IT'S A PERFECT DAY... with Cancer?

Cancer: Game? Holiday? or ...Just Life

2009-11-28T21:31:00.009-06:00

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.

How Long's It Been?

2009-02-12T20:07:00.012-06:00

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,
Rhonda

Gimme Some Sugar!!!

2008-10-28T18:41:00.005-05:00

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

Kate runs LLS Marathon for ME!

2008-10-18T08:19:00.006-05:00

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:

http://pages.teamintraining.org/nca/nikesf08/klangbein

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:

http://pages.teamintraining.org/nca/nikesf08/klangbein

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

Cancer changes everything...

2008-09-25T21:04:00.006-05:00

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.

Six Months Already?

2008-05-31T13:52:00.006-05:00

As of the 27th of May I have been taking chemo for six months.

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,
Rhonda

Adventures, Celebrations and Test Results

2008-05-01T19:03:00.007-05:00

It's been a month or more since I have written. Seems as things get back to a new 'normal' I have less time, but more to report. My goal is to blog more and dust less! So when you come to visit know that the dust in my house is because I love you and want to communicate more.

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.

Love,
Rhonda, Lili and Daisy

RESULTS ARE IN (ok well 1/2 of them)

2008-03-20T08:31:00.004-05:00

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,
Rhonda

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

Surprise, Surprise

2008-03-16T22:14:00.004-05:00

It's me. It's been almost three weeks, and I'm sorry I've been so out of touch. Lots going on. Some of it really great, some not so great, and some... well... some I just don't know because the test results are not in yet.

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,

Rhonda

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.

Over the river and through the woods...

2008-02-26T06:20:00.002-06:00

Ok, not going to my grandmothers house today, but isn't that a nice thought?

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!

Feeling Everything

2008-02-21T08:22:00.003-06:00

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...

My Bucket List...

2008-02-07T19:59:00.000-06:00

Come on, you knew it was coming. As soon as I get a chance to go to the movies I want to see the movie "The Bucket List." It's about two guys living out the things they want to do before they kick the bucket. It stars Jack Nicholson and Morgan Freeman. How I would love to have dinner with those two guys!

Anyway, I have always had a list of things I wanted to do in my life. Several years ago while on a trip to Amsterdam I made such a list. I found that little journal recently and many of the items remain undone. There may be a space limit on a blog, so I will just share a few items with you.

1) Be a guest on the Mike Douglas show, or the Tonight show with Johnny Carson. Now I suppose it would be Oprah?

2) Make a movie of my life, but first live a life captivating enough to make into a movie!

3) Design my own home that is very comfy for big partys and small family dinners, and has a 'dishwasher' and a 'walk in closet.'

4) Be in love for at least four seasons (consecutive seasons would be nice)

5) Have lots of kids (or two because college costs so much)

6) Create a place to be creative... a studio filled with light and space to make stuff

7) Write a book

8) Meet Jonathan Winters and Robin Williams because they make me laugh till I cry

9) Have an amazing flower garden with a hammock in the middle of it

10) Create 'safe havens' for kids in dangerous neighborhoods (like the Power House in Baltimore)

11) Provide micro loans, or project lending to single parent families trying to create businesses

12) Bring peace to the Middle East (ok... so I've had that goal for awhile, but I had a hard time with Hebrew and Arabic)

13) Have someone ask me out on a real date for Valentine's Day

14) Go to a live concert once a month for life! Wow, can you imagine?

15) Go to a yoga, vegan spa in some place really amazing

16) Attend Sundance Film Festival and have dinner with Robert Redford (I didn't say marry him, just dinner. Don't be jealous.)

17) Be the Ambassador to the 'Inner Cities' of the United States

18) Fund music programs in poor neighborhoods

19) Sponsor a team of big brains to design cars that don't need ANY gas (yes, I do live in Texas at the moment)

20) Meet a man who really loves and cherishs me

21) Take photographs around the world of ordinary people doing amazing things at regular jobs

22) Collect the sacred stories and soul wisdom of regular folks

23) Create a bio dynamic farm/ranch with a big garden, fruit trees, happy animals and lots of space for city kids to come visit.

