Tuesday, October 28, 2008
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
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
Thursday, September 25, 2008
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.
Saturday, May 31, 2008
It was an eventful day here in Houston as I celebrated with a press conference with the mayor. Ok, it wasn't a press conference for my six months of chemo, but there was a press conference! I stood with the mayor as he announced a detailed plan to continue the fight against benzene, a known cancer causing agent that is pumped into the air around Houston by industry and autos. I was 'exhibit A: the leukemia person who grew up on the east end'. None of the press had questions for me, but it was good to stand with people who believe in fighting benzene. Kudos to all those warriors who stand up for what they believe will make the world a better place.
In other news... the side effects of my chemo have been kicking me around during the past two weeks. LOTS of nausea and a sort of dizziness have kept me out of the game for the most part. I feel very unproductive and a bit freaked out by how far I can get behind in a such a short period of time! THe doctors have added several new medicines to help, but each one brings its own set of side effects too. I am confused at times how to take all the meds and which ones can't be mixed with other ones, blah blah blah. Add all this to a sinus infection and wow... I feel mega crappy.
Nevertheless, with some bursts of energy here and there Lili and I did plant some basil and tomatos in the back yard. It's been nice to see our plants growing and blooming. Next blog I will try to post some of our favorite blossoms!
Lili finished up school so the official start of summer has arrived. I am happy to be free from the drop off and pick up patrol for a few months! Lili will be starting driver's education very soon, and she is doing well backing the car out of our skinny driveway.
Last week I spent most of the week at the hospital with doctor appointments and another bone marrow extraction. There were huge mixups with the meds and the whole day got turned upside down, but I did finally get through the maze at MDAnderson and got everything done for the moment. Test results will be back in a few weeks (we are accepting bets now for when the results will actually arrive).
Warning: It's not uncommon for the test results to 'bounce' meaning I may have 'worse' results this next go around. I keep telling myself that it's normal to 'bounce' so don't freak out. When I was feeling good, I did worry less. As I am a mess of side effects at the moment: swollen, headaches, snotfilled, rashy, feverish, with nausea... I tend to worry more.
I'm sure that the raw vegan way of eating is best for fighting cancer. However, the more tired and sick I get, the less likely I am to eat raw vegan. How wierd huh? It takes more time and effort to juice and eat right, so when I feel bad, I have all the stuff I don't normally eat. It tastes good, but I don't think it's helping my immune system stay strong (evidence: the sinus infection and swelling).
So today Lili and I are once again trying to get back on track and 'go raw'!
Thanks again to all those who sent great cards, comments, emails and phone messages! I enjoy them so much! Many thanks to my family and Peggy, Gracie, Melody, and friends for coming over for birthday fun last weekend. I loved seeing each of you, and the sweet potatos from the grill were fab!
The past month a friend died from metasticized cancer, however there are success stories from some friends this month too. My friend Della, from Florida, came through her heart surgery with flying colors. She is a bright silly star and Lili and I have enjoyed her staying with us and sharing her tenderheart, sense of humor, and of course her amazing love for our darling Daisy dog. Della also inspired us to get henna tattoos at our friend Betty, Douja, and Norma's party!
Please do keep in touch, and I hope to see each of you very soon. You are welcome anytime, just call to see which side effect is in residence at the moment. You may not enjoy watching me sleep!
Tomorrow Lili and I will celebrate 3 years since her arrival. It seems like just yesterday and then it also is hard to remember life before Lili. We hope to celebrate by doing some of the things we did on her first day (go to Target and then go get a hamburger)! Let us know if you want to join in on the fun!
Wishing "all ya'll" hugs and kisses, health and adventure,
Thursday, May 1, 2008
Here are some highlights of the past four(ish) weeks:
1) Finally got the results to the cytogenics testing THIS week and I am 0 out of 20. This means I have reached the cytogenic response (it's a good thing).
