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...