Fashion police

My fashion sense had always been pretty limited. My color palette ranged from dark blue through dark red to dark green - pretty adventurous! Robin used to shop for me sparingly knowing that if a color didn’t suit my taste then the offending piece of clothing would hang in the closet until it disintegrated off the hangar. She used to marvel at the fact that in the instances when I went to the clothing store myself, I would come home with something that color-wise matched everything in my closet!

I wasn't as surprised. I figured when you only choose from three colors it's hard not to have everything match. It's like Garanimals for the adult male. ;)

So it's been quite a surprise to me that color no longer seems to be an issue when shopping for clothing. In fact I'm surprised that I kind of like to wear bright red shirts, or swim trunks with wild patterns on them. Who cares what you're wearing when life is so short?

Now I'm just having to learn that there are some combinations (e.g. a bright red shirt and neon green shorts) that really *don't* work! If I'm not careful I'm going to be picked up by the fashion police.

Bargaining?

While I haven't paid much attention to the Kubler-Ross stages of grieving (Denial, Anger, Bargaining, Depression, Acceptance) I did feel very much like I was bargaining today. I was thinking, "What would I give to have Robin back for two weeks?" What if I could choose to have her back but it meant joining her on the other side at the end of the fourteen days?

Then I thought "No need to dwell on that since it's not really possible…" Whew!

Images

Over the weekend I'd learned about another young person who had died of cancer. I think that contributed to the grieving I was feeling. Tuesday I woke up with images in my head of when Robin was struggling in February. It was kind of unsettling, but the thoughts didn't last long before they were balanced by images of the good times we shared.

Pool party!

I was fortunate enough to be invited to a pool party today (Thanks D!). When I arrived in the late afternoon the kids were getting out of the pool and I thought I'd missed all the fun. But it wasn't long before three of them (I guess about ages 3, 5 and 7) were back in the pool playing. We got to throw the water football around, jump off the diving board and practice swimming. Little Julie didn’t seem to open her eyes underwater yet, so we practiced retrieving things off the bottom by opening our eyes and looking for them. Then she practiced jumping off the diving board and swimming across the pool. What a blast to see kids learning things!

Grieving Secret Weapon

Well, things continued today. This time I was cutting the grass and just started getting tears in my eyes. It wasn't like sobbing or anything, it was just a continuous stream. I was thinking "is this because I have to do *all* the yard work myself now" :)

I didn't see any reason to stop mowing the lawn – I just had to be a little careful where I pushed the mower because things were getting blurry. If the neighbors saw me they would have thought I was nuts. So what else is new?

Later I was in the house and I guess I was feeling a little low. Well, the hospice folks like to say you should "lean into the pain" instead of backing away from it. No problem. There were a few dozen sympathy cards I had never opened. I figured they were my "backup weapon" against grieving. Instead of hiding from the feelings I pulled out these wonderful cards and started opening them.

Well, turns out cards are pretty hard to read when your vision is blurry! But I really did feel better having gone through them. I hope you don't feel bad that I took so long to open some of them - I'm glad they were there for me when I needed them!

One card caught my attention. It said something to the effect that "there's never enough time on this earth for us to prepare to say goodbye". I thought, nope, actually the longer you know someone, I expect the harder it is to say.

Days Remaining

Turning off the lights at night doesn’t mean you fall asleep right away. If you're both awake then you can have some pretty odd conversations in the dark.

In my thirties I would sometimes lay awake in bed and do a rough mental calculation about how many days I'd been alive and then I'd assume I was about halfway through life, so I must also have *at least* an equal number of days remaining. So in my mid-thirties I would have estimated that I had lived about 12,500 days - and therefore I would live another 12,500 days which would bring me to about 70 years of age. The odd thing was that as I got older I always doubled the number of days I'd been alive and therefore I kept increasing my projected life expectancy. It seemed I was always half-way through life.

A couple of years ago Robin and I were both laying awake in bed talking about this idea. We were starting to reach a point where I was going to have to admit we might have passed the midpoint. After all, what age can you count on attaining?

So it was on June 16th, 2006 when we went to bed, I would have still been erroneously projecting about 13,000 days left for each of us - but in reality Robin went to sleep with only 247.

That sneaky "grieving" response

Well, I did have the grieving thing going on the last week. I don't know how much was from the "anniversary" and now much was caused by my writing about it.

Anyway, I expected I had done a pretty good job of getting things out of my system but that's not how it worked out. After the posting on Friday morning, I took off the day from work and went looking at new bicycles. I was busy all day long and finally I called Dad around 9:00pm Friday night to say hi. We talked for an hour and by the end we're both laughing and crying at the same time.