2) Blood tests done this week are PERFECT, meaning normal stuff like iron, white blood cells, platelets, etc. I am NOT anemic or anything. The physician's assistant asked me 'Why are you here?' I replied, "I'm in a trial for a leukemia drug and I have to come in every couple of weeks?" She said that they rarely see someone with such great blood tests so it was hard to tell! Yeah!
3) Side effects are cycling through every so often, but I am more familiar with how it feels and how long some of them last, so it's a tad less frightening. For instance the bone pain comes and goes, the headaches, the wierd feeling in my hands, the swelling, the puffy eyes, the wierd hormone flushes, etc. I doubt some of them will go away, but it is less. The main thing is that my blood levels are normal.
4) I went to two retreats. The first was with the Crazy Sexy Cancer Tips author Kris Carr. It was held in Austin and my fab fun folks at the Crazy Sexy Life forum helped raise money for me to attend. It was a lovely introduction to some great cancer survivors and a reconfirmation of my decision to pursue the raw vegan way of life. The second retreat was with MD Anderson and it was also a great way to meet folks living during a cancer adventure. LOTS of laughter and a few tears, but mostly aches from laughing so hard. Cancer patients have some crazy gallows humor, but it was all good.
5) We celebrated Lili's birthday and had a big fun party complete with fancy dress. I hope to post a couple of her fab photos. We took the photos at Peach & Connie's in Shepard. It was a lovely day and so the photos seem to capture the sunshine of our first trip in a LONG time.
6) Lili changed schools and LOVES her new public school. It's a wonderful place and it's so fun to see her excited to go to school each day. Her grades are up and things are moving along well.
7) I'm working more and still tired at night, but it's nice to be at the office more and working to accomplish more every day.
8) The Stem Cell transplant team found two potential donors for me. I am approved for a stem cell transplant if the chemo stops working for any reason. The only thing is I need to be healthy enough for the transplant and have a donor. I am getting healthier all the time, but the two potential donors are not viable (not a good enough match). SO... I am without a back up plan, and if the drug fails it usually happens within the first two years. I am only 5 months into treatment at this point, so it will be tense until I find a perfect match, or until I reach that two year line in the sand. Truthfully I am not sure I will really relax even after two years as it's always good to have a plan B!!!
9) Lili and I really really appreciate the phonecalls, cards, letters, checks, pictures, posters, poems, voicemails, etc. during our cancer adventure. I have used the resources to have acupuncture, massage, and wheatgrass! It's an exciting life! We really appreciate all the love, prayers and special packages that keep arriving. Thank you, thank you, thank you!
Hedy, please tell your 4th grade class that we LOVE LOVE LOVE the letters and artwork. And...YES, I am still funny to answer one of the kid's question. Jeff, thanks so much for the great letters from the Powerhouse Kids!!! Lili and I loved reading them and seeing their bright healthy smiles.
10) This week Lili and I are working with our local bone marrow donation organization to encourage folks to sign up to be a donor. I will send out another email with all the details so you can forward it if you want. We may be participating in local drives and be on tv. We will let you know how it all shakes out and if anything shows up on a tv near you.
Talk to you soon by email, phone, letter (thank you note), or our constant prayers of thanks for each of you.
Rhonda, Lili and Daisy
Thursday, March 20, 2008
After more than three weeks I finally got one of the two bone marrow biopsy tests back.
IT"S GOOD NEWS!!! REMISSION REMISSION REMISSION (or almost confirmed)
For those of you with CML, my PCR test is 0.06%. Which means I have a 3 log reduction in the presence of the 'philadelphia chromosome' at my molecular level. When the remaining cytogenics test comes in, if it is 0 out of 20, then I am in REMISSION. woooo hoooo!
For cancer at the stem cell level, I need three things to be in remission: 1) Hemotological response (Check) 2) Complete Cytological Response (0 out of 20 test) PENDING, and 3) the PCR molecular response is a 3 log reduction--a reduction of three decimal places. (Check).
It's unlikely with such a low PCR that my cytogenics won't come back 0/20 but still....
Now, my goal is PCRU, which means the canser is UNDETECTABLE via the most sensative PCR test.
Thanks for your support while I have been WAITING!!!
