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

Befriending a Body

Dear Friends,

Today, my nurse Christina came by to take off the final bandages. She called to say she would be by in about 20 minutes, so I took some Tylenol (just in case) and jumped in the shower to allow the hot water to hit the steri-strips. There were probably about 25 strips to be removed, and they didn’t hurt when she took them off. Then she cleaned me up and complimented me on my scars – apparently, they are quite impressive.

I stood in the living room after Christina left, looking at the gentle snow falling outside, and decided to go into the bathroom and take some time to get to really look at my scars, I don’t know, say hello to them. It’s not that I am sorry to have lost Tito and Blanket, it’s just trying to make sense of this new shape, one I never imagined for myself (I have imagined several shapes and configurations for my chest, but never this one). It’s also the process of looking at your body after it has been so banged up with the area around the incisions hard and numb. It has clearly needed to protect itself after the insult of surgery. Who can blame it?

I think we are going to be friends.

Then, this afternoon I was reading a blog Catherine told me about last week. It was written by UBC professor Mary Bryson who was diagnosed with breast cancer and had a bilateral mastectomy a few years ago. It’s a very good blog where she asks a different set of questions about the politics of breast cancer, treatment, etc. (anyone interested can read it at http://brys.wordpress.com/). It’s so interesting that I encountered this blog today: in one entry, Bryson cites Anne-Marie de Grazia, who also had the bilateral procedure and writes of her experience:

“I now look at myself every morning, every evening, naked, in the mirror, equanimously, as I always did, and what I see is not a maimed body. Some might call this denial. Yet - I look at this flat expanse of my chest and I do not find it ugly, or repellent. My face, somehow, "goes" with this chest, there is a harmonious continuity from my face all the way down my body. There is, in all human beings, when they are bare-chested, a touching symmetry between the eyes and the nipples, and this symmetry, of course, in my case, is gone. Yet, and this may sound scandalous, absurd, or even mad: this breast-less body is not devoid, in my eyes, of a certain pure and abstracted beauty. If it is indeed monstrous, it is so in the manner of some magical, not quite human creature - a fairy, a mermaid - an Amazon.”

It was meaningful to read another person's experience in the post-surgical mirror, today, just after I first encountered my new chest for the first time fully exposed. While the fairy, mermaid and Amazon don’t resonate with me, I might let my imagination play with the “magical, not quite human creature” part. Now that could be healing and even quite intriguing...

Here are my wishes for Catherine to feel better soon, and for everyone else to get home safely on this snowy winter day.

With much love,

Kip

Possible Hair Styles

Hi Friends,
Contributors have begun to suggest possible hair styles for me. Thanks to Patty for sending this first option. I promise to take it seriously if I come back as a blond.
This morning I woke up for the first time since the beginning of August light and optimistic. Then I moved my arms and sat up felt the pain as a result of the surgery. It is now the hardest pain thus far for sure, but I'm just assuming it's all part of the recovery. I have a whole new appreciation for what lymph nodes do.
A reminder to love your lymph nodes.
Yesterday, Catherine had a scratchy throat and was tired, and today it has turned into a real cold (or flu). Her energy is zapped (this makes me think it's a flu) and she's feeling pretty crappy.
In good news, I have new eyelashes. Yes, eyelashes! Last night, while getting ready for bed I looked in the mirror and--gasp--I had four lines of veeeery short little lashes coming out (they look extremely tenuous, probably wanting to make sure there's no more chemo coming their way). It was great that they began budding on exactly the same day I found out that, without any doubt, I would not be getting any more chemo (always a possibility until you know the results of the pathology report). I got an eyelash curler a few weeks ago so I can train them to come in properly. It will probably take a few weeks before I need it, but I have it at the ready.
Much love,
Kip