Well, so then I thought it was out of my system again - Nope! Saturday night I called Kim to say hi and then "here we go again" with the laughing and crying. It really doesn't bother me to be doing it - laughing and crying are happening at the same time and there's not so much sadness in it these days. It just continually surprises me that after four months the grieving response (getting choked up and tearing up in the eyes) still comes and goes as it pleases.

I don't think it's the "four month" timeframe that surprises me as much as the grieving response itself. It's sneaky and it doesn’t give any warning - it just pops up out of nowhere. I go to say something on the phone and suddenly I'm choked up and no sounds come out of my mouth. It used to create some long pauses, but now I just start laughing and I can say "oops - it's that grieving thing again".

Leftovers & fortune cookie

I had Chinese leftovers for dinner and therefore one more fortune cookie:

"Imagination is more important than knowledge."

June 2006 - what were the first symptoms?

It seems odd now, but at the time we didn't make *any* connection between Robin's ongoing stomach problems (ala Montreal) and the events of that week in June. In fact, in the summer of 2006 we would continue to see one doctor for the stomach upset, and we would see another series of doctors trying to figure out what was causing her facial pain.

It wasn't until about December of 2006 when I had time to reflect back that it would become clear to me what the link was. For me, December would be the time of "what-if's". When things were going terribly wrong and the inevitable was happening. At some point in everyone's journey they think back and wonder "What went wrong?", "Did I do everything I could?", "If I had it to do again would I have done anything differently?", "Could I have done anything more quickly?".

By December I had learned more than I ever wanted to know about cancer, about radiation therapy, about chemotherapy, about facial reconstructive surgery, about pain meds, about anti-nausea medication, about antibiotics, about hospitals, about healthcare insurance, about hospitals, about nurses, about doctors, about the "art and science of healthcare".

Also by December I had learned that blood ingested into your stomach makes you nauseous.

By December I had realized that the headache and nosebleed were not the first symptoms. The bleeding from her sinus had likely begun weeks earlier. That's why none of the treatments for her stomach symptoms had any effect. It wasn't gastric juices causing her abdominal discomfort; it had been blood draining from her sinus.

The first time blood came out of her nose just happened to be the week she had the headache. By the time I connected things in December 2006 it was simply a historical fact of note. It didn't seem worthy of mentioning to Robin, she had enough to deal with by then. By then we were technically "beyond" a cure.

June 2006 - The uphill journey begins

I pulled into the driveway at home with a few minutes to spare before we had to leave for the appointment with her doctor. We talked and Robin said she thought she had sinus cancer. How? She'd been surfing the Internet. There were sticky notes on the edge of the computer monitor. Things were still matter-of-fact. The doctor would help. We would find out What Was Going On.

I recall the nurse who brought us to an exam room. As we walked down the hall and into the room, Robin explained her symptoms and said she thought she might have cancer. The nurse waived the comment off and said with a smile "no, you've got a sinus infection". We didn't believe her. Once she'd left the room we said as much to each other. After a lifetime of sometimes stunted communication with one another, we would never again hesitate to share what we were thinking as we navigated the healthcare labyrinth.

Then the doctor came in. I thought she was a better listener. She thought it best to start with antibiotics and a CT scan. She seemed to think it was likely a sinus infection, but we'd do some tests to see. Robin got a prescription for antibiotics and an order for a CT scan. The test would be done the following Thursday.

Well, we felt concerned, but we also felt that this was a reasonable approach. No need to keep the alarm level up. We'd get that test next week, then we would find out What Was Going On.

For the time being we would maintain a healthy skepticism. We would question what was going on, but we were also going with the flow. This attitude would last sixteen days, until July 2nd, 2006. That's when things would ratchet into high gear for us. The doctors would eventually catch up to us a few weeks after that.

June 2006 - vivid memories

Here's another entry to fill in what happened in June of 2006, before the blog was created:

A year ago this week I had traveled to Cleveland for a business meeting and life was going pretty well. We'd had the mishap with Robin's energy level while biking in Montreal, but within three days of arriving home we had seen a Gastroenterologist about her stomach (Robin had developed a habit of going to any of my appointments with specialists so it was only natural for me to now accompany her - two heads are better than one!). The doctor had prescribed "the little purple pill" and he stated that the next step would be an endoscopy (scoping her stomach) if she didn't show any signs of improvement.

Well, it turns out things weren't that simple because the medication caused her to break out in hives. She'd never cared much for medication - just the year before she had discovered she was allergic to penicillin. And apparently an allergy to penicillin only becomes noticeable the second time in your life that you take the medication - so she really hadn't needed much in the way of prescriptions as she grew up.

The biggest concern at this stage was that we were scheduled to do a week long bike ride at the end of July but her stomach discomfort was increasing each week and beginning to interfere with her ability to get out and bike. I was still "in training" and even on my business trip I managed to find a place to rent bikes so I had biked three nights in a row - two nights on my own and one night with three teammates from work.