Peace and love,
PS. Blood pressure is the same. Haven't passed out. Walking the beach and celebrating with a couple of days OFF.
PSS. The 'ASS' gene (part of chromosome 9) is still missing except in my PANTS!
In case you want more info on the subject of PCR and CML remission: http://www.cmlsupport.org.uk/?q=pcrresults
Sunday, March 16, 2008
Yes, that's three weeks since the bone marrow biopsy and there's nothing to report. It would be nice to think that no news is good news, but I think that once the doc says 'it's cancer' those days are gone. The waiting is torture, and each day I come up with something else to explain just what I would take in the place of waiting. Example: I'd rather clean three bushels of catfish than wait another week for these results. Or, I'd rather clip the dog's toenails... (wait dogs don't have toes do they? You know what I mean.) In any case, I really want to know the test results.
Or maybe I don't want to know the test results. I feel better, so maybe I am better. Funny thing about canser is that the disease doesn't always make us feel as bad as the treatments do.
Last week I went to the doc for more blood tests (still no bone marrow results) and the blood tests didn't come back so great. I felt pretty good, and yet the tests weren't so hot. My platelets are dropping, I am more anemic, and my white blood cells are rising. Wild combo. I'm sure I need to stick to the raw food and green drinks more, and less Cheetos. (yes, I'm a heathen who ate some cheetos in a fit of depression what can I say.)
And my blood pressure was 'too low' if there is such a thing. (Cheetos may help aye?) The docs kept taking my blood pressure over and over and asking me if I felt light headed. My response, "Well... you have taken my blood pressure three times in the last 5 minutes. I think all the blood in my body is in my right elbow now." The docs then suggested they cut back on my blood pressure medicine because it was too low. I reminded them that I am not taking any blood pressure medicine. Now what. Their suggestion.... try not to pass out. Ok, no problem.
So for the past week I have been actively trying to NOT pass out. How does one do that you ask? Well I don't know and they didn't tell me. So far so good. To say the least I am wearing my seat belt all the time now. I suggest you do the same if I'm on the road.
The bone marrow doc and his team are really nice and funny. After all the poking and prodding he suggested that I work on my fatigue and bone pain with more exercise. Ok, I am happy to do so, but time is short these days with work, kid, laundry, cleaning, dog, grocery shopping, and raw food preparation. I am working on more exercise so I can be ready for any potential bone marrow transplants that may come my way. ugh. The doc said, "think of it like training for the Olympics. Be ready for the race of your life." I think he meant 'race for my life' but you get the idea. I always thought Olympic folks trained all day. I really can't keep up now, but I suppose training will help structure my life even more. yeah.
The insurance company has denied my 'harvest and hold' of my own bone marrow/stem cells if I get to remisssion. But, the insurance company has approved a bone marrow transplant from an unrelated donor. It's very confusing. Good news is that somewhere in the world there are two potential matches for my genes. Wierd concept considering that my own kinfolk aren't matches so far, but a stranger somewhere in the world has my genes. Perhaps my dad has some explaining to do? hummmm. Just kidding Dad.
I realize that finding potential matches is a good thing. Now the bone marrow 'team' has to confirm that the potential donors are still alive (always a good start) and if there is any new information since they registered as a donor. It's an expensive process, relative to say a new mercedes. But it is the race for my life. Mind you, they haven't confirmed at least to me that this transplant is necessary yet.
Perhaps that's why I'm nervous. I don't have any proof that the medicine is working. I don't know how long it will work even if it is working. I know that my wierd translocation is not as 'treatable' as regular CML. But truthfully at this point, I don't know what I know and don't know any more. Confused? Welcome to the party.
Speaking of party... in the middle of all the medical marvels, Lili and I had some of her friends and kinfolk over to our house for a mini 15 birthday party. It is a traditional Mexican 15 party complete with fancy dress, big flowers, and a crown for Lili. (Hey, when do I get a crown?) Melody made the cake, friends took photos, and we hung out in the back yard with some dancing and lots of smiles. It was a great day and a great way to remember life happens EVERY day, even on days when the test results don't come back.
