My first days with cancer: FIRE HOSE

I am back in the hospital outpatients, this time watching the drip drip of a blood transfusion as it is added to my own, in the hope that my kidneys will get the message that it is time to start producing their own red blood cells.

My first days facing this new disease were nothing short of a FIRE HOSE experience. It started from the outset on the day after Christmas. We had been warned there was a possibility that I might be admitted after tests were done and Dr. Atanackovic was quick to want to start treatment immediately, even before getting the final results from my bone marrow biopsy. He was already convinced of the diagnosis and wanted me to be hospitalized to get my kidney function under control. 

We were somewhat prepared with a packed bag but I laugh at my thought patterns that morning: "Are my underwear whole? Mum would want me to be decent for the doctors." Immediately upon arrival in my hospital room that seemed bigger than Texas they started me in a kind of routine that made me realize this was not going to be a picnic. An IV was inserted into my arm into which a constant flow of liquid was being pumped: I put on 14 pounds of fluid in just 2 days and felt like a blow up balloon. Every four hours either a nurse or nurses' aid came and took my vital signs: blood pressure, heart rate, temperature and oxygen saturation.

Going to the bathroom was a new experience. The toilet had these little hat things in the bowl (no pictures sorry) that measured everything that left my body. I was not allowed to flush my own toilet as they took a 24 hour urine sample (think about that!) for my first full day in hospital. They also measured whatever went into my body: fluids and food all meticulously monitored. And then there were all the medications. A massive dose of steroids made me feel all jangled inside but the blessing that came with it was having my appetite return, even if just temporarily. Finally, they started injecting me with a chemotherapy drug called Velcade. There were sodium tablets, aspirin for blood clots, acyclovir to prevent viral infections and tablets for nausea. I went from not taking any medication for all of my life to have a virtual pharmacy of meds morning and night. The pain medications were welcome but they were opiods and I was immediately frightened of becoming addicted to them.

Alan went home that night with Aaron and I spent my first night in the hospital on my own. I kept telling myself that I am a big girl and I focused on fitting into the routine. The four hourly check ups happened night and day and the IV fluids of course continued relentlessly. Sleep was clearly going to be a challenge. Meds came at 8pm, pain meds between 11pm and midnight and then four hourly. At 5am there was a double whammy: Check vital signs AND getting my first experience at drawing more blood to check my kidney function.

My back pain had become progressively worse over time and I definitely needed help to get to the bathroom in the night. Even rolling over in my bed was virtually impossible without unbearable pain, let alone making those steps to the little bathroom. I tried not to be embarrassed to use the call button to get help. The nurse aids or nurses came quickly but I think they underestimated just how paralyzed I was as I virtually collapsed to the floor each time, forcing them to catch me, tubes and all. 

During the day, there was an endless stream of medical personnel who visited with me to share their respective areas of expertise. Alan brought Aaron back to the hospital to stay with me during the day and the three of us faced the barrage of information that kept coming at us: A physiotherapist, an occupational therapist, a pharmacist, the physician's assistant each morning and the regular doctors from the ward on their rounds, a nutritionist, the finance woman (yes, there is such a thing), room cleaners and always ever present nurses and nurses aids. There is actually a white board in each room where they constantly change the names of the personnel looking after you as shifts change. Hallelujah for a touch of old fashioned technology to help me keep up.

There is room service at the Huntsman and every time I ordered breakfast or lunch or dinner I would have to reel off my name and date of birth. This latter piece of information is like a code to get you whatever you need or to access whatever medical staff you needed, that and the constant scanning of my wrist band as I recited my name and date of birth. It was wonderful to have my son join in this fire hose experience and see first hand how things flowed. Both he and Alan asked the medical personnel umpteen questions as I just succumbed to the flow.

I was in the hospital for a total of 2 days that first visit but it felt like an eternity and finally I was discharged, of course following a visit with another medical visitor to make sure that my home was a safe place to go. But then the frantic nature of this treatment did not stop there. Appointments were made for a full body Pet Scan, I was contacted about radiation treatment for my back in the weeks to come and there was discussion about a chart of visits when I would come and get the regular chemotherapy injections and be given a regular regimen of highly specialized drugs.

The steroids were to come weekly (oh joy!!!) and then a tablet something akin to gold in its expensive nature called Revlimid was to be administered once our new health insurance kicked in on 1 January. Not to worry, only $17,000 for one cycle of tablets (14 of them). The finance woman had managed to get our insurance approval for this specialized drug but suggested a way to reduce the cost further by sitting on the phone at 7am MST on January 2nd the minute the office opened to ask to be included in the Revlimid trial directly with the drug company. We were successful in being enrolled for the drug at $25 co-pay for each cycle of drug that very day. Miracle achieved!

Of course, who could forget the twice weekly injections of Velcade, directly into my belly fat. Yes, I really meant to say belly fat. Apparently the fat ensures a better distribution of the drug. Who knew?

This was a whole new world and I was caught up in it. The coordinator of my chart, Lori (Yes, they have one of these too and thank goodness!) and all the other staff warned me that the first month I would just put one foot in front of the other and turn up when I was supposed to in almost a mindless fashion before my life would come back to me. What did Dr. Atanackovic say? "You will lead a normal life again!"