24) Be beautiful in every way

25) Get married to a guy who loves me and my family, and wants to have fun growing old together

26) Be debt free

27) Write and produce a play

28) Produce a huge concert that inspires people to VOTE

29) Write a song that makes millions of dollars to plant more trees in struggling neighborhoods

30) Have enough time each day to call and check in on each person in my family (whew that's a phone bill!)

31) Teach geography to kids and make it FUN!

32) See someone being born

33) Sail in New Zealand

34) Make my own paper

35) Watch the sun rise and set on all the continents

36) Make out at the movies

37) Run/walk a marathon (Geez, and I'm tired just thinking about it)

38) Preach to an "Amen and Hallelujah" congregation

39) Really learn how to forgive and how to accept forgiveness

40) Reach my goal weight of 170 pounds

41) Make a labyrinth

42) Grow my own avocado tree (come on now, you wish you had thought of that one)

43) Learn to dance (not the white girl kind, the real rhythm kind)

44) Sing the blues with the queens of the blues (too many to name, but they know who they are)

45) Have $100 a day to just give away to someone who looks like they could use the surprise

46) Design a restaurant that makes folks want to eat healthy

47) Learn how to be an Imagineer (ala the Disney Imagineers)

48) Create old folks homes that are so cool they soothe the soul of the aged and inspire younger generations to visit. (If I could just rid the facilities of that bleach/urine smell it would be a huge plus)

49) Inspire Americans to adopt older children who live here in America

50) Insure that every child has a safe place to call home

Well that's the first 50 goals. I sure hope this chemo stuff works as I have lots more dreams of journeys and adventures.

Send me your bucket list! Email me at sionito@aol.com.

Peace baby... it looks good on everybody.

Love,

Rhonda

I went down, down, down...

2008-02-07T07:14:00.000-06:00

...And The Flames Went Higher

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!

Tests, Grades, and Milestones…

2008-01-31T06:39:00.000-06:00

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.

Kale, Kale, and more Kale

2008-01-23T11:51:00.000-06:00

The MDA doctor visit last week went fine. My high school English teacher said "fine" was a four letter word that meant nothing. Perhaps it fits in this circumstance. The visit was uneventful but I suppose that's a good thing.

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" !

Happy '08 -- all #s all the time

2008-01-16T18:53:00.000-06:00

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.

Seasons of Firsts

2007-12-31T21:55:00.000-06:00

It's 10pm on New Year's eve. It's been a very long couple of weeks with my first trip to the emergency room, the holidays, a week off chemo, and a lung infection.

On a good note, our Christmas was great. Spent time with family and friends, celebrated life with joy in our hearts, and hope for a future filled with love and laughter. Ok, ok, mostly I slept through the holidays, but the parts where I was awake... they were great.

Truthfully, I have had some good days, and some bad days, but that's nothing new I guess.

One first is that I rode in the 'old sick person' mechanical cart at the store. It wasn't as fun as Lili and I thought it would be, but it did help me have enough energy to get some things done! It is difficult to get more and more tired no matter how much I rest. There are so many things that need to be done during the holidays, and I didn't think riding in a store go cart and wearing a face mask to shop would be some of this year's 'firsts.'

Other firsts include spending our first Christmas with Daisy our cool dog, and celebrating new years at camp sionito. My sister Dixie and I drove Lili and our cousin Victoria up to the hill country for a retreat. It has been lovely to enjoy a change of scenery and still get naps, read books, and just hang out. Daisy, our dog, has loved the little cabin and investigating all the new sounds and animals of the country. While I have spent a new year's with my sister, it's probably been over 35 years since it happened. We mostly have discussed if we think we can stay awake until midnight.

