Ellen's Last Day

Hi Friends,
It has been a few days since I wrote, and much has happened. Wednesday, Catherine, Julie and I went up to Sunnybrook for Ellen's last day of chemo, (which she started on August 9). It was a big day for me to go and spend 6 hours up with her, and I felt tired after but it was so worth it. Ellen had a horrible morning: her surgeon, who, as far as I can tell could not care less about what he says and how he says it, told her some scary things at 8:00 am. What Ellen heard him say is that they were going to cancel her last CT scan which should never have been ordered, that they've done all they can and that ovarian cancer is hard to treat. Now go have your last chemo. She was destroyed and cried all morning. By the time we arrived (about noon) she had finally fallen asleep so we first had lunch with her husband Gary. After lunch we each took a turn with her (only one visitor at a time), then I spent much of the remainder of the afternoon with her, trying to pull up her spirits. Mostly, I told her stories of insensitive things doctors had said to me about recurrence that made her feel better. We started laughing with some dark humor (we make each other laugh uncontrollably sometimes) and things looked up. Then, for the first time in her treatment, she had an allergic reaction to a chemo drug. Three doctors and two nurses were suddenly around her and things were happening quickly. They got it under control and injected her with an antihistamine that made her stoned (one small benefit from the ordeal). With ovarian cancer, they inject some of the chemo drugs through an IV into the arm, and some through a port directly into her abdomen. At the end of the day, they get her to lie on each side, then tilted back, then upright, to get the drug to spread across the area. This feels incredibly low tech to me, but there it is. When she was finally done, they allowed us all to come into the room where she rang a bell she brought from home, and I joined in with mine. There were tears of happiness and hugs, but it was hampered with the echoes of what her doctor had said. She was certainly relieved to be done, but was it enough? I hope she is able to move on, put this behind her, and live as much as she can without doubt.
But that's the thing about cancer, doubt is always right next door.
I also saw my oncologist this week who was pleased as punch with my results. As always, however, thoughts and talk of recurrence start to creep in. Much of the discussion revolved around my possible participation in a few studies (one I have already completed this week). For the second study, the one he'd really like me to join, I would be required to take a diabetes medication twice a day which has been shown to slow the growth of tumors. There are over 4000 people in this study, and it is being run by the Cancer Research Institute at Queen's. The drawback (other than the fact that I would be taking a drug that I don't need), is that I would be on it for five years. I would be reminded every morning and night about the fact that I had--and still might have--cancer. If I still have cancer after my treatments, this drug might prolong my life by a year or two, but it would not cure it. (As my oncologist reminded me, if my cancer metastasizes, another round of chemo would be palliative but would not cure the cancer.) My feeling is that I'd rather live my life now, knowing how good my pathology report was, rather than be reminded of cancer everyday for the next five years. I realize the importance of participating in studies, but I'm already in three, and that's enough.
I'm still not sure when radiation starts, but I'll let you know when I hear.
Much love,
Kip

Felix's Contribution to the Hair Discussion

Hi Friends,
Here is the latest hair suggestion from Felix. It really amazes me what you all have done with this photo, and thank you!
Tomorrow I will go see my cousin Ellen who is having her last chemo treatment at Sunnybrook. It's *such* a drag that it will take place during the snowstorm, but she and her husband came in from Peterborough tonight just to be safe. I will take the TTC and/or taxis to get around. Unlike the chemo ward at Princess Margaret, they don't have a bell at Sunnybrook, so I will bring a bell Giselle gave me following my treatments and ring it nice and loud when she walks out for the last time. I'm sure it will be an emotional moment...
More soon,
Love,
Kip

Spring (and Winter)

Hi Friends,
I'm pleased to introduce my new eyebrows, which now accompany tiny eyelashes, and really soft baby hair on my head (Catherine calls it my "down"). However, in the category of "more information about chemo than you ever thought you'd know," I find it quite curious that it's spring in my body from the waist up, winter from the waist down. Go figure.
I'm eleven, again.

Here's another reality I never saw coming: when I drink something cold, it feels like it's going down across my entire chest and it actually hurts. Like a "brain freeze" in my rib cage. Any thoughts on why? Is it possible that Tito and Blanket provided some sort of insulation and now I'm more exposed? I will get used to this, of course, but it's another one of those curious bodily changes.

Catherine is feeling better, at home, and now seems to have turned the corner on her flu. This is fantastic. My nerve pain continues to fluctuate and my mobility is improving, although I'm not yet ready to put my arm in the radiation machine without strain. I've put in a call to a physiotherapist whose office is not far from my house and is on the PMH list of recognized practitioners. I hope to start working with her soon.

