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Thursday, February 17, 2011

what a week!

Dear friends,

I am so very tired -- I have never felt so low in all my life. This journey is full of ups and downs; right now, I am definitely in a valley somewhere, trying to claw my way out. Partially it is because I caught Mira's cold sometime last week and it hit me like a ton of bricks. It's ironic, tumors on my spine and that cavity I'd never heard of called the mediastinum, and stuff on my lungs ... all I felt miserable about all of last week was this cold and how it made my entire body ache. It exacerbated my coughing and that made my ribs hurt and at the end, my whole body was in agony.

To make matters worse, on Thursday, we found out that the Mayo had reviewed the slides from my 2006 Scripps surgery and decided that it was NOT low grade osteosarcoma, but high grade. They did not, however, say anything about the biopsy, which is they just termed as metastatic osteosarcoma.
I was so confused and upset. I spoke with Dr. Forscher and he agreed that it was surprising because clinically, it looked like low grade. However, since there was doubt, he said that he wanted to have the slides checked at Cedars before we started treatment. So, I scrambled trying to get the slides that had been sent from Scripps to Mayo back to Cedars, and also to have Mayo send their slides from the biopsy to Cedars as well.

Truthfully, I felt this was more Mayo nonsense. The initial pathology from the biopsy in 2006 had identified it as a low grade sarcoma, the surgery had confirmed that. So, Mayo was saying that both the outside pathologist and the Scripps pathologists were wrong? Plus, I was confused -- why had they not done a report on the biopsy? I went through a painful procedure -- they damn well have done something with that tissue that they dug out from inside me. Forscher had no answer for me as to why the Mayo had not looked at the biopsy. I couldn't get a hold of anyone at the Mayo ... and I am so tired of calling there. In fact, I'm so tired of calling and filling out forms so that I can just get information to go from one place to another and everything takes forever.

Yesterday, Dr. Forscher told me he got slides from the pathology lab that did the initial biopsy in 2006, and he and the Cedars pathologist looked at that and agreed that it was high grade osteosarcoma. He is still waiting to get the slides from the Mayo ... but this news now has me in shock. Scripps was wrong! In the most fundamental way .. not just in how they treated me and what I went through, but they had the initial diagnosis wrong.

High grade osteosarcoma is responsive to chemo, low grade is not, so right now, Forscher is waiting to get the other slides and run some tests before he can decide what kind of treatment I should have. And what is ironic about this is that I went and met the radiation oncologist that he had recommended at Cedars Sinai and, for the first time, felt that I had met a doctor whom I was willing to trust and start with.

Dr. Behrooz Hakimian is a unique, wonderful person and his plan was to give me a low dose radiation 5 minutes a day for 10 days. He felt that that would arrest the tumor next to the spine, shrink it, perhaps even make it go away completely in the best case -- and relieve my pain symptoms. It was so easy to talk to him because he was so open and willing to listen. I asked him tons of questions, told him all my fears, and somehow, felt assured that I could trust him. At the end, as he was getting ready to leave, I told him how scared I was of chemo and jokingly asked him if that was the reason he was a radiation oncologist instead of a general oncologist.
He smiled at me in response, sat himself down again and said to me, "You and I have more in common than you realize."
I looked at him in surprise, and then he said to me "I had osteosarcoma in my shoulder 22 years ago."
I sat back and gaped at him. "Chemo saved my life," he said, "I really believe that."

I was so moved that he had chosen to share that with me -- I gave him a big hug and thanked him. As we sat in the car driving back, I told Andre that I was willing to trust the treatment this doctor was proposing. Now, of course, that may not even be part of my treatment plan.

Which makes me relieved that I did start with the other part of my plan. I had been looking into boosting my immune system and Andre and I had discovered the Orange County Immune Institute up in Huntington Beach, that offers treatments towards that. Andre and I researched this place and talked to some friends who have had positive experiences with the methods used at this clinic. While we cast about for what the right treatment is, I wanted to start something that will give me a sense that I am equipping myself to deal not just with the cancer, but with its treatments as well.

So, all of last week, we drove up and down between San Diego and Orange County, which has also taken a toll on me. I really liked the doctor running the clinic, Dr. Ferre. After seeing me for two consecutive days and taking in my pinched face, she said that she was going to have me see a pain specialist, and she had me in to see one the next day. And that was a blessing because he looked over my medications, changed them around and now, I am off of the Ambien in the night, being able to sleep and manage my pain much better.

