelope or what Mr. Greenspan had to say...so...there was work to be done.

I was getting a bit nervous at this point because honestly I didn't understand a word of what they were discussing and my Grandma's calculations on the envelope were out to the 3rd decimal place and I hate math and I'm the kind of rube who would believe that the numbers on a poster at the bank are accurate.  I had no clue who was right.  I had no clue how this would play out, and I had never really observed my Grandma like this, out in the world.  Grandma walked him through her numbers, which he conceded were correct, but could not be used until somesuch day.  So, Grandma very politely and patiently walked him through it again because she literally knew his business better than he did.  At this point the poor guy didn't know whether he was coming or going.  Grandma sensed this and reached across the desk and put her hand on his arm and said:  "Am I troubling you Derrick?" and I had to stifle a fit of giggles because it all seemed so hilarious.  At some point a manager showed up and after some more back and forth guess what? Grandma and her envelope won.  After a short and very polite speech about what people's unbridled borrowing is doing to the savers in this country Grandma was on her way with her CD's all squared away.

I will never forget that day for so many reasons.  I knew my Grandma was really smart, everyone in her family was and you knew just from talking to her that she was sharp, but to see that kind of knowledge collected and calculated all on her own on the back of an envelope and used to school a bank--it was breathtaking.  Even more breathtaking was the incredible, unshakable grace and politeness with which the entire matter was handled.  Many people in her situation would have given up, and many more would have lost their cool and been loud or obnoxious to try to get their point across.  She was just simply unflappable and polite.  I still chuckle to myself everytime I think of the phrase "Am I troubling you Derrick?".  Poor guy had no idea what he was in for.

I want to tell you so much about her, about how she walked everywhere, even to get her groceries into her seventies and golfed for years.  She'd get up at 5am to play and then walk home and get right to work making sure everything in her home was just so.  When my Mom had her 4th and 5th babies and was working full time she would come over and clean the house and make dinner during the day and when we'd walk in the door we knew immediately that she'd been there because everything was perfect.  If she was still there when we got home we would all fight over who went in the door first because she was starting to lose her hearing and we would always inadvertently scare her which we hated to do.  We started coming in the door and SLAMMING it shut and then SLAMMING our backpacks onto the floor while kicking off our shoes and TALKING VERY LOUDLY because she was not only hard of hearing but was often vacuuming something to kingdom come that you didn't even know could or should be vacuumed.  We still ended up scaring her most of the time, but she was always happy to see us.

That's the thing I really want you to know about her.  She had 5 children, 15 grandchildren, and 20 great grandchildren but she had a way of saying your name and talking to you and about you that made you feel like you were the only one.  She was just so proud of every little thing each of us did and always made sure we knew what all the cousins were up to.  Somehow she always made you feel so incredibly important and special.  A lot of it was all the normal stuff of growing up, but as long as you were trying, that was worth reporting.  She just loved us, and we all felt it.  People always worry about there being enough love in a big family, but my Grandma is proof that there is always enough love.

When my own family started growing beyond what society considers decent, my grandma once grabbed my hand in between both of hers told me "Don't let anyone make you feel badly about these children.  I know it's hard now.  It's so hard, but someday they won't need you anymore and you will be surrounded by such love, Nella.  You will be surrounded by so much love."

She was surrounded by so much love.  My Mom and her siblings cared for my Grandma so beautifully and so generously that she was able to live independently in her own home until the very end.  Doris Rexford was a force to the very last moment, weeding her garden and getting it just so.

Thank you Grandma R, for surrounding US with so much love.  If I am a quarter the woman you were, I'll have lived a life I can be proud of.