At George’s sleepy request (he’s well into the nap zone) I will do the update today (me being his loving and devoted wife ♥). Busy day! The wheels are in motion and appointments being made like crazy. On the way to the Radiologist Oncologist we got a call for an appointment for an emergency ultra sound for tomorrow at 7 a.m. This is to check to see if there are any other affected areas above his waist line. The R/O doctor we saw today has given us his game plan. He will be working closely with the Chemo Oncologist in developing a major attack both the tumor and the spot/s on his liver. They plan on doing both radiation and chemo therapy at the same time, chemo actually makes the radiation work better. The radiation treatments will be daily and very aggressive lasting for between 3-5 weeks. Their hope is to shrink the large tumor considerably and get it under control and shrink the spot/s on his liver. The doctors are thinking/hoping that only one of the spots on his liver are related to the tumor. They will know more after his scan on Friday. Before the radiation can begin there needs to be another scan done where the R/O doctor can see the tumor and plan his attack on the sucker. He will actually map out the areas where the radiation is to go and where it isn’t. I’m going to leave the rest up to my husband….he will probably correct me here and there and add some of his own words. Love to you all; keep doing what you are doing…..it’s working! heart emoticon
Well OK BC health care system! Or at least the few doctors who have taken an interest in me and my faulty parts. I’m impressed so far.
Dr. Shan (Chemotherapy Oncologist) just called me in person to make sure the nursing team reached me about the radiology consult for tomorrow.
Now she wants to move up the next CT scan an earlier date to check my lungs for reasons that are about to become clear.
She has also had a consult with a liver specialist who says the “innumerable” lesions on my liver might not all be related to the cancer. In fact, it is possible that only one of them is. They want to get up close and personal with it via ultrasound and see if he is right. If the ultrasound doesn’t provide a clear picture, they want me in Vancouver for a PET scan in a few weeks.
What this all boils down to is an outside chance of really good news. But only if the lungs are clear so far. Like, maybe even surgically remove all of the cancer.
She made it really clear that she didn’t want to get my hopes up too high or too early, but that we need to get more information quickly.
So fingers crossed everybody. Send good vibes.
Just got a call from the cancer clinic. A cancellation opened up an appointment for me tomorrow with the radiation oncologist. Yay! less waiting and more action.
Well that was a pleasant evening last night. The co-op social committee hosted a 1950s “sock hop” in the clubhouse complete with a dj and and live performances by the lip synch versions of the likes of Sonny & Cher and The Blues Brothers.
Watching the dance floor moves, I realized that these dancers were in their teens and twenties when the twist was a daring new dance move. Clearly a lot of these people were reliving some fond memories.
The dj made Wendy a little teary when he played our wedding dance song. We danced a little and ate a little and chatted with our new neighbours a little. Mary and Aurell (Wendy’s folks) joined us and must have had an ok time because they said they would do it again.
It was a bit strange to sit through the whole thing without drinking. I tasted Wendy’s caesar but just didn’t want any. Who needs it when I have the best drugs money can buy? And no hang over this morning! Nice.
Looking forward to breaking out the Mexican Train dominos with Amy & Ramsey & whoever else shows up today. But now its nap time! What a great weekend.
There was nothing further the Gastro could do or say for me today because I have already seen the Oncologist he would have referred me to. So that appointment for today was cancelled.
So the plan goes thusly:
Sept 25th; Nutritionist
Oct 6; CT Scan to check lungs etc for further metastacy.
Oct 9; Consultation with Radiation Oncologist
Oct 15; Surgical insertion of a catheter port so they can stop poking holes in me.
Oct 21; Followup with Chemo Oncologist.
Somewhere in there the radiation treatment should get done as well but I don’t get a date for that until I see the Radiation Oncologist.
Wendy is trying to make me fat again. Gotta go eat ANOTHER bowl of ice cream. What a life I lead!
Ok. So its about as bad as it gets. Stage 4, metastasised, likely incurable. The average survival time is around 2 years. There is no identifiable cause, so I can’t even blame anybody or anything.
We’ll be doing a radiation treatment to try to reduce the size of the bowel tumor, and then try a round of chemotherapy to see if it gets us to a point where we can even consider surgery. If the radiation doesn’t work they’ll have to surgically bypass the tumor (colostomy) before they can try chemo.
In the meantime, more CT scans to check the lungs & such & hope the liver is the only organ involved.
I hope I got this all correct. Wendy was there and wasn’t nearly as stoned as I was, so she may have corrections.