Now, we will wait to hear back from Dr. Forscher and I am seriously considering having, at least, just the slides sent over to M.D. Andersen to get a third opinion. I have an appointment with their sarcoma center in mid-March since that was the earliest they could get me in, though we may not wait that long to start treatment.

Dear friends, I am sorry for not having blogged earlier. I am running very low on energy these days and that cold really knocked me back. The pain specialist really helped and my arm is much better now. Hopefully, I will keep up more now and there will be better news .... we'll hope. I love you and miss seeing your friendly faces. With lots of love to all of you,


Saturday, February 12, 2011


Dear friends,
There is much to tell but I am struck by exhaustion and my right arm aches when I use the computer. This past week has been a busy one with many trips to L.A. and Orange County. Please know that I am alright, just very tired ...t0o tired even to write, though the words are constantly in my head.

Thank you all for the many lovely things you have sent me ad the kind thoughts. I long to return your calls and write you e-mails but the truth is, right now, I am too tired .... soon I hope my strength will return, and I will write more.

Monday, February 7, 2011

Mayo Clinic, deconstructed

Dear friends,

This will be my last post about doctors, and their general merits and demerits. I think I have done a little too much of the latter, anyway, and it gets tiresome after a while.

I have been thinking about the Mayo visit .. and I realized that I have never mentioned the doctor who got us into the Mayo so quickly. Chip Rowe is a friend of Jenn, so unsurprisingly, he is cut from a different cloth than some others that I have seen in his profession. Chip was the one who sounded the alarm when I went in to see Jenn initially, and together with Jenn, insisted that I get an MRI. And Chip was the doctor who called us on Saturday, a day after the results came back from the radiologist, to talk to us about what this all meant. Keep in mind, this man is not our doctor, has never even seen us, and is currently somewhere in Illinois/Indiana!

Since then, Chip has been there for us, willing to talk to us, comforting us, just letting us know that he is there for us ..... Andre and I have sometimes just looked at each other in disbelief at his kindness and compassion. It was he who promised to get us into the Mayo and then delivered and we really appreciate it. Except that as I deconstruct our Mayo visit, I think what I have might seem ungrateful ... but Chip, if you are reading this, I do not mean to be, and it pains me to write this, knowing that you wanted a very different experience for me.

Still, every morning or afternoon, I get a lecture, in German, from Andre's mom on how I must stop thinking of other people's feelings and start focusing on myself, how I must speak my own truth with my own voice with confidence, and how I must give myself the same love that I give others. Please note, I am giving you the Cliff Notes version and I am not, by any means, fluent in German, though I don't doubt that I shall soon be. ;)

So here goes. Andre and I were disappointed in the Mayo for several reasons that we have now understood. First, we went hoping to see a team -- we expected to see several doctors, and certainly a sarcoma specialist. We saw two -- a surgeon, from whom we learned nothing new, and the oncologist, who was too young to be a sarcoma specialist, given that, as the surgeon sagely told us, there are more people diagnosed with prostate cancer in the 20 minutes we were with him than diagnosed with sarcoma in an entire year.

Granted that she consulted with a team and then spoke with us, but frankly, I know the difference between myself now as an instructor, and myself 2 years into my CSUSM career. If I fly all the way out to cold Minnesota, I want to see the old, grizzled doctor, not an assistant professor. (Shucks, I have tenure ... should have told her that! Andre adds that I should also have told her that she's not going to get tenure the way she's going, but that's a trifle uncharitable, so we'll leave it be.)

It would have been interesting to see the radiation oncologist, to assess if he was assigning a 50% success rate to radiation because he was unsure of himself, the technology, or me.
And it is that last piece that was so missing at the Mayo. The oncologist pulled up a treatment plan that was their standardized plan to give to osteosarcoma patients. Yes, I know, some, perhaps most doctors don't believe that the individual has much to contribute to their own treatment, but it is absolute irrelevance to me what they believe. I believe that my treatment needs to be tailored to me, not based on some average obtained from a clinical trial. That's a good starting point for sure, but I want the assurance on the part of my doctor that more will be taken into account.

Was this because I was flying in and they had to give me something? If so, that suggests, I am better off with someone local. And so far, that is the one great positive of the Mayo. Charles Forscher at Cedars Sinai is starting to look good. He works only in sarcomas and so far, he hasn't startled me by pulling something out of his top drawer.

