Wednesday, October 17, 2012

Round 2: Toxins, Dopamine and Technical Issues

Chemo is a poison. The nurses have to put on special gowns and gloves to change the bags. My bathroom in my hospital room is literally a biohazard zone and any visitors cannot use it (there is no sign but be forewarned). There is a special biohazard box in my room to dispose of anything used related to the chemo, and I've been told to expect that my body will remain toxic for 48 hours after I finish the chemo.

I am finding it really ironic that to get well I am being continously injected with poison. The doctors have explained the abnormal cancer cells in my blood and bone marrow are weaker than the normal cells. The chemo effects both but the goal is to wipe out the abnormal cells completely and then give the normal cells time to regenerate.

Today I am starting to see some side effects. My face and next are red (flushing). I've had some chills, a slight headache and I am extremely tired. So far still no fever which is great. My doctor said today if I make it through chemo with no fever I could potentially come home earlier than he told us which would be great news.

All my blood counts remain very low, and the doctors say the transfusions will boost them for a bit but the chemo will continue to push them down. My platelet count (this is what helps your blood clot) was 11 before the transfusion and went up to 17. For perspective a "normal" level is 150. Typically now they do a transfusion to keep your levels above 10. The cut off use to be 20 but they found there was not a big different for patients if this was taken down and apparently there is (and has been for awhile) a national shortage on platelets. So if you are looking at how to help please check out where you can donate platelets or blood in your area! Note there are no photos on this blog for a reason but trust me I have some killer bruises.

My white blood count remains low and is ticking lower (around 2). The white blood cells fight infection so that is why I have to be very careful to not be exposed to germs. The chemo kills the white blood cells and these cannot be easily transfused so we are expecting these to go down to next to nothing.

My red blood count was boosted by my 2 units of blood yesterday, but are still well below normal. The red blood cells carry the oxygen through your body. Both my low levels of red blood cells, or hemoglobin, combined with the chemo (combined with the every 2-4 hour round the clock vital checks, med rounds, etc which are impossible to sleep through) are all making me feel like I have been hit with a tired stick. So if I am posting less it is just because of the extreme fatigue.

We asked today what happens when I get out of the hospital and when we will know if the chemo is working. Sounds like it will be early next week before we get a read on that and then really 3 months post chemo before we know for sure how effective it was. In the interim I was told to expect blood draws 3x/week to check my levels and regular blood and platelet transfusions as needed. If this round of chemo does not work then I get another hospital stay same chemo drug plus another drug.

We have been joking that our health insurance must hate us. With our move back from China we went on new insurance as of Sept 1. It is looking like we are going to be testing the limits of it (and we are wishing we put more money in our Medical Pre-Tax Flexible Spending Account).

Have also realized today that being in the hospital I am going through dopamine withdrawal. Outside work, I am use to having a child snuggled next to me, hopping in my lap, hugging me, or leaning against me while doing homework or eating dinner in a most annoying fashion (so you know I am sick and/or desperate if I missing this!).  Also, after 16 years of marriage am use to getting a good nightly does of  dopamine from sleeping next to Chad. Getting my blood pressure taken, or central line dressing just really is not the same.

The girls and Chad are picking up Dewey's and bringing it the hospital so we can have dinner together tonight. Hoping to fill my dopamine tank and get in a family game.

Sorry for the technical issues making it hard to comment on this blog and with some of the links not working. We think we have gotten all the glitches worked through, but email our Family Technical Director (aka Chad) if anything is still not working. This blog was obviously not a preplanned venture!

We are surprised at how it has traveled and we hope it is helping friends and family stay up to date on what is going on. There have been over 2000 hits so far. While I know many of these are from my anxious parents (Mom and Dad, I am assuming though you are not making more than hourly attempts at updates :)) we know it has traveled far beyond my family.

So all in all going about as well as we could hope for. I am very tired but hanging in there and counting down the days... close to 2 rounds of chemo done, 5 more to go.


  1. Beth, my prayers are with you and your family. Hoping that this 1 course of Chemo will be all you need. Enjoy the family time. Ann Brenneman

  2. We got the the link from Robin K last night and I spoke with her briefly this morning. The shock of your diagnostic journey must be fierce. I cannot even imagine what you must be thinking and feeling... You both are wonderful writers and are clearly speaking from the heart. Thank you for generously sharing with us. You will remain in our thoughts and prayers!
    Hugs and dopamine!
    Robin & Keith West (just in case the names don't seem immediately familiar, we are your sister Robin's sister-in-law and brother-in-law)

  3. Hi, Beth and Chad,

    I am so sorry that I was so poor at the IT stuff that I need your help to fix it. If you see this message that means Chad just passed the "test" to be technology director!

    As a strong runner like you, you will through this. Thanks for sharing this with us. We will be chasing this and keeping sending strength to you!

    Jenny & Howard

  4. Checking in twice a day. It's good to know that you're coping & you guys are always an interesting read, just wish it was about a fun adventure. Rest assured, Shelia & I are thinking of you, sending our strength & love. Cousin Andy

  5. Beth and Chad - I read your words with admiration and awe. I hope you are finding strength and courage in knowing that so many of us are thinking of you and praying for you as you tackle each day. Wish we could package and send you some Seattle dopamine! In the meantime, will be checking in on your progress every day.
    Thank you for sharing your story.

  6. Sherri and I are following along daily - inspired by your courage and strength. I feel sorry for the luekemia - it picked the wrong person to mess with. If it were possible, I'd gladly take some of the needle pricks for you. Since that wouldn't help - let us know what we can do that would help. Name it and consider it done. You're in our thoughts and prayers.