The other firsts include... my first Christmas with cancer, my first new year's with cancer, my first time to really evaluate my new year's resolutions without the word diet.

It's been difficult to feel bad physically, but the real pain is mental. The past two weeks I have written a million blog entries in my mind, but they never seem to make it to the computer/page. It is just too much sometimes to see it all in black and white, you know, the words cancer and me/Rhonda in the same sentence seem impossible, yet very real.

A good friend of mine has endured amazing losses in her short life. Some of her losses seem impossible for me to comprehend. I asked her one time how she faced some of her darkest days, she replied with "I never say, Why me? I only say, Why not me?" It seemed logical when she said it; noble and strong, yet human and real. In the past two months I have said, "Why not me?" about a million times. It soothes me some of the time and other times I just want to scream... "Hey... I have lots of things to do and I don't have time to be sick."

Recently I read some writings from a caregiver for a cancer patient. She was commenting on how many times she heard people say, "If you have your health you have everything." After watching her husband go through difficult battles with cancer, she said, "NO, it's wrong. It's not if you have your health you have everything." I was stunned when I read her comment, as health was always one of those things people wished one another at holiday time and new years. I probably had even said those exact words myself and meant it ("If you have your health you have everything.")

I went on to read her explanation as to why she thought that statement wasn't true. Paraphrasing, she said people have everything when they HAVE cancer and they HAVE someone who loves them in the midst of the struggle. If you have someone who still wants to hold hands, to love you, to share the journey with all it's bumps and turns, THEN you have everything. I was speechless. I agree with her, 'having it all' has a new meaning now.

It's not IF we encounter loss and struggle, it's WHEN. It's not good fortune to avoid all hurt and pain. Life always has, and always will, include illness, struggle, loss, and anguish. We have everything when we are someone's beloved and have a companion for the journey.

While I am so thankful to be surrounded by the love of Lili, my family and my friends, I am still seeking my beloved for this life's journey. I still pray for 1000's of healthy days to share with all of you, but even more I pray my beloved finds me so we can enjoy a whole new season of firsts.

'To everything there is a time and a season.' Make the season bright and live some 'fantastic firsts' this new year.

PS. The photo is of my first Christmas 1964. My sibs and I are getting our first glimpse of what Santa brought! I'm the little one with the 'I forgot my dentures look.'

Let me explain "It's a perfect day"...

2007-12-18T18:53:00.000-06:00

Now that I have 'caught you up to date' on some of the facts, I can go back and talk about some of the experience.

When I was waiting to hear the results of the first 'FISH' test to confirm the CML, I decided to take the day off because I was using all my energy to stay sane (relatively anyway). The 'FISH' test is a fancy DNA test that would 'prove' the translocation (swapping) of some of my DNA. If my DNA showed that 'swap' I would have CML, if it didn't... well who knows they really didn't give me any options.

Up until that day, I had been working and even met a deadline or two. But, that day I was just in slow motion being deliberate about 'not losing my mind' while waiting. The first hemo doc said they would have the results on Monday or Tuesday. It was Tuesday so there should be no reason the results wouldn't be in (or so said the nurse).

All day I kept staring at the phone and willing it to ring. I imagined someone on the other line saying something like this, "Ms. Radcliff (because they always get my name wrong), we are calling to tell you that your doctors are crazy and you don't have CML." They would then explain that I ate some strange fruit when I was in Brazil and that is what causes these 'false positives.' That was just one of about... a million different scenarios that I developed each hour while waiting on the doctor to call me.

Around noon I was driving to meet my friend Kenneth at a coffee shop for some lunch. On the way over I noticed that the rainy cold gray morning had given way to a cloudless crystal blue sky. I thought of something I said years ago when another friend asked me to describe 'a perfect day.' My reply was 'a day that unfolds as it is meant to unfold, with some rain and some shine, but each moment appreciated and experienced to the fullest.' At that point I just reminded myself that whatever the test results are, my wanting it to be different wasn't going to change anything. My day was going to be perfect, if I chose to see it that way.

