Out (August 15th, 2011)

I am out.  Among the normal people who go places and have things to do that don’t revolve around a medication schedule.  Around my daughter who expects every ounce of energy that I can muster.  In a space that has privacy.  I am at my parent’s farm and I can hardly believe the version of myself that I became.  I was fearful of leaving the hospital and joining the outside world.  I felt like I shouldn’t be leaving a safe, sterile place that has all of the assistance I could ever need; I became dependent on the institutional atmosphere.  Now that I am a few days out, I am becoming more human.

I went for a walk yesterday and had to wave away mosquitos.  I grinned inwardly at the thought that I had even missed these pests.  All of the things that make a person feel alive, both good and bad, are vital in bringing comfort and adding that extra dash of vitality.  In the void of the hospital, I rarely missed a dose of dilaudid (a painkiller)- if I could mask the pain and be numb, I certainly did.  I felt like allowing the time to pass and just lay in a hospital bed until I (or more often, my Mom) talked myself in to going for a walk.  I became detached from feeling and being.  I was waiting for October, when I could expect to feel better. 

I am now in the thick of the pain.  The side effects of radiation accumulate and build until after the treatment ends.  The first night of being out, I vomited all night and became severely dehydrated; I was terribly afraid that I simply couldn't exist out of a hospital environment for the time being and I would have to go back.  I had a slow turn around and began to tolerate crushing pills to put into my stomach tube. My esophagus has felt worse over the past few days, and my tongue is still a mess… but I believe I may be on the cusp of a healing breakthrough.  I can hope this is the case.

My Aunty Cheryl was over for a quick visit today.  It was lovely to see her- I literally miss everyone... and I cried for the fist time in a long time… Cassy played a video of when I rang the bell after my last radiation treatment.  (There is a bell in dedication to a 5 year old girl who finished radiation treatments and it is a rite of passage for those who have completed their treatments- it was a very emotional experience for me).  I have shut out so many pieces of my experience for the time being, I realize this now, as I have slipped back into survival mode.  Thinking about radiation therapy makes me feel wounded.  Putting the journey into context and feeling proud of myself for being this strong, fills me with an intense emotion. I honestly can not believe all that I have had to endure.  It makes me thankful to not have known the extent of the treatments when I first heard the word cancer back in February.  My god, I would not have been able to keep my head up after everything if I knew I would continue to be knocked down.  I can admit this has been a struggle.  I will be the first to admit I am so god damned afraid for my life that I silently pray all day to be able to live. I am constantly on the verge of tears, but am physically unable to just let go and surrender a full-out cry session.  My throat is so tight and there is so much pain that when I start to tear up, I have to breathe and meditate through the moment.

On Thursday, I had to go to the hospital to get blood work done.  I also had a doctor appointment for an infection… my body is literally maxed out right now and any more stress could land me back in the hospital.  Being out in public was a scary experience- I was leery of everyone I encountered and wore a mask and gloves to ward off any germs.  I saw a few people I knew and literally could not make small talk.  I used to be the Queen of Small Talk, but I just don’t have it in me right now.  I am unable to relate to people.  I guess I may be in a different space soon enough, once I can apply some normalcy to my life again!  To go grocery shopping, have at least an ounce of a social life, not be consumed with my white blood cell count, not be on 14 prescriptions, …live in my home.  I’m just not there right now.  Perhaps I am forever changed and will never go back in that direction.

Boudicca.  My sweet girl is so big, so quick and so bright.  I am constantly in awe of her, as I feel I am getting to know her all over again.  She is so much bigger than the beginning of the summer- the last time I was her ‘full-time’ Mom.  She is a sassy little person who could walk all over me, and it wounds me slightly to say no to her.  I want to protect her and give her the world… and ultimately, she needs to be balanced and learn several vital lessons. I am so pleased she has been so resilient throughout all of this; it would have been infinitely more difficult if she was having a more difficult time with this transition. She misses Richard, but we are were we need to be right now.  The bond she has developed with my parents (especially my Mom) is beautiful and strong.  She has loved playing with her cousins and receiving love and comfort from my sisters.  And we will be going home soon enough.  Home… the concept of a home really has changed for me.  I have several homes, which is complicated but comforting.

Love to all,

M

One More Weekend...

I have managed to make a tragic mistake in blog-ownership... I haven't updated it in far too long! I have no excuse.  I simply haven't felt like communicating until now.  I have found myself in a true purgatory state for nearly 4 weeks- I'm in the hospital. It all started on the day of my wedding anniversary, July 11th, when I had an allergic reaction to my chemotherapy session (earlier that day).  I had a terrible fever, chills, and a rash; my Mom rushed me to the Emergency Room at 11:30 pm.  I endured blood work, urine tests, an x-ray, several rounds of questions by doctors and nurses and an unreasonable amount of pain.  My Mom stayed by my side, trying her best to keep me as comfortable as possible.  I remember falling asleep for small segments and nearly grew delirious in the chaotic environment- complete with intoxicated people and various demographics of the Saskatoon community. We spent nearly a full day in the Emergency Room before being placed on the Cardiology Ward the next night. My Mom only left once my husband showed up and she knew I was taken care of by appropriate nurses- being that she is an all-star nurse, I couldn't be luckier to have a more appropriate guardian at these scary times.

