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Thursday, January 27, 2011

Mayo Clinic next week

JuDear friends,

The Mayo Clinic called us back and we have appointments to go there next week -- we have to check in to the clinic at 7 am on Thursday, Feb. 3 and then we will see doctor after doctor after doctor. Andre and I hope that we will be able to make sense of everything they say....

I am scared. I know that knowledge is good; it will be good to know what exactly this is and what can be done about it but I fear that news as well. And I fear it because my last experience with doctors has shown me how limited they can be.

I must assume that the doctors that took care of me at Scripps really did not know any better, that they did the best that they could. However, that leaves me jaundiced with the "conventional" medical system. I can excuse the doctors at Scripps for not knowing that I could prepare myself for the surgeries to improve the chances of success or even just to get rid of my fear. But what turned me off of the medical system is that when I woke up from my second surgery and asked the doctors what kind of physical therapy I needed to do, what I got was: "Well, we really don't know what kind of therapy there is for you to regain the functionality of your jaw. It's a pretty uncommon thing, so there's not much out there."

Before the second surgery, I went to the Integrative Department of Scripps and met people there who offered me all kinds of techniques to prepare myself for the surgery. Why wasn't I sent there before my first surgery? It's the same god damned organization!! I woke up from that surgery determined to make a good recovery, determined to get back to whatever normalcy I could achieve. And then I had an idiot of a doctor tell me that while they had planned to remove my condyle and jaw bone, they had NEVER thought of what would happen to me afterwards. They had never thought that I would need to go back to a normal life, that I would need therapy to get functionality in my jaw.

For 3 months after the surgery, I went from one Physical Therapy department in Scripps to another, and NONE of them had a clue what to do with me. I was lucky that there was one honest therapist at Scripps who told me that I would be better served by Sharp Hospital because they might know something. They didn't.

By complete chance, Vicki Golich hooked me up with her physical therapist, Jennifer Souders. Jenn was the one who brought normalcy to my life. She worked on tirelessly during each session, even after the insurance authorization ran out. She gave me hope and assurance that I could regain the functionality of my jaw and with her help, I did. Jenn is my angel and I love her dearly for everything she did for me. She, of course, would just shrug her shoulders and say she did her job.

At any rate, that is why I don't think much of the medical system and doctors in general. To have no vision, to be so limited in what you offer a sick person to help them heal --- I find it appalling.
And tnat is where my fear comes from -- what will I be to all these experts at the Mayo? A person or just a carrier of a disease? If it is the latter, then all their efforts will focus on eradicating the disease -- will they even think that there is a person who at the end of it all will need to pick up the pieces of their life and go back to being a mother of a six year old?
The doctors at Scripps obviously didn't.
Let's hope the Mayo is different.

This is rather a negative entry -- ghosts of the past have been haunting me.

However these ghosts serve a purpose -- I have no intention of allowing anyone to treat me as a carrier of disease. This time I intend to determine what the best treatment is for me.

To end this entry on a positive note, we're headed to Atlanta for a friend's wedding this weekend. He is a dear friend from grad school and he's marrying an Indian girl! Mira and I will get to wear our Indian outfits and dance will be fun!
And I will stay with my best friend from high school, shes so positive that all these negative thoughts in head will be sure to be banished.
Have a wonderful weekend, my friends. And thank you for all your positive energies sent my way.

Wednesday, January 26, 2011

My dream doctor

Dear friends,

There will be no real news on this entry, just a record of some of the thoughts that are bouncing around in my head. Yesterday was a blessed day because I had no doctors' appointments until 3:30 and then only in Encinitas. What a relief! I spent the morning working a little and then resting once the painkillers hit and made me sleepy.

As I thought about doctors yesterday, I realized that I know what I want in a doctor and I am going to wrote it down here. I have learned that declaring what one wants is amazingly clarifying for the mind. So, here is what I want.
I want a doctor who
(1) is competent and has enough confidence in their abilities to listen to their intuition,
(2) has the inner strength to be compassionate,
(3) is capable of speaking the truth with kindness,
(4) is willing to listen to me with respect,
and finally but most importantly
(5) has the humility to know and acknowledge that, no matter how good they are, it is my attitude and my beliefs that have the most influence on my body and my health.

I would have been so grateful to Forscher that day had he, as he finished the appointment, just stopped and said to me:
"I know you are scared and I understand that, but I will do my best to help you, and it's important for you to work with your fear and try to stay positive and hopeful because your attitude is what influences your recovery."

Does that sound trite? Not if it is said with compassion and a true belief in empowering the patient. I had a doctor say that to me and it brought tears to my eyes because it reminded me that I had the greatest responsibility for my own health. And I needed the reminder.