God, please send patience, not tests for patience. And, God while you're sending stuff, please send an Olympic trainer/housekeeper/raw food chef/comic/sensitive but masculine (not gay and not married) man to keep me on track and smiling. I'm tired and I think I've decided to not have canser anymore as it's really cramping my style.
What say you? Comments anyone?
Lots of love,
PS. Bone marrow tests should be back by the 26th of March. Only 10 more days of waiting.
PSS. Yes, the 'surprise, surprise' is a reference to Gomer Pyle.
Tuesday, February 26, 2008
It's sad I'm not heading to either grandmother's house today for a couple of reasons: one... is that they both are enjoying a garden somewhere in heaven about now, and two... I'm headed to the hospital in a few minutes for a long day of tests including a bone marrow biopsy.
Yep.... it's needle time. Let me just say, the word 'needle' isn't sufficient to describe something that can go through my entire 'backside' and puncture bone. I digress.
Today is the 'three month visit' to check that the medicine is really working. Hopefully the number of "Philadelphia +" cells is dropping down towards zero from 100%. I'd take a big ZERO on this test! If I hit zero, which is unlikely, I am treating myself to a big bowl of mac and cheese! I know... the refined tastes and cravings of a southern girl.
Yesterday was so frustrating because I hit so many walls and lost so much time. Files I worked on 'disappeared or crashed', I found out something I was working on was already updated by a teammate and distributed (but not to me) so I am wasting more time, and fights with insurance and mortgage companies continue to test my patience. I feel like I am crawling through waist high mud and getting no where fast. It's very discouraging and not the attitude I wanted to have going into this day of tests.
What I had hoped for was a feeling of accomplishment under duress, calm in the midst of the storm, confidence in the face of uncertainty. Let's just say I don't have any of that this morning. I would rather stay here in bed with the dog all nestled in beside me and sleep the day away. I ache already with bone pain, I have fever, I'm so frustrated and feel unproductive in every way. ugh.
It's really time to go, and of course who wants to be late for this date!
Thursday, February 21, 2008
Here in Houston the weather has been a bit damp and cold at times. It reminds me of when I lived in London. Only difference is now I really 'feel' the cold and damp. It's not age (ok maybe) because I ache in the same areas I get the CML bone pain (hip and upper leg). Other CML patients say they ache there too as that is where the 'action' occurs fighting the leukemia.
While I feel better, I do seem to have a fever most days. The fever isn't high enough to go to the hospital as it stays just below 100.5. However, I did have the up and down fever for 10 days and last Friday went to the hospital after talking with the research nurse. All the xrays and tests turned out well. In fact my blood levels are 'almost perfect.' The PA (a different one than the kale day) was impressed that the levels were so good. We talked about the 80% raw food etc. and she asked lots of questions. In addition to all that blood goodness, I lost 5 more pounds since the last hospital visit. Seems nuts and greens agree with me.
Each day I have a little bit more energy. It's like the sunlight, as we gain a few more minutes each day, I gain a few more minutes of energy. We even went to the movies this week! Staying up until 9pm has been a stretch for me for some time, but I am staying up as late as maybe a seventh grader now. haha.
Lili and I have shed more than a few tears in the past few weeks. Sometimes we don't talk about cancer at all, but some days it's everywhere. Lili struggles with her prayers that don't get answered. My response was "Don't feel lonely on that one. I don't know anyone who handles unanswered prayers well." We went on to discuss the differences between God and "Santa Claus." Seems obvious I know, but the concept of God as a dispenser of answers to prayers needed some attention.
Lili asked "If it's important to pray, and prayer changes things, then why are my prayers not answered?" My first response was "who knows?" Then I remembered that I am the parent and should be 'helping' with this dilemna. As Lili recounted many of her prayer requests and how many haven't occured, we both cried. There wasn't much I could say about 'why God seems to answer some prayers and not others.' I quipped it was something about a parent's perogative. She didn't understand and frankly I don't either. Perhaps that's one of those questions we get to ask the 'Big Guy' when we are hanging out in the afterlife?