When I say 'perfect' I don't mean 'good' or 'what I want.' My results could (and did) say I have CML and that is consdered a bad result. However, without the test I would still have CML. I just wouldn't have known about it. The test is a reflection of the reality that already exists. Many many things in my life have not been according to my choosing. It's the same for each of us. My only 'control' if you will, is my response to what actually happens. I don't have to like it but I damn sure better have the facts to deal with it.

If I chose to have a 'perfect day' perhaps I could get it! I can't change the results, but I can change how I cope with it, how I choose to share the sacred story, and how I spend my only unrenewable resource... my time. I was going to have a perfect day. Period.

Kenneth and I had a great lunch. We shared stories of adoption, great love and great loss. I had a HUGE glass of red wine and Kenneth shared in the festivities with some fab lemonade (foreshadowing my current obsession with lemonade). The laptop made an appearance and we talking about the documentary possibilities. At some point, Kenneth asked me what I was telling myself to keep sane. I replied and said, "I tell myself it's a perfect day already. All I need to do is live it."

The day progressed without a call from the doctor. I had to really 'push' to get some results. Lili had her FIRST high school basketball game. She got a basket (of course that made the day perfect for sure). After the game on the way to a celebration dinner, the doctor called with the news. He immediately said he would refer me to MDA since it was an 'atypical' form of CML and he wanted MDA to confirm the diagnosis and the right course of treatment.

And so the sacred story continues.

Wishing you lots of perfect days with health, happiness, love, and a bit of rain now and then for good measure and green grass.

Love,
Rhonda

PS. Please comment if you have a chance. Lili and I read them all and enjoy hearing from each of you!

PSS. The photo is one Lili took on our vacation to San Franciso. It's her first time to be in the Pacific ocean. It was a 'rainy... yet sunny' perfect day we treasure.

I can't catch up...

2007-12-17T17:05:00.000-06:00

I had planned to write about the whole CML adventure... but I'm too tired. Instead, let me catch up to the present really fast with some bullets.

Got atypical CML diagnosis from first hemotologist. He referred me to MD Anderson

MD Anderson medically approved me and I got assigned to the chairman of the Leukemia department

Insurance, after about 1000 phone calls, faxes and millions of prayers agreed to refer me to MD Anderson (MDA). The insurance has yet to tell me what percentage of the bills they will pay

First appointment with MDA was a long long day and included the first of many bone marrow biopsies. It sucked, but wasn't as bad as I thought it would be.

Met doc a week later and got the confirmation it's CML and got into a trial for Sprycel (dasatinib), a second generation drug like Gleevec. Supposedly 300 times more powerful and less side effects (more on that later).

First week of the meds I was still working but with a monster headache and some slight nausea. Kinda felt like a hangover I guess.

Second week on the meds was worse, but I met the bone marrow transplant team and they are great. Only will have a transplant if the chemo drugs don't do the trick.

Trying to find bone marrow match. IF YOU ARE INTERESTED IN BEING A DONOR LET ME KNOW, or check out http://www.marrow.org/.

Swelling became a problem and the bone pain from the chemo doing its work began to interfere with work.

Third week of meds I had 99 or 100 degree temp and was in bed almost the whole week.

Blood levels (white blood count) are dropping fast. Part of that is good news and part of that can be a problem since dropping the red blood count makes me feel like I can't get enough air and getting to the bathroom is like hiking a mountain.

Family and friends have been very very supportive.
A friend who is a filmmaker is doing a documentary about our journey with CML.
I spoke with the mayor of Houston about my diagnosis and how I believe it is caused by benzene. Houston has the worst levels of benzene in the country, and I grew up in one of the county's worst areas for benzene and other deadly air pollutants.
The mayor's office called and asked me to speak about my cancer at an EPA hearing on refinery risks. I did. The Houston Chronicle took a lot of notes and photos, but not much more than a mention as of yet.

