Experiencing Life

I was watching a documentary about a man that was dying. He was reading passages on dying. His niece was asking him how he felt about dying. I was thinking that you are never dying. Some people say they want to die with dignity...they speak of the art of dying or how dying is what happens to everyone at one point. But, when we think of Life we remember the experiences we have gone through; the emotions that we have reckoned with and the joy or devastating effects of these emotions; we can try to calculate the number of thoughts that have cascaded through our minds...we can ponder the insignificance of a single human being standing on a planet that is spinning hurriedly on its axis and, in turn, racing around the Sun at breakneck speed. The Sun whirls around in the Milky Way Galaxy circling what? The Galaxy dances through the Universe with other Galaxies with mind-boggling energy. How many other planets have insignificant life-forms...are they really that insignificant?
I entertained the Doctor and nurses and staff at my appointment today. I had the drain removed from neck. We laughed...he gave me a piece of paper--the Pathology Report of the biopsy I had endured this past Tuesday. Of all the sample tissue they removed, none showed any metastatic tumor. The lymph node tissues were Benign.
My  initial diagnosis of advanced cancer gave me pause but did not scare me. I was worried for my loved ones and friends. I enjoy Life. Dying is part of living. But it is living nonetheless. I have emotions to rock me.I have experiences still to collect and sort. I have thoughts to amuse and disturb me. I have living to do !
I called my Pastor with the news. He wondered if I was dancing...no, I said, for the first time I am scared. The Lord's Healing and all of the Prayers are bearing fruit. Satan the Devil has got to be very, very mad. I am afraid to step outside for fear that a demented senior citizen cruising at 25 miles an hour in their long, just-waxed sedan will lose control and roll over the curb and get me!

I will have another, more specific biopsy on the 1st of February. It may find a malignancy. It may confirm the medico's suspicions. But, I am living life. I am wary. I am trusting in the Lord. I am enjoying the company of friends. I may listen to some Pink Floyd...Life is Good !

Tissue Biopsy

I arrived at the hospital at 745am and the staff was very helpful and professional. They brought in all of the key players to meet me and explain what their function was and what the procedures and protocols were. The surgeon marked my neck to alert everyone where the procedure would be done. I have joked that he forgot the mark and that they wheeled me into the operating theater backwards with my ending up with a vasectomy instead of a neck biopsy.  It's a bit of humor...
As stated, the staff were extremely professional and friendly. My wife was there with me and a family friend, Linda, was also present. It was really nice of her to stop by. My sister-in-law stopped to see me as she was going to work. So, I had a lot of support.
The biopsy went well, although they told me that since the neck mass was near so many blood vessels that they were unable to get as much tissue as they would have liked. They are supposed to perform another procedure later this week or next week and will use a local anesthetic and guidance from a CT to guide them around the blood vessels.  They put a drain in my neck and I have a small plastic flask attached to a tube that is pinned to my shirt. It needs to be drained and measured every 8 hours. I have it removed on Friday. It is a bit of a nuisance but I can handle it.
When I was in recovery I had a lot of pain in my left shoulder. They gave me some strong medication and the pain finally subsided enough that I was able to be released.
Next week I will see the oncologist to determine what type of treatment will be appropriate. Hopefully I can get some sleep tonite...I had a nice nap earlier and I would imagine that I will be napping off and on most of tomorrow.

Roller Coaster

 

A clown friend wrote to tell me that when a family member had cancer that it was a roller coaster at times over the several years of the fight. I was doing pretty good since the diagnosis. The pain and the medication are something that takes a bit of getting used to, however. I injured my back several years ago and had two operations and a lot of pain. I complained to my doctor at one time that the medication was so strong that I didn't feel like doing anything except sleep. He said "I want you flat on your back for awhile." And, then when I was able to try to go back to work or school or just resume normal activities, they loaded me up with a lot of medication. I had muscle spasms so they gave me a muscle relaxer. That unmasked the bone pain so they gave me some stronger pain medication. In turn, nerve pain was unmasked and they prescribed further medication. I would go to the pharmacy and they would give me 3 medications and a bottle of Malox for indigestion. "That medication will irritate your stomach," confided the pharmacist. Well, as soon as I was able, I weaned myself from all of the medication and then relied on aspirin or tylenol every now and again for severe pain. I also started seeing a chiropractor which helped immensely. The chiro would ask me what pain level I was in--from 1 to 10---with 10 being the most pain. I was usually a 9 going in. After treatment,I would be a 3 or 4 for a week or so. It finally got to a point that I was actually tolerating a pain level of about 6, so when he asked me what the level was, if it was severe, I felt like saying 3 or 4 (added to the 6 I was tolerating). That only served to confuse him though. 