I did try to explain that we all bear the consequences of our own actions, as well as the decisions and actions of others--even people many generations ago. (See environmental damage, or Middle East conflict for more evidence on that topic.) As we went through some of Lili's 'unanswered prayers' I tried to link what happened to her to the actions of many people. Then trying to explain 'free agency' and the power to choose we talked about how God gives us the ability to make decisions for ourselves as individuals and as communities. Sometimes the 'rights' afforded humans in different countries don't recognize our God given freedoms and responsiblities. Nevertheless, we still bear the burden of freedom of our own mind and our own decisions. Lili and I cried again over all she has lost and endured due to the unwise decisions of others. She is having a hard time with how to focus on the future realizing that everything, and everyone, can leave in a moment. She says she thinks it's unfair for her new mom (me) to have cancer and maybe not be around. What's a mom supposed to say to that?
My response to the past few weeks of 'learning with Lili' has been to try and focus on what can I do today to heal relationships, mend hearts, and create peacefulness and calm. Some days I totally suck at it. Still Lili and I keep trying to deepen our friendships, clean out our home and our lives of things that distract us from what is really important... our relationships with others.
Living life to the fullest takes courage and I think more than a few tears from time to time. Truthfully, until recently I only seemed to really cry with just one of my friends and he isn't available for my crying jags now. I am hoping that the tears of the past few weeks turn winter into spring and pain into laughter.
We keep praying and trying...
Thursday, February 7, 2008
- As we approach Valentine's day that quote could mean anything. Alas, it ain't so. I chose that quote because my PCR results are down (which is good), but my fever is up (100).
- My PCR number is 3.5 and not the 0.000000 I had hoped. My previous PCR number was 35+, so I thought a 3.5 sounded pretty good. Then the PA said, "well a one log (one decimal place) reduction is the margin of error in this test." So, that means I may not have had any reduction at all if the test is just wacky. It's all about the trends or movements in the tests. I have a bone marrow biopsy/aspiration and PCR in three weeks. We will know more when those results come back.
- The other blood markers are good. Thank you dark green veggies and vitamins.
- During the past week I have been very sick to my stomach in the middle of the night. The side effect is odd since I don't think I had it during the first go round with chemo. However, the acupuncture seems to be helping with the nausea and fatigue. Now I need something to knock out the fever again. Blech. I am tired of being tired.
- I am grateful for the medicines and the support. I am just not loving the isolation that comes with being so tired. Some days I can do what the 'unsick' folks do, but then I pay for it the next day when I can't do anything. I want to go out and do things so I can be with people. When I'm out, I don't want to look sick or be sick. The kickback comes when I am useless later from being overtired. Cancer sucks. I think I will choose not to have it.
- In other news, I spent the morning on the phone with the insurance company going over outstanding bills (about $30,000 worth). I have been approved for the bone marrow transplant per the insurance comapny anyway. They agreed to reiew all the 'not approved' charges and get back to me. So far it's good news and I will take it as a win for today (knock wood).
- There are lots of good things happening. We received some great cards, emails and donations. We are cleaning out the closets, scrubbing down the house, and getting rid of tons of stuff. I want to feel good about coming home and having a peaceful space for me and Lili. As long as there are so many things that need to be done/fixed/repaired, I feel torn as to what to do next. Most of the time I just finish making dinner and go to bed. I am better, but I feel like I'm missing out on the life I really wanted. More on that topic later.
Don't forget to 'speak out' and leave a comment!
Thursday, January 31, 2008
Two months on chemo. It's a milestone, only problem is I'm still not sure of where this road leads. On Wednesday I took another PCR test that tracks the CML at the DNA level. The clinical trial folks want to know if the free meds I’m getting are making an impact.
On a road trip I am one of those people who set the trip odometer, count the miles to my destination and make estimates for reaching certain goals/towns by a certain time. Don't think for a moment that this means I am an on time person (as most everyone reading this knows already).
