A Thick Plot

So, New York, it is. We were on the phone today with Sergio Giralt, the Chief transplanter at Memorial Sloan Kettering and despite the huge logistical gymnastics to make this happen, I think the right thing for me to do is go there.  It's the best cancer hospital in the world. I should be there. 

He suggests a transplant that they do not do in the UK and anecdotally it seems the outcomes are better for people like me. I also feel that Marty has been right every step of the way, and I'm sticking with him and doing everything he says. They are also very likable people, and that helps.  They are menschy;
Mensch (מענטש) a Yiddish word that means "a person of integrity." A mensch is someone who is responsible, has a sense of right and wrong and is the sort of person other people look up to. In English, the word has come to mean "a good guy." 

I will need to be in New York for close to four months.  After the transplant, they want me to stay nearby for the 100 days. So THIS is the 100 Days and Beyond...

I'm most concerned about Andy and the kids, of course. The visiting back and forth, and the worrying. I don't want them to worry, but it's a pretty big deal when your mom needs to go to a hospital in another country. We thought of maybe taking them there for four months, but Jeez, they just moved here! And they've got their daddy here, and their dog and friends and school, where so many incredibly nice people have got our backs. 

Honestly, I'm a little worried about me. My sweet little family is my fuel. And I'll likely only see them for a week each month. And I've leaned so hard on all my friends, for THREE YEARS!!! And now I feel like I need them more than EVER. To be with me in New York. While I get my new cells and heal. My magical and devoted friends. I love you. I am a lucky person. 

So today, I got a little scared at the prospect of really having a transplant. Scared but also excited. So glad. My donor has been contacted again and the only schedule restraints they have is the last week of August and the first week of September. 

Dr. Giralt wants to see me in NY on July 12th. It's such a head-spinner that I don't even know, do I go and stay, do I go and come back and go again to start treatment? So much to be ironed out. And when I'm done with treatment but still hanging around in NY, where will I stay?  What will I feel like? The plot is getting thick!

I think of NY as a place with lots of healers in it. It's such a stressful town, people have perfected the art of de-stressing, healing, relaxing as best they can. It's what they do when they're not working, shopping or going out to eat.

I have also always loved the "Let's Get It Done!" attitude in NY. I'll definitely be plugging into that energy...In the meantime, thank you so much for all your prayers. I feel them and see them working.

Much love,

Dina

Just Love This Picture

And of course it reminds me of a song...
http://www.youtube.com/watch?v=VYhl-JTezwk

Talk with Marty

I was so nervous. But then we get on the phone with him and I almost immediately felt better. It was Andy, Susanne, Amal and me on the phone with him. I had some questions written down, that were really mostly Susanne's questions.  Most of them were in response to our conversation with Panos. Here's what they were:
After speaking with Panos, I learned that using Azacitadine like we did is not licensed to be used in that way in the UK. It's only because my insurance approved it that I could do it. Thank you Cigna and Andy for that...

So, what else ties the hands of the doctors in England? I knew he couldn't answer a question like that, but the giant question is, "Am I better off in NY?"  "Do transplant protocols differ in the states?"  I think as amazing as the National Health System in the UK is, even if you're using private insurance, the doctors are constrained by guidelines. For example, as Panos would like to do a FLAMSA transplant with me, Marty seemed to want to tailor-make a protocol that would be the right one for me.  But he did not want to say anything until we spoke with his head transplanter, Dr. Sergio Giralt. We've planned another conference call for Wednesday and Dr. Giralt will join us. 

Now, the Chief transplanter at The Royal Free Hospital where Panos practices here in London is a man named Steve McKinnon whom Marty knows well and respects.  It's possible that if Steve could follow what protocol Sergio recommends, maybe I could stay in London.  

Marty said when international patients come to Sloan Kettering he likes them to stay for three months. I would do that of course, but that's a lot to think about for my family. We've been through it all and are super strong because of it, but still, that's tough on a family. I hate it when Andy travels for a week! Me gone for three months? Yikes!  

I know all my USA girls are thinking YES YES YES DO IT!!!  I know they'd take great care of me. And I'll bet Sloan Kettering is amazing. Tons of complementary therapies. New York is probably the Mecca of complementary therapies because everyone's so stressed out.

So, as it stands, Marty said to recover from this recent round of chemotherapy. Have another biopsy in two weeks. We'll speak with Sergio. And things will become more and more clear.

I am so grateful for this second chance. Things were so dicey there for a moment. I feel like God put his arms around me and said, "Um, I don't think so. You're staying here. You've got stuff to do and I've got your back".  What's that cute little kid prayer? "God is good, God is great. Yay God!" 

