Friday, January 9, 2009
Update
Well, here I am with a sore throat but at least I know why: on top of everything else, I was diagnosed with a fungal infection of the mouth and am now on a round of diflucan for ten days. The person who diagnosed this latest event is Dr. Robinson, a dentist in the stomatology dept at UCSF. I went there yesterday for a pre-radiation consult to make sure my teeth were strong enough for me to undergo radiation to my face (they are). The alternative (not really an option in my mind) was to have whatever offending teeth extracted prior to treatment. How many times and in how many ways can I mention that having cancer sucks?
Tuesday, October 21, 2008
Serendipity
Yesterday I met with oncologist Dr. Alan Kramer. I liked him a lot from the minute I first saw him, which is while I was in the reception area of the office, filling out forms. My nose started bleeding and he took immediate note of that. Terrified of the information I was about to learn in this meet, I was shored up by Deb Grabien and Bethy Levy who never left my side during the entire time. It was more than a comfort to have them there, it was a blessing and as it turns out, completely necessary because they heard things that I did not!
I felt so good when we first went in to the examining room and there were photographs of Sanatorini and Ephesus on the walls - all taken, I might add, by the good doctor himself. Although it is not really my impression of Greece, the classic impression most people who are not Greek have of that country is the pictures of the white washed, blue roofed buildings of Santorini. Yeah! Then the doctor came in to the room and examined me and interviewed me, taking copious notes of everything I said and not bothering to hide his disgust at the fact that I had suffered these symptoms for several years, and consulted many medical opinions about them, before the diagnosis. Yes, this should have been caught long ago. But it was not and it is what it is.
During the interview, Dr. Kramer asked me what I did for a living and I told him. He said "wait here, I'll be right back" and while he was out of the room, I asked Deb and Bethy if they thought the doctor was a Deadhead. Could be... Jewish, Brooklyn, right age... he definitely fit the demographic -- so when he came back in the room I asked if he was a dead head... he said no but one of his patients was the guitarist who took over for Jerry Garcia... yes, we had in our own way stumbled upon on Mark Karan's doctor (and the funny thing is, the night before this visit, I emailed David and asked if he would have Mark call me).
Signs are definitely pointing toward my choosing Dr. Kramer even though he said he really cannot help me directly with chemotherapy, he referred me to a surgeon at UCSF whom I will see on Friday. I just pray that this surgeon can remove the cancer and leave my nose adhered to my face!
And by the way, I called Mark last night and we had a long talk about the disease and the changes in our lives because of it. He is a wonderful resource and a very special person. I have every confidence that I will beat this disease, with a LOT of help from my friends.
I felt so good when we first went in to the examining room and there were photographs of Sanatorini and Ephesus on the walls - all taken, I might add, by the good doctor himself. Although it is not really my impression of Greece, the classic impression most people who are not Greek have of that country is the pictures of the white washed, blue roofed buildings of Santorini. Yeah! Then the doctor came in to the room and examined me and interviewed me, taking copious notes of everything I said and not bothering to hide his disgust at the fact that I had suffered these symptoms for several years, and consulted many medical opinions about them, before the diagnosis. Yes, this should have been caught long ago. But it was not and it is what it is.
During the interview, Dr. Kramer asked me what I did for a living and I told him. He said "wait here, I'll be right back" and while he was out of the room, I asked Deb and Bethy if they thought the doctor was a Deadhead. Could be... Jewish, Brooklyn, right age... he definitely fit the demographic -- so when he came back in the room I asked if he was a dead head... he said no but one of his patients was the guitarist who took over for Jerry Garcia... yes, we had in our own way stumbled upon on Mark Karan's doctor (and the funny thing is, the night before this visit, I emailed David and asked if he would have Mark call me).
Signs are definitely pointing toward my choosing Dr. Kramer even though he said he really cannot help me directly with chemotherapy, he referred me to a surgeon at UCSF whom I will see on Friday. I just pray that this surgeon can remove the cancer and leave my nose adhered to my face!
And by the way, I called Mark last night and we had a long talk about the disease and the changes in our lives because of it. He is a wonderful resource and a very special person. I have every confidence that I will beat this disease, with a LOT of help from my friends.
Monday, October 20, 2008
Not To Sound Ungrateful, But...
As a patient, I think it is MY job to concentrate on getting well. It is NOT my job to gather and fax reports to and from this and that medical office. It just isn't. If I was well enough to do things like that, I probably would not be seeking treatment.
And ok, I am lucky to have so many very good friends who offer to help me out. But if you are going to offer to help me out and we set up something (such as a ride into San Francisco for a consult), it really is no help if you arrive so late that I miss my appointment or that you don't show up at all (and don't call). If you cannot help, do not offer. It is as simple as that.
