Part 2

Part 2 consists of mostly a blur, periods of incidental and deliberate blackouts, ins and outs of hospital. It was a time of catherters, infusions, ICU, inexplicable gastrointestinal bloating, mystery infections, nice competent nurses, hideous food, hallucinations, strange thoughts and body reactions, lots of MRIs and S Xrays.

Without many exceptions, a hospital stay invites complications. After all, it is an institution that houses illness. What we did not expect was the range and seriousness of the complications that arose during my 10 weeks in all at KGH.  Some of this information comes from sporadic journalling and a series of emails from Pete who recorded my progress,or lack thereof, and responses from friends and well wishers around the world. I will not spend time here to revisit that dark period except to say that over Christmas that year, I was struggling for mere survival while everyone else fretted and tried to minimize any weirdness for the kids.

I would also mention that having decided to resettle in Canada after several years abroad, we had a fairly minimal friend support base as most were still overseas.  My parents, 40 km away, would be one of my primary sources of support, with healing food and eventual vigil.  Pete was always there, of course, stress stretching between my health, dealing with being a single parent and trying to do his masters degree at Queens. Fortunately he has a flexible and understanding supervisor who allowed Pete to take the time he needed to attend to me and the kids. Most of the time I was not allowed visitors. but two key women in my life made efforts to see me.

One was my dearest friend Elsa who flew from her new admin position in Ghana to spend a few days together which happened to be near Thanksgiving.  I clearly recall being in the van with my family and Elsa, heading through to my folks’ country home for a spectacular lunch and noting the glory of fall and feeling such gratitude.  I remember trying to help out with the dumplings, which involved opening a packet into a bowl of water and mixing it, a task I was clearly and frustratingly unable to accomplish. At that time I was between hospital stays and still sporting a remarkable shiner  (see above) from an accidental connection with an overhead tv (for which I didin’t even set up a subscription, though I was offered a few sample days out of sympathy and caught the premiere of Desperate Housewives). I’d made plans to visit a spa with Elsa, one of our favourite past times, and she drove us to the one near Clarington. She joked that it was easier to have other guests assume she was supporting an abused housewife friend than explain the reason I looked like shit.

Then there was dear Aparna who walked purposefully into the hospital room where I was first stationed and burst into tears, which immediately to me how serious this really was. As a patient, one develops a strange point of view of the world.  Aparna is always a source of grounding and profound words and I cherished her emails.

From across the country I would get pure beams of love from Shawna, who is her own energy source. Simply sharing walks in nature or bellydancing up some love for me was healing.

Word spread across the globe and eventually I had prayers coming from Hindus, Buddhists, Muslims, Catholics, Unitarians, Christadelphians. For all of it, I was grateful.

There are a few instances that are worth mentioning. Most are thankfully gone thanks to chemobrain, a condition which still affects me to some extent. The amount of drugs flushing through my body did all kinds of things, good and bad.  But here are a few mememtos that have remained.