Lili is doing great and is very helpful. She did have a few meltdowns at school, but we talked through some of our fears and decided to focus on the right now and have as much fun as possible.

I conjured up enough energy to go to the Mother Daughter mass at Lili's school. It was lovely and Lili gave me the best letter ever.

We held a fundraiser for Lili's tuition and as of today I think we have all we need to pay off the school note for this year.

Daisy our dog has been especially attentive, and I think that she thinks she is healing me with every snuggle. Perhaps she is right.

Lots of folks have written, sent cards, donated money, called, and emailed. Lili and I both appreciated it and hope that you can continue to do so as we are encouraged by your support and interest in our lives.

Dana, a friend of ours, is helping coordinate some of the offers to help with some of our needs. You can email healingrhonda@aol.com if you are interested in coming over for dinner and hanging out, or perhaps handling a school pick up.

Whew...I think that's it for the moment.

At present, we are trying to get into the groove of the holidays. I preached at church on Sunday and Lili and I have enjoyed being out of the house and with friends and family. The only problem is that if I am up and about for 4 hours I am in bed for the entire rest of the day. It's not like we are much on watching tv and reading leads to sleep, so I am starting to feel more 'sluglike' every day.

Good news is that the swelling is down, I have decided to try to eat as much vegetarian and raw food as I have the energy to prepare/purchase. Docs say that my kidneys and liver are doing well with the chemo and handling all the fallout from the chemo doing its work. All I can say is it better be doing something other than just putting me to bed!

More news to come. My sister is coming into town for Christmas and Lili has her first finals of high school. I'm sure there will be more to share soon.

Love,

Rhonda

Denial...

2007-12-08T19:42:00.001-06:00

The time between the 'news' and the oncologist seemed to pass so VERY slow. It went a bit faster because when my sister got the news she jumped in her car and came over. Dixie, my sister lives in Arizona, so that was some drive. Everyone was against her driving, but she is the silent determined type. She also happens to be a hospice nurse. To say the least I am always happy to see her, but it always a bit scarey when the hospice nurse makes a housecall.... you gotta laugh once in while.

My sibs and sister in law came over and we went out to dinner and pass the time till the doctor visit. It was a surreal time as I had a deadline at work that week too. I kept going to work and trying to get things done, but accomplishing anything seemed to take more than the normal amount of effort. My mind wasn't my own anymore... the word 'cancer' seemed to be taking over my mind and every breath. It was a some point that week that I really understood the incidious nature of cancer. It doesn't kill you one cell at a time, it takes your minutes away 10 at a time. Even when I was feeling fine, I was letting cancer take my life because of the preoccupation.

That's when I decided to move from shock into denial.

It didn't last long because the oncologist confirmed the CML within a few minutes. He was very nice, but said he didn't think he needed a bone marrow test just a genetic test to confirm the CML. Since I wasn't thrilled with the idea of the bone marrow biopsy I didn't have to be convinced. The oncologist said "They have a great new medicine. It's almost a cure, but not quite. You just take this medicine, Gleevec, everyday and keep your CML in check. It hardly has any side effects." It kinda sounded like I would get a lifetime supply of aspirin and the C word would be kept at bay. Who could argue with that? The doc said this disease was not caused by anything I had ever done, eaten, not done, etc. He was clear that living near the plants and in NYC may have given me more access to benzene, but he didn't really address actual cause. He assured me that nothing I would do, including margaritas, was going to affect the disease. That qualified as good news at that point. I soon learned it wasn't true along with other things he said about the drugs.