There is a final incident that prejudices me completely against the Mayo. It's a small thing, but to me, has a prophetic ring. Jenn spoke with the oncologist about a sleeping aid for me, suggesting Ambien. The oncologist, I had observed, was already a little thrown off by Jenn's assertiveness and ease of medical jargon. She reacted by asking me if I really wanted that; I replied that I did. Then, she said, "Well, I think you'll need the controlled release Ambien rather than the regular strength.." and went into some spiel about insurance potentially not covering it. Jenn disagreed and then suggested that she just try giving me the regular one and then we could always get the controlled release, if needed. She ignored Jenn and prescribed the controlled release Ambien.

I had it that night and the next -- I was a zombie. Came back home, Jenn lent me one pill of her regular Ambien and I slept amazingly soundly last night, got up this morning, walked Mira to school, and enough wits left me in me to find a park where I could meditate.

And this is what my meditation brought me. I know EXACTLY what I want in a doctor, and I know where and how I to find it. There are a few more interviews that need to take place but I am narrowing it down, to MY satisfaction, and really, mine is the only satisfaction that matters ..... snicker!

What I am trying to say is that I have, through my initial posts, perhaps, put angst into many of you of where I am going and whether I had the sense or ability to choose. I was in a very bad place, and I may well return there again, but for now, my sense of purpose has returned and I intend to walk this journey on my own terms, choosing those whom I see best fit to help me. That will not include the Mayo Clinic at this time.

Tomorrow, we see the radiation oncologist at Cedars Sinai and an osteopath. I feel confident that we are going on the right track. Bolster my confidence by trusting in me!

I love you all a lot and am so grateful to all of you. The meals have started and they take a load off of us -- thank you. I eat each bite, knowing the power of your good thoughts and wishes are in them. Good night!

Saturday, February 5, 2011

Back home

We're back! It's so good to be back home in San Diego in the warmth, the sunshine, the open blue skies.

Death has a different color in San Diego. In Minnesota, inside the tall, sleek buildings of the Mayo Clinic, death seemed very real and very near. Even though the sun was shining on the days we were there, I felt numb to everything. Everything I did felt like a struggle -- as if there were a resistance inside me that I had to overcome and doing so made every move exhausting. Stepping outside into the cold, frigid air, for just the few minutes it took to get from car to building, was enough to give me coughing spasms that seemed to support the doctor's dire prognosis.

I cried a lot in Minnesota, wondering why this was happening to me, why all my friends should rally to my side just to watch me die, what should happen to my beautiful daughter without her mother.

Jenn would just shrug her shoulders at such thoughts. Even after the doctor's pronouncement that shook Andre and myself, she remained calm and upbeat. There is not a doubt in her mind that I can beat this. Sitting in the plane, sandwiched between Andre on my left and Jenn on my right, I realized that I was between two people who had no intention of allowing me to tamely fold up and mournfully prepare for death.

"I don't care what we have to do," Andre declared, holding my left hand, "If we have to go to China, or to Arizona and find a shaman to bless this thing out of you, or anywhere else, we'll do it."

And Jenn, massaging my right arm that was aching again, agreed. "You'll beat this thing," she said, "I just know it. Because that's who you are."

What could I do faced with such relentless optimism, such confidence in a strength that I could not feel but had faint recollections of once having?

I slept.

When we reached San Diego, I walked as though in a daze, until we came out of the airport into the sunshine. Palm trees were waving in the breeze, the air was soft and light, somewhere a child screamed in delight to see her grandmother. I felt something inside me shift, as if a weight were lifted off of me. It felt so good to be home. I felt so lucky to live in such a gorgeous place, to see such beauty on a daily basis. And I promised myself that I should, each day, remind myself of that.

I will go out each day, sit in the sunshine, feel the breeze, listen to the birds sing -- that is one of the luxuries sickness affords. And I intend to take advantage of it.

Bathed in this divine sunshine and the powerful love that I feel all of you sending me, I have no doubt that I will find my strength and I will walk this path and come out at the other end. Dear friends, do not stop sending me your love and prayers --- this is the lull now before I decide what I must do and your thoughts will sustain me. Thank you -- you have my deepest appreciation.

Friday, February 4, 2011

Mayo Day 2

Dear friends,

I had the biopsy done today. I regret it. Even though yesterday, when Andre asked me if I was certain that I wanted to go through with this, I said, "yes", today as I lay on the table and the doctor injected me with the local pain-killer, the loudest voice in my head was a plea -- why, why are doing all this to your body? And all I could do was shudder and cry.

