Thursday, August 23, 2007

the mustard post

So if you read the second post, you know that after I ketchup, I mustard. And if you're clever you'll realize we all mustard.

Stop me if the puns aren't funny any more.

So it's last Wednesday and Jody and I are walking out of the building to her truck in a daze. She hasn't got any leftover twilight drugs to dull her senses so what's important to me is getting some lunch. We pray over what we've just learned. I have enough awareness that I begin with my own admission that I believe nothing happens outside of God's will and, though I've just been handed a big problem, I'm okay with that because I know I wont' be tested beyond what I can take. Obviously I don't know why this has happened nor am I terribly happy about it, but I believe it's what I'm supposed to be doing.

That evening we make calls to our parents and it's not easy. Though I'm praying specifically to be freed from feeling sorry for myself, I break down thinking of some of the things I'm afraid I'm going to miss. Right away I'm sorry the new car isn't going to turn out the way I wanted. I've always dreamed of driving cross-country and camping out along the way to see cool places like Yellowstone and the Badlands and the north rim of the Grand Canyon like friends of mine did after college forever ago. I want to hike the West Highland Way in Scotland. I want to see the northern lights. I want to have kids with Jody and raise them. I fall asleep from exhaustion more than anything else, but I know I have work to do.

Thursday begins with calls to the specialists Dr. Shih had referred me to. The surgeon doesn't take Kaiser patients. (I begin cursing Kaiser and the anger at my old doctor continues... it was his group and everyone there constantly whining about Aetna that forced me to switch.) The oncologist does though and I make an appointment. The first surgeon's office gives Jody another name of a fellow at GBMC who does take Kaiser patients so I get an appointment with him. I am not going to see Dr. Shih at the followup without having obeyed his orders. I call my primary doctor's office and explain that I need referrals. They will have to come as fast as they come and I begin to spit whenever I have to say the name, Kaiser.

That evening I began emailing my friends and family in small batches. I thought I'd be able to keep them in good order, but the responses and replies quickly overwhelmed me. It was a good thing to see so many people who cared and the abundance was what led to this blog being started. :)

Friday already had a PET scan scheduled before the bad news came. I'd made sure the scan would cover my lower abdomen to help define the colon cancer I now knew was there. Bada bing. I get all hooked up with the IV and the radioactive sugar and I lay strapped to the scanning bench and begin to wonder if how my arms are strapped over my head is or isn't allowed by the Geneva Convention.

That afternoon I missed a message at work from my doctor whom had early results from the PET scan and wanted to talk. When I got the message on Monday, I figured it must not have been really bad because he would have tried my celphone or even the Vonage phone I listed for "home" on my papers. Again, little did I know.

Saturday passed with just a little shocker to Jody's friend Michelle as we ate lunch. Jody and I went to the movies to see The Bourne Supremacy. (very good, two thumbs up) That evening I wrote some more batch emails to friends and tried to wade through the family replies. Sunday I was realizing the difference between "feeling" bad and "knowing" there was something wrong inside me. I wasn't feeling any different than a few days before but what I knew threatened to bum me out.

Monday arrived and there was apprehension all day before meeting with Dr. Grasso at GBMC whom I was consulting with to have the tumor removed with surgery. He had a copy of the PET scan report and was the one who revealed to us that the tumor had metastasized and appeared to be spreading to my liver and my right lung. Jody was hit by a truck again. I didn't fare much better. I hadn't really ramped myself up for that possibility even though I knew the PET scan was being done originally just to make sure the shadowy spots in my lungs were or were not cancer.

Dr. Grasso examined me and we talked about the two courses of treatment. It would be either surgery first and therapy later or therapy, surgery, and more therapy. The possible complications of therapy first may mean the tumor swells and blocks what bowel function I have now. Not good. He was glad to hear I had been PET scanned but he wanted to see a CT scan with contrast and to share the films with the specialists in the Cancer Center for their experience and advice. He also wanted to discuss the two options with the oncologist I'd be seeing the next day. Jody and I left and I made the CT scan appointment.

I really really wish I were speaking in the distant past tense right now but this was only Monday of this week. :(

We both broke down when we got to the truck. We prayed again and I grabbed on for dear life to my belief that I'm supposed to be strong enough to face this. Jody got us home. I just stared and stared in disbelief but this is the test I've been given.

