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.

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.

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.

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.

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?)

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.

The Empty Mirror

God, it is official, I looked in the mirror and the person looking back was not me - there was just a vapor trail of particles left behind as my soul departed. I blinked again and there was a face in the mirror but it was not my face. In the brief period since the diagnosis, my face has become swollen and puffy and my nose is an entirely different shape - Lyn verified this last night when we went to the movies. Yes, after all these years, I have finally achieved the Hayley Mills look. My formerly very straight nose is now a cute, turned up version of a nose. Great on Pollyanna, on me, not so much. And there are so many black heads on the skin of my nose - I wash my face every day but I cannot scrub there the way I used to, it hurts too much. I don't look like me. And you know what, I guess I actually had grown accustomed to my own face after all these years. I only hope the treatments will make me look like myself again.

ME Again - Treatment Options

My favorite subject these days!

Yesterday, I went in to San Francisco to see Dr.Tom Engel and I felt the conversation and the outcome were a bit overwhelming. OK, a lot overwhelming. He is very adept at not answering direct questions - so much so that I was tempted to ask him if he is running for president (but I did not do that, I was good). Dr. Engel felt very strongly that I have a good chance to beat this cancer - with radical surgery and/or radiation, which is what he told me on the phone. I finally nailed him down and he recommends trying radiation first. He did not think a visit to an oncologist would be helpful for this type of cancer and told me FLAT OUT that oncology is only for chemotherapy (Not TRUE). I told him I was considering MD Anderson Hospital in Houston and he said that was a good choice. He ordered an MRI (next Thursday) and encouraged me to keep my appointment with the radiation oncologist today. Dr. Engel did not feel the cancer had spread to my lymph nodes at all, based on viewing the actual PET scan in color he said he though the areas which lit up in my neck were areas of inflammation.

So today, I went back in to SF and spent 3 hours at Cal Pacific in Dr. Abendorff's office (spelling). I liked the doctor a lot and I liked the practice. This doctor concurred that the cancer is medium to advanced stage but he feels that it can be handled successfully with radiation and possibly, radiation and chemotherapy (with surgery as a backup plan) so he gave the name of an oncologist - Dr. Alan Kramer, whom i will see next week. Dr. Abendorff also said MD Anderson was a good choice and I really should go there for a consult, no matter what. I will do that and also maybe go to Sloan Kettering in New York. Working on getting appointments set up for Houston for the week of October 20. No matter where I go, I should start treatment by November 1. Dr. Abendorff DID feel there is involvement in ONE lymph node and that we can get it with radiation.

Some good news from Dr. Abendorff - I probably will not lose my hair (not that I have much left) and it is safe to get back into the dye pot (YAY!). Also, long term side effects of radiation are not completely awful - worst is a high likelihood of developing cataracts due to the nearness of my eyes to the radiated sites. During treatment, it will be as if I have a bad sunburn inside and outside the area being treated, but he did say that given the amount of irritation currently in my nose, probably not much different than the pain I am now feeling inside. Outside will be a little tough but at least I will have my face, even if I do develop dry skin (God, and I have worked all of my life to maintain my skin).

Other good news - Dr. Goldfarb called this morning with Koukla's blood test results from yesterday and she is doing WONDERFULLY WELL (as I knew).

The Results Are In

When I arrived at the medical office for the scan, the receptionist asked me a series of questions. Have you had chemotherapy? Have you had radiation? Things like that. And it hit me: I am now a cancer patient. All staff were very nice and compassionate and took the time to explain to me each step along the way as well as the why behind each step. I really appreciate that!

And the results of the scan came back: there is major involvement in my nose as well as some evidence that my lymph nodes of the right side of my neck have been affected. There is no other sign of any activity at this time (thank GOD). My doctor was most concerned with the lymph nodes and this will probably mean I will have them removed (I am not attached). But the scary thing is the amount of involvement with my nose - I could be facing extensive surgery that may mean removing my nose and using a prosthetic. How many different ways can I say NO WAY to that? Of course, if it comes down to my life, I will do whatever I have to do to stay alive. But I am scared to death.

I have consults set up for next week with my doctor and with a radiation oncologist in SF. After that, I will schedule consults with the doctors at MD Anderson in Houston, Texas, which is where Dr. Anderson (my former primary doc who is now retired but looking out for me, I love you, Jeff) thinks I will have the best treatment. Since Dr. Anderson is himself a survivor of this cancer, his opinion on this means more than usual. My sister actually reminded me, this morning, that cancer due to building materials and chemical exposure is a concern I have had since 1987 when Dr. Anderson first treated me for Multiple Chemical Sensitivity.

Welcome

Hi all!



While this blog is new, I am not new to blogging. But after reviewing my latest blog entries on my main blog page, it has become clear to me that I would be better off confining my posts about my illness to one specific site in the hope that other cancer patients will find my observations and experiences useful.



Basically, I have been having issues with my health for several years. In spite of numerous visits to a multitude of doctors, it was only last week that I was diagnosed with squamous cell carcinoma of the nasal septum. This is nobody's fault - nothing showed up until now. Here is a brief history:



In May of 2005, I noticed a little blood in my "morning sputum" - if you have allergies, you know that it is not uncommon to spit up mucous first thing in the morning. I went to the doctor where I was tested for problems with my lungs - not a stretch since I have had asthma all of my life. Nothing showed but as a precaution, I was given antibiotics and told to call back if the problem didn't clear up. Well, it didn't clear up but the problem was so small and intermittent that I didn't call back. A year later, it occurred to me that perhaps this blood was in my post nasal drip so I visited an otolaryngologist (ear, nose and throat doctor) who said he saw a small lesion high in my nose but "I don't think it's cancer." He cauterized the area and prescribed Flonase. The problem persisted so I went back to the doctor as a follow up. He said there was nothing new and to give the medication time to work. Yadayadayada.



A year later, I went to see a different ENT who told me that she saw nothing there. So I let it go. Meanwhile, the occasional bloody sputum had turned into occasional nosebleeds. I consulted a 3rd ENT (in the same practice as the 2nd) who told me there was definitely something in my nose but again, he did not think it was cancer. He did suggest I not use Flonase because it is too drying for the nasal passages, so he prescribed an ointment call Muciprocin (antibiotic) and told me not to use NSAIDs or aspirin, only Tylenol, if I had pain, or to call for a prescription. The nosebleeds increased and became so bad that I wondered if I was single-handedly supporting the Kleenex company. I returned to the 3rd ENT and he said the problem was worse and suggested a biopsy. That was earlier this year - April, I think. I was to call and set up an appointment to do this.



Before I could schedule the biopsy, I became ill with what turned out to be pancreatitis. I was hospitalized twice for that - each stay a lovely week at Marin General Hospital - and following the 2nd stay, my gallbladder was removed. It may be noted here that only once or twice during my hospital stays did I experience nosebleeds and as they go, they were pretty minor.



When I was sufficiently recovered from the surgery and the illness, I scheduled a biopsy. The news came back in one working day: cancer. That was one week ago today. A PET scan was ordered and performed and I am now awaiting the results of that test to see if the disease is contained and where exactly in my nose it is located.