Strange week. I've been on lock--down at home, highly nuetropenic from the chemo- my blood counts are low, especially my nuetrophils - which fight infection. I had a few clinic visits for chemo. Last week I received Daunorubicin, Vincristine, Pegasparaginase (a variation of l-asparaginase) and I take daily Prednesone. I guess the cold-like symptoms I'm feeling now are from Vincrinstine or Pegasparaginase. Lots of coughing, a sore throat, and headache. Today at clinic we checked for infection and I was negative so I'm blaming Asparaginase. Why not? I hate that damn chemo. They let me come home - back to lock-down - so I can enjoy the coming New Year! I have more Pegasparaginase scheduled for tuesday 1/2 - I just can't wait! My doctors love this chemo but it sure does kick my ass... Like Green Bay is doing to the Bears at the moment!
so I'm happy to be home, enjoying Beth's amazing cooking (stuffed Salmon, Lasagna, chilli) and feeling very fortunate to have so many people cheering for me. It's very humbling..... Thank You. Happy New Year!
Merry Christmas everyone! I want you to know that I'm feeling great at home and my treatment is going according plan. I could not have made it to this point without the constant emotional support everyone here has provided. I have felt so much love here - I have no choice but to get better. The financial support has been overwhelming as well. I am so fortunate to have such great friends and family. Thank you for keeping me in your thoughts and prayers.
I hope everyone has a great holiday and I can't wait to see you in the new year.
Peace and Love, Chris
After 4 days of outpatient Chemo I'm feeling ok. I'm starting to feel tired with my blood levels falling as Christmas approaches. I have a sore throat, probably from the Pegasparaginase so I must watch that. It followed the hives I got immediately afterward and it is a more predictable side effect than the clot reaction I had a couple months ago. I'm doing my best to not get sick now thus avoiding the hospital.
Happy Holidays to everyone. Thanks for all the support. I'll lay low for a bit now unless something happens....
Merry Christmas and all dat!!
Yesterday went smoothly once my labs came back. 2 big "pushes" from a massive syringe and it was over in 5 minutes. I had many concerns going in as my night sweats are back, my joints are hurting and my left ear still clogs. All mild discomforts but still symptoms I had before my diagnosis so I was a bit nervous. Blood tests and the negative results in both my recent Lumbar Punctures confirmed no relapse and I felt much better. Still on track!
Today will be the dreaded Pegaspargase - with a different formulation than before and I'm now on blood thinners - so it should go smooth with no clots!. I'll also have some more Daunorubicin and the daily pills of Prednisome (hate em!).
oh, and I read UCSF is ranked 9th in the US and we all know Dr. Linker is The Man so I am in great hands!
Next was a very fun Lumbar Puncture with NP Mike Nixon and friends. Mike, you can stab me in the back anytime! It was particularly fun as we watched "Best in Show" throughout the procedure. Who says Spinal Taps are tough? "this one has 11......or it can never be played - don't even look at it" ahhhh....so funny!
Now some photos from my fun support team over the past week....
Beth and I walked the mission a bit and found even more cool alley murals.
These last photos are of the complicated X-ray LP. a strange procedure after so many successful regular LP's - but we got it done!
The X-ray guides the needle to the right spot.
Dad's looking good but we have to work on the mustache. :)
Lastly, a representation of my life at the moment....a bowl of drugs!
I entered Chemo World again last Friday with a Lumbar Puncture that took 3 attempts. The first 2 attempts took place in the clinic but we had some bad luck and I was sent X-ray area for what felt like a much more complicated procedure. Eventually, with the help of the X-ray machine, we found the spot and I was injected with Cytarabine Lipsome ( also called Depacyte -brand name) - a long lasting interthecal Chemo that breaks the "blood brain barrior" with the direct spinal injection.
Today, as an outpatient, I will receive the IV (and maybe pill) Chemo's - Daunorubicin, Vincristine, and Prednisone ( I hate this last steriod as it makes me hyper!).
Tomorrow, it'll be "fun with Asparaginase day" as Dr. Linker feels this is an important Chemo. You may remember this is the chemo that caused the blood clot on my head that still gives me headaches (they are much better though now). I'm told this will be a different formulation of Asparaginase and I continue to be on the blood thinner Lovenox so things should go smoothly. I believe I will rest and recover thru Christmas after tuesday.
I have a ton of pictures to load but I am out of time this morning so "man soon come!"
I need to say thanks to all who have given me financial support, both here in the states and in Europe. It means so much to me and takes so much stress away. I promise to reward everyone witth a full recovery. Thank you so much for such generosity.