A Great Pathology Report

Dear Friends,

This morning I went down to the hospital for a meeting with the radiation oncologist. We figured we would be setting up a radiation schedule and talking about the therapy. Instead, the oncologist's fellow, a lovely young Irish woman, came in and told us she had the pathology report from the surgery and that it was good news. Would we like to hear it? (Um, yes.) From all of the samples examined, which included both breasts, 29 lymph nodes from under the left arm (ouch) and several from under the right arm, there was no remaining cancer. None. They could see residue from where the chemo clearly had killed the cancer cells (scar tissue and other indicators to suggest that there had clearly been a battle), but no cancer. They will still do radiation as there might be stray cells that were not removed. But I can't tell you how much more optimistic this report makes me for radiation, and for my long-term prognosis.
So it has been an emotional day, full of gratitude and happiness, and tears. There's still a road ahead--I'm recovering from surgery with nerve pain and quite a bit of discomfort, and 5 weeks of radiation after that--but it's the best news I could have received.
The chemo worked beautifully after all.
Tonight, Giselle came with ice cream (remember that blog entry a few days ago about wanting to eat as much as I want?) so she, Julie and I had dinner with a few glasses of wine, and Rocky Road Haagen Dazs (with the hope that the rocky road is behind us).
I will sleep incredibly well tonight.
With much love,
Kip

Kip's Hair, Before and After Chemo

Hi Friends,
Be careful what you wish for! I asked for Elvis hair when it started growing back in, and viola...well, almost. I now have short hair around my head, but hey, it could still do this, or it could come back and look as it did in the original photo in 2008. Thanks to Julie and her Photoshop skills for creating the Kip/Elvis montage.
This, of course, could become another question for all of you. Do you have another idea for what my hair could look like? Do you have any experience with Photoshop? If so, feel free to take the first photo, replace my hair with your idea for a new look, email it to me and I'll post it to the blog. Or, if you have another photo of me, you could use that instead.
With much love,
Kip

A big day...

Hello Friends,

Today, we went to the mall (Sherway Gardens, which we now call Sherway Forest), down at the Queensway and highway 427. It's a large mall, so I wanted to go there to get in some walking. It turned into a shopping trip as well, not entirely surprisingly. I tried on a few things I could either (slowly) zipper or button up, but no luck. It was a day of getting accustomed to my new shape without Tito and Blanket. I don't miss them, but now it's figuring out what I can wear that looks good (I think the solution is a good personal trainer for better shoulders). I saw a few pullover sweaters that looked great on the tables, but it's too soon to pull anything over my head, so perhaps I'll go back when I'm all healed up.
Then the other big event of the day was my first shower. This might sound like a small event, but it meant wrapping my chest in Saran Wrap multiple times and taping me up with waterproof tape to make sure no water reached the incisions. Quite the look. If I had had a hot flash in that moment you could have stuck me on the top of a Christmas tree as a shiny, colorful ornament no one would ever forget. But it felt wonderful to be under the water, and my left arm feels fine (they scared the crap out of us at the lymphedema clinic warning us that hot showers and baths could make arms that have had the lymph dissection swell up). So far, all is good.
Tonight, I rest.
Much love,
Kip

Ch-ch-ch-Chia!

Dear Friends,
Well, it's official: I now have new hair growth on my head. It's very strange, very soft, not like hair at all, really, it's wispy, light and fuzzy. But there's definitely a 5 o'clock shadow. I feel like one of those chia pets advertised on television - just add water and watch it grow. Not surprisingly, Catherine had a dream last night that she was taking care of a lamb. I've shifted in her unconscious from her wounded duckling to her soft little lamb.
On another note, if there's anything amusing about my hot flashes (and this might be the only amusing thing) it's that my face gets red up to my hairline but no further. Now that my hairline is a little more pronounced, onlookers can see a flushed face up to the pale peach fuzz head. I didn't know that the flush stopped at hair. I might drink a bottle of red wine on the weekend, have a few flashes and charge admission to see this. It's quite the sight.
Today, the last Beatle was taken out. Thank you for all of your name suggestions that came on the blog and by email (poor George, as usual, didn't get one nomination, but there are some strong opinions about Ringo!). Thinking about your suggestions entertained me as the nurse pulled the drain out (again, like the first person to inject the chemo yew drug, who would have ever thought to sew a drain into a body and then yank it out a few days later?) Incredible. It's great to have more freedom and less tugging on my skin, and now I can graduate to the next level of stretches and exercises. I'm hoping tonight I might be able to sleep on my side for part of the night.
Much love,
Kip

Like A Rolling Stone(d)...

