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.

10 comments:

  1. Yeah- thanks for posting. Your blog is open in a window and I periodically refresh while I am working on a grant (aka I am dying to know how today went and you are a good excuse for procrastination).

    I am relieved that you were able to get some good information. I think doctors never know all the answers, just try to sort through the unknown with all their previous experiences. I always used to think that it would be so much better for the patient if the team of doctors met up beforehand and came up with a game plan and got their story straight. But hey- at least they are talking to you, if not to each other.

    Keep us in the loop (I will keep my browser open).

    Love,
    B

    ReplyDelete
  2. Dearest Radhika,
    How I laughed at your excellent suggestion of comparative punching of doctors as a way to test your strength!!! In this blog, as you are interpersonally,you are eloquent, stylish, and true. You are contributing a wonderful chapter to the literature of illness experiences--I am glomming and savoring EVERY word. I just want to make sure you know, though, that if you happen to have some moments when you are not witty, brilliant, eloquent, stylish, etc. there are many people who will love you just as much, if not more. Please count me in that group. We love your words and wit, but you will still be you if you're nauseous, incoherent, etc--and it's you we love. I'm privileged to be part of any journey you're on, Radhika.With a full heart, Martha

    ReplyDelete
  3. Like Bianca, I have your blog open all the time in my browser and keep checking for posts. I was so happy that you had the energy to post last night when you got back from LA. I had been checking on and off at the end of the day.
    I have been thinking of the concept of a 'medical home' -- that's when one doctor takes charge of managing the flow of information and decisions across a team of providers alongside the patient. I wonder if someone at Cedars uses that concept (Forscher maybe?). Clearly not yet, but maybe it can happen.
    I was really relieved alongside you with the surgeon's assessment of no spinal surgery.
    And also I want to comment that, Radhika, with this blog you have created a community not only for yourself but for us. I know that I am deriving comfort and a sense of belonging to a special group by reading everyone else's posts here along with yours, learning the different ways to provide support to someone we love. Thank you for what you have created here.
    And I want to second Martha's comment that we love and support you when you are at your most eloquent and witty and when you are at your most depressed and uninspired. It seems like you are feeling free to be just who you are as you write this blog and that's good, because we all know that we ourselves have a multitude of moods and we too want to be loved in all of them.
    Vivienne

    ReplyDelete
  4. What Martha and Vivienne said...

    I felt nothing less than a thrill as I read your post title and sensed your humor come back. This is about you, not us, and you needn't entertain, but I have to say that it did do my heart good to visualize you punching this fellow. You are an inspiration, R, and everything you are doing is alright.

    ReplyDelete
  5. Radhika, Ditto to everything above! It is great to hear a bit of your humor, it brought a smile to my face! You have some friends with very eloquent voices, I can only add that I am thinking of you many times a day. Thank you so much for keeping us informed, it helps knowing what is going on, with or without the humor! My best to you my friend. JP

    ReplyDelete
  6. Well, Radhika, a surgeon who didn't want to cut into you! Will wonders never cease??

    I know I'll feel a whole lot better when your MDs contact you with treatment options. I hope they pool their collective wisdom very soon.

    As others have said more eloquently than I can -- thanks for taking us on this journey.

    Love,
    Marie

    ReplyDelete
  7. Marie, I thought exactly the same thing... as soon as I read that bit about NOT wanting to operate, I had to grin to myself, thinking of our Heroine's last post.

    Oh! Miss Radhika! You are SO LOVED. I find myself thinking of you every few minutes... You are constantly in my thoughts and in my heart.

    I'm so happy to see your spark today. Keep it burning, my friend.

    ReplyDelete
  8. Ah ha . . . there you are -- generating some of that full of fire, spunky, funny, witty Radhika! Look out docs, here she comes! I hate it when they don't agree and then blame eachtoher. Take them on, challenge them and get your answers. I am sure you have a great team of docs but don't stop asking your good questions. You made me smile tonight and for that I thank you. Please know that I am praying for you, Andre, Mira and your doctors. Thanks for posting tonight and sharing the news. Leticia

    ReplyDelete
  9. Your comment about wanting to hit the doctor made me laugh out loud. It reminded me that a certain daughter of mine who-should-know-better-but-who-was-in-a-lot-of-pain kicked her doctor not so long ago. It was at the end of a long consultation and the doctor still needed to check her knee reflexes. The doctor said to kick, so she did. She angrily said that the doctor asked for it! The doctor and I had to smother our giggles/tears because we couldn't let her know how funny/sad it was.

    I am SO relieved to hear you have a good painkiller now...good...good. Here's to hoping the pain meds give you some peace of mind moving into the next chapter. You are in our thoughts, Kim

    ReplyDelete
  10. Hey Radhika, I get what you mean about not wanting to hear how rare or special you are. Sometimes you don't need to be the "one of a kind," "oh so interesting" person in the bunch.

    Of course, the situation from your friends' point of view is that you ARE special. We just wish you weren't quite so special in the medical sense! As a person who struggles with writing, I don't even know how to say how special you are. I can only say that my work days are cheerier and my Thanksgiving holidays are more sparkling when you are present. Your humor in the face of the medical stuff doesn't surprise me--even when we go through bouts of crap at work, you are able to bring a smile to my face with your witty take on things. That being said, I don't expect you'll want to smile through all the medical gunk to come. As your friend, I'll work on being more "Radhika-like" and less cranky in order to keep the universe in balance. Maybe like carbon credits or something? We can start an exchange. I'll do an extra something positive if you are having a bad day. You'll let me know, right? I wouldn't want to shock the world with a complete personality change. 8 - ) Janet McD

    ReplyDelete