The nurse came in to take the blood for THE test. Three vials and I would be joining the sibs for margaritas! My brother Danny and Dixie were telling funny stories about the first time they learned to take blood. I told my nurse that Dixie is a nurse and Danny was a paramedic. The nurse asked if Dixie was a nurse in Houston, I said no, she's a hospice nurse in Arizona. Then the nurse said, "Oh, we work with hospice ALL the time. They are great." The room went silent. Danny looked at the floor and Dixie held her breath. I finally said, "Really? You work with hospice ALL the time?" She realized what she said and started to backpedal a bit. Me and the sibs were laughing at this point. I just said that's what every patient wants to know that their doctor's office has frequent contact with hospice. Perhaps my next doctor doesn't have ANY contact with hospice because all their patients live to be 200... just like Lili's turtle idea!

We left the doctor's office and we proceeded to one of my favorite restaurants. The margaritas flowed and flowed. It was the best medicine around at the moment. Folks started to call and I relayed the information with as many jokes as possible to keep from falling apart with the sibs and at the local mexican place!

The oncologist said the results would be back by Monday or Tuesday of the next week. Almost a whole week of waiting. The days passed so very slow! I worked a lot to meet the deadline. We had fun with family at night. It went as fast as possible.

Every moment I could spare I researched CML. I read for a living doing legal research, so this was just a change of topic. All the websites for medical research and the FDA are already on my website favorites list. Within a couple of days I realized that taking Gleevec was not free from side effects. It was also not a sure thing that the medicine would keep the CML in remission as lots of folks seem to have 'drug failures.' Nothing good can come from something called a drug failure. I kept researching and found that the team at MD Anderson treats hundreds of CML patients. My oncologist said he had 5.

My new goal were as follows:
1) prove that I didn't have CML, but some wierd reaction to taking progesterone for endometriosis.
2) to find an herb or tea that would treat CML to avoid chemotherapy.
3) to get into MD Anderson so that I would have some of the world's best working on the task.
4) find a way to change my insurance to the PPO to have coverage at MD Anderson.
5) find a husband, since getting married would open up my access to change the insurance policy.

All these goals were in addition to the usual stuff that needs to be done. No rest for the wicked.

I made calls to cousins, friends, friends of friends to gather more information and make more headway on my 'goals.' Making proposals for marriage seemed like an odd thing to do 5 at a time, but hey... I needed statistics on my side in every way.

Denial was firmly in place, but I kept moving gathering information on the disease and all the variations on the theme of CML. I don't think I slept a whole night through and each morning when I did wake up I kept thinking it would be a mistake and a dream.

Lili told me one day, "I think this is all a bad dream, but the wierd part is that you seem to be having the same dream at the same time." I couldn't agree more.

More to come.... I will catch up to the present soon.

PS. The little girl in the photo is my great niece, Emalyn. In my mind I am constantly sticking my tongue out at cancer!

Telling the Story...

2007-12-04T21:12:00.000-06:00

It's been a month now, but it's still hard to tell people.

Since the first day I have told lots of people, in a variety of different ways. Some ways work better with some folks, and not so well with others. I am hopefully getting better at reading the situations. Perhaps it's like giving a person a shot, and I am figuring out how to do it fast with the least pain. I guess you will have to ask my friends and family to rate my work!

In the first few days I told some folks but it was awkward because I didn't know much and I was firmly in denial.

When I left the doctors office I was driving to see my friend's baby and I told my mother. I apologized first. For the past 20 years when I had bad news I would call this one friend. He would talk me through the shock stage and so by the time I called my mother I was calmer, rational and I had a plan in place. This time... the leukemia time... I didn't talk to him. So, I had to tell my mother without the benefit of a buffer. No calm, no logic, just tears and the basic words "Mom, they say I have leukemia." Mom responded with the right words of comfort and said she wished she could be there to hug me at that moment. It was a Friday afternoon and traffic time coming so I asked her not to drive while upset and in traffic. She agreed, but I know it was hard. She then distracted me with a story about her bills and taxes. It was like her to be practical and there really wasn't much else to say at that point because we didn't know what kind of leukemia or any details. She told me later she fell apart when she got off the phone. That is what I was worried about. It sucks to lose a buffer.

