From the Team

I've received so many wonderful messages of support that I cannot help but post some of them here. I hope you'll forgive me if I published something you wanted to keep a secret... I think these messages can help more than just me.

Snippets from an email sent by someone who has been going through chemo for a year and is about to start another round the same week as me, in preparation for a bone marrow transplant:

"Don't eat any of your favorite foods during chemo. An association will be formed, and will dredge up memories of driving the porcelain bus."

"This time next week I will be getting my chemo. I am not scared either, I am trying to stay as positive as I can about this procedure, to the extent of drafting my day 30 blog post announcing that my blood type has flipped from o+ to A+ and engraftment is happening.
But I also spent some time today in a recording studio laying down some tracks of my originals for posterity should there be an unforeseen development.
Belt and suspenders."

A message from a survivor looking back, mostly unedited for the pure joy of reading the message as is:

I'd like to share a bit of my own chemotherapy experience with you on the grounds that some shared experience might be better than none, and though my cancer was different from yours and the means of chemotherapy delivery may prove different from yours, But here goes.

I received five or six sessions of chemo each three weeks apaRT, PERHAPS FOUR WEEKS APART BUT MY MEMORY PROBLEM IS NOT THE REsult of chemotherapy, nor is my typing problem, The chemotherapy was as new an experience for me as it is about to be for you. Mine was delivered through an IV and consisted of four different chemicals, each ingested in my bloodstream separately and serially, that is one after another without any pause between them. While it isn't always fun to get stuck in a vein for hours every three or four weeks, and because your veins are considerably more youthful than mine were and are and have endured many fewer injections and probes than my aged and multi-injected veins have, my guess is that your treatment regimen may be less adventurous than mine. Even in my condition, however, I only had two misadventures, a blowout of a vein during the first treatment and the inability to find a usable vein during the third or fourth treatment. The first required a second try and the second required a more experienced nurse. And though each of these treatment sessions was 4 to 6 hours in duration, I found them neither painful nor particularly boring. There was time to talk with my wife and family members, tease a nurse or two, review my life and wonder if all of this was going to turn out okay. Surprisingly it did. Now I shall turn to the periods between treatments.

After the first two or three treatments, while my body and mind were acclimatizing themselves to what was happening to them, the first two weeks after a session were always difficult but not painful. I experienced some mild nausea for the weeks after the first two or three sessions, therefore during the first two-to-three months, acute constipation for the first several weeks, both of which were anticipated and pharmacologically treated, and extreme fatigue and loss of energy for each fortnight period after treatment. The second week was often worse than the first. The third week was my best up week, and the fourth weeks was a kind of placid threshold. When I tried to do too much after one of the later sessions, when I thought I felt good and was ready to handle anything, I discovered that I was wrong. I was neither ready nor able to get out of a taxi and food shop and walk eight or nine Brooklyn streets without reeling hysterically through the last five of them certain that I had done myself some serious damage. But when I behaved sensibly and endured the weeks of weakness and even depression, I recognized that it was more likely to survive than not. I was always buoyed by my ebullient oncologist and his assurance that he could see the positive progress I was making through the blood work that was analyzed after each chemo session. And though I knew that the lymphoma 5 I had was not only in my chest and abdomen but had invaded my bone marrow as well, I was always reassured that it was all getting better and on the wane.

When I was interviewed by the research physician for a study of chemotherapy treatment on males iin their eighties, I realized that I was so pleased that it had gone so well, I told the researcher that I had had no ill efects from the treatment. My euphoria at the outcome had erased from memory even the immediate discomforts I have described for you. The researcher correctly concluded that I could be of no help to her study and I never heard from her again. Perhaps I'll be more useful when I contract something fatal.

Good luck with your treatment. Know that we are identified with you, both concerned, yet hopeful, attentive to your progress, and loved by your aunt and I and our siblimgs and their siblings.

Another helpful, supportive survivor story:
I suppose I don't have to ask you how you are as I have reading all your emails to us. And having gone through some of the stuff you're going through, I really know how hard things are. But I am sorry I haven't emailed you sooner. I suppose I've been kinda depressed about the situation and I've been waiting for a good time to write. So here I am. I thought your and Joshua's decision on going with the deep freeze is a good one....
...On another note, if you ever need the ear (or eye if writing) of a cancer survivor, I'm all ears and eyes (4 eyes if you count my glasses) lol. You know I just celebrated my 16th year since my kidney removal on Valentines Day. Now that had to be the worse Valentine's present I ever gave my wife. I still go to the doctor around every 3 - 4 months for a checkup. Sometimes the doctor finds something but most of the time I'm clean. Lucky for me the cancer cells end up growing in my bladder where he can scope and prod and zap and destroy before they get larger than a pin head. Anyway, I wasn't sure If you knew much about this part of my life so I figured I'd share. I hope it's ok.

The Refugee Story, only slightly modified to remove names and a couple of other asides:
My first year out of law school I worked for CLASP - the Cancer Legal Advocacy Services Program. All my clients had cancer. But that was the only unifier... Some of my clients didn't really need a lawyer - they needed a grief counselor. But the ACS doesn't provide that service for free.

There was one woman I'll never forget. Her name was Ishti and she was a Sudanese refugee. She walked across the Saharan desert with her two girls to a U.N. refugee camp in Kenya. She saw her husband murdered by soldiers. She gets to the refugee camp, receives a physical, and is diagnosed with breast cancer, both sides. She was only 28. Her asylum case was fast-tracked to the U.S. for medical reasons... A radical Catholic (lesbian?) nun was helping her prepare for a double mastectomy, and they decided that she would give the Sister temporary custody of her children during the surgery. They also wanted a will so she could choose the Sister as the permanent guardian of her children. So I drove out to write a will and custody decree. When I met her, she said to me, "I didn't survive this war and then walk across the Sahara Desert to die of breast cancer." Then she said, "People always ask, 'Why me?' I think it's better to ask, 'Why not me?'"