So it was the morning of Friday June 14th, 2006 that I was driving to the medical center with two of my teammates for the last day of some meetings with our customer. Those of us going home in the afternoon had already checked out of the hotel and we had our luggage in the car. We'd made an obligatory stop at Starbucks and were nearly at our destination when my cell phone beeped at 7:48am. I fished it out of my pocket and saw Robin was calling. I remember thinking, "that's odd", I usually speak to her every night and I'm expecting to be home at 4:00pm. She must have a question about something. I didn't want to talk while I was driving, and I'd be able to call her in about twenty minutes, so I let the call go to voicemail.

We arrived at our destination and lugged our briefcases into the meeting room. I headed outside the building, sat on a bench and called Robin back at 8:08am. We talked for sixteen minutes. She stated that she'd had an awful headache the night before. She took 600mg of Advil and it didn't stop the pain. She took another 400mg and it barely made a difference. (I remember thinking - is it healthy to take that much Advil at once??) The pain had been so bad that she could've taken a hammer to her head just to make it stop. Something else disturbing had also been happening which she hadn't told me about earlier. Three days in a row she'd had a nosebleed. In each instance she was just busy doing something when her nose spontaneously dripped a few drops of blood and then stopped.

A nervous feeling came over me though we both continued to talk matter-of-factly. So this is how it starts. Everything that was presently happening in your world disappears. Your mind gets confused. It becomes difficult to think straight. It feels like the world stops spinning and everything comes down to an intense focal point. This is one instance when "being connected to the universe" doesn’t give a warm fuzzy feeling. We discussed that she should call her doctor for an appointment, and I noted that I expected to be home at 4pm, but I'd check on a few things and give her a call back.

I hung up the phone and sat there, alone on the bench, on a sunny Spring day.

I usually carry a schedule of return flights. I looked at the info. There was an earlier flight. I paused and thought for a moment. Many years ago I'd read the "Seven Habits of Highly Effective People", so long ago that now that the details are a little fuzzy. However, I knew someone who taught "Seven Habits" classes. I thought about a conversation we had in which he stood at my desk and recited his "life priority list" which in brief consisted of: God, Family, and Work.

I considered the priorities in my life and dwelled upon whether or not I needed to ask permission for what I needed to do now. Nope. Three minutes after I'd hung up with Robin I dialed the travel agent. A moment later I was booked on a flight arriving home at 12:45pm. I called a third teammate who was not yet at the meeting and asked for an early ride to the airport.

I called Robin back. I explained that I'd home in about four hours. She noted that she had a 1:15 appointment with her doctor. Hmmm…perfect timing. For the next five months it would feel as if the universe was working with us, taking us to the right people at the right time, continuing to support us, continuing to help us Get Things Done.

A new project manager had just joined the team (my new boss) and I'd first met him the night before. I went back inside the building and asked him to come outside and talk with me. I remember him saying something as we walked out the doors, but I couldn't hear any of the words. I tried to tell him my wife was sick and I had booked an earlier flight to go home but the words weren't coming out of my mouth in any organized fashion. Mostly nothing was coming out of my mouth, but I expect my face was showing how upset I was. The nervousness was already escalating.

Apparently enough words came out of my mouth to communicate some kind of emergency. I remember him saying that if I was asking for his permission to change my travel that I should just go ahead and make changes, that family was more important than work. I remember thinking in my cluttered head, "hey, it's already done".

We went back to the meeting room and I managed to tell my teammates that I was leaving early. I mentioned the headache and bloody nose. One of the folks in the room was staring at their laptop and absentmindedly said "a bloody nose and bad headache - that can't be good". Yep, that's what my feelings had already told me. I sat in the meeting for another ten minutes awaiting my ride. Watching the people in the room talk, but not hearing anything that was said, just wondering when my ride would arrive.

I recall the ride to the airport. I can't recall what we talked about, but I remember trying to hold a conversation while my mind continued to try to process what was going on at home.

I recall arriving at the airport gate and searching for a power outlet to plug in my phone. I called Robin and we talked again for thirty minutes before I had to board the flight.

All these memories are still so vivid to me that they could have happened yesterday. Kind of like how people remember where they were when Kennedy was shot, or what they were doing on 9/11.

My last memory of Cleveland was seeing the city from my window seat on the regional jet. I remember processing the fact that we must have taken off to the West because after a long slow right turn I could see the entire city and the south shoreline of Lake Erie framed in the window. I remember my mind still trying to grasp what was going on, but knowing in my heart that my life would never be the same again.

Fortune

I just opened a fortune cookie and it read:

"Open your horizons and see all the options
you have. Then you will truly be fortunate."

Massage On!

Well, this week I received another massage - good for me! (Thanks D!)

