What to say. It has been a tough couple of weeks. I started becoming tired, almost as if I was on the original chemo regimen and started spending more time in bed. Very lethargic. Lost the will to do anything almost as soon as the will to do something emerged from the depths.
I started spending more and more time in bed. Wake up in the morning, have breakfast, maybe drive Janet to work. Shop for food a bit, then come home and collapse in bed. Sleep from ten in the morning to around two in the afternoon. I thought at times I was not eating enough, or drinking enough water. Increased both those. Got hit by bouts of nausea. Took pills for that.
Fetneh kept insisting I go for acupuncture to increase my energy levels. I kept promising to go, then forget the promise made. Almost as if I did not have the energy to go for the one thing that might just increase my energy.
No one was very happy about this. Janet had to almost accept reality. She could not do anything about it. Kept encouraging them to get on with things. Make a plan, everyone said. Set up a routine and do it. It does not have to be complicated. Just start doing things. I am doing things, I am sleeping. You can bet that put a smile on their faces.
I took my daily sleep last Friday. I had the shivers while lying under the winter comforter. We are in fall mode, nowhere near winter. I should not be cold. I closed all the windows. Still had the shivers. They kept waking me up. I finally roused myself around three in the afternoon. I was hungry. A man has to have his priorities. I was also in pain.
Oh yeah the pain. I have started having these pains along the bottom of my rib cage. It turns out they are due to an inflamed liver. Could be a good thing or not depending on whether the tumours are getting bigger (bad) or smaller (good!). Tylenol 1s take care of the pain rather nicely thank you very much. I pop a couple of those, get dressed and make my way tot he kitchen. I am still shivering.
I am out of breath by the time I get down there. I may have neglected that part of the narrative. I have running out breath a lot as well. Say a couple of words and take a few breaths. It comes and goes. There does not appear to be rhyme or reason for the effects.
I get myself something to eat and am still shivering. I am so dense these days. It suddenly occurs to me that I may have a temperature. I go back upstairs to get the thermometer. We have one of those units that you stick in the ear. It responds in seconds. I register 38.5C. I am supposed to go to hospital hen I hit 38. I decide this is an anomaly. The T1s will take care of it anyways. My temperature goes down as the day progresses, hitting almost 37, An anomaly it may have been.
Janet is in New York on business and to see Devin. She left n Thursday morning. She has arranged, or the friends arranged to come look after me. Diana is coming to feed me on Friday night, and Nancy is doing the honours on Saturday. I have been cooking up a storm of late and find this very amusing. Given my level of fatigue, breathlessness, and fever, the rescue is very welcome.
Diana, Andrew and Leona being dinner over. I love teasing her kids. They are extremely bright and rise to the occasion brilliantly, not shy to defend themselves under my relentless attacks. Diana does not have to step in to defend them. They do an admirable job. They also take the teasing in the spirit it is intended in. We have a good time. Andrew wants advice on what sort of computer to by. He wants something zippy, fast, a computer that will almost read his thoughts. Come on instantly. Oh Andrew, good luck with that. Speed is so relative to your experiences.
I am obviously done for, and they take their leave. Leslie has come home to keep me company. I feel bad, because I am headed straight to bed. She is not to be deterred from her objective and insists on staying home.
Saturday morning sees me with a temperature of 37.8. Sigh of relief. A couple of T1s will, and do take care of that. I go to the market but do have the energy to walk around. I come home, and go to bed. This is getting ridiculous. Wake up a lot later and start doing stuff. Pain, breathless, getting really frustrated. I have a telephone conversation with Janet. She is having a fine time. Devin is doing well, having a good time at The New School.
Nancy calls to confer about dinner. Pasta it is. I have cut down on my eating. Severely cut down to avoid stomach aches. She will cook it when she gets here. I take my temperature. Yikes, I am back at 38.5. Nancy will take me to hospital after dinner. Nothing worse than going to emergency on an empty stomach. They do not have decent food there. We eat, with Leslie coming home and joining us. She stays behind to clean up. Nancy and I drive to the hospital. She drives, I go along for the ride.
I bring all my pills with me. I have one Chemo pill that I have to take at 8AM and 8PM on Fridays and Saturdays. We arrive at the hospital at 8:00PM. Walk up to the triage nurse. She is a bit brusque. Are you here to see a doctor. I am a bit confused by the question. Not sure what my options are. Stammer something like, I guess, maybe, sure. She is getting impatient. Are you here to see doctor or a patient. Clarification. Oh a doctor for sure. I look at Nancy. I don’t look sick enough. She seems to think I am healthy.
I take a seat next tot he nurse and start answering her questions. She takes my vitals. My temperature has not budged. So I am sick. She is much calmer now and processes me. Nancy and I sit in the waiting room. We are barely settled when I get called in to register. I am also told it is safe to take my pills. I take the pills, register, get my wrist band to make sure everyone knows I am a genuine sick person. We settle again in the waiting room. There are maybe half a dozen people ahead of us. Not bad for a major downtown hospital on a Saturday night. Should not be that long of a wait. We are called in almost immediately. Nancy is impressed. I make sure she comes in with me. Nothing she has not seen or talked about.