Did I mention how Forscher described osteosarcoma to us? Sarcomas, he said, are different from other cancers. Other cancers eat away at the good cells, sarcomas just want to grow. Sarcomas, he said, don't want to make any trouble, they just want to grow and as they do, they push against the other things that they come against. I remember sitting in his office and thinking. "Great, sarcomas are passive aggressive!"

Today, as the doctor had me roll on my side and lift my left arm up so that they could find the best place to insert the needle, I had a flash of intense pain, accompanied almost by an anguished thought from the mass there on my lung to leave it alone.

Silliness? Perhaps.

The biopsy was painful but swift. The doctor was kind and efficient. He allowed Jenn to stay in the room with me when he saw how distressed I was. But afterward, they had me in the recovery room to ensure that nothing was going wrong and I was alone with my thoughts and tears because they wouldn't allow Andre or Jenn there.

After an hour and a lung X-ray that showed no complications, I was discharged. The results won't come till next week but it seems the doctors are pretty certain that it is indeed osteosarcoma.

We had an appointment with the surgeon, Dr. Rose, who concurred that surgery was not the right option and then Dr. Hubbard, the oncologist from yesterday came back. She said that they would give us the treatment plan they recommended and would be happy to work with whichever local center we chose to administer it. And that she would call us next week with the results of the pathology.

I was too tired to ask questions, too numb to care. Both the meetings left me feeling so vulnerable, so bereft of hope. I'm glad that Jenn is here. She is such an amazing person -- a beacon of light, truly. She reminds me of one of those inflatable dolls I had as a kid: you would punch them and up they would bounce, a smile on their face. And if you weren't careful, sometimes they would swing forward and hit you. The words "indomitable spirit" were meant for Jenn. She has been with us this evening, smiling, cheerful, determined that we will not fall prey to the shadows that are in our mind.

Tomorrow we come back home. I shall be glad to be in the sunshine again, though we have had good weather here too (by Minnesota standards!). And this weekend, Andre and I shall just rest and think about what we learned. We are determined to be deliberate in whatever we do, and that takes time to think.

Dear friends, many of you have asked about putting me in your prayer circles. Please take this as my permission, my appreciation, in fact, for being willing to do so. I have great faith in the power of prayer and now, more than ever, I need to be lifted by a power stronger than any I possess. Thank you for your love and many kindnesses.

Good night!

Thursday, February 3, 2011

Mayo Day 1

Dear friends,

Day 1 at the Mayo Clinic started early.... after about 4 hours of sleep, we headed for the Clinic to report at 7 a.m. I had forgotten most of what they had told me on the phone and if I wrote it down, I lost the paper (this is my story these days, alas!) but I remembered "Gonda Building" and fast. So, I skipped breakfast and then, the check-in woman recommended that I continue fasting until I saw the doctor at 9:45. So, it was a hungry, tired me that waited for the doctor to come in. The cool thing, though, was that I was the envy of all the other people there because while we waited, Jenn gave me a massage on my arm to alleviate that pain. I'm so lucky -- I get to travel with my own personal physical therapist!! :)

The doctor was a young, nice woman who interviewed me about all my symptoms and then went over the scans with us. Even though we had done this with Forscher, it still was unnerving as she described where the masses were. One on the spine, wrapped around the nerves that come out of the spinal column, one on the lungs, somewhere in the mediastinum, close to my heart, one on the side of the lungs ...... so many, I thought, so many of them ..... and I had no idea that they were growing, or for how long they have been inside me.

After going over the scans and answering our questions, the doctor said that she would need to go and discuss the case with her radiation oncologist and surgical oncologist colleagues, so she left us for about 20 minutes, during which Andre and I both rested, and Jenn wrote down a million questions to ask.

She came back and said that the radiation oncologist thought that radiation would only have a 50% chance of success and that there was possibility of nerve damage that would make the pain permanent, so they are recommending chemo first. This is different from what Forscher has in mind, but we still have to meet the radiation oncologist at Cedars Sinai next week.

She then pulled up their standard recommended chemo treatment for osteogenic sarcoma. I asked if they were sure that that was what it was. She said that the indicators are pretty strong but that they will do a biopsy tomorrow morning (another fasting day for me!).

As she pulled the treatment up, we inundated her with questions. She was very nice and open to all of them, which I appreciated. We asked her if the Mayo did chemo-sensitivity testing, something we had heard about in another clinic, where they test the lowest dosage of chemo that you can tolerate that is still effective by a blood test. She said that the Mayo did not and we had a discussion about that, and she agreed that while that might be the trend in the future, it's still not mainstream enough. We also asked about immune boosting and she responded that she wasn't sure what that would do. Looking at my blood test, she said other than my being anemic, my immune system was fine. To which, I replied with some asperity, that it was obviously wasn't or I wouldn't have cancer. She let that go ... a touchy response from a frightened cancer patient, good judgement on her part.

