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.


  1. Prayers for strength, courage, and patience for you and your family. You all deserve so much more!

    1. Still praying fervently for your and Michael and the kids. Live you all.

  2. Wow. That is quite a cycle, or two, or three. I pray you continue to have the support you need. I will pray for you, and you can pray for me. I thought withdrawing from neurontin and the creepy, crawly feelings and restlessness was hard to deal with. I'll be offering it up for you. I know what you mean about your brain being awake but your body being too tired, or your brain being too scattered to do anything. I watch Call the Midwife, or Downton Abbey for the millionth time in those moments -- they are calming. I can't watch anything that makes me anxious at those times.

    You will hopefully find that the transfusions will make you feel better faster. I used to work for the American Red Cross and I know you don't want the transfusion, but they do help. I am A+ -- wish I could make a long distance donation!

  3. Oh, sweet Nella. I think you're just amazing. I wish I could come over for a Mentalist marathon! It is so wrong that it's not on right now. You definitely need some Patrick Jane love. ;)

  4. I have been praying for you since the first diagnosis, and I continue to do so - especially during my adoration time. If you can please pray for my daughter, who is away from the Church and living a very disordered and immoral life right now, I would appreciate it.

  5. Your story humbles me beyond belief. I will pray for you and the family. Could you add me and my family to your intentions? Financial and spiritual attacks. I particularly am not handling it well. My husband tells me I need more trust. Thanks from the bottom of my heart. May God bless you.

  6. Oh, Nella, this sounds awful! Our family continues to pray for you every night!

    Can you pray for my friend Julie? She is expecting her third child any day now, but has been suffering from crippling anxiety and panic attacks and won't accept medical help. Thanks, Nella!

  7. WOW Nella, you lady are a rock star! If you could pray for my husband,Jim and I as we work some big things in our marriage...you're in my daily prayers too!!

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  10. Dear cancer,

    You are not welcome in any aspect of this beautiful family. Be prepared for some serious a$$ kicking from my super strong, super hero friend Nella. She IS stronger than you. You are going down. She WILL crush you.


  11. Oh Nella! One day at a time right? Or one hour or moment, as the case may be. My daily prayers include fervent hope for all good things for you and your family. I think of you often during my day, and it's very humbling when I find myself grousing about things in my life. Thank you for pointing me to humility. If you feel like it, please pray for conversion for my loved ones. Thanks for your offering. Now please, take care of yourself, rest, rest rest! Obviously you have many here who are thinking of you and praying. Lean on this cushion of care and let it do its work.

  12. Sending many prayers your way!


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