So now the real wait begins. The radiation is still doing its job, awaiting the surgeon’s call and the reality of how much “Harper” has shrunk. George’s immune system is and will remain compromised for an unknown length of time to come. We need to continue beefing him up so he will have the strength to recover from 2 major surgeries and the next round of REAL chemo. Help us fight the other enemies that come with treatment: germs. All his energy needs to go into getting stronger so he can continue this battle with evil. Our home is a safe haven (knock on wood), we’ve both had flu shots and I avoid anyone who might have a bug to share when I’m out in the real world. George, Billie and I welcome your visit (we have a lovely spare room). Your thoughtful words and prayers mean more than you will ever know. Much love and hugs, Wendy
25 radiation treatments over the past 5 weeks. I’ve spent a total of about 4 hours and 16 minutes on the table. 2cm int, 1cm anth with a 10.2 TH at about 86. Or so they said every day. The total exposure to the actual radiation over 75 doses was no more than 27 minutes. Now it is over. The doctor says we can’t do any more.
I’ve been struggling to describe how this feels. Its having worked on repairing a car every day for a month while never being quite sure if all theparts fit just right. It’s all done and it can’t be done again; no changes can be made. It’s both frightening and exhilarating. Now its time to turn the key.
They tell me the radiation and chemo will continue to wreak changes to my bowels for a couple of weeks but, whatever the results, there is nothing to be done now but wait.
I think the oncologist that messed up by sending me to the wrong surgeon last week is trying to make up for the mistake. She never admitted there was a mistake, but she has jumped all over urgent referral to the right kind of surgeon.
I’m waiting for a call from a surgeon at St. Paul’s in Vancouver who, I am told, is one of the best. He’ll tell us if the engine starts or not. If it does, next stop resected bowel tumor! If not, well, let’s not consider that for now.
In the meantime, a couple weeks for the radiation effect to complete, and a couple more to recuperate and I’ll be ready for the surgery. Nothing to do now for the next 4 weeks or so. Anyone want to come play Scrabble for a few weeks?
It’s been a disappointing day today but with a very bright possibility in the dimness.
The surgeon I have been waiting so patiently to see isn’t the one I should have been seeing at this point. Dr Chung’s speciality is the liver and he says he won’t go anywhere near mine with a knife until the main tumor has been surgically removed. Even then he would want to see positive results from an IV chemo round before he can say liver surgery is an option. My oncologist thought Dr Chung would do both surgeries and do them at the same time. It seems that would run a very high risk of killing me on he table. Both of these surgeries are very serious, complicated and specialized. They can’t be done at the same time or by the same surgeon.
He says I am in an extremely unusual situation. For 90% of people with my cancer, he would not even consider surgery. Removing half a liver is very serious surgery with risks similar to open heart surgery and the potential benefits must be fairly certain before he will do it. We won’t know if it is worth he risk until the main tumor is dealt with and the metastases show good response to chemotherapy.
As I understand it, there is no point in cutting the liver if the main tumor is still there to cause further damage to the remaining liver tissue. It just creates a worse situation if the remaining liver is still under attack. So the main tumor must go first.
Secondly, the nature of the metastatic lesions must be such that they aren’t spreading on their own. If the cancer spreads from the lesions themselves, we have no way of getting all of it by slicing out the infected half of the liver. The Chemo will tell us the story. If the lesions respond to the Chemo by shrinking, or better yet, disappearing, then surgery becomes a good option. If they don’t shrink, or they get bigger, then removing half the liver is more likely to just speed up the spread.
He described my liver as an innocent bystander that is suffering here just for doing it’s job. It is meant to fight & filter the bad shit that circulates around my body. So far it’s been doing an exemplary job. That’s why the visible metastases are found there. The thing is, that bad shit still floats around and we need to know we can fight that stuff successfully with chemo before we take half the liver off the job.
1) eliminate what we hope is the source of the cancer by surgically removing the bowel tumor;
2) see if the visible metastases then respond to chemotherapy; and
3) if 1 and 2 are successful, we can then remove the infected half of the liver.
I asked Dr Chung if its true that the liver grows back. It can, he confirmed, but it doesn’t matter if it does or not, I don’t need a whole liver anyway.
It pisses me off some that I have to rewind this whole process and get a referral to the bowel cancer surgeon now when I should have been on that list weeks ago. It took over 5 weeks to see Dr Chung while I should have been waiting to see Dr Whoeveritisthatcutstumorsoutofbowels. Now the main chemotherapy will be delayed too. It can’t be done until I recover from the surgery.
So we need to get this show back on track!
I learned a lot today. More than I ever wanted to know. I bet you did too. Thanks for being here.
Only 4 radiation treatments left. We met with Dr. Rose, the radiation oncologist, this morning. He says whatever the results we cannot do any more radiation for fear of permanent damage to healthy tissues. So this is it. Win, lose or draw, the results will be known next week.
I feel a difference. Things have definitely changed down there. Whether there is enough change to allow a surgeon to get at it, we will find out in the next week or so.