It was the next thing that happened that was the most painful part of the visit. I had asked about fertility preservation options -- Andre and I have long wanted another child, I have wanted to the joy of experiencing pregnancy again. When I saw the recommended regimen -- a 42 week treatment with different chemo drugs each week, many of which are known to have weakening effects on the ova, I asked again.

She turned away from the computer, faced me and pulled back her chair.
"Let's back up for a minute," she said. "You have to understand that even with this treatment, your cancer might not be curable."

I looked her straight in the face, unflinching, even though her words went straight to my heart and twisted it. Uncurable ... isn't it funny that suddenly those six words were going to be what I would remember about this visit, what would replay in my mind over and over again.

Dear friends, I cannot describe to you the anguish I felt. I have been thinking about death for a while, saying to those I have spoken to that it would be a release from this physical existence, from this pain that wracks my body, that I have ignored for so long while I pushed and pushed my body to do my will. And now, suddenly Death was in the room, leering at me from a corner, saying that my wish might come true.

And I felt furious. I didn't even understand why. It was Andre, who also felt angry at that time, who explained it to me later at the hotel. "Uncurable", he said later, "that's not even true .. all she can say is that with their treatment, they can't do anything." All I knew was when Jenn interjected afterwards that we had been talking about death, I declared in my most determined voice that I knew that if I decided to live, I would live, that I just hadn't decided yet.

And I am very grateful to the doctor for clarifying that for me. Because in that moment, I felt very determined that I shall not let a doctor or anyone else for that matter tell me when I am going to die or how -- I shall make that decision myself. And I honestly believe that if I choose life and I fight for it with all my will and strength, then I shall not just survive, I will thrive.

As Jenn remarked, the doctors are good for one thing -- my perverse nature reacts well to them. Till now, Andre, my friends, were all saying that they understood my thoughts on death and that they understood that it was my choice and they all hoped that I would want to live, but that they knew (wise people that they are) that I needed to come to that decision myself.
One doctor today suggests that I might die, and all my melancholic brooding gets instantly converted to pugnacity!

Still, Andre and I walked away shell shocked. Jenn held us as I cried and was such a loving support. She insisted on talking to the doctor about getting me a sleeping aid so that I can actually sleep 8 hours instead of the 3-4 hours that I have been getting these past several weeks. And the darling that she is, she just came in and worked on me for an hour before I go to bed.
I am surrounded by such wonderful friends.

I've taken the sleeping aid, so I better hie me to bed... tomorrow is the biopsy and we will finally know for sure. And now, we have the Mayo's treatment plan. But Andre and I know that what we will do is think very carefully about all the options and determine the best one for us.

Good night! Sleep well.

Wednesday, February 2, 2011

From Atlanta to Mayo

Dear friends,
Apologies for not posting in a while. We've just reached Minneapolis. Thanks to my dear brother who took care of all the travel arrangements, we could take a direct flight on Delta from San Diego to Minneapolis, and so skipped the bad weather that hit further east. We're on our way to Rochester now with Jenn driving. It's cold here! I can't believe that I once wanted to live in Toronto!

Atlanta was wonderful..... Mikey's wedding was beautiful. He is half Peruvian, half Argentinian and Jewish, and the wedding was a beautiful combination of Indian and Jewish customs. Mira loved being flower girl, and she loved the dancing.

I must admit, as beautiful as it was, it was also bitter-sweet, seeing old friends from grad school whom I haven't seen in years. It reminded me of who I was when I graduated and all the dreams I had then.

This entry will be short because I am tired from the trips and because we are here now in Rochester and it's already past midnight. We have to get up at 5:30 tomorrow morning to check into the Mayo at 7 am --- doesn't that seem obnoxious to you? Asking me when I am at the peak of my health to do something at 7 am would be bad enough ..... in fact, frankly, it wouldn't happen -- if Jenn and Andre weren't here to drag me, I should probably snoozed in and skip that appointment!

Thank you for the positive thoughts and posts. kh, your words brought tears to my eyes -- thank you! I'm going to bed now thinking of all of you and your love and kindness .... I am incredibly lucky to have such friends.

Tomorrow, we take on the Mayo Clinic! :)