I had another appointment to get a referral for so I started the process. I'd had enough of Kaiser and I wanted answers. There -had- to be a faster way to get these referrals. If they cannot keep up with me, we were going to wind up in a lawsuit. I calmly rang the patient services line and explained that I was not happy. Referrals had arrived in my mailbox two days -after- the procedure I'd been referred to have. Who could I speak to to hear my complaint... and help me figure out how to speed this process up?

I was directed to a case manager in Annapolis and I dug in for that phone call. To my absolute delight I was rewarded with answers, explanations, and sympathy. No I had not reached the correct person, but she would be getting my information by morning and I would be very well taken care of.

I no longer cursed Kaiser. I was actually looking forward to their help.

In the morning I made contact with the right person. Denise assured me she was there as my advocate. She inundated me with contact numbers and challenged me to send anyone with anything I needed right to her and she would make it happen. I have not met Denise yet, but I will kiss her when I do. ;)

Denise immediately slashed through red tape that very afternoon. Tuesday was the day Jody and I would meet Dr. Lee; my oncologist. She shed more light on what I can expect from therapy. I will most likely have to go through radiation treatment and about 50% strength chemotherapy before surgery. That is expected to start shrinking the cancer to help make surgery go a little easier. I expect she has already spoken with Dr. Grasso about this approach thought I will find that out for sure later today.

Dr. Lee was also able to alleviate some of my fears about therapy afterwards. If approved, my chemotherapy will be tailored to me and delivered as a pill. If not, I will have to visit for intravenous chemotherapy on a daily basis for five or six weeks. Radiation treatment will also apply. However, I should not be missing a lot of work nor be terribly sick at home. I will still lose my hair, but it will be as Mother Nature intended instead of all at once as a consequence of cancer treatment. So, Steve, you get to keep the monopoly on the Mr. Clean look.

Tuesday was a really good day after being crushed so hard on Monday. :)

Yesterday was a light day with only the second CT scan for Dr. Grasso. I froze my tuchus off for two hours in the lobby at American Radiology only to spend a whopping ten minutes on the scan table again. (yeesh) I got films for the doctors (PET for Lee, CT for Grasso) and I dropped by Dr. Morog's office to drop off another script; a radiation treatment consultation next Tuesday. That may be the day my formal pre-surgery therapy starts but I will clarify that with Dr. Grasso today. While I was at Dr. Morog's office I shared Denise' contact information with them and got to chat with Dr. Morog for the first time since all this fecal matter struck the oscillating room-cooling apparatus.

Dr. Morog was sincerely sorry for what had transpired. He wants to stay informed and simply asked me to have all the specialists send him reports on what's happening to me. I apologized to him for missing his call on Friday but I was a little thankful that I got to wait until Monday to hear the really bad news. I really value his attention and I feel the nonsense with my insurance change was really for the better; even if his office took me on outside of normal acceptance. I am really grateful to have a doctor that cares about me finally.

Meanwhile, my track day friends have floored me. When I'd emailed them to break the news, I also asked for some help in getting the BMW at least back onto its own wheels so I could consider selling it. They're having none of that and they're getting organized to descend on the car and fix it for me. This all happened in a matter of an evening. By the time I got caught up on all the messages, I was in tears. Ed, Jeremy, and James have rallied to get the car rolling again and into Ed's shop for a weekend so that it can be made right. Jason said they would have the car ready for me so I could get well and be ready for it. I have been so blessed to have made friends with these guys. I thought I was already in good company just driving with them. :sniffle:

So, you see? I told you by the time I got to Monday and Tuesday things would be more positive. :D


Sammyl69 said...

keep up your spirits. After having acid reflux disease I learned to always take a "hospital pack" ---jacket, laptop, video ipod loaded with movies.

Take it even if they say "it will only take 20 minutes" Five hours of waiting later you'll be happy you packed heavy!

Jolene said...

"fecal matter struck the oscillating room-cooling apparatus." You crack me up!

Hang in there. It is a long road but please know we are here to support you and Jody the whole time. We also deal with Kaiser and have a specific case worker and a "global referal" for all of Samantha's care.


Scattered Gemini said...

What truly wonderful friends you have!