Our appointment with the surgeon was delayed but we will meet him tomorrow morning to explore possibilities. Dr. Rose says he’ll likely need a new CT or MRI along with another colonoscopy to make a final decision. It all depends on how effective the radiation has been.
Whatever we find out tomorrow, we need lots of positive thoughts and fingers crossed for the final 4 radiation treatments.
No smart-ass remarks today.
Feeling good today people! I slept in this morning until nearly 9:00 and missed my morning pain meds. I was tempted to just skip it because I didn’t feel too bad. But, as my wonderful wife pointed out as she stuffed the capsules between my lips before she let me have any coffee, we know what degrees of pain potential are there and have learned not to make any sudden changes. I dutifully swallowed and we decided to step out for the morning just to enjoy the fact the we could.
A walk around the ponds at Aldergrove Park made me realize how much time I have been spending in bed or on the couch. It was threatening rain but didn’t. Cool but not cold. We met a park ranger who thought Wendy was taking pictures of her. She wasn’t.
I hope after the radiation is done I will have more energy to get out and get some more much needed exercise. It doesn’t do a body much good to rid it of the cancer but let it waste away from pure idleness. Note to self: Get a good pair of walking shoes.
Remembrance Day is a holiday from cancer. There is no cancer today. Well, at least there is no treatment today. No radiation and no chemo drugs. Breakfast in bed and extra cups of coffee (I feel so loved) make it extra-special for me. Its pretty comfortable time for reflection.
We’ve spent the last three weeks or so balancing causes and effects.
We start with a softball sized lump constricting the lower bowel. Some painful cramps, difficult poops and a constant urge to “go”. No problem! eat this morphine, you’ll feel better.
Well, that worked.
But morphine causes water to be absorbed into the intestinal walls and leaves the contents dry and constipated. This makes the cramps worse, irritates the bowel and now that lump feels like a loosely assembled ball of broken glass. Ok, eat this stool softener and eat more soluble fibre, that should help. Oh, and lets increase the morphine to deal with the extra pain. Oops, better increase the stool softeners and add some good old fashioned prune juice. There, thats better. Balance attained.
For a few days.
Now lets eat a bunch of chemicals every weekday that will kill and dissolve any cancer cells knocked for a loop by the radiation we’ll beam into the general area every morning. We can back off on the stool softener and adjust the fibre because the radiation causes inflammation of the healthy bowel resulting in diarrhea. But let’s add an anti-nausea medication to counter the effects of the chemotherapy. Oh, and increase the morphine because all that irritation and inflammation is spreading the glass around and when it’s not like shitting a flaming river, it’s like trying to pass a golf ball wrapped in sandpaper.
Let’s try stopping the fibre. Bad idea.
When the stool softeners, fibre and prune juices are easing things up just enough to smooth everything out, the side effects of the chemo and radiation are just a mild irritation of the surrounding area. The pain medication can knock the sharp edges off all that broken glass and everything works together to counter the worst of each others effects.
Its all a harmonious dance of cause and effect. Every step causes an effect that needs to be compensated by the next step that causes an effect that needs to be com… Its the song that never ends, it just goes on and on my friends…
We have achieved the balance this week. I dance as directed and Wendy is a ballet mistress, directing the whole show. I absolutely could not come anywhere near managing this balance on my own.
So today I remember those who fought to give me the freedom to dance and who defended the country that gave us the best healthcare I could ever imagine, but my real hero, the one who has my deepest love and gratitude, is my brave, determined and self-sacrificing wife, Wendy Gould.
Half way through round one. I’m still on my feet. Last week was great. Easy. Painless. That was last week.
They still say it’s going to get worse before it gets better. I really can’t complain much but this week is delivering on a fair amount of the pain, inflammation and discomfort that was promised. And I thought I might miss out on that part of the whole experience. Silly me.
I met with both oncologists today and each of them commented on the very real possibility that surgery could become an option. Although I can expect the pain and inflammation to get worse over the next couple of weeks, those will all go away after a few weeks to heal.
Then we start the Chemo for real. The one that they’ll pump into me through the fancy Power Port attached to my Jugular vein. Apparently that treatment affects the patient more “systemically ” but is no more difficult to handle than the radiation and chemo combined.
I have an appointment with the surgeon next Thursday. This will be to decide whether I am a good candidate for surgery generally. The details of whether the tumors are operable will come later; after the full radiation & chemo. I guess he wants to see if I am in decent enough shape to operate on, but maybe he wants to get to know me and see if he figures I am worth saving. Maybe I need to bring him a bottle of scotch.
It’s nap time now. Gonna curl up with a book and let the rest of the day just happen.
Halloween has passed. We never quite made it to the co-op Halloween dance but we live close enough that the fireworks turned Billy (the dog) apoplectic. I exchanged my evening morphine for a couple good shots of single malt scotch. That was a nice treat. So all treat and no trick makes for a pleasant evening. I hope everyone had a great Halloween!