Hi Friends,
Another day, another afternoon stoned. I spent much of the day in bed - lying down with my arms elevated gives me the most comfort. The nerve pain is managed but it's all across my chest and under my arms. I have to remember, as Judy reminded Catherine today, that this is the process nerves must take to recover and heal. It's just time.
So far, Paul (or John) is under the legal limit for the day, so he might be going tomorrow morning. That would give me more physical freedom and help me feel physically and mentally stronger. I will enjoy that, whenever that happens.
Tired tonight, more tomorrow.
Much love,
Kip

Kip's First Post, Post Surgery

Hello Everyone,
Many thanks for your posts and love and support. I have my laptop on my table in my "recovery room," so I can sit and type for a bit. Catherine and I were just laughing that I look like a bit of a lodger typing away in the corner of my room under dim lighting in my flannel shirt with my toque on.
A room of one's own.
I can't express the range of emotions I have experienced over the last few days, but I will flesh some of them out over the next few days and describe them as I can. I am happy to report, however, that three of the Beatles have left the building. That process was ok - mostly the pain was from the three sites where the skin already was attaching around the drains. Once that skin was detached, my nurse, Christina, always calm, cool and collected, told me to breathe.
Oh oh. This can't be good.
Simply put, that process could have been in an episode from the X-files: with each drain, it felt like a three-inch flattened worm slid like lightening under my skin until it left the opening. By the time my brain registered the pain, it was over. Only one more to go. Probably Wednesday. Then I'll eat as much ice cream as I want.
I am beginning to understand the reason for this nerve drug. I didn't have any nerve pain to start, but now I'm having nerve sensitivity on my left side, and in my left arm, so I'm happy to keep the drugs coming. And I'm having strange sensations where they took out the lymph nodes - I'd swear I'm leaking fluid from my left arm, but I'm not. It's just a ghost feeling. Totally odd.
My fingers ache tonight from the Taxol, so I need to stop typing, and I should elevate this left arm. But I'll write again tomorrow.
Much love and thanks,
Kip

Gabapentastoned....

Dear friends, Catherine here:

Kip is taking a new nerve-pain medication called Gabapentin and it is making her pretty groggy. She spent much of the day gazing into the middle distance and described the state as 'gabapentastoned'. I'm not sure it's a great buzz; it looks too fuzzy to be fun. We are hoping that she adjusts to this because the instructions are to take it for four weeks!

The homecare nurse came this morning and removed the large bandage. All of the incisions are clean and seem to be healing well. One of the other things that the nice young doctor told us yesterday was that because of the cancellation before Kip's surgery, they had a bit of extra time. Rather than use staples, they used cosmetic sutures which are self-dissolving and apparently leave a nicer line in the end. Great for Kip, but as Julie said, why do they book so many appointments so that you have to get lucky to get the good cosmetic effect?

There is still some swelling, but Kip did get a first look at her chest. She said it was initially strange to look down and see her belly-button, and it was a little upsetting just to see herself cut up like that. But it will heal and she says she feels confident it will be okay.

Last night, while drinking contraindicated red wine, she named the four drains after the Beatles. We then sang some appropriate Beatles songs. 'Help', 'Baby you Can Drive My Car', and the obvious, 'Octopuses' Garden'. (Kip has been making lemonade out of lemons as usual)

The rule is that when the drains collect under 50cc's over 48 hours, they are removed. We're hoping that the Beatles will be broken up by Monday and three of the drains will be removed.

In all, it was a quiet day. Thank you again for all of your support,

With love,
Catherine (and Kip)

Home

Dear Friends,

This blog entry is being co-written by Kip and Catherine. Kip is very tired tonight, but also extremely happy. It has been a good day. Kip had a good night in hospital, if such a thing is to be had. There was some sleep, some meditation, some chatting with the night nurse, some introspection and the day, like all days in hospitals, started early. I (Catherine) and Barb arrived at the hospital about 8:00 and found Kip up and happy to see us. We met with the doctor (one of the fellows working with the surgeon, who was part of the operation) and he was able to answer some of our questions. The axiol dissection on the left side means that all of the lymph nodes from the first two levels were taken. On the right, the sentinel node and one smaller one beside it, was also taken. These will be closely inspected by the pathologist and we will get that report at the end of January. No muscle was taken, and only one nerve was harmed, which explains some of why Kip has such good range of motion already. However, the nerve that was taken was under her left armpit has left a numb area that extends from under her arm from the edge of her shoulder to the elbow. The doctor says that some sensation may return.

The pain is pretty managed with Tylenol-3, but Kip says that with certain motions she feels like a dog hitting an electric fence (not a totally relaxing image). But she is getting used to the limits.

We have learned how to milk the drains (there are four of them, and they collect fluids that are confused by the absent lymph nodes).