Much love to all of you,
Kip

Two New Looks...

Hi Friends,
Many thanks to Cressida Heyes for these two new looks. I'm kind of keen on the second one...maybe it's time for me to have a whole new look.
I have learned more about what's happening with my left arm - the bad burning feeling (which sometimes leans into pain) is a result of the nerve they had to cut. So, my arm is communicating yucky white noise to my brain which doesn't know how to make sense of it. It is truly a sensation I've never experienced before. Last night, while trying to get settled in bed, there wasn't one position I could find that would give me any relief. I managed to fall asleep (thank you pretty little pills) then woke up in the night, as I often do, on my back like a stranded beetle with no way of sitting up without pain. I keep my ipod close so I can just put on my Dalai Lama audiobook. Last night he was telling me about how to manage suffering. It was actually quite helpful, then we did a meditation together. So the beetle didn't move until morning when I found my arm on the bed and without pain. A brilliant moment. It didn't last long, but we now know it's possible to not be sending those messages, so I'm more hopeful.
Catherine continues to improve so we are more hopeful on that front as well.
Much love,
Kip

More appointments...

Hi Friends,
I've had two appointments over the last two days, the first with the radiation team yesterday, and the second with my surgeon today. The appointment yesterday had its challenges: it was strange going to the radiation area of the hospital to start a new treatment (aren't we done already?) and I got into the CT scan clearly before I was physically ready to do so. I didn't realize that they would need my left arm above my head so they could map out the area to be radiated (I was told it was to see where my organs were so they wouldn't radiate them by mistake). It took three technicians to get my arm in place (they place it in a little arm stirrup) and ohhhh was it sore. The lead technician was a bit of an ass, and commented that it was too soon for me to be there (buddy, I didn't book the appointment!), asked if I was in physio, and generally made me feel like I was way behind where I should be in the healing process. Before I left he gave me four tiny tattoos that will help them isolate the area to be radiated.
So today when I saw the surgeon, I went over my progress with him. He didn't seem concerned, but noted that I should be better healed before I start radiation so that I don't re-injure my shoulder each day I get into the machine. Also, I have a buildup of fluids on my left side, and those fluids need time to disperse. If radiation starts too soon, the fluids will have a harder time moving to new areas. So he told me not to rush things. Of course, the radiation oncologist wants me in as soon as possible so they can do their 'cleanup'. I feel strongly that I have some healing to do before I can manage the next step, and I don't want to add more injury. So I might need to argue for more time.
I also asked him about my other big concern, the discomfort under my left arm. It's pretty intense sometimes, hard to sit it on anything, or even have clothing touch it. It feels like a really bad burn. He said this was not atypical, and that it can take up to a year for that feeling to go away. So it's good to know that it's still in the normal range, and that it will just take time.
Catherine is still sick, but feeling a bit better today. There's hope that she is winning the battle with this virus and will be feeling more like herself again soon.
With much love,
Kip

Balancing celebrations and Catherine's flu...

Hi Friends,
Well, it has been a week since my great pathology report, and I wanted to show you some of the celebrations from last week. Julie came home the first day with a cake (omg, was it good), and Hellen came with balloons (and bubbly...thanks, Hellen). Giselle also came by that first night with treats and ice cream, so I felt very celebrated indeed. If only Catherine had been well it would have been a perfect picture.
I'm in for a CT scan today - they want to know exactly where all of my organs are to they will know where (and where not) to send the radiation beams. This seems like a very good idea. Mostly, it's making sure they can avoid the heart and lungs as much as possible. If it might hit the heart, they will teach me to breathe so that I can lift it up and take it out of danger. They have warned me several times that there might be some contact with the lining of my lungs, so I'm prepared for that (I don't like it, but I'm prepared for it). Bobby Noble is picking me up and taking me to the appointment so I will have company today.
Much love,
Kip

Following Ruth's Suggestion...

Hi Friends,
Here are Julie's and Patty's interpretation of Ruth's suggestion for chia hair. Well done, and I promise if my hair comes back green, I'll seriously consider these options (I think I saw the second version on an early episode of *Star Trek*.)
After straining my triceps and biceps in my left arm (from overstretching), I have backed off a little bit and the arm feels better. Apparently, I needed rehab from my rehab. How Type A is that? The discomfort otherwise continues (nerve pain, numbness, raw soreness), but I think it's all normal. I meet with the surgeon on Tuesday so I'll be able to discuss my symptoms with him then.
Today Barb came to get me and we went to see *Barney's Version,* which is playing down the street. I really enjoyed the movie and it was a great distraction from my discomfort. Take it in if you get a chance.
Love,
Kip