That comment has stayed with me for a long time. I think about it every time I hear about people dealing with the general unfairness of life... I guess it's a question of humility and understanding that fuckin' shit sucks. That when you are the person experiencing the horrible, devastating unfairness of life, you have to realize that you are not immune from it and that it's a shared experience of humanity. That there is no use asking, "Why me?" because really there is never going to be a satisfying answer that doesn't make you feel terrible about every single choice you've ever made. That's what I thought about when I read your blog section on "Reacting with Action." You seem to already be in that head space, and I think that's really great.

The refugee woman is cancer free and has breast implants. She is studying to be a nurse. Her girls love school in the U.S. She has a boyfriend. The Sister is her best friend. So yeah - she didn't survive a war and walk across the Sahara Desert and then die of breast cancer in a refugee camp in Kenya. For her, breast cancer is one of the best things that ever happened because it gave her a new life.

I'm really glad I know her. And I'm really glad I know you.

Keep a good thought

Email bits and pieces:

"I know this is probably wrong to say but when I saw CyberKnife! Robots ! I just thought wow that's way cool :-) "

"Good luck as ever! Take your time, do things slowly! Give the body a chance to get used to so much stress! Ask, whether radiation could burn your skin and what to do about - better, how to prevent from it! Or, how to help healing - if."

"I have a good friend in Seattle, your age, who had a double
mastectomy last year; she was just like: ewe - get this cancer OUT of
me. She's doing really well now."

"Wow. This is all pretty freaking heavy news. I hope you both are holding up ok. I totally support your choices. From the outside it sounds like you are being as smart and reasonable as always, even when I can only imagine its all very emotional and overwhelming.
I'd love to skype again soon, it was so great to see your faces. I don't do as well with the whole email/facebook modalities, but just know that you are in my thoughts many times a day.
All my love,"

"babe, you are an asset to the human race. i mean that. i think this is a wise decision. of course i'll pitch in to help ensure amazing Ramoshuas of the future romp and roam."


"Sad having just read your most recent email. But extremely relieved that you have taken swift action, and hopeful that you can put this cancer thing behind you and proceed with your life. I think it would be a very good idea to freeze your eggs; it leaves more options.
You sound so brave. Courage will pull you through. You are so dear to my heart; my thoughts and prayers are with you every day. As hard as this must be, there are certainly reasons to be grateful and hopeful.
Please keep sending emails"

"Sending so much love and wrapping you in a giant, cosmic, hug of gratitude and life force.
Yay for the option of making egg popsicles. And yay for fresh humus.
And yay for good doctors. And yay for humor. And yay for partnership.
I'm sorry for the weight of these decisions and realities. Thank you for sharing them with the people who love you. You're in my heart as I walk through each day."

"oh honey. if only these tears could get you through this faster. i read all you are going through and just want to scream but then i hear my amazing friend ramona who is so incredibly brave. hang in there like you are. it sounds like you've got some tough weeks ahead but remember you are not alone, better days are coming soon. thinking of you and sending all my love."

"My Ramona, I am so sad with you! I don'T know what to write Or what to think. I feel so empty! I am thinking of you with all my Heart. I have considered starting to pray. But Looking at your Situation just confirms my Idea that god doesnt exist. If so, I am Not a Big Fan of his. It rather sucks!"

"I love you love you love love you you you. Thanks for the update - heavy stuff. I am thinking of you so so so so much. More news from us soon but just wanted to send off a quick note to you. love love love love love love love and healing vibes."

"Hi Ramona!!!
I'm so glad you are on the mend. I've been thinking lots and sending my thoughts a love to both of you guys.
I'm interested to hear more about the radiation decision. It's such a complicated process. I hope you find out more soon!
Big ass hugs and kisses to you and Joshua!"

"Hope your recovery goes well. It must be frustrating to require further treatment after such a surgery and I wish you continuous strength to deal with it. Although I know that supportive advice can be tricky, below some comments re treatment. Please don't hesitate letting us know if there's anything we can do for you.
I do sense your completely understandable desire to make sure you are getting the best treatment. With regards to your remarks on the evidence for need of radiation I just want to mention that published science can be a surprisingly unhelpful source of information, even more so in rare or unusual cases. As a published scientist and reviewer I would personally trust experts experience that you can discuss with them in person much more, in your situation.
Also, with cancer, precaution is the thing to side with. So when weighing risks it is really important to understand the risks of not having radiation, or at least understanding the degree to what extent the risk is or is not understood. Side effects or over treatment are reasonable concerns, but of a lower magnitude than overcoming or preventing cancer. Also, you can be confident that your young body will handle side effects better.
I apologize for not sharing my unsolicited thoughts on this difficult topic in person. We re in the mountains and my iPhone can barely handle email.
Hopefully the talk with the doctor on Tuesday will be reassuring, from what I've heard so far, it sounds like you're in good hands."

"But we talk and think about you and Joshua incessantly. We feel you both to be very close to us. And we feel extremely optimistic without being insane and relying too heavily on wish and denial.
But mostly focusing on all the "facts"
Here are a few...
You are generally speaking, a
Pretty darn lucky person... And you have generated so much good karma in the world.....
Your bright light hearted temperament... And your fierce strength and resiliency...
So there you go... Need I say more!"

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