We left the hospital by about 11:30, and Christina (the home care nurse) came by not too long after to deal with the back absess. Everything looks good there, and there will be a home care nurse in every day for as long as we need one.

After an afternoon snooze, Barb came by with Helen and made dinner for us, and Maureen came as well. An impromptu party emerged, and Kip had a contraindicated yet well deserved glass of wine or two! We laughed and cried and celebrated this moment together.

We hope for a long and restful night.
Sending love and good thoughts,
Catherine and Kip

Surgery Day

Dear Friends,

Catherine here. (I can't quite figure out how to sign in as myself, please forgive me). We got to the hospital at 8 and there was a 'cancellation' so they were able to take Kip almost directly into surgery (probably a good thing, as there was no time to get too upset or nervous).

Everyone at Princess Margaret Hospital has been amazing: nurses, anaesthesiologists, surgeons, the works. Today was no different, and you won't be surprised to hear that Kip's unstoppable personality was unstopped by surgery. Three hours later and Julie and I met with the surgeon. He was pleased. No surprises. No indication of disease in the right breast etc.

Kip was back up in the ward by 2:00 and eating a cheese sandwich by 2:45. Before we left tonight, she had eaten, walked around the nursing station, ordered t.v and telephone, and begun gathering the stories of every staff on the night shift on the 18th floor of PMH.

Many of you have called, sent wishes and love. Kip's doing great. I will go back tomorrow morning for 8:00, hopefully in time for rounds, and we will take Kip home in the afternoon. We are tired, grateful and amazed.

Love to you all.
Catherine (for Kip and Julie)

Surgery Tomorrow

Hi Friends,
Thanks to everyone for your all of your wishes. Tonight I'm really just looking forward to having this done and behind me. In a day I hope to be cancer free...such a great thought.
We are in for 8:00 and the surgery is from 9:30 - 12:30. Catherine will be put up a post tomorrow night and fill you all in on the activities of the day.
I hope to be back online in a few days.
With much love and gratitude,
Kip

Waiting and Prepping

Hi Friends,

Today was comprised of tasks in preparation for Thursday, with a little down time to look at a the recently-released auction book of Michael Jackson photographs. (They are totally distracting.) I had another nurse today (Lydia, not Christina, my usual nurse) who was less impressed with the progress of my back wound. Not to be too graphic, but there is more discharge today (uugh, sorry) which is not great. I'm not sure what they will say at the hospital, but I'm committed to keeping the surgery on Thursday if we can. Maybe they should just do the surgery, put me on a spit and rotate according to which part side of me needs to be drained or packed or cleaned or changed. I'm good with that.
I just got back from the dentist's office. Over the last few months I have developed some sensitivity in a few teeth, so I asked them to put on a little of that gel that desensitizes them. That way I won't have any tooth discomfort over the next few weeks until I'm ready to go in for a real visit. The office is in south Mississauga, and I had a really nice drive home on the QEW while blaring some old Genesis tunes I haven't heard in a while. I love the feeling of driving on Toronto highways, a little over the speed limit, alone, with great music filling the car. Freedom. In the cold early spring, I'll do that with the window down and heat on full. So I'm driving along today, relaxed, content and then whammo - um, I'm having surgery in two days. So I went up to the next level of surgical awareness, you might say. I'm still quite calm, but now more aware of what's coming next, or at least aware of the unpredictability of what's coming next. Roberta and Judy sent me a lovely bamboo plant today (thank you), so I'll meditate next to that plant before going in.
After chemo, all things seem possible, and I know all will be fine, but there is always stress with losing body parts. I'd be lying if I didn't admit to feeling that tonight.
Love,
Kip

Catherine's Birthday

Hi Friends,

Today, Catherine is celebrating a special birthday. I'm really glad the date falls between chemo and surgery, so we can go out and mark this day with a quiet dinner out and then over to see her family where she can celebrate with all of them, including her twin brother Andrew.
My back is healing well and it doesn't look like it will interfere with the surgery date, but we will have to get clearance on that on Wednesday. The nurse comes and repacks it every morning...that part smarts, but it's fine. We will need to continue packing it for at least another week which means there will be some overlap with the incisions and drains in the front and sides after Thursday's surgery. Life is always interesting.
I wish you all best wishes for 2011 and hope you have a happy and healthy year.
With much love,

Kip