  • You would think weeks on end, alone in a bed, might be an opportune time to reflect on things: read, write, watch movies. Though these opportunities were regularly presented to me, I could not bring myself to do any of them. The mere effort was too much. Typing an email was tediously difficult and riddled with errors that my normal self would never have tolerated. Reading or even watching tv involved an attention span I simply could not muster. So most of my time was spent sleeping, looking out the window as fall turned to winter across Queens campus, or creating an inventive dialogue with my two nostrils which I named Juan Carlos, the cheeky one, and José, the  reasonable one. Yes, delirium.
  • Walking, when I could, with my IV pole that I also felt the need to personify as Pokey which I would take to the semi-private bathroom or down the hall to the lakeview from the visitors’ lounge, sometimes with Pete. Here I remember a commotion as I fought with one of several spontaneous nosebleeds.
  • Repeated Xrays to check on pneumonia (yes), and one time in particular, sensing the agony coming from Pete as he pushed the wheelchair downstairs to radiation. By that time I could barely hold up my arms as instructed, let alone stand, and thought: kill me now, I am just so tired of it all.  Other internal damage (brain) involved MRIs and one time a camera was inserted down my throat to check on my intestinal health. I remember it not being as painful as I expected and as I was conscious and curious, I noted it looked a lot like the surface of Mars down there.
  • At home between treatments, so exhausted by any simple task, it would take half an hour to dress myself. Later in the evening, feeling my heart trying to pump whatever fluid was in my blood vessels– it felt like molasses. Very disconcerting.
  • Fighting against laxatives the nurses were plying me with, since even the anticipation of oatmeal would free my bowels.
  • Knowing the kids were coming by the “swish swish swish” of snowpants down the hall.
  • Having feet so ridiculously hot in the evening the nurses had to place fans at the foot of my bed.
  • Feeling incredulous, then insulted, when a minister arrived, unannounced, for what, exactly? Are you kidding? I sent the poor man packing. I may have reconsidered it later during treatment…
  • The convenience of a catheter. Once someone has inserted one of those babies in you, there is not a shred of modesty that remains, so I surrendered to any future procedure without protest or care.
  • Finding myself on the floor beside my bed in a pathetic attempt to make it unassisted to the bathroom. Somehow I got hold of the call button and a nurse came to help. It was around that time I realized I was unable to walk because my leg muscles had atrophied after so much time being horizontal and weak.
  • Weeks later falling again and passing out, in slow motion, when my knees gave out during an attempt to get some exercise with a walker.
  • The rare luxury of freedom of a bath. Showers were problematic because of the installation of a PIC line, the IV that was fixed in my upper arm to allow easy removal or blood and injection of meds. It had to remain dry at all times so I had to get creative with bathing. Sometimes I was able to do it on my own, with my Pokey at my side, almost completely submerged. A few times Pete helped me into the larger tub, hoisting me into a sling like device that mechanically lowered me into a deep therapy tub.
  • The curious relief and excitement the infectious diseases team had when they solved the discovery of my latest infection which turned out to be toxoplasmosis.
  • Having permission for a sleepover with Jess on my last night before discharge.  We camped out on the bed with hospital food and watched The King and I.
  • A very strange reaction on my final night at KGH, where I was unable to sleep because of a severe anxiety attack. With a little experimentation, I determined that sitting up was OK, made me feel safe, but the moment I lay down I was overcome with overpowering fear and panic. I called on the nurses to help me out, and all they could do was administer a sleep aid which eventually did the trick. It made me wonder about the last transfusion I had, if somehow I was sensitive to the energy of its donor. This, I assume, is something like the cases of patients who experience strangeness from receiving organs in a transplant. Twilight Zone stuff. Interesting that after all the many many transfusions of red blood cells and platelets, it would be this one night where I would have such a reaction.

When it was deemed safe for me to be discharged and returned to the real world, I was taken to my folks’ place to recover. There I had access to a special potty, a hot tub, good healthy food, fresh air, regular checkups and continued injections from a nurse who would drive out into the country almost every day, and infinite parental love and care. Each day I progressed a bit more, until I found myself walking at last and able to go to the bathroom unassisted.

I impressed everyone, especially myself, with my eventual “recovery”, though I was still on watch and had to keep on pretending I was pregnant or neutropenic. That means wash hands constantly and insist others do the same, no soft cheeses or moldy foods (as if!), no alcohol, low to no sugar. I also had to avoid crowds and any potential sources of infection. Proximity to gas stations, chemically sprayed lawns, construction sites were all risks I had to be wary of. I made one exception to crowds by going to Grant Hall to see Jane Sibbery, which was quite a religious experience for me. Later I wrote Jane to find the name of a song that was particularly hypnotic,  and that I eventually discovered was You Don’t Need.

Physical activity was important and as long as it was not too stressful, I could incorporate it into my days somehow.  I made sure I walked daily, continued Bodyflow at the nearby Goodlife gym, and took up Tai Chi with David Fiske at the church hall down the road. Meditation and breathing also became part of my routine, as was eating clean, adding new supplements, reading and finally, writing. As time passed I kept up many of these activities, but I also became complacent in others.