If you haven't gotten yours yet then what are you waiting for? :)

I guess my perception of touch and boundaries is a little different from the average person's because Robin was a licensed massage therapist for so many years. Having massage become a part of our everyday life was quite the blessing. It was quite normal for us to be sitting on the couch at the end of each day with me rubbing Robin's feet. Sometimes I'd just open my palms towards her, sometimes I just had to look at her, and she'd pop off her shoes and put her feet in my lap!

In contrast, she wasn't much into rubbing my feet while we sat on the couch. But contrary to any joking I may have done in the past (e.g. the cobblers kids have no shoes), I can't remember Robin ever turning me down when I asked for a massage. I used to always fall asleep about halfway through. I always explained that it was the greatest compliment to her abilities! ;)

Well, I hadn't realized how much I missed giving massage until a friend recently allowed me to give them a foot rub and a full body massage. Later I was trying to explain to another friend what it was like for me but I hesitated, lost for words. She interjected "it must have been a healing experience for you", and I said "those are exactly the words I was looking for!"

"My wife" & pronoun confusion

The first few weeks and months after Robin died I found I continued to say "we" and "ours". The words seemed so familiar at the time, referring to things like "our silver car", or "our home". It was kind of upsetting because I knew I was using the pronouns incorrectly, after she died the words were supposed to change to "my" or "mine". After twenty years some language patterns really get burned into your brain.

I still run into conversational issues. I didn't realize how much we share with people through stories about our history. If I'm with friends and I speak about things that "Robin and I" did, they understand the story within the context of my life.

As I meet new people things can get a little disjointed. For example, if the conversation turns to travel I might say "yes, my wife and I once traveled to England". I might have an entire conversation with someone and the fact that my wife passed away never comes up. It's not like I'm going to say "yes, my wife and I once traveled to England, but we don't travel anymore because she died last winter…". Huh?

Obviously the cancer story isn't one I tend to just bring up out of the blue. Sometimes the conversation just naturally takes care of itself - like when someone asks if we have children. Well, then the story just kind of comes out naturally. And luckily it doesn’t have to be told as a long story, people will quite readily accept a brief description of what happened.

Sometimes now I find myself editing my own conversation in my head. So now a story might start more like "yes, I have traveled to England". I guess maybe it's just another symptom of pronoun confusion…

Biking with Corry

My brother Corry and I have been talking about getting together, but it kept getting pushed into the future. Then we started talking about biking. Well, it didn't take long to start setting dates to get together. On July 15th we'll do a ride for the American Cancer Society.

I also explained to him that last Winter (February 5th to be exact) I had signed up Robin and I to bike the Livestrong challenge in Philadelphia this coming August. Maybe I thought that would help her improve at the time. I had long since given up on the idea of doing the ride, but after talking with Corry maybe it's back on, more later.

Biking's back

I have continued to bike and I've have been doing more rides with the local bike club. It's nice to get out with folks who have a common interest, and it's also a good way to meet folks who bike at about the same speed. On short rides it's easy to adapt styles and speeds to partners so it doesn't make much difference. On longer rides (e.g. 1/2 day rides) it's nice to find folks who go about the same speed - so everyone gets a workout! :)

From watching bike racing it's obvious everyone has different abilities. My strength seems to be hills, but I'm not as fast on the flats. If I can keep up with someone on the flats then I usually go up hills faster than them. However, if I'm biking with someone who has an equal pace going up hills then they tend to drop me (leave me the dust) on the flats.

It makes it a little harder to find a comparable biking buddy, but I'm working on it!

Grieving's back

Well, that old grieving feeling has been back this week. I haven't felt it strongly in about a month now (well, actually maybe it's just been weeks!). It's not as intense or as long lasting as it used to be. Now it just kind of goes over me in a wave and I can usually work out a smile about it, knowing that it's just my heart and mind coping with things. Next Friday is the one year anniversary of when Robin first had symptoms which we attributed to a serious disease and I expect to write another update of what was happening one year ago. I don't know if the grieving is happening more just because of the upcoming anniversary, or it's because I'm dwelling on writing about it…

Biking Again

I've started biking again and today I attended a local club ride. I knew that one of the attendees would be someone who had heard about Robin's sickness last year. On the way to the event I considered both possibilities - that she knew about the whole story, or that she wasn't aware how things had turned out. This was someone we had biked with a just a few times over the past four years.

I arrived at the rendezvous point late, got my stuff together and rode over to the gathering bikers. I spotted the acquaintance and as we said "hi" I could see her mind working out the recognition of who I was and how we knew one another. She smiled and asked "How's Robin doing". Oh man.

Even preparing ahead of time the words don't always flow so smoothly out of my mouth. I'm sure I said something goofy and mangled, but I managed to convey that Robin had passed away last Winter.

My friend frowned a little bit but then smiled and said "let's dedicate this ride to Robin".