I got moved to '6100'- the Oncology Unit at the RUH. I have been here for so long that it is an eerie version of a home to me right now. I have a rhythm to my day and spend my time anticipating an interrupting intrusion of my little hospital room world.  I couldn't even count how many exist everyday: doctors (I have seen at least a dozen on a semi-regular basis), nutrition experts, nurses, special care aids, social workers from the Cancer Clinic, people bringing telegrams, people mistaking my room for another patient's, or asking if I want my tv hooked up, residents, dentists... but sadly, no real visitors. A lot of the time, I have been too fragile to accept visits from friends and family. 

I only made an exception when I attended a fundraiser put on by some of the most generous and beautiful friends anyone could ask for... it was one of the most intense moments I've ever had.  For 3 and a half hours, I got to be 'normal' and celebrate with so many loved ones. I haven't been able to have a typical summer, and that night filled me with so much love and inspiration that my spirit is still soaring from it. 

I have only had a feeding tube surgically implanted in my stomach for a week.  Prior to this, I was given a concoction called, 'TPN' (Total Parenteral Nutrition) through a PICC line (Peripherally Inserted Central Catheter), which was also surgically implanted in my upper arm and acts as a semi-permanent IV. Because I have not successfully swallowed any liquids (water included) for the duration of my stay, I have relied on these two methods for all of my nourishment. It has been psychologically painful to think that if I could just swallow a glass of water and work my way up to other liquids, I could go home and be with my daughter. It goes against every ounce of survival skills in my possession and the frustration was constantly in the back of my head.  Alas, I could do nothing.  I am still unable to do anything.

I haven't had any privacy; complete with detailed questions about things like my bowel movements (definitely not in my comfort zone).  The biggest challenge hasn't been born from the fact that I hate hospital environments, but rather because I've had to be out of my home environment, with my loved ones (most of all, Bu) at the core. I have missed her so much that I carefully weep at night -I say carefully because my throat is a big, scabby mess and even crying requires more energy than I can spare.

I have completed both chemo and radiation. Radiation wrapped up with a lovely ceremony- I got to ring a bell that is mounted on to the wall of the RT area. It was so lovely to take part in a ritual, especially one that started in honour of a 5 year old little angel who had radiation and her family donated it to allow survivors to take part in this passage to the next chapter in their journey. It proved to be an emotional passage as my parents and sisters embraced me with tears and felicitations. Chemo wrapped up today and I am afraid to admit that I have been waiting for the proverbial other shoe to drop. Chemo caused my 'imprisonment' nearly 4 weeks ago and I can't help but be fearful that misfortune is brewing in my blood.

It is a bizarre experience to have pre-chemo meds hooked up and know that there is still an option of saying 'no' to the Cisplatin. The way they give this chemical concoction is through IV and the drug itself is labeled by a bright, neon green bag- making it look frighteningly radioactive. A very big part of me wanted to reject it and be done with this cycle, but I have invested so much into this therapy that it seems a pity to walk away at the end.  I feel I owe it to myself to give my future the best possible 'margins'. My doctor had said that the side effects I have been experiencing are quite concerning (hearing loss, the allergic reaction, mucositis, mouth sores, kidney problems) and I had to carefully weigh the pros and cons. In his absence, for 2 weeks, I had seen many of his colleagues and have to admit to feeling misguided by one of them. My White Blood Cell and Neutrophil Counts were low earlier in the week. I could have been transfused to bring them up, but he said if we wait a few days, it should be fine. When my doctor returned to have this very real conversation with me, he said it was too bad that I didn't get the chemo earlier, as it is most effective within 24 hours of my last radiation session! It is too late to do anything about that now, but I can't help feeling disappointed in the gaps of care. I just have to hope that what I have endured will be enough to give me the precious time that I crave so intensely that I will happily live a life without ample hearing, taste, saliva, normalcy... I have done all I can do. With massive open sores in my mouth, I still did my daily fluoride treatments that caused such an intense burning feeling I felt I was going to pass out from the pain. I meditated my way through it. I walked around the hospital to keep my strength up, dragging an IV pole with me everywhere I went for a month. I watched my child develop very quickly into a little girl in between her visits and spent lonely nights in a hospital bed trying not to allow my heart to turn bitter at this hand I have been dealt. I have tried so hard to remain in the moment and celebrate even a portion of each day so that I wasn't constantly trying to fast forward to the end of this journey. I need to feel this angst and need to be present, as I do not want to have to go back to this place to address what happened; I want to move on gracefully and own this.

My daughter is coming to visit me right away.  I haven't seen her in a couple of days and will hopefully be reunited with her more permanently when I leave this place and go to my parent's farm to start healing 'outside'.  I can't wait. Well, I can wait as I have been... I'm almost free! 

With Love, 

M 

P.S: I am foregoing proof-reading this, as Darling Bu has arrived. Any errors will have to just add to this post's authenticity...