Told my sister the nurse, and she said she would call my two brothers. I called them both after I held my friends baby and collected myself to a degree. Truth be told, I wasn't so sure about telling everyone because I felt like this was a mistake and it would be embarassing if it turned out to be false. That denial was a fleeting hope and it mixed with my prayer that this was all a bad dream.

Once I spoke with my brothers who were supportive and full of detailed questions, I knew I would be facing my biggest challenge... telling my daughter Lili. Several folks had asked if I was going to tell Lili anything before seeing the oncologist and confirming the type, etc. The answer was always YES. Lili was going to be told on November 2nd, because she wouldn't forgive me if I handled it any other way.

Lili is adopted. She lived with her birth mother for 10 years, then in a foster home for 18 months. Lili has endured untold losses already in her short life. We have always said that telling the truth is the only way to have a strong family foundation of trust. Before coming to live with me, Lili has had her trust broken, her heart torn apart, her family life destroyed. The very last thing I would do to her is not answer her questions honestly. Besides Lili is vigilant about asking questions related to my health and wellbeing. Lili was going to ask me about the doctor visit when I picked her up. I had to figure out how to tell her, and I knew it would be in the car.

Sure enough Lili opened the back door to put her school bag in the car and her first words were "How did it go at the doctor?" I couldn't make my voice work. I was speechless. She just stared at me and crawled into the front seat. She asked me again. I finally just said it. "Lili, the doctor says they think I have leukemia." We both began to cry. I am still trying to drive as my logic has flown out the window. Lord knows I could have pulled over, but there seemed to be an urgency to get home. We were not on the freeway so we cried and talked all the way home.

I answered her questions as best I could. She wanted to know if I was going to die and leave her alone. I told her I didn't plan on it, but that each day when we say goodbye we don't ever really know if we get another day together. I said that someday I would die, but I hoped it would be long time from now. She said she wants me to be a turtle because turtles live about 200 years. Lili asked if I would lose my hair, and I said I had no idea. She wanted to know if I was going to be very sick and in the hospital, again I didn't have any information. Finally, I just said "I'm so sorry Lili. You don't deserve to have any more pain in your short childhood." Then, holding hands I began to joke around with her. Saying things like, "Lili, I'm sorry, it was bad enough that you have the fat mom, now you will have the sick mom too." We both giggled. I then told her I didn't think God would add bald to that mix as it seemed like too much already.

On the way home we talked honestly and laughed where we could. Over and over I told her how much I loved her and how I was sure that God brought us together to accomplish great things. Trying to hold it together and the car in the lane, I tried to reassure Lili that there were at least 99 people who loved her and who would never ever let anything happen to her even if something did happen to me. We laughed again because it used to be 'a 100 people' but we were on the outs with an old friend at the moment.

Lili has the gift of being able to share her sacred story. She can convey great emotion and tremendous pain with words. I am continually amazed at how she grasps the importance of forgiveness and maintaining an openness to others. Lili's ability to have an open heart that wants to share love and life is a testimony of God's infinate healing power. She is truly my inspiration to step out and try love again. The bible says... "a little child shall lead them."

And so goes my telling of the leukemia sacred story. Sometimes I work in the information between mundane requests kinda like 'subliminal information.' An example, "Sure we can go to the movies next Tuesday. I have leukemia. Would you like to go for pizza prior to the show?" People will say, "I think you just said you have leukemia. That can't be right." I agree with them.

Some folks say things like "You're kidding," or "Shut up," or "No way you eat organic." Again, I still find it hard to believe.

Lili and I start to come out of our daze as we reach the house a whole 10 minutes away. She asks if I told her Gran, my mom. Lili then asks about family members and friends who she thinks will want to know. Then Lili takes in a deep breath and asks, "Have you told CJ?" To which all I could do was cry. Lili knew I hadn't told her. Finally I say, "No, I needed to hold your hand before I can call her."