No witty words to leave you with at the moment. I’ll take an extra dose of morphine, a nap and get back to you on that.
Headed for the clinic for the first time this afternoon. They said to be prepare to stay for 3 hours, so I expect to arrive home a pretty pooped puppy. If I don’t post tonight, I’ll try to get to it first thing in the morning.
Not much happening the last few days. Its hard to write anything here if there is nothing interesting to say. Everything I come up with either seems trivial or egotistical. Either I can’t imagine anyone being the least bit interested, or I do imagine everyone reading it and thinking, “who the Hell does he think he is?” So, however you find these few words, I hope some of it is interesting and not all of it makes you want to put a pillow over my face.
People change when they know you have cancer. No huge revelation there, I know. Cancer changes things. I’m sure I have changed as well but the change in others is more visible. Everyone is more patient, more courteous, less likely to disagree with my opinions, and there is a sadness or sympathy in their eyes. Or maybe I’m completely full of shit and one of my own changes is a hyper-sensitivity to the behaviours I see in others.
And people don’t know what to say. This is a truth of tragedy. Whether death & dying, disease, divorce or natural disaster, people have no idea what to say to those who directly suffer the losses. I know I go stupid the instant I hear someone tell me a horror has touched their lives. Its not just the shock of hearing about it for the first time either. I could learn someone suffered a terrible loss and have weeks to think about it before I next see them in person. As soon as they enter my field of view my brain will shut off. Blink! I have no fucking idea what to say. I know how hard it is to find the right words.
But I don’t want people to change. I want everyone to treat me exactly the same as they did three weeks ago. I don’t mean I want people to ignore the fact that I am sick. I just want them not to let that news change the way they feel about me. Pretend, for a moment, I have a broken leg or a concussion. Most of you would laugh at me, scold me and/or wonder aloud what the hell I was doing on a skateboard anyway. That’s all I want. If you have questions, ask them. Opinions? State them. Advice? Offer it. Just don’t treat me like I’m already half way across the Styx.
The fact is, there are no “right words”. At least not in the sense that these particular phrases suit the discovery of Cancer in someone’s body. What suits one person will undoubtedly offend another. If we’ve been close enough friends that your gut reaction is “Holy fuck man! Are you dying?”, I don’t want to hear how I and my loved ones are in your thoughts and prayers at this difficult time. Just be real my friends. Be real.
Today I’ll leave you with the words of 15 year old, Jack Carter, boy genius and my star employee at the Google Cardboard shopping mall carts. We split a platter of chicken wings the other day while I explained why we aren’t reopening the business right away. When I told him about the cancer he never hesitated. He just smiled at me and asked, “Whats on your bucket list?!”
A couple of weeks ago, a laxative I took to prepare for a colonoscopy damn near killed me. The abdominal spasms and cramps first made me think I was dieing and then they got bad. Then worse. Until I HOPED I was dieing. So, the day after we moved into our new home, the neighbors watched me leave by ambulance. What a great introduction!
On Labour Day, the first Dr. saw the CT Scan results. A 9 cm mass was completely encircling and constricting my bowel just 5 cm inside me. Imagine tying a knot in a balloon and then trying to force stuff through the knotted section by squeezing the balloon. TMI?
The Scan also showed spots on my liver that suggest metastacy. The scheduled colonoscopy turned into a very brief biopsy exploration. I watched it on TV. Anyone want to read about it?
The biopsies delivered the classic good news/ bad news results. Good; the polyp taken from the wall of my lower intestine was benign. Bad; the chunk of the mass itself was not. The official words are “Invasive Adenocarcinoma”. I’ll let you Google that one yourselves if you want to know more.
That’s all I know so far. I see an Oncologist on the 22nd and the Gastro Dr. again on the 24th. Then we will know more about prognosis, odds & that sort of stuff.
For now, I’ll leave you all with the words of a young nurse from the emergency ward who clearly didn’t know quite what to say, “bowel cancer is a pain in the ass”.
I’ve added you all as members of this group so you can choose to follow me on this road, or not. It’s entirely up to you.
I’ll write here as often as I can on topics that interest me from time to time. I’ll log the medical steps, the good and the bad, and try to be reasonably informative without gory details. If you find it distasteful, overwhelming, just plain gross or objectionable in any other way, you can remove yourself from the group. I’ll understand.
If I’ve missed anyone that you think should be in the group, please add them.
Your comments, suggestions and constructive criticisms are welcome.
I Love You All,