So that is what I ask for in a doctor. And I do not feel like Diogenes because I have found at least two such doctors but alas, neither of them has the expertise to help me now.
But now that I have a clear picture of what I want, I will focus on it and hope that I will find it somewhere. Heaven knows I will be seeing lots of these chatacters!

Dear friends, your comments are so wonderful and make me feel so connected to each of you. I'm pretty sure that I know which daughter of Kim's kicked the doctor :) (good for her)!
I read your comments eagerly and feel the community that surrounds not just me, but each of us. It is a wonderfully reassuring feeling.
I finish this post as we drive back from L.A. after seeing an osteopath-- I am so tired of this drive but each of these visits is working to clarify things in my mind, which is good.
Tomorrow I speak with the Mayo Clinic (I hope they match your description of a team approach, Vivienne). After that I intend to just rest ....... and not drive anywhere to see anyone.

One last request --
Think of me as being healthy and well, as you have known me, and pray that I will find the strength and courage to take responsibility for my well being and walk the path that feels right to me.
Oh, and throw out a wish that I may find the doctor of my dreams .......medical doctor, that is. I already found the PhD.

Monday, January 24, 2011

Good news .... I think

Dear friends,

Thank goodness for the weekend – I needed these two days to recover from Friday and get back to myself. The pain in my arm escalated on Friday (together with the pain in my heart) but on Saturday, I was able to start on Gabapentin, a pain killer for nerve pain, and I slept most of the day. I woke up with diminished pain, an appetite and an attitude of gratitude that was deepened when I read your posts and e-mails. Melanie sent me her blog and in it is her summary of a lecture by Archbishop Desmond Tutu (yes, she really is on a ship with him) and he said the following:
“I need you to be you so that I can be me. This is a fundamental law of being: we are made for interdependence."

So, though I felt regret for the distress the honesty of my last post caused you, I realized that the purpose of this writing is not just to inform you but to allow myself to speak my truth with you as witnesses. And I am so grateful for your heartfelt responses -- we are going to print them out and put them in a collage so I can see them everyday and remember, when I am low, that I can lean on you.

Today was our second trip to Cedars and it was overall a much better trip. First of all, we were able to leave at 10 and avoid all traffic and then once we got there, we actually had a decent lunch before we went to see the surgeon. Funny how these little things make such a difference. We had to wait for the surgeon because he apparently always runs late -- to me, that was a good sign because the only other doctor that I trust, Dr. Biter, always runs late because he takes his time with his patients. So, I meditated and perhaps I dozed off while André read. And then Dr. Johnson came into the room.

He just exuded confidence and he asked me why I was here. So, I narrated my story to him and he said he had looked at the scans and he thinks that I should be talking to a radiation oncologist and not him. This was not a case for surgery, he said very definitively.
"But what if invades the spinal column?" I asked.
And he shook his head and declared, "There's no worry of that. It's not even close."
Which was confusing and relieving at the same time. So, we asked him the same question about three times but he steadfastly maintained that there was no concern about the mass touching or getting into the spinal column. And then he said something confusing. He said, "It would be lot easier to deal with surgically if it was in the spinal column. Where it is now, there are too many nerves and blood vessels and surgery would not be a good option because that may lead to permanent damage of the nerves on your right hand. What you need to do is talk to Forscher about radiation."
So he said that he would call Forscher and talk to him and that I should be set up to see a radiation oncologist.

I asked him how many similar cases he had seen, and he replied that this was very rare. This answer is beginning to annoy me. I'm tired of coming up with rare problems for these doctors to work on and I wish someone would teach them to answer questions with numbers --1, 2, 5, anything really.

Then he tested my strength on the two arms by making me push his hands away, etc. and he said in surprise, "You're still pretty strong." And I had to say, "No, I am weaker than I used to be." To which he (and Forscher, who had done this exercise on Friday) shrugged and said, "This is pretty good." Privately, I wished they would test my strength by letting me punch them in the jaw with my left and right hand ... they should soon see the difference in strength then!

Still, this is good news, I think. The fact that he says the mass is far enough away from the spinal column means we don't have to rush into surgery. I still don't understand why Forscher thought that it was close to the spinal column -- did they not see the same scans? Does one understand the spine better than the other? The latter seems the most likely explanation. So, my panic on Friday at my impending paralysis and doom was unnecessary. My apologies, my friends!

I called Forscher up immediately after and he took my call (but apparently didn't take Dr. Johnson's -- is that a good sign?). He said he would speak with the radiation oncologist and Dr. Johnson and then contact me. So, we'll wait.... and then make another trip up there.