Nevertheless I am a constant counter. Lili and I play 'overs and unders.' I pick a time I think we will arrive and she can take ‘over’ or ‘under.’ Rules say I must obey speed limits (a new rule) and not sway the results. We like checking the mile markers and updating our estimates (bets). It’s not a race, but we seem to find comfort and fun in knowing where we are in the journey at any given moment.
Grades are an evaluation of how much a student mastering all the coursework. Tests indicate the progress of mastery, or do they? I ‘mastered’ several subjects in college, but I’d be hard pressed to pass any of those tests now. Perhaps I was smarter in the 1980’s. Some classes I really loved and thus devoured the books, but even so my grades most often didn’t reflect my mastery of the subject. At the time I would respond by saying I didn’t master the opinions the professor wanted, but I knew the info. My bravado was surely a survival instinct under the heat of competition from very well educated classmates.
In the case of cancer, even with tons of test results I am not sure where I am at any given moment. And how do I measure myself and success vs. cancer? How can I calculate my scores versus the competition? Success of course would be a total disappearance of the disease. To be 100% cancer free. Only problem is, medical science says that’s not really possible. For a competitive gal, that translates to “the best you can expect is a C”. A prognosis of 6 years is supposed to sound good. It really doesn’t.
Several friends and family are reaching age milestones this year. I am thrilled for them since age milestones mean they reached a coveted goal – another year of life. But like my college grades, I realized that the passing of time may not be an indication of mastery, or a life well lived. Birthdays don’t count the memories, the laughter and silliness of living. Nor do they count the sleepless nights of lonely or tears of worry.
Even among cancer blogs, I started to mentally note the number of visitors to their sites (vs. mine of course). And, I began comparing the volume of comments on their entries to the number of comments on mine. I’m starting to think measurement and comparison is a form of perverse addiction akin to GPA’s, big houses, trophy spouses, and well… body part size comparisons. (I think you know what I’m talking about…)
In a moment, I was transformed from Rhonda, to Rhonda with cancer. It’s as if the odometer is spinning and flashing, and all the road signs are in some technical language I don’t understand. My ‘life’ maps all seem out of date. Everything has changed, but not in one of the many ways I had hoped. Now is the season of rewriting, recycling, or getting rid of my ‘life goals’ and just being.
I promise to keep everyone posted on the test results and new goals. How about ya’ll keep me posted on the measurements of your life? The comment section awaits…
PS. In case you are counting, this entry is 644 words.
Wednesday, January 23, 2008
My accupuncture visit was great. She focused more and more on the kidney and liver functioning. The chemo takes it's toll on the body in so many ways and the kidneys and liver take the brunt of the blow.
The blood draws and exam last Friday went well. The physician assistant said the blood levels looked good. My view is that they are great by comparison to the first round of chemo. At 10 days into treatment last time I lost 5 points of my hemoglobin count--going from high normal to low (9). This time I lost .5 which sounds great, as I am just below normal with a count of 11.
I suggested to the physician's assistant that it could be because of the vitamins I'm taking, juicing, and that I eat an entire bunch of kale EVERY day. Her reply was, "well I know the kale farmers are happy about it." Ugh. She hinted that this is just what happens with the medicine and the body adjusts to the meds eventually. She said it probably would have happened with or without the kale. Really? I'll leave you to guess my response. Ok, I didn't say it, but yes, I thought it.
Nevertheless, my kidneys and liver still need help, but they are doing ok. Not eating meat and only one meal with cooked food per day is helping but it may not be enough. As I become more adjusted to the raw food and juicing I suspect it will be easier to do it more. When I'm out with friends, or tired, I find that I am most tempted to eat crappy stuff. Working on getting more 'to go snacks' just in case there isn't much on the menu, and to keep me from eating fries!
Doing more research and found out that CML has been linked to exposure to chlorine in the water and mercury fillings in my teeth. Great news aye? So, with benzene, chlorine, flouride, and mercury in my system every day as a child... it's no wonder my DNA 'flipped out.'
