raffi's adventures

Since I've been precluded from traveling and working (and almost eveything fun), my friend Simone has been entertaining me with a hard-working, hard-playing little toy giraffe...

...enjoy the adventures of Raffi! (click below)

Mon May 21

hi everyone.
Chris and I finally got to have a relaxing weekend at home - no hospital visits, yeah! I had a quick trip to the hospital this morning for the usual blood tests. We expected my blood cell counts to be really low, but the nurse was surprised to see that they have not totally dropped yet. So no blood transfusions today. Instead... ice cream & lemonade at home! (Thanks KB!)

I'm also finally getting my potassium back up. Seems like a small issue, but my potassium deficiency has added about 2 hrs/day to my hospital trips for the past 2 weeks. Apparently, I would need to eat a tree of bananas to get as much as they drip in my IV...

... Speaking of being a 'hard worker', people were wondering if I am missing work. Yes very much! I can't thank my wonderful friends over at Adobe enough for all the love you have sent. What an unbelievably supportive (and of course, incredibly good looking) group of people. I miss you guys.

I also wanted to share some of the amazing feats my family and friends are undertaking in order to raise money for wonderful causes. Here are a few, and please let me know if I've missed any...

• Pam Leister - on Aug 12, my dear friend Pam will be lithely gliding through Chicago's Distance Classic (that's half a marathon, people!) while raising money for the Leukemia & Lymphoma Society.
• Amy LaRue - also on Aug 12, my dear friend Amy will be modeling the hottest new fashions as she runs the Chicago Distance Classic and raises big money for the Leukemia & Lymphoma Society.
• Leigh Hinkle - on June 3rd, Leigh will get on her bike and ride 100 miles around Lake Tahoe. It sounds crazy, but this wonderful friend is also a survivor of Hodgkin's (almost 8 yrs in remission!), and continues to raise amazing amounts of money for the Leukemia & Lymphoma Society's Team in Training.
• Brett Welborn - We're just plain lucky to have Brett in our family. This cousin never ceases to amaze any of us, and he has gone and chosen the best-named fundraiser: "24 Hours of Booty"! On July 27th, Brett will be riding his bike for 24 hours straight for team 'Chemo Shmeemo' while raising money for cancer research (p.s. it will probably be about 200 miles!).
• Gretchen Hagelow - a lymphoma survivor and amazing gal, Gretchen will be racing through Chicago in October for the big marathon as she continues to raise loads of money for the Leukemia & Lymphoma Society.
• Ian Casey - on June 3rd, Chris's friend Ian, will also be riding 100 miles around Lake Tahoe in order to raise money for the Leukemia & Lymphoma Society! (anyone else feel unbelievably lazy??)
• Kristie Provost - my friend from college is also undertaking the Chicago Distance Classic in August! Kristie is the epitome of bubbly and fun... she'll probably chat her way through the entire half-mar, while raising money for Leukeumia & Lymphoma Society.
• Shannon McHugh - flying in from Denver for the Chicago Distance Classic (on 8/12), our wonderful/adorable friend Shannon will also be leaving the masses in her wake as she raises money for the Leukeumia & Lymphoma Society. (note: with an unfair advantage from training at an elevation, I'd put my money on Shannon.)
  

Love,
Hillary

Thur May 17th

Hi everyone!
No trips to the hospital today... yeah! We just started my first round of out-patient chemo, but it is only on Mon, Wed, and Fri this week. According to my IV bag, my chemo is 'high dose' (tough girl). Fortunately it is totally painless, and so far I have been feeling fine, although a bit tired. My doctor said that I might start feeling sick next week, with the cumulative affects of the chemotherapy. It is difficult to predict though, since everyone reacts differently. The primary side effect is that my blood cell counts will drop to almost nothing, so I'll be neutropenic again. Basically that means I cannot fight off infections, so I won't be able to eat fresh fruits & veggies, work in the garden, or make out with you if you are sick. sorry.
Some good news... my appetite is still going strong. I polished off half of a Lou Malnati's pizza yesterday (thanks, dad, et.al.!), so my reserves should be well stocked in case I need it!

I continue to be so humbled by the amazing outpouring of support from my wonderful friends and family. You keep me laughing and keep my spirits high, and you are my motivation to, if I may quote my cousin Brett, "punch this cancer right in the mouth". Funny mental image! Speaking of my awesome friends and family, I want to share some of the extraordinary things they are doing in order to raise money for so many great causes. So stay tuned, because that is coming soon!

{happy bday to my mama!}
Love,
Hillary

Thur May 10th

I'll give Hillary a break from her postings. She has been feeling great all week - even with her daily 5-7 hr visits to the hospital.
She'll start her consolidation chemo treatment next week as an outpatient on Monday, Wednesday and Friday. After the treatment next week, she will have 3 weeks to recover at home. Assuming nothing changes, she will probably get 3 or 4 rounds of this consolidation chemo treatment over the next 3-4 months, following the one week of treatment and 3 weeks of recovery pattern.
According to our Dr, she could get an infection at some point during the next month and have to be admitted.....we'll do our best to keep her at home, though!
It's been so great to have Hillary home the past two weeks - we've been having a lot of fun hanging out, visiting with friends, going for walks and enjoying the beautiful weather. The return of her appetite continues to impress me....and I think I've packed on a few sympathy pounds trying to keep up!
I'll try to post a few pictures in the next few days - she is very stylish with her hats.
Hillary sends her love to you all.
-Chris

Thur, May 3 - good news :)

Hello dear friends and family!
Chris and I met with my doctor yesterday, and we were thrilled to hear more good news. The doctor explained that they divide cases of AML (acute myeloid leukemia) into low risk, medium risk, and high risk of recurrence. It was like we were on a game show - Chris and I sat on the edge of our seats while the doctor explained high risk, paused and finally said that I am NOT high risk. Phew. Then he continued by explaining medium risk, paused and then finally said that I am NOT medium risk. Jackpot! So I am in the LOW risk category - yeah! Basically, that means I'm more likely to have complete remission (CR) after my next round of chemo. This also means that it is very unlikely they would need to do a bone marrow transplant. (We then veered off on a tangent discussing last week's episode of Grey's Anatomy where Izzy donated her bone marrow... and overacted. My doctor agreed that the whole situation was totally unrealistic.)
Speaking of... I had my follow up bone marrow biopsy this morning. Chris held my hand and we chatted about puppies and shopping, which made it much less unpleasant. We'll get the results back on Monday, and they expect me to be in remission - meaning no "blasts" of leukemia cells. Then we may even start the next round of chemo on Monday. Until then, I'm doing my best to fatten up, which is really a lot of fun.
Thank you all for your funny and thoughtful posts, emails and mail! I hope you know how much it all means to me. OK gotta go... it's snack time!