We are ushered into a private room just beside the nurses station. I like hearing the action and conversations. There is nothing worse than being secluded while in emergency, you feel as if they have forgotten about you. They come and do blood work, request some urine. Nothing unusual. They are prompt and friendly and young, so young, and very pretty. As Judy said, I am not that sick. Dr. Quinn comes in to talk to us. They will do a CT-Scan of the lungs, ultrasound of the heart to make sure there is no water around it, more blood work. The original blood work has come in negative indicating there are no infections. They took blood from my Port-a-Cath. They want to take some more from my veins to make sure the Port-a-Cath is not infected.
Nurse comes in with two very large vials to get more blood from me. They assure me I have enough. She pokes me and takes her samples. They will be used to grow cultures in the lab to make sure I am truly free from infections. There are a lot of people with colds around us. The doctor comes back. The CT-Scan machine is not working. They will take a chest X-Ray instead, looking for signs of pneumonia or other items obstructing the lungs. They still want to do the Scan which will find things that the X-Ray machine cannot see, such as small blood clots that may have made their way into the lung. They do not think there are any since I am taking a blood thinner, but I am a critical case and they are not willing to take any chances.
Everything happens pretty quickly. By midnight, they have decided I should stay in the hospital for observations. The X-Rays show a number of metastasized cancer cells in both lungs. From what the doctor says, I am guessing more than before. I thinks her words were there are a lot of mets in your lungs. Nothing else though which is both good and bad. Good which means I am free from infections, bad because they have to keep me to do a Scan during the day.
Another doctor, Dr. Kimberly Bremmer comes to visit. Internal medicine. She will look after me during my hospital stay. The general consensus appears to be that the Scan will also reveal nothing. They feel that all the symptoms I am showing are a result of the cancer getting worse. The information leaves me a bit numb. Nancy and I hold hands.
I am in a room by 2:00AM. A semi-private room was all that was available, and no room mate. Time are tough. Leigh and Sascha are out on the town and decide to join me. Am I able to take visitors at that time of night. Sure says the nurse. They get there by 2:30 and spend an hour with me. I have to kick them out. This is just slightly past my bed time of 9:00PM.
Dr. Bremmer visits me in the morning. She is with a retinue of interns and a more senior Doctor. They are all very serious. VERY SERIOUS. No smiles from anyone, except Dr. Bremmer. They go over my situation. Sunday will be a day of rest and observation. The Scan will take place on Monday. Cannot see the future beyond that.
Nancy and I spent the night texting with Janet, Leslie, Fetneh, and Judith. It was almost comical. Hospitals have given up trying to stop us from using our cell phones. Sunday morning saw more of the same, adding emails to the mix as everyone was kept in the loop about what is going on. My fingers were getting sore. Nancy came back to keep me company and also to bring me my phone charger. Janet was on her way back from New York and would be at the hospital around 2PM. Nancy had to leave by lunch time to take Lilly (her daughter) to her riding lessons.
David Jang dropped in to keep me company. Janet finally showed up, as did Diana, and Leslie of course. The traffic of eMails and texting finally came to a halt. It seemed so quiet all of a sudden. I sent Janet and Leslie home around 7. Janet is not feeling well and could use the rest. I was going to sleep anyways. David left around 6. None of us wanted to discuss the worse case scenario.
I had to stay awake till 9:PM. The nurses had to come around and make note of our vital signs. No temperature, pressure OK. No surprises. My nurse is very charming and we have a long chat about things in general. She leaves, I close the door and try to sleep. Did not have to try very hard. The bed is very uncomfortable, but it matters little as I drift in and out of sleep.
Mount Sinai hospital where I was, is attached to the Princess Margaret Hospital. They all have access to patient files at each other’s establishments. The doctors at emergency and at the hospital were fully up to date with my condition. I was very impressed with their service, professionalism, and general conduct. I was disappointed by their food. Hospitals can surely do better. We are all told about the dangers of proceed foods, and yet are being fed stuff like Rice Krispies and 1% milk as part of a healthy diet. There is something seriously amiss here.
The Scan takes place on Monday morning. The results are in by 2PM. As I keep telling people, I would be a healthy person if it wasn’t for that small matter of having cancer. I am free of infection, blood is clean, lungs are clean, heart is healthy, all organs are functioning properly. Except for the mets. that are having a jolly party.
The title of this entry is Not Enough Words. We are all a bit numb at the news and are not sure what to make of it all. Do I have still have two years in me? More? Less? Janet and I have decided it is time to make some plans. Decide what we want to do and do it.
My father died in a rather ferocious car accident in 1999. The doctors at the hospital reassured us by saying that he did not suffer, that the brain shuts down in the face of huge adversity. So it is with us. There are no thoughts going through my head. The brain shuts down. Every once in a while you wake up and go, oh yeah, I have to think about this, and the brain shuts down again.
There are not enough words to describe what we are going through. Me, my family, my amazing friends who have rallied around me seemingly oblivious to my obvious shortcomings.