Strange Routine (July 6, 2011)

My days of radiation therapy are becoming a strange routine. We go to the Royal University parking lot, deposit our monthly pass and the arm lifts, bidding us entrance. My Mom hands it back to me, I put it back into the protective sleeve and grab our 'cancer clinic parking permit' to place on the dash. I walk into the cancer clinic with my Mom (and sometimes Bu). I use hand sanitizer, smile at the lovely women at the reception desk and head downstairs. My Mom takes my photo by the door marked, 'Radiation Department' every day, and we head down to the RT reception desk. I dig around in my purse for the mandatory appointment card, where the next day's time is written down for me. We wait for a few minutes, I usually decide I should quickly pee before I'm called, and then an RT staff member comes to get me.

My Mom watches my sunhat and purse while I wind down the hallway to the 'Meadow' RT room. I enter the tiny change room and select the most worn, softest gown from the stack, take my bra off, pull my strapless dress down to my waist, and tie the gown at the side (I am unable to tie it at my neck, as my left arm is not very mobile). I glance at myself in the full-length mirror and exit. I deposit my bra (and typically, a scarf) in one of four lockers available. I often am called right away, but sometimes I sit and wait. There is a really beautiful kaleidoscope sitting there, and I occupy my time by slowly turning the bottom to change the lovely images only a slight frame at a time. When I am called, I use hand sanitizer again and walk around a corner, down a hallway and round another corner to the now-familiar area. If I am wearing glasses, I set them down on a chair. I recently found out I am able to wear my contact lenses, which I favor, but I ordered 12 pairs of glasses on-line and am sure I will be flaunting them soon.

I keep my sandals on and walk over to the plank that I am to lay on. Polite conversation is typically exchanged. I am becoming a bit of an expert at where to position myself on said plank, so that when I lay down, my shoulders, head and neck are where they need to be. Then I tilt my head back and forth until I find the perfect position for it. I take my arms out of the sleeves of my gown, typically exposing my breasts (I haven't quite mastered the maneuver, and quite frankly, don't care too much). There is music softly playing in the background. One of the techs puts a contoured cushion beneath my thighs and I am always comforted by the feel of it. Another tech goes to grab my mask off a shelf where there are approximately 15-20 similar ones. I am always a bit startled when it appears over my face and comes down over me. I rarely have my nose in the right spot, and have to wiggle around to find the true place for it. For the first 6 treatments, I kept my eyes closed the entire time, as I felt pressure on my eyelids and was honestly too afraid to open them. Now, I keep them open for the first while and close them when I start to meditate and drift within.

After my mask snaps into place, the plank is raised and the few lights that are on are dimmed even more. Red X's are present to line me up. I was given 3 tattoos when I went for my mask fitting. One in the middle of my chest where my cleavages starts, and 2 on my sides, parellel with my belly button. A black pen is used to redefine the areas (a scope signal, like an aiming tool) The techs manipulate my shoulders, use the sheet beneath me to slightly rotate me the slightest fraction and use terms like, 'A little ant' or 'I'm slightly post' and they raise the plank more or less, move it side to side and calculate very precisely where my entire body should be. At this point, I tuck my hands below my hips, careful not to adjust even a little. I was cautioned that I wouldn't be strapped down completely with restraints, but only if I can manage not to move on my own. I only get one chance, and I am determined to keep even the slightest bit of freedom.

Sometimes the music is turned up as the techs announce I am ready and they leave the room. I have never been disappointed by the selection of songs- I feel as though each day, there is a new playlist tailor made just for me. I've even joked with a couple of the girls that they must have really done their research, as they appear to know my musical tastes so well! The best part of it is that I narrowly escape a Taylor Swift song or Sweet Home Alabama, as they start to play when I am exiting the room.

I am slightly adjusted by remote control once the girls are at their desk and have to line me up on their monitors too. Then the buzzing noise starts, and the equipment begins to rotate around me. There is a square window that starts out inches above my face. There are 'leaves' in it that move around and adjust just the right amount of radiation in just the right areas, protecting things like my sense of smell, my hearing and eyesight. Good stuff. I try to keep my eyes open, but eventually lose interest in watching the machine move around me. I close my eyes and focus on being healthy. And I pretend that the radiation is reiki love, coming into my body and healing me. This causes me to relax and focus inward.

I used to get a half-way point heads up, but asked to not have it any longer, as it tended to startle me when a voice on a microphone comes through speakers and says, 'Krsh... Half way done, Megan'. Typically before I know it, 20 minutes have passed and someone is at my side reaching over my face saying, 'All done, Megan', and I slowly become aware of my surroundings. I put my arms back into the sleeves of my gown and wait for the plank to be lowered, the cushion removed from under my legs, the mask taken off. I sit up slowly, put my legs over to the side and tie my gown. I grab my glasses if needed and walk out, get dressed and say good bye to the several staff members. When I meet my Mom in the waiting room, she is sometimes chatting with someone and she tells me their story once we leave the building. We sometimes have to see a nurse to change an appointment upstairs, or chat with my social worker, or grab a copy of some paperwork.
It is a strange routine, a strange existence right now.  I have found a surprising amount of comfort in the routine, as it means that time is moving forward and I'm not stuck.  With grace, patience and support, I will be on the other side of this experience.