And ok, I am lucky to have so many very good friends who offer to help me out. But if you are going to offer to help me out and we set up something (such as a ride into San Francisco for a consult), it really is no help if you arrive so late that I miss my appointment or that you don't show up at all (and don't call). If you cannot help, do not offer. It is as simple as that.
Sunday, October 19, 2008
More Symptoms
Damn! I just combed my hair and left about a cupful of it in the bathroom sink. Now, that would be expected if I was being treated using chemo therapy but I have not yet started ANY treatment.
I slept all day. I mean, ALL day long. I awoke for the first time at 5 AM, fed the dog and went back to sleep. Awakened at 11 AM when Koukie decided it was LUNCH time and jumped on the top of my head. Fed her again and went back to sleep. Got up around 4 or 5 for a few minutes and again, went back to sleep. Woke up a couple of hours ago and realized I had missed the entire day. And now I need to get to sleep because I have an appointment tomorrow with an oncologist.
I remember after my father had his brain surgery, he was up all night, most nights, roaming the house. We thought that was caused by medication but now I wonder if that is not a symptom of a tumor?
Bad tumor! Bad! Go away. Michelle McFee. Healthy. Now.
I slept all day. I mean, ALL day long. I awoke for the first time at 5 AM, fed the dog and went back to sleep. Awakened at 11 AM when Koukie decided it was LUNCH time and jumped on the top of my head. Fed her again and went back to sleep. Got up around 4 or 5 for a few minutes and again, went back to sleep. Woke up a couple of hours ago and realized I had missed the entire day. And now I need to get to sleep because I have an appointment tomorrow with an oncologist.
I remember after my father had his brain surgery, he was up all night, most nights, roaming the house. We thought that was caused by medication but now I wonder if that is not a symptom of a tumor?
Bad tumor! Bad! Go away. Michelle McFee. Healthy. Now.
Saturday, October 18, 2008
MRI
I am finally feeling well enough to write about my MRI experience this past Thursday. What a way to celebrate Bobby Weir's birthday! OK, so Weir had absolutely nothing to do with this but it is strange, the things you remember when you are freaking out.
It was an "Open" MRI as opposed to the cigar tube thing, but I was still terrified of it (even though I have been through MRIs before, as well as the PET and CT scanners) - especially when they brought out this weird plastic mask (sort of like a fencing/hockey/catcher's mask), put it over my face and BOLTED it to the bed of the machine. Thank God one thing about me that works is my heart or I would have had an attack right then and there. And the mask had a very large, open grid, so I could reach out and touch my face or breathe or whatever. I went through my speech about Marsha Gatto's uncle, Dr. Albert Overhauser, being the person who developed the theory that led to MRI (and earned him the National Science Medal in physics) and how the effect was called the "Overhauser effect" and the opposite effect, obviously, the "Underhauser effect." I guess the techs decided they had enough info and wheeled me into the machine, seemingly unimpressed with my tenuous connection to their technology.
It was sort of like being inside an egg during sound check - I kept hearing the kick drum and the low G on an electric bass, arguing with each other over and over. I started thinking about what David said the other night and silently chanted "Michelle McFee. Healthy. Now." I ran the phrase through my head the suggested 21 times and felt a little better after that. And I replayed in my mind a telephone conversation I had with a good friend a couple of nights before that and the memory of that conversation and what was said got me through the scan with my sanity in tact!
Early Friday afternoon, Dr. Engel called with the results of the MRI. As shown on the PET scan, the tumors are at the bridge of my nose and there is one tumor in one lymph node in my neck. The bump near my eye did not show as tumor so it is probably a little pimple (OH PRAY for that to be the case!). Dr. Engel also said he has not yet heard back from MD Anderson but hopes to have a referral for me on Monday.
And I finally scored an appointment with Dr. Kathleen Grant, apparently the most popular oncologist in San Francisco. I see her November 5 unless there is a cancellation before then.
Still no word from Social Security on the Medicare issue. Damn! I know it will all be resolved but sooner rather than later works for me - this is cancer, for God's sake, not an ingrown toenail.
It was an "Open" MRI as opposed to the cigar tube thing, but I was still terrified of it (even though I have been through MRIs before, as well as the PET and CT scanners) - especially when they brought out this weird plastic mask (sort of like a fencing/hockey/catcher's mask), put it over my face and BOLTED it to the bed of the machine. Thank God one thing about me that works is my heart or I would have had an attack right then and there. And the mask had a very large, open grid, so I could reach out and touch my face or breathe or whatever. I went through my speech about Marsha Gatto's uncle, Dr. Albert Overhauser, being the person who developed the theory that led to MRI (and earned him the National Science Medal in physics) and how the effect was called the "Overhauser effect" and the opposite effect, obviously, the "Underhauser effect." I guess the techs decided they had enough info and wheeled me into the machine, seemingly unimpressed with my tenuous connection to their technology.