I am confident that we will find a way to reverse this disease. I know that the medical world is wroking hard to find drugs to help. Their efforts have made an enormous difference in the world of CML. In addition, I plan on doing lots more research, removing my fillings, and getting a house water filter. No pain, no gain right?
Most of the doctors I've met, even at MDAnderson, don't seem to take a comprehensive view of health. I had an infection around both eyes last week ( looked like alligator skin and puffy too... very attractive I must say). The dermatologist and the leukemia folks didn't agree on treatment. It took a while to find middle ground, but it wasn't because they were talking to one another. It was because I suggested a compromise and then waited to check it out with both sets of doctors.
I was also scheduled to see the social worker for the bone marrow transplant (which I don't really want to consider but I'm keeping an open mind). The social worker needs to confirm that I can mentally handle being 'out of commission for more than 100 days, and that I have caregivers lined up to be with me 24/7 for that entire time. I responded sure to both questions. That was a huge leap of faith as I haven't been out of commission for two days without getting a bit stir crazy. No doubt I will need to do some serious prayer time to ready myself for being still(ish) for more than 100 days. I could exercise and go out, but with a mask and gloves, etc. Sounds like fun. I don't even want to tell you about the graft vs. host disease details.
Again, I just hope that kale, kale, and more kale.... keeps me full of strong red blood cells to maintain energy. And with that energy I can find a way to circumvent the bone marrow transplant. Speaking of energy, I am limiting myself to only 6 hours in the office per day, and getting plenty of rest. Hard to manage all the responsibilities and a social life, but oh well. I don't want pneumonia again that's for sure!
So, please eat your kale, drink your fresh juices, take your vitamins, and exercise. And most important...don't forget to love, love, love! There's no such thing as getting, or giving, too much love.
Happy "I love you Wednesday" !
Wednesday, January 16, 2008
It's all about the numbers. Or it seems that way.
The new year started off quiet and I was recovering from what turned out to be 'pneumonia.' After 10 days off the chemo, I was deemed strong enough to restart the meds. My numbers were up. By the tone in the doc's voice I gathered that was a good thing. Turns out my RBC and WBC were both back to normal numbers. So, my blood was now ready to be bombarded with the chemo once again. I was well enough to be made sick so that I could be 'better.' It's so confusing. This disease, CML, doesn't have a cure other than the bone marrow transplant (BMT). So, all the meds are to keep me alive not cure me. Feeling bad is the result of the medicine not the disease at this stage. Did I mention it's confusing?
This 'chemo' time around I am really working hard to consume LOTS of raw dark green vegetables, take my vitamins, exercise, rest, drink the special teas, take accupuncture, go to the chiropractor, etc. Of course doing all that seems like another full time job! I can't keep up with the job I have, but I'm trying to get caught up.
For the first week I had lots more energy, no headache like before, and I was able to go to work every day and a Saturday too! Then, the fever and severe bone pain was back. I missed going into the office today. I am so bummed. Acutally I am super pissed off.
Each day at lunch I juiced carrots, celery, cucumber and apple. I ate an entire bunch of kale too! It was good, or should I say I got used to it. Nevertheless, I wanted it to work and keep me back on a 'normal' schedule rather than at home trying to decide which painkiller to use. As each day passes I feel like I'm losing time, hours, minutes, missing deadlines, lost opportunities.
Please don't get me wrong, I am so very thankful for everyones emails, comments, phone calls, donations, etc. Lili and I are continually amazed and thankful for everyone's generosity.
I'm just angry at the loss of time. CML is faceless -- without an xray to show the problem. It's just numbers on reports (an ENTIRE binder full in fact). Some of the DNA testing is in nothing less than Aramaic or cave drawings, and I have given up on even trying to decipher them now. I'll just ask the docs "Are we there yet?"
In the meantime (and I do mean "MEANtime") I will continue to eat raw greens, and all things veggie. Perhaps I will need to come to grips with the new CML 'numbers game' and make peace with it. I don't like playing this numbers game, but I suppose we are all subject to a life of counting days. Going forward I will just have to make the days count.