In the meanwhile, I've realized that I have my work cut out for me. I intend to work on my beliefs about doctors, none of which are very helpful right now. I will try to think less of punching them and more of how they can be and, indeed, are my partners in my recovery.

Dear friends, thank you for your words and thoughts over the weekend. I am convinced that that is what helped me out of the doldrums. I'm not sure if my courage has returned, but my sense of humor has .... and perhaps my courage will come slinking back when it hears my laughter.

André and I want to tell you that his parents are with us right now and are helping us hugely. They will be leaving next week (perhaps André's mom will stay longer) and that is when we will take you up on your offers of help and food. We are so deeply appreciative of your open and giving hearts. We are also waiting to hear from the Mayo Clinic to figure out when we will go to Minnesota and once we know all those pieces, we will be in touch with you. We intend to lean on you keeping Archbishop Tutu's words in mind -- we are made for interdependence.

Thank you for being there for us.

Saturday, January 22, 2011

Consultation at Cedars

Dear friends,

We returned yesterday evening from L.A. exhausted and emotionally spent. We left at 6 a.m. for our 9:30 appointment with the oncologist who is an expert on sarcomas. He was a nice, matter-of-fact doctor who took his time with us. He went through the CT scan images with us and we looked at the lungs together. There are two masses in the right lung, one 6 cm and the other 3 cm or so and there may be some other spots as well. Forscher thinks it is likely to be the sarcoma. However, neither of those areas in the lungs are the cause for the pain that I have going down my right arm and in my right shoulder blade. So, we looked at the CT scan of the neck and that is where he grew concerned because there is a mass adjacent to my spine, at the bottom of the cervical spine and that is what is pressing into the nerves that go down my arm. When he saw that, he decided that I should go to see a spine surgeon immediately -- he asked if there were any in San Diego that we wanted to consult, but we replied that we didn't have anyone, so he has set us up with an appointment on Monday with a spine surgeon at Cedars Sinai, Patrick Johnson. He feels that the spine is higher priority because of the nearness of the mass, whatever it is, to the spinal column. When I asked him about whether they would first biopsy it, he replied that if they wanted to determine what it was, it would make more sense to biopsy from the lungs because there is more "room" there, but this close to the spine, it doesn't make sense to biopsy. It sounded plausible when he said it but I'm not sure that I fully understand. Couldn't the lung mass and the spine mass be different things? What if it is not a sarcoma? He said that he thinks it is most likely that they are the same thing and probably a sarcoma, but at any rate, I should see the spine surgeon to get his opinion. If the surgeon says that the mass on the back is not an immediate concern, then we will talk again about the next step, which might be a biopsy of the mass in the lungs.

But how likely is that? How likely is it that a surgeon will say that he doesn't need to cut? The thought of this meeting on Monday scares me. I am already in considerable pain -- if we do nothing, will the pain increase? Will the mass invade my spinal column? Hazy recollections of biology remind me that the spine is THE crucial fixture of the body. If they do surgery, would that damage my spine? Could I end up paralyzed? If they were to remove the mass, might they damage the nerves and then this pain that wracks my arm might become a permanent feature of my life?

Fear has me in a vise like grip. As untenable as the current situation is, I want to hold on to it because the future might be much worse. Your e-mails and comments buoyed me so much yesterday as I waited for the appointment. Today, I read them and wonder if they are for some other Radhika -- I can't find a scrap of the courage that you credit me with. If this were a battle with a real adversary, I would just lay down my arms and give up because the thought of fighting feels so exhausting at this point. Why does it take so much courage to just live? And where has mine gone .........?

I remember waking up after my first surgery, with my face swollen, my mouth was wired shut, my leg bandaged, a hole in my chest to help me breathe and my body hooked to an IV and a feeding tube. I had had so much fear going into that surgery, but I was also so naive -- I had no idea what I was going to wake up to. No description that the doctors gave could ever have conveyed to me what it was that my body would experience.... I remember this same feeling of helplessness then. But somehow, through the haze of morphine and pain, I remember something inside me took over. Firmly but kindly ignoring my self pity and tears, something made me get up and insist on walking. This part of me was determined that I should live and heal and to it, the doctors' words and my own fears were completely irrelevant.
I had no idea I had such courage or strength but now I know from that experience, that there is inside me something that will support me when I hit that lowest point.

