Well, I could apologize about the lack of updates, but between life, work, parenting, cancer, and work... did I mention work... it's been busy.
Lili and I received a wonderful gift last weekend--floor seats at the Houston Rockets game. We were very excited and grateful to our friend who kindly shared his tickets with us. After many long days, nights and weekends working it was a great blessing to have something totally FUN to celebrate TWO YEARS of LIFE with cancer.
Seems odd huh? 'Cancerversary' is a word lots of survivors use to describe the day you find out you have cancer. It is a pivotal life altering moment in time that seems as big as the Grand Canyon, but far less Grand. Not sure how to celebrate such a moment, but it's certainly hard to forget it. The crisp days and cold nights tend to make my bone pain kick up and the fallacy of living cancerfree comes into full view.
Speaking of FULL VIEW, Lili was less than excited about our 'floor seats' because she thought we would be sitting on the FLOOR! She was very excited once she knew chairs were involved! And now after two full years of life with cancer, I can say authoritatively that life without cancer is much preferred, but not necessarily better. (Chairs or no chairs.)
Sure, without cancer lots of horrible things would not be apart of my (our) lives. But I must say that cancer does provide a reality check each and every day. When I hold the chemo bottle in my hands I often close my eyes and just try to remember life without cancer. BUT, I also must admit cancer has forced me to see everything in a different way--not necessarily better, just different. Kinda like becoming a parent changes your life forever.
In my case, it's life with cancer. Cancer is not a game, a battle to be won or lost, it's not any one special day or holiday, it's life--messy, unpredictable and mine.
So I'm thankful for two more years of my life.
(Daisy at the Thanksgiving table!)
I'm thankful for laughter in all it's varieties. I'm thankful for friends and family--a mighty force of love and support.
I'm thankful for moments when I forget about cancer for even 10 seconds (watching Battier play basketball two feet away count double). I'm thankful for clean water, and a loving daughter who is responsible (she composts and recycles). I'm thankful for celebrations of any kind--the wackier the better. I'm thankful for dreams, because man can not live on reality alone.
Most of all, I'm thankful for that place between sleep and awake--where Peter Pan and Tinkerbell meet--because there I am cancer free.
For all the Hoyas out there, you know the proper response to that question...
It's been so long since last we met,
Lie down forever, lie down;
Or have you any money to bet,
Lie down forever, lie down.
There goes old... Georgetown,
Straight for a... touchdown,
See how they... gain ground,
Lie down forever, lie down,
Lie down forever, lie down...
The Georgetown University fight song continues on to bash the historic rivals (Harvard, Navy, Holy Cross, Princeton, etc.) and is long and complicated.--kinda like cancer. In any case, this little blog window into my brain let's you see how I get from 'how long has it been...?' to the Georgetown fight song.
Ok, the cancer news first. My PCR is less than 0.001% of a million. TOUCHDOWN! Which sounds like nothing unless you are talking cancer cells at the DNA level and you have billions and billions. Translation: It's great news, but I still have cancer. Or, the cancer would have me, if I didn't take daily chemo.
Speaking of chemo, here's a photo of my meds:
It seems someone at work has doubted that I have cancer since I still have hair and don't look like I have cancer. (Should I say thanks?) I do have hair, and I do have cancer. The chemo is a clinical trial and not your granny's chemo. During the first few months of chemo I did lose about 1/2 my hair, but I had a ton to start with. I cut my hair as soon as I started leaving piles of it on office chairs. Now it's growing in full and DARK, and I'm trying to grow it crazy long.
In other chemo news, I was allowed to lower the dose of Sprycel to 80mg per day. A 20% reduction doesn't sound like much unless you have mega bad headaches for months at a time, nausea, rashes, bone pain and general fatigue that saps the life out of every day. Right after the dose was changed I had two awful months of being sick with various sorts of nasty infections. Then three rounds of antibiotics and super steriods.... and amazingly I feel MUCH better. Really... Look...
It's good being an 'almost zero.' Even if my cancer was 'undetectable' I would still be forced to take chemo forever. The chemo is what keeps the cancer 'in check.' Maybe someday there will be a cure.
On to other news.
The holidays were fun. Lili was in the local newspaper for some great work with the local foster care gift program. Read all about my sweet baby girl here: http://www.chron.com/disp/story.mpl/metropolitan/6166661.html
I slept through new years, but that's cool as I needed the rest. Didn't get Christmas cards out so here's a holiday photo:
It's me, Victoria our cousin, and Lili on the day after Christmas at the mall. We are doing our part for the economy. Trust me it was a sacrific at least on my part.
January is a blur as I put in some crazy hours for work. Things are better now, but there are always more deadlines coming fast.
Now it's almost Valentines day! I'm not so sure I like this holiday. Something about a Catholic priest, a flute, and some snakes right? Or is that Harry Potter 14?