And Thank You, Todd Nelson, for putting together that fantastic tennis video. I've got to figure out how to get it on this blog. Nice shouts from James Blake, Roger Federer, Ivan Lubijic, and Andy Roddick. You guys are the best. We have laughed and laughed as I make everyone watch it. so cool!
Hi my friends. I just wanted to write a quick blog entry to let everyone know that I'm doing fine at home as I wait for the next round of chemical warfare. I will receive outpatient chemotherapy this Friday, Monday, and Tuesday. I'm ready to get on with the fight. and it will be nice to do it from home. I hope to explain things in more detail tomorrow and to catch up with all the emails from my international support team. Thank you everyone for keeping me in your thoughts. It means so much to me.
Hi. sorry it's been awhile on the blog but last week was a strange week. The one thing I'm not supposed to do, I did and that was catch an infection. It happened at the hospital which is a good thing. With my fever at 103 degrees, My doctors and nurses swept into action, found an appropriate antibacterial, and I was relatively back to normal. The fun part was how dillusional I became and how I can remember very little of the 3 day experience. My dreams and conversations with people started to mix a bit - the same thing would happen when I was a kid. I'm just now starting to get my head back. Sounds strange but it was actually kinda fun.
Earlier in the week, I had a lovely visit from my longtime friend Julie and that was very cool. She literally flew in for the day and it was great to see her.
So my blood levels rebounded quickly from the "thanksgiving chemo" and they sent me home yesterday. Now, I'm tired and still a bit headachy but I'm happy to be home. My head has been feeling "fried" this past week so I just want to sit and recover a bit.
I saw my friends Jay and Leah this morning for breakfast. They had their little one, Zach with them. Great to see them as well.
I'll write more about what comes next chemowise and add some pictures soon as well....
I'm back in the hospital, completing this 21 day cycle that began with the 4 days of chemotherapy before Thanksgiving. Dr. Linker timed it perfectly, bringing me back in just as my blood levels fell to make me neutapenic and very susceptible to infection. I feel pretty good, maybe a bit shakey, but overall I'm content. I just received 2 units of O Negative so my energy is up. But they can't easily replace white blood cells so I must wait a couple weeks to bring that count up. I have some time to catch up with emails and phone calls. I also found out that my next round of chemo (the 2a cycle) is outpatient ( I thought it was in house) so I will have a nice block of time at home that includes Christmas. woo hoo!
Congatulations to the Breeders!!! lovely work!!!
I'm so blown away by such love and support. I am truly humbled and thankful to have such great friends. I'm getting emotional just writing about. I received the Bear's package (the Chris Boring fund - thanks Jim!) and I was speechless. Thanks so much for such concern and generosity. I WILL NOT let everyone down. Y'all are the best! thank you, thank you, THANK YOU!!!
I'm home now, tired but happy. I'm feeling last weeks Chemo a bit so Big Blue (my awesome rocking chair) and I are bonding heavily. I'll go back to the hospital for a couple weeks on Monday. But not before the big Bears test on Sunday. should be interesting.... pics to come soon.
I love you all. thank you again for getting me thru this. Words really can't express how I feel right now.
The Thanksgiving Meal....
The newly engaged couple! (they announced it tonight!) Congratulations!
My Paris support group - wish I was there. Thanks everyone!
Some pics from my last hospital stay....
a male anna's hummer thru our dirty windows....
This is the entire chemo plan. I'm in the middle of 1b. When I'm finished with it, I'll roughly be half way done.
Well, I felt really good at my clinic visit on Friday, and I suspected change would happen. No more "the day after Thanksgiving (Dr. Kaplan)" - Dr. Linker felt I looked and felt good enough to continue on with the chemo - in the hospital. Starting Monday. uuuugh! I understand Dr. Linker. We lost some time with the blood clot and we must play catch-up for a bit.
But there is a silver lining: because Etoposide and Ara-C are taken a few hours a day over a 4 day period, and because their nutrapenic side effects are usually felt 3-4 days later, the kind doctor is allowing me to return home for Thanksgiving and maybe even a couple of days extra! Cross your fingers!!
I came to the hospital earlier and as I was checked in, I mentioned that my shoulders had begun to ache again and I'm having a few night sweats, where I soak 4 shirts in the night. It reminded me of how I felt before the diagnosis. I didn't think that this new info was very important, but sure enough, when Dr. Linker heard about it, he scheduled a Bone Marrow Biospsy - just to check- the quick results came back and said I was leukemia free! This is so good because if there had been cells, we would have to take a different approach, possibly including Bone Marrow transplants. I was relieved....
