Tuesday, October 28, 2008

Gimme Some Sugar!!!

My Uncle Sonny always greeted family and friends with a big pucker kiss, lovingly asking for 'some sugar'. Maybe it's a Southern thing, but hellos can take a while around here with all that hugging and kissing. Lots of family at an event meant lots of 'sugar' and celebration.

So, I greet you with a big smooch, and some news.

The doctors have finally decided to lower my chemo by 20%. That may not sound like much to you, but it's a HUGE deal around my house. The chemo makes me really tired, and there are various side effects that ramble around disrupting life and sucking the fun out of life. Lili is known for saying, 'you used to be so much more fun'! She also mentioned several times how boring life is as an adult just working and sleeping. My feeling uber crappy all the time was impacting our lives and adventures a lot.

The constant migraines were the last straw. Finally the research nurse made an appointment for me with the doc to discuss the lower dose. We tried a 'chemo break' (for the week just before the hurricane). But the headaches slowly came back along with the general crappy aches, nausea, fatigue, etc. I must say that a big dose of depression comes along with the chemo too. When your brain is foggy, your body hurts, you have a headache and feel like you want to throw up... let's just say I am NOT much fun. (Let's not mention how hospital bills add to the stress.)

Sure, I clean up and play for short periods of time. But my energy didn't last long and frankly Lili got the worst and most tired part of me. (And she would add cranky too.) Whatever energy I had was used for work and chores, so Lili got the tired leftovers. Only rarely did people see us when I felt bad, as we aren't getting out as much anyway. I used 'real sugar' and caffeine to boost my energy, but it didn't work for long. I'm here to say kisses are better than cokes!

So, more news... I am starting a new phase of cancer, which I call the Marathon. Lord knows my cancer is not a sprint, but a life long marathon. When I was first diagnosed I was super sick and didn't work much so I could go to more accupuncture, yoga and massage. Once I started feeling better I became a 'backslider' as far as my complementary treatments. The doctors remind me all the time that massage is good since the chemo tends to make the body 'tense' all the time.

If I running a marathon I would change my schedule to accommodate all the training and prep for such a huge event. Finally I realized I need to work on my schedule more to include the accupuncture, yoga, massage, and aerobic workouts necessary to prepare myself for the cancer marathon. At the moment I am not energy efficient, I use what I have then I go to bed. That's not good for me in the 'long run' and not good for Lili right now.

If the medicines stop working to control my cancer, I would need a transplant. Even if the hospital found a donor, I would need to be in 'marathon' condition to go through such a transplant. Clearly I am not ready.

Hopefully the lower dose will keep the cancer in check and allow me a window of opportunity to rebalance my life with some new priorities. The cooler weather is bringing lots of change, and I hope it's all good. I promise to keep you posted on my 'marathon'.

Lots of love,
Rhonda, Lili and Daisy the dog

Saturday, October 18, 2008

Kate runs LLS Marathon for ME!

With her "GO KATE!" sign Lili got into the spirit of the marathon with some silly photos! We want to encourage Kate to the finish line. GO KATE!

That's right our friend Kate Langbein is running the Nike Marathon for Leukmeia & Lymphoma Society this weekend in San Francisco. I am so jealous! For several reasons:

1) Kate can run a whole marathon (My dream to be a long distance runner and wear cute hot pink shorts has never really worked out. Bet lots of you didn't know that huh? Comes from watching olympics on a black & white tv in the 60's, and attending lots of my brother's track meets as a kid. Dream big, run a marathon.)

2) Also, Kate is running in San Fransico, one my my favorite places on earth! (I haven't been to each of your towns, as I am sure they are all wonderful, but I do love some San Fransico!)

Other than jealousy, I am very proud of Kate taking on a marathon for her own health, and for those of us fighting leukemia or lymphoma. Cancer is a difficult journey every day for several reasons. Some days feel very lonely with a soreness kinda like I ran a 20 mile race, and some days my wallet is sore. No doubt the marathon is difficult, and at times no matter how many people surround you on the track, the race is personal and difficult. Kate is a hard worker, and determined, so I know she is always successful in what she does. What an inspiration! GO KATE!

The Leukemia & Lymphoma Society (LLS) directly supports me with financial assistance for transportaion/parking for medical visits. The LLS also supports patients with lots of information, support groups, and matching patients with other patients to gather more information about our own marathon. I appreciate the LLS and their research into medicines and therapy for the diseases. It's wonderful that Kate has taken on this challenge and is also supporting a worthy cause.

If you would like to visit Kate's fundraising site, please check out this link:


To those of you who have already contibuted from my previous email. THANK YOU!!! You are all stars in the sky to keep me going through this long journey of leukemia.

Here's Kate's fundraising letter sent out around the world! Enjoy, and thanks again. Kate is the lovely one in the middle of this photo.

FROM KATE: As you know I am crazy about running - I run when it's beastly hot as it was yesterday and I run when it's freezing cold. I became a runner through the Leukemia and Lymphoma Society's (LLS) Team in Training program and I am back for a third time. I wish I could say it was just because I love running but this time I am running the Nike Women's Half Marathon on October 19th in honor of my friend Rhonda Radliff.

Rhonda's chronic myelogenous leukemia (CML) was diagnosed in November 2007 and fittingly I found out when I was on my way to another race. Doing another season with the team in her honor was the second thing that popped into my head after the first "it's not fair". Cliche as it may sound Rhonda has a heart bigger than her home state of Texas, an amazingly generous spirit that welcomed her daughter Lili into her life three years ago and impact felt round the world (literally as she has worked for two multi-national investment banks in her career). Even though she was my client, Rhonda became a professional mentor and friend to me as I was learning my way through the institutional equities business. We share a love of dark chocolate, champagne, and have been known to pick out the same pair of shoes in a store. She gives of herself every day - to her daughter, family, friends and faith community - and I can think of nothing more that I would like to do but give back. Rhonda's CML is almost in remission, but she remains on drug regimen to keep her CML at bay, including the second generation of drugs that received their initial research grant money from the Leuekemia and Lymphoma Society.

In addition to funding cut-edge drug research, the Society also supports newly diagnosed patients with access to information, support groups and financial support. The Team in Training program is the largest fund-raiser for the Society and has helped 360,000 people to the finish line of an endurance event while raising more than $850 million dollars.

Any amount you can contribute helps as little as $25 can fund a conference call to provide information to newly diagnosed patients. My online donation page can be reached at:


If you'd prefer to write a check make it payable to the Leukemia & Lymphoma Society and mail it to me: 10105 Meredith Ave, Silver Spring, MD 20910