Seriously, there have been some very hard days and weeks 'since last we met.' Lots of days I wasn't sure how all the responsibilities were going to be met with so little energy. Some how the sun sets and rises without regard for whether or not we are ready.
Speaking of ready... I wasn't ready to say goodbye to some friends who's cancer adventure took them on to their reward. Yes, they died. And sometimes it's hard for me to comprehend how the world just keeps on going as if nothing has happened. This brings up all sorts of questions about my own life, and of course losses large and small. Arbitrary is a word that keeps coming up. Why did my chemo work and their's didn't? It's not survivor's guilt, but survivor's stewardship.
May we all have the wisdom to choose integrity in each decision, and find strength and give strength in every human contact.
Lots of love,
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
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
And I do mean everything
Over the last few months I started writing a blog entry about a 100 times (approximately once a day since the last entry). However, each entry didn't sound like me, or at least the me I remembered. Some entries were laden with dark humor with a particular harsh twist on reality. Some entries were so boring, I fell asleep before pressing the 'enter' button to publish and thus lost the entry (no big loss I'm sure). Some entries were so sad I just couldn't commit to the hopelessness in black and white. So, yes, until recently I hadn't see seen myself as one with dark harsh humor, boring and hopeless. Perhaps I've changed.
I want to write entries full of hope, strength, and persistent faith, with amazing pithy quotes that people want to make into T-shirts. However, that is not my reality most days. If I was anything I was persistent. No longer. Often (after work) I'm just too tired to care to finish anything--even ice cream! And if you can imagine, sex has lost its allure (more on that story... but suffice to say that chemo changes everything). Chemicals change us, and therefore putting powerful chemicals into my body twice a day changes everything for the better and also sometimes for the worse. Chemo is the double edged sword that saves and kills at the same time. (Hey… that could be a t-shirt huh? )
Lili and I didn't go on vacation for a number of reasons, but we did go to camp in west Texas for a couple of days in June and July. It was a blessing, but I should have left my work at home. I feel guilty for being at the hospital so many days, so taking more time for a real vacation just seemed like too much. Perhaps I have learned my lesson to leave guilt out of the healing process. However, fear of losing the house and health insurance also hangs heavily over my head (and a few 100 million other Americans).
Things that are good: I was too tired to even consider evacuating for the hurricane. We survived with only damage to the fence, house and apartment roofs. Well we did lose everything in the fridge and freezer, but I digress. The good part was hanging out with neighbors and their friends making dinners from our thawing freezers. It was a wild combo some days, but it was nice to hang out with folks.
More good things: We were blessed with the best work crew in the world to help us paint and fix up the house just BEFORE the storm. The kitchen has been transformed! Now, we have a new stove with a working oven, a dishwasher, and a disposal!!! I know, I know and it's only 2008. Are we ahead of the trend or what? For a leukemia girl, the dishwasher is a great infection fighting tool!
Great things: Lili and I are extremely grateful to those of you who call and email to keep us connected to what's going on in your lives. Even if we don't write back, we read everything and share voicemails of information. It is our true lifeline to what life was like ‘before’ I got tired.
Super great thing: For one week I got to take a break from chemo. Nine months of chemo led to some crazy bad migranes that were impeding my ability to focus. It was a busy time at work, and the migrane mix was not a good combo. The trial nurse checked with the doctors and I got a ‘week off’. It was amazing wonderful fantastic freedom from the fatigue of the chemo and the headache. It took a couple of days for the chemo fog to lift, but then I had a few days of energy. I started taking the chemo again on the same day the hurricane arrived. That’s poetic huh?
My test results are good. The medicine seems to be working well on the leukemia. The issue now is managing the side effects. Quality of life is now the focus.(I'd like energy for more than 8 hours, fewer migranes, less pain and swelling, prevention of heart damage). Since the medicine is working, the doctors don't want to reduce the dose as they seem to be worried the leukemia will work around the chemo and become resistent at lower doses. So now it's my decision on if I should 1)lower the dose and enjoy today a bit more and risk some of my future, or 2) just work and sleep and perhaps have more of a future. Nothing is guaranteed no matter what I choose. WHAT WOULD YOU DO?
One of the hardest things about being physically and financially strapped to cancer is how much time it sucks. Lots and lots of waiting. Waiting for the nausea or migrane to go away. Waiting at the hospital. Waiting at the test place. Waiting for the car at the parking place. Waiting for pain pills to kick in. Waiting for the financial insurance person. Waiting to gather enough energy to do something other than work and chores. Waiting for the phone to ring. Waiting, waiting, waiting. I hate waiting. (ok, that’s not new I guess.)
Cancer has changed everything: How I pray. How I view the future. How I view my here and now. How I spend my money (bills). How I make vacation plans. How I make friends. How I spend my time. How I make career choices. How I sleep. How I make plans for the day. How willing I am to have a conversation or just sleep. How I respond. How I have sex. Cancer has changed everything.
Lili and I love you, we thank you for your support, and we miss you more than we can convey.
More Recent Articles