Thursday, July 11, 2013

IVAC Day 3 Update

I have been so moved by the comments left after my last two blogs. I am so touched and so in awe as to how we can all feel so connected by relating to each other through common human experience. When it comes down to it, I think we all just want to feel comfortable, loved and happy and I can't thank you enough for helping me to feel that in an incredible way even during these most difficult of times.

Thank you for letting me into your lives by following along with my journey. I so much enjoy hearing how it relates to your own experiences - cancer or otherwise and cannot tell you how much joy it brings to think that my words could help spark a little inspiration or perspective shift. What an amazing thing language and technology are to be able to connect us around the globe! Forever humbled.

I wanted to just give a quick update to say that I am three days into the inpatient chemotherapy IVAC at Hartford Hospital. I wouldn't say it's "fun," but there haven't been any big complications or reactions. I certainly know that I'm on chemo: bloated, swollen, achey joints, foggy headed, flushed, extremely fatigued, etc. I receive the Cytarabine twice a day, but only for a few days then I receive the Ifosfimide and Etoposide each evening in addition to a drug called Mesna to protect my bladder that I receive throughout the night.

Because Cytarabine can cause neurological issues, I have to do the steps of a drunk driving test before each dose and sign my name and prove I can walk normally. It can also come out in my tear,s so I need to put steroid eye drops in twice a day.

I may be having some of that expected urinary tract inflammation as I was in quite some pain this morning; we're monitoring that closely. I'm also a lot more tired today.

Fevers have calmed down, so we're hoping this is a sign that the drugs may already be working. I have also not had any pain breaking through my Fentanyl patches. These are big changes to when I was admitted on Wednesday absolutely drenched having broken a 103 degree fever on my way in and in severe, severe pain that they had to immediately get me on meds for. These may be two very good signs. But I'm also on Decadron steroids along with the chemo, which could be helping these symptoms as well so don't want to make any assumptions.

I am very comfortable here. I say it every time. The nursing and PCA staff are phenomenal. Plus, they have all treated me many times now and there's a lot of comfort in that. They gave me the "best room on the floor". It's private and large with a nice flat screen TV and a view out to a meditation garden.

The hospital recently changed their food options as well. Items are much healthier and less processed and you are able to order off a select menu vs. the two tired choices they would offer for each meal. I've been really impressed.

This whole thing is a six-day process. As long as I am doing okay then the schedule has me getting discharged on Sunday morning. It will be at home when the side effects will really set in. I'll be getting a shot here of pre-emptive Neulasta to kick up my WBC production as all three of these drugs are going to take a huge hit on my counts. It's expected that I'll be back to the clinic and maybe even hospital next week to get blood products or look into issues. I can expect to feel very weak and crummy, will have to be very careful around germs and all that jazz. I am also going to lose my hair again. I am beyond sad to say goodbye to my soft curls, but it's a small price to pay, I suppose.

I have family and friends to help and will need to rely on them to get me through these next couple of weeks.

When my blood counts do recover - probably at least two weeks, then the plan is to do a second and last IVAC cycle. We would not do more than that - too toxic.

In the meantime, we are working with the transplant coordinator at Fred Hutchinson in Seattle to get things moving on background testing, evaluations, testing of my parents and brother as potential donors so that things are in place should I hit a magic remission and should I decide I want to go that transplant route. Time will tell.

Right now, it's time for Mad Men, lunch and a nap.



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