CJ's husband, Dan, had CML. Lili knew that Dan had leukemia and died after a couragous 9 month battle. We called that first night, and left a message for CJ to call us back. It was just too much to imagine that I would have to call her and tell her I had the same disease as Dan. I just couldn't believe it. About 4,000 people in the US get CML, what would be the likelihood that we would know two people with it.

Come to find out, my family would know FOUR people other than me who had CML. Who knew?

The sacred story continues and 'Full Blown DENIAL' sets in.

One Month Since the Big News

2007-12-02T09:58:00.000-06:00

On November 2, 2007, I went to the doctor's office to talk about my blood test and I thought we were going to talk about cholesterol or a UTI causing a high white blood count. At the most I thought it was a stop to the drug store for a 10 day round of something to stop an unknown infection.

Somehow I knew something was wrong when I heard my doctor take out my file from the door and just stand there. She wasn't talking to anyone, so I thought it was odd that she was just standing outside my door in silence. When the door opened she said,"I have bad news, we think it's leukemia." Genuinely I thought she was in the wrong room. Usually she starts off with "How's Lili?" My brain didn't wrap around the information, and all I could do was stare at her. What I noticed right away was how red her eyes were, and her face was sad. She seemed to be working hard at maintaining her professional calm. She comforted and assured me I would get treatment, and tole me there are all kinds of leukemia so perhaps I had one that would allow me to see several more decades.

Were we really hinting at prognosis already? The doctor didn't want me to leave until they sorted out my insurance and getting me to a hemotological oncologist. I couldn't even pronounce it much less believe that I needed to go to one. That was something sick people needed to do and I didn't feel bad, I was just tired. Maybe I needed more sleep and this blood thing would sort itself out. This had to be a dream, or a thick fog that would soon lift.

It's at the point they are trying to make my appointment that I realize I have an HMO and not a PPO. Seems like a small distinction, but it became the nightmare enhancer. I must have checked the wrong box on the insurance form. It didn't say HMO on my insurance card, this must be a mistake. The company was telling the doc's office that I had an HMO. That can't be right. My head is swimming in dark cold water and the doctor and people come in and out of the room talking about insurance, appointements, tests, a bone marrow biopsy or something.

My phone didn't have signal, so I checked my blackberry. The only think I could think of to do was to email the partner at my firm and tell him. He had asked that I let him know what happened with the tests. Surely he and I both didn't really think that it would be something like leukemia. That first short email prayer just said "they say it's leukemia." My boss immediately responded by saying to keep him informed and that he wanted to help. I think I exhaled for the first time upon seeing his email. It was just a few words, but they powerfully comforted me in the midst of the category 100 hurricane I was facing. At that point I said another short prayer saying "thanks" to God for helping find a work home that understood and was supportive.

It was odd that he was the first to know, but telling him could be done via blackberry and efficient words. Telling my family would be so much harder. How could I do it?
The prayers continued but in a one word short format. Mostly prayers like, "help," or "please," or "breathe."

Somehow the test got scheduled after lots of phone calls to my office, the insurance, etc. At first I just sat there and then the first tears showed up. It was when I thought of telling my daughter Lili. They said my bone marrow test would be on Wednesday... on "I love you Wednesday?"... no. I tried to explain "I love you Wednesday" to my doctor and I started crying. I couldn't go and have a test about cancer on a Wednesday. It was at that point I knew that my mind had completely checked out. Actually asking the doctor to change the appointment to a Friday was a stretch of logic. Did I really think that having a cancer test on a Friday would be less traumatic? My logical mind clicked back in and I agreed to the earlier Wednesday biopsy. Fear and logic are not a well suited pair. I must make a note of that for the future fight.

That's the very beginning of the story. The day continued by going to visit a long time friend in the hospital with a new baby. I wanted to hold the baby and feel that blessing of new life. The energy of a new baby would surely cure me, right? I cried holding him and for the first time realized that it was likely I may not see him grow up as had been the plan.

More of my saga to come. It's taken a month of living to gain the perspective of cancer to find the words. I will offer up more words soon.