Happy Dreams. 
Dina

https://www.youtube.com/watch?v=KbzcdG5FK3c

P.S. Click on this link. It's the incredible song "Have a Talk With God" by Stevie Wonder.

So Jittery

I've been wanting a transplant for so long and like Arpine said, sometimes you get nervous when you get what you've been asking for. It's true. Like when you wait nine months for a baby and then it arrives and you're all thumbs. But, just like with babies, it's one day at a time. 

We've scheduled a phone call with Marty for tomorrow. I'll be on the line with Andy, Susanne, and Amal. Susanne has lots of good questions. About FLAMSA, about RIC, about outcomes, and about Thiorizadine.  The docs don't seem to be behind this it's not been through any trials for cancer even though it has been an approved drug since 1978. 

Susanne thinks the doctors in England really have their hands tied and I should go to NY for a year.  The whole incident with the Azacytidine is a good example. Using it like I did, at Marty's suggestion, to take it for ten days, is not even licensed in England for that use. The only way I could do it was because my American health insurance approved it. 

Susanne also says that in the paper Panos sent us to read, with a FLAMSA transplant, the outcomes are the same whether you have 6% or 90% disease. So why did I do the Azacitadine? Why didn't I just go to transplant? Panos said that I can not do a RIC (reduced intensity) transplant even if my counts go less than 5% because in England it's required as well that you have perfect bloodwork (platelets etc...). He said it's true in the US too. So that's a question for Marty...

So what about the Thiorizadine? Do I just do it? Like next week? Just get some, find a psychiatrist to monitor me, and just do it? 

These are such giant huge jittery decisions. And just like when it was left up to us whether or not to do a transplant, it's now up to us whether I sneak in a trial drug, or go to another country for a year. It's clear that no one else can make these decisions for me. It sure is a shame I didn't go to medical school! 

As we all struggle to figure out what is right, I want you to know that it is not lost on me that I have the luxury of these choices. I have health insurance and money to go to another country if that is what seems the best. I have highly educated friends and a smart organized husband. I have a healthy donor waiting in the wings. Let's just be clear here, without all this, I would be dead. 

Could it be?

Amal and I met with Dr. Panos Kottaridis this evening. He came to the house and spent two hours discussing transplant and answered every other question under the sun. Amal took notes. Thank goodness. But, it seems that I'm rolling toward transplant. It will be in August. With Panos. At the Royal Free Hospital in London. Could it be?  

Each time I thought I was going to transplant in the past, I felt so PSYCHED! Ready to do it! Right now I feel like, "Whaaat? You want me to do whaaat?"  I think I'm just tired. This has been such an emotionally and physically giant run-around. I'm a bit stunned. But I'm quite determined to go into this strong strong strong. That is how I will spend my summer vacation: strengthening myself on every level. Physically, emotionally, spiritually. 

Speaking of...earlier today I met with two Michaels. One is a close friend of Andy's through work. He's a charming Englishman who moved to Greece as a young man to try his hand in the shipping business. There he met his wonderful Greek wife and they are one of the most life-embracing couples I've ever met. You just want to be around them because it's fun. 

Today Michael brought over a Greek Reiki healer named Michaelis. He believes in this man's power to heal because he has done so for a number of his friends and family members. It's so sweet he thought of me and went out of his way to arrange this. It was so interesting. Michaelis sort of examined or scanned me with his hands. The energy from his hands was HOT. He was totally able to pinpoint issues I've had in my body, including the exact painful spot where I had the fungal pneumonia. That's pretty amazing. If it works out that Michaelis can work on me, it would be such a luxury. He put me on the phone with a leukemia patient he had helped put into remission for a transplant. This guy didn't stop raving. He was so lovely too. He said, "You can do it. I have no doubt. And keep smiling". Pretty sweet. 

My support through Leukemia has been through my family and friends. It's only recently that other professionals have been coming into my life to help support me. A fabulous therapist, child therapist, massage therapist, now maybe reiki.  I'm such an alternative and complementary health advocate. I've gotten so sucked into all this chemo and doctors and hospitals, I'm so glad I'm finding the people and the energy to branch out. It makes me feel so much more like a whole person. Body, mind, spirit. 

This has been a big lesson in taking care of myself. I'm really impressed with people who take good care of themselves. It's a giant wake-up call. 
Off to sleep. Sweet dreams.
Dina xox

Keepin' On

Today is Day 9 of Azacitidine. Tomorrow is the last day. And then a few weeks to recover and another biopsy.  My further plans completely depend on the outcome of that biopsy. Who What When and Where are still undecided. Andy is very focused on keeping all the doctors in the mix and never ever dropping the ball. And so are a hundred of my friends...