So, I am hopeful that I will get over this fear. I am hopeful that my courage will return. In the meantime, I will let myself be strengthened by those that love me. I am so grateful to André, for his love and kindness. He drove me to L.A., held my hand as we talked to the doctor, and comforted me as I sobbed. I know that he will stand by me through all of this, and that is a comforting thought. And I am so fortunate to have wonderful friends -- all of you who wrote and told me that you care, that you will hold me in your thoughts and send me your prayers. I deeply appreciate that. My mind seems to love to throw pity parties and drag me to a place where I feel that I am alone and isolated --- I read your e-mails then and reassure myself that I am not. So, thank you for your words and support. They mean a great deal to me.

This weekend, I intend to just BE. While André focuses on getting ready for his classes, I will try to stay in the present moment and not let my mind paint horror pictures of the future nor drag me back to the past. Mira will help me with that -- a six year old has such a keen appreciation of the present.

Monday will come soon enough and I hope that my courage will return by then.

Thursday, January 20, 2011

The first entry

Dear friends,

I didn't think I would ever blog but circumstances have created a need for me to "talk" to you and tell you what is happening with me. Though I should love to talk to each of you in person and receive from you the comfort that you will extend to me, this is likely to be exhausting for both of us, hence the efficiency of this blog to update you, though I still hope to hear from you and receive your uplifting thoughts and wishes.

Some of you know that I ended last semester with a pain radiating down my right shoulder and arm that I assumed was due to a pinched nerve. My physical therapist friend, Jennifer, tried to help relieve the pain but was astute enough to insist that I go see a doctor. In fact, good friend that she is, she made the appointment for me and went with me to get MRIs done and we discovered that there is a "mass" on or close to my spine, at the bottom of the cervical spine. Masses are always suspect, especially in one who had cancer, so the doctor insisted that I get a CT scan done as well, which revealed yet another mass on the outside of the right lung, and perhaps some other spots, as yet undeterminable.

The awful thing about having had cancer is that it marks you permanently -- not just the scar that I carry on my face, but that anything amiss brings back the ghost of recurrence. It's like walking with a big C painted on you ... and for that reason, I have avoided doctors since my surgeries in 2006. Yet, it looks like I can't avoid them anymore. As much as I would like to believe and hope that this is some sort of infection, there is a good chance it is cancer, and very likely a recurrence of the sarcoma, which is a rare cancer, so not good news.

I found all this out on January 6 and since then, I have just been trying to accept emotionally that I may have to deal with this again. Many of you know that I've often referred to my cancer journey with gratitude because that journey taught me many valuable lessons and I grew a lot, but as of last week, all I felt was that I was done learning. I want to go to a different school where the lessons aren't delivered in quite so hard a format!

While I await that transfer though ..... I wanted to share with you what I am doing and ask for your support. The last time I went through this, Andre and I were so scared and felt so isolated -- not that we were, but we did not reach out to our friends for fear of burdening them. This time, I am wiser -- I trust my friends to know whether they can give and how much they can give. I've also learned what a privilege it is to reach out and help another person and that it is not given to me to deny someone that privilege. So, I am sending this message and going to maintain this blog to tell you what I am doing and feeling. Being able to share my feelings with you lightens my heart ..... and I deeply appreciate you for that.

Here's what is happening now -- since I never had an oncologist, my first order of business is to find one who can help and support me through this. The problem is if it is a sarcoma, they are very rare and there aren't many experts and we've been told that there are none in San Diego and we should not expect to stay here for treatment. Fortunately, my last journey has equipped me with friends who have great advice to give this time. I met another woman who had a similar diagnosis to mine (a wonderful, kind person) and she has recommended a sarcoma oncologist, Charles Forscher, at Cedars Sinai in L.A. Andre and I go to see him tomorrow at 9 a.m. Another friend is arranging for us to go to the Mayo Clinic in Minnesota, though we're not sure when that would happen.

Today I also met a pair of wonderful, decent doctors at the San Diego Cancer Center in Encinitas. Dr. Vicario is an integrative oncologist and has said that he will support me through this journey while I go to whichever expert is right for me. Dr. Brenner is a physician and counseling psychologist. Their compassion and caring today made Andre and I feel so hopeful. So, I have doctors close to home whom I feel I can trust and with them in my backyard, I travel to L.A. tomorrow hopeful that we will find out soon what exactly this is.

There will be more appointments next week and more news. I am so grateful to Janet Powell, Annette Daoud, Sonia Perez, Marcia Woolf, and Teresa Shallow who have told me to focus on myself for this next week and do what I have to to get a diagnosis. I will miss being in the Faculty Center for the start of the semester but I hope that I will be back soon.

Please keep me in your thoughts and send me your positive energy -- I have been uplifted by it before and I know that I need it now. Thank you for being my friends and for sharing the weight of this news with me. I'll post again soon.