It was sort of like being inside an egg during sound check - I kept hearing the kick drum and the low G on an electric bass, arguing with each other over and over. I started thinking about what David said the other night and silently chanted "Michelle McFee. Healthy. Now." I ran the phrase through my head the suggested 21 times and felt a little better after that. And I replayed in my mind a telephone conversation I had with a good friend a couple of nights before that and the memory of that conversation and what was said got me through the scan with my sanity in tact!
Early Friday afternoon, Dr. Engel called with the results of the MRI. As shown on the PET scan, the tumors are at the bridge of my nose and there is one tumor in one lymph node in my neck. The bump near my eye did not show as tumor so it is probably a little pimple (OH PRAY for that to be the case!). Dr. Engel also said he has not yet heard back from MD Anderson but hopes to have a referral for me on Monday.
And I finally scored an appointment with Dr. Kathleen Grant, apparently the most popular oncologist in San Francisco. I see her November 5 unless there is a cancellation before then.
Still no word from Social Security on the Medicare issue. Damn! I know it will all be resolved but sooner rather than later works for me - this is cancer, for God's sake, not an ingrown toenail.
Monday, October 13, 2008
Just When You Think Things Could Not Possibly Get Worse
Second verse
Same as the first
Could get better
But it's gonna get worse...
This morning, I scheduled an appointment with the oncologist recommended to me by the radiation oncologist I saw last Thursday. Appointment is set for Friday at 3:30 PM. A few minutes ago, I got a call from the oncologist's office saying they could not see me - my primary medical insurance coverage ended on September 30 (not true) and my secondary insurance covers me but only in Marin County (again, not true). And today is Columbus Day, a day celebrated only by bureaucrats for an extra Monday off and some Italian Americans who are proud of the fact that Christopher Columbus and his boatloads of Spanish sailors brought VD to the Caribbean, so I can just suffer along here until I can straighten out this mess tomorrow. Do I sound pissed off? Believe me, I am. This new development just made me vomit blood for twenty minutes and it took all I could do to force myself to calm down. Thank GOD for those Otter Pops (Otter Pops, the new Martini, who knew?)
Sunday, October 12, 2008
Are These Side Effects of the Disease?
I wonder... for the past several days, I have been nauseated. Not in the way that I was when I was pregnant, just a little queasiness hiding in the background. I finally figured out that if I force myself to eat, the nausea subsides, which is a good thing. Now, since I am not yet on any treatment program, I have to wonder, is nausea a side effect of cancer as well as a side effect of some of the treatments for cancer? Does anyone know?
Also, from time to time I feel sharp pains in my right eye and dull pain in the left eye socket. God, I hope that does not mean that the cancer has spread out across my face and that it is only referred pain. Again, does anyone know about this stuff?
Lastly, I feel so weak and tired all of the time. I was always under the impression that this sort of thing happens with cancer treatment but maybe it can also be caused by the disease? Or I guess it could be that I am not eating enough (I don't think the equivalent of one meal every 2-3 days is working for me but it is really hard to get any food down). The good news is I did find a source of Otter Pops, so I bought a couple of boxes of 100 pops each. That should hold me for awhile (those things work much better than regular popsicles, they are smaller and easier to manage). The Otter Pops -or other varieties of plastic wrapped, push up popsicles (I really like the Wyler's Tropical pops but they are hard to find) seem to help with the bloody noses by cooling down that area of my face and constricting the blood vessels. And I like them very much.
Also, from time to time I feel sharp pains in my right eye and dull pain in the left eye socket. God, I hope that does not mean that the cancer has spread out across my face and that it is only referred pain. Again, does anyone know about this stuff?
Lastly, I feel so weak and tired all of the time. I was always under the impression that this sort of thing happens with cancer treatment but maybe it can also be caused by the disease? Or I guess it could be that I am not eating enough (I don't think the equivalent of one meal every 2-3 days is working for me but it is really hard to get any food down). The good news is I did find a source of Otter Pops, so I bought a couple of boxes of 100 pops each. That should hold me for awhile (those things work much better than regular popsicles, they are smaller and easier to manage). The Otter Pops -or other varieties of plastic wrapped, push up popsicles (I really like the Wyler's Tropical pops but they are hard to find) seem to help with the bloody noses by cooling down that area of my face and constricting the blood vessels. And I like them very much.
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