Today is an absolutely gorgeous day in London. I'm in the new MacMillan Cancer Day Care Center getting a blood transfusion. Two bags of hemoglobin. Man, without the proper amount of hemoglobin in your blood you really have to drag your ass around. I'll feel much better tomorrow. But I'm so glad nothing has been alarming during this round of chemotherapy. My electrolytes are holding.

Yesterday I went to Regents Park with Ari and played in the playground and watched Laila chase ducks right into the pond!  We had to pull her out and she shocked herself as much as she shocked us. Too bad dogs can't laugh, because it was hilarious. I don't think she's a water dog. 

Later I went to dinner with Edie, Elsie, and Carolyn. Summer Solstice birthday celebrations which was so fun. I watched them drink a fabulous Chianti.

Andy and I had such a nice Father's Day. We went to see Van Morrison play at Hampton Court Palace (the summer home of Henry VIII). I was blown away by how tight his band is. I think every possible type of horned instrument was included in the band and the guys were switching back and forth like crazy. Van brought out his daughter Sarah out to sing with him and it gave me chills. She's super cute and talented. Van Morrison has this reputation of being so ornery--just burping on stage and leaving-- but tonight, he was absolutely amazing.  I didn't realize he wrote Crazy Love. But he did. I thought it was Aaron Neville. My favorite Van Morrison song is Brand New Day. He didn't play it this night, but look it up. It's perfect.
Lots of Love,
Dina

Started It

Today was the third day of round 2 of Azacitidine. I'm very appreciative of this drug.  But I do also just have to mention that I am so tired of drugs and medicines.  I can't wait to get back to the old days of treating my ailments with things like wheatgrass juice and Goldenseal. But this is Ok. This is a phase in my life where I have certainly learned a lot. I've learned to rely on Western medicine. I've learned to pray. I've learned to love myself a bunch more and I've learned how much love I have in my life. It's not that I didn't know that before, but this really drove it home! 

I've been feeling great. I was able to go to pick-up on the last day of school and hug teachers and friends and then take Isaac out to lunch and buy him a new pair of majorly cool blue suede "I did awesomely well in fifth grade" sneakers. 

My college friend Arpine arrived yesterday and she is a hoot. Tons of laughs.  She is such a through and through major New Yorker. She reminds me of a former me. The really talkative, opinionated, not afraid to open my mouth, all-black wearing downtown chick. It's very reassuring.

In New York, you can really rip someone a new one and it doesn't matter because you'll never see them again. But when we moved to Chicago, I really had to clean up my act. I had to get some manners, smile back at people on the street, and moisten-up that super dry sense of humor. That was probably the hardest part, but it was either that or risk no one ever getting any of my jokes ever again. So, needless to say, I always find New Yorkers really comfy. Like an old, extremely expensive soft leather coat that fits you so well because you're so fit because all you do is work out. Maybe one day I'll be able to put the coat back on.

Good News!

My leukemic counts are down! They have gone from 20% blasts to 8-10%!!!!! Nothing short of a miracle! My prayers, everyone's prayers, have been heard. I am so grateful! Excited! Relieved! I can have a transplant.  I am forever indebted to Marty Tallman at Memorial Sloan Kettering whose suggestion to use Azacitidine for 10 days might well have saved my life. I am forever grateful to Marty and Panos Kottaridis at the Royal Free Hospital for not giving up on me.

What I'm to do next isn't clear. I suppose I will start a next round of Azacitadine tomorrow while preparations for a transplant get underway. I imagine that if the counts remain how they are I will have a FLAMSA transplant and if they continue to lower I will have a Reduced Intensity Conditioning transplant. I pray my donor is feeling well, still willing and available. He or she is an angel.

I thank everyone for your love and prayers.  I too have really learned to pray through this.  I feel like I have a relationship with God or goD or gOd, Buddha, Jesus, Allah, The Great Spirit, all the beauty in the world, in nature, in flowers, in my incredible children and sweet husband. And all my friends-- you are varied, vast and strong. Tireless givers and open. You are inspirational, dedicated and fun and funny.  Oh, and REALLY supportive. Did I say kind?

I now have been gratefully re-given the sense of "time". I fully understand that tomorrow is a mystery. Of course, true enlightenment would be staying always in the beautiful moment--the only thing we truly have. The present is the gift. But it is HARD HARD HARD to know that!!!! I don't know how anybody does it. I just know that I've been given some breathing room. 

People thrive on hopes and dreams and if you don't have a sense of the future then those hopes and dreams are nothing.  I know it's all just a fantasy anyway, because this moment is the only real thing, but I need hopes and dreams and plans. I'm for sure, not enlightened. But that's OK. Somewhere there must be a balance. How to hope, yet stay present, how to dream, but not miss this moment.  Human is so complex. 

