Seasons of Firsts

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"...

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...

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...

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...

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

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.