One big change we made as a family was moving. I had become more sensitive to noise, traffic, construction, some residents’ insistence on chemically spraying their lawns, sirens and general traffic noise. I recall a spontaneous conversation with Carone, a family friend we knew through Mulberry School where Jessie was enrolled for her formative years. Carone’s family had just bought a house on Wolfe Island and was looking to rent it for a while so they could organize its renovation.  Without a second thought, I suggested we be their tenants, and before we knew it, we became islanders, as much as true islanders would allow.

The community on the island is very Mayberry-like and a relief from Kingston where we had two house and one car break-ins.  In Marysville, everybody knows everybody, kids can ride their bikes safely to school and the two corner stores in the village, the air is clean, there is access to nature all around, and it can be a short 20 minute ferry ride to Kingston, meaning we can walk to downtown in no time!  Our home in Kingston represented sickness and stress and leaving  seemed appropriate as we entered a new chapter in our lives.  Eventually we would design and build, with help of professionals, a new home.We would also build a new and large circle of friends that will be invaluable as Part 3 begins.

One last thing I should mention before moving on to the next phase.  No returning from the brink of death experience is complete without a profound life change or paradigm shift. I had none. Oh, there were moments when I would be overwhelmed to tears by a drop of dew on a leaf or a city parade, and for a time I would look up at the clouds and feel a deep but fleeting sense of connection with the Universe, but I experienced no epiphany.  And I was, I must confess, disappointed. Surely I deserved something like this after such an ordeal! Instead, life shifted gently and continued on. The kids were none the wiser, being too young at 2 and 5 to really comprehend what was going on.  After some analysis, I came to understand that perhaps since I had gotten used to quick and dramatic changes in my younger years, this slow and subtle one might be something I have to learn from. Like a butterfly’s wings versus a hurricane.  I was missing the excitement  of living and working in other cultures, endless travel and adventure, and now I am using whatever I gained from those experiences to be a mother. A housewife. A quasiprofessional. What, I have to ask, have I done with this experience? Not much, I sadly admit.

And yet I turn to kind words from my friend Bernie who recently put my accomplishments all into perspective: a new house, two wonderful kids, a nutrition diploma, a business with a website and newsletter along with a decent awareness and knowledge of health issues. Not bad. And something I really needed to hear as I approached Part 3.

3 Comments (+add yours?)

  1. Pat Bowers
    Nov 03, 2011 @ 22:12:55

    Hi Sus,
    Thanks so much for your sharing of your experiences. Do let those who care for you pitch in to help…you’ll have to tell us when.
    Much love,
    Pat

    Reply

  2. Jenn Connell
    Mar 29, 2012 @ 08:25:23

    Beautiful writing Sus. I’m sorry I did not read this post earlier in the fall.

    “And yet I turn to kind words from my friend Bernie who recently put my accomplishments all into perspective: a new house, two wonderful kids, a nutrition diploma, a business with a website and newsletter along with a decent awareness and knowledge of health issues. Not bad. And something I really needed to hear as I approached Part 3.”

    I have to agree with this last, final paragraph and comments from your friend Bernie. Having known you for only a short time, you have compiled and collected information on health, nutrition and life to share that with others…as you did with me. What an accomplishment and what a gift to share with the world. Having been off now for almost three months, I’ve gone through thoughts about accomplishments and what did I have to show for my time here thus far…was it good enough etc… I think so, I think so, but I’m still beginning a new journey…one that you have helped me with by giving me some amazing tools.

    Lots of love Sus,

    Thank-you for all you have to offer us in this precious life we have.

    Jenn

    Reply

  3. Michele B
    Sep 27, 2012 @ 16:54:29

    Hi Sus,
    I’m writing this from Johns Hopkins where my husband is day #16 post BMT. Your blog is most helpful and encouraging! We wish you all the best! We like to vacation at a cottage in Chaumont NY. The Thousand Islands are awesome.

    Reply

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