Ouch

After much prayer this morning, the biopsy was done. Andy and Andrea were with me, a bit green and very supportive. They majorly slipped me a mickey today, I think I spent most of the time telling everyone how beautiful they are--including the doctors.  I feel so well right now. I love it. But I know the spot where he did the biopsy is going to turn into a big ouchy tomorrow.  It seems I'll probably start Azacytadine round 2 on Monday. I want to. So, fingers crossed, prayers in place, visualizing being well.

Apparently, I got home and slept and slept and my kids snuggled with me and I didn't even know it. It's like when I steal kisses off of Ari when he's sleeping, but different, because, I like being kissed. And I definitely prefer to be conscious when I receive them! But, when it comes to kids, Andy and I will take any sort of affection, anytime, anywhere. 

Andrea is really close with my kids. She's funny and cool and smart and knows them inside out. We carpooled to nursery school together. She knows Ari pre-natally :-)

Andrea also has the organization gene. You know, that giant fantastic gene that if you don't have it you go through life feeling like you have a chip missing and you just watch other people generously organizing your stuff for you and it's like watching a foreign film without subtitles.   I get completely confused, but then there's ultimately a happy ending I'm like, "HEY! That was a fantastic movie!!" 

Do you think that maybe while l am spending so much time thanking God for so many gifts and asking for healing in my blood, I could ask for the organizational gene?  

Sweet Dreams

Trials

I just spoke with Panos. This is a doctor who I really feel is on my side. I feel like Marty is too. But if I can find that here in London and ultimately have my transplant here in London and not have to uproot myself and my family, it would be so much better. 


Panos is contacting the researchers today about the Thioridazine trials to tell them we are interested in compassionate use of the drug. Hopefully, they will give him dosages.   He's is not sure they will reveal the complete protocol of the trial, but whatever he can get would be great. He was trying to make me aware of how many drugs go into trials each year, to no avail. Although, it is undeniable that Schizophrenics on this drug have a really low rate of cancer. That is documented data.  And Panos agrees with that. And then we laughed at how indecisive I'll be if I take this drug. It completely zonks you out. Yikes. This will definitely be a trial.

The only thing that's weird about staying in London is that if anyone I knew ever had to go through such a horrendous cancer experience, I'd shove them out the door to Sloan Kettering right away.  It is the place to be for cancer. I always wondered why my mother wasn't at Sloan years ago? She had a very complicated cancer that showed up in her lungs and a Chronic Leukemia as well. And instead of Sloan Kettering, they chose a podunk hospital close to home because it was convenient.  And she died there.

Frying Pan

Remember those cartoons, like Tom & Jerry and Foghorn Leghorn when they get hit in the head with a frying pan? And they sort of wobble around and their eyes turn into "X's"? And after a bit, they snap out of it, shake it off and return back to normal?  Well, that's me. 

This last round of chemo really had me under the weather. I realize I am terrible at being sick, and I am so sick of cancer. I am so wanting to get over this thing. It's so hard to not feel well. Everyone says, "Take care of yourself".  But it's SO HARD! 

Is it a mom thing? A woman thing? I'm very used to taking care of other folks. Putting others first. I actually enjoy it and it's such a big part of my identity. But instead, now my family and friends are keeping me patched together. Taking care of me. Keeping me fed and rested. Organizing all my tablets. Letting me preserve my energy for when I am with my kids.

Today was good. We bought shocking bright pink geraniums to put around the Japanese maple in the back. And Ari picked-out a Lupin.  What a really cool looking flowering plant. Now I just need to find a good "full sun" spot in the garden for it. Full Sun in England. Hmmm. Challenging. 

So, as far as cancer goes...I've got my options. Today I'm super grateful for the researchers in Canada who communicated with Panos yesterday (on a Sunday no less) and agreed to give him a protocol for Thiorizadine for me, so I don't have to wait for them to begin trails. This is an anti-psychotic drug that is being tested as an anti-cancer drug. The questions about this drug were raised by the low-level of cancer in in-patient psychiatric patients. 

I have a biopsy scheduled this Thursday to see the progress of the Azacytidine.  Maybe I'll get the results on Monday? 
I've got my friend Andrea here with me now. She's a friend from Isaac's pre-school days.  Pre-school is such a great time for mommies and daddies to make friends. You get to muddle through those crazy years together, and it makes it so much fun.  Andrea has that effect on me. Just a nice fun spin to the day. Thank God. Once again, and always, Thank God.

big love,
Dina