I have not been taking medication for years except for an occasional tylenol. Now that they have prescribed me something stronger I balked at first. I would take it every 6 hours and a lot of times I would try to go 10 or 12 hours between doses. The pain began to get worse. I was told by the doctor and several experienced friends that you need to stay on top of the medication and pain. I went back to a regular schedule but noticed that I would wake up several times during the night with a lot of pain. So, I would take one a couple of hours before bed and then another when I went to bed and that would assure me 5-6 hours of sleep. The pain has been getting worse though because the neck mass has gotten a lot harder and it gives me a stiff neck and soreness and my shoulder and arm hurt a lot sooner. I was taking a dose about every 3-4 hours and napping in between or going for walks. I wasn't having much of a life...this was just in the last week. So yesterday I took a dose and then after 4 hours I took a tylenol. Then in 4 more hours another tylenol and then a dose of the regular medication. It helped but I had significant pain. I will continue to augment the regular medication with just tylenol and walks and see what happens and then talk to my oncologist next week. I don't like pain, but I would rather tolerate the pain if I can still function and get some things done .

I guess this is part of the roller coaster. I am going in for a biopsy in a couple of hours, It is done under general anesthetic because they want a significant tissue sample to see what chemotherapy they can use. The last biopsy I had was just a local needle biopsy and really flared-up the pain and swelling. I hope this one doesn't do the same.

Tonite is a clown alley meeting and I really want to go, but I'll have to see how I am feeling. We have a really great Clown Alley and this is the first meeting of 2012 with new officers ! Here is the famous website for the alley:

http://gigglesandgrinsclownalley.com/default.aspx

Clowning around

I have been pretty much following the medication schedule, but I was trying to widen the times between doses. After all, I felt, it is for pain..and maybe I am not in pain all of the time. Well, I took a dose this morning about 6 am and then was up for most of the day. Then I took a nap in the evening and awoke with much expected pain. It was 12 hours since I had taken my medication and the schedule is usually 6 hours... I took a dose, but I also found that I couldn't breathe. It wasn't like asthma. It was more like breathing without any oxygen getting through. It was very uncomfortable. It would be like having a dry mouth and big thirst and when you drink some water--it isn't even wet or satisfying. Scary. After the medication kicked in I was able to breathe again but I am going to ask my doctor about it. I have a biopsy on Friday morning where they will try to extract enough tissue to determine if it is small cell or large cell lung cancer. I guess so they can find a chemotherapy treatment.
Yesterday, I went clowning for most of the afternoon. It was fun. Even though I was just sharing smiles with people uptown. I went to visit some friends. I had originally thought that I would drop in to the Health Clinic and entertain the waiting room and some staff.But, there was only two patients in the waiting room and I didn't recognize any of the intake personnel. My doctor was in so I just said hi to everyone and left.

School was letting out because a lot of school buses were rolling through town. There was a lot of traffic on Main Street also. I glided along for a couple of blocks, waving at the cars and people. However, I was afraid I would cause a wreck. People hurrying home from work that suddenly spot a Clown on a Segway seem to get rattled and distracted. I didn't want to be responsible for any rear-enders so I headed over to some side streets and went to visit Gary and Susan, which is always a pleasure. I made a paper-hat tear for their grandson, Brody and hung around and entertained the beagle, Buster, who was too sure about me. Then I came home.

Over my head

My pain medication says 1 every 6 hours. I try to go 8 hours or more between doses. But sometimes the pain becomes strong and I take one in five hours. When I go to bed, it is usually after a scheduled dose and then I wake up after 3 hours with pain and I take another one that helps me get 8 hours of sleep. I get worried if the pain moves to a different place because I then think that the cancer is spreading. It probably isn't but it worries me nonetheless. I would say that if I am scheduled for 3 or 4 doses a day that some days I only take two...at most I take 4 in a day...so, that is not bad...and, it is not strong stuff anyway--which is good...just right.
I have remained upbeat for the most part. At first, I was kind of flippant. I have toned down my smart-aleckness, though. It hit me the other day that the survival rate/period is 8 months. From when? I haven't even started any treatments yet. I will be seeing a surgeon in a couple of days for a consultation to schedule an appt for removing some of the neck mass for a study to see what kind of chemotherapy might work. But, it is on my mind that this will be my last summer on this Earth. I need to start packing up my belongings in order that they are sorted as to what can be given away or sold or thrown out or left to someone that wants my computer books, clown stuff, clothes, etc. I wonder how it will end. Will I be in control of my mind? Will I have a stroke or a heart attack. Will the cancer simply eat me up?
I don't know how someone in this situation can do a Bucket List. Everything at this point seems kind of futile. It is Winter and I don't really feel like going out in the cold. Is this my last experience of snow? I hope that I make it to Spring and warmer weather. I would enjoy walking in the rain. Or sitting by the window, watching a Thunderstorm. I would like to go to some woods and sit there all day long and watch the birds and animals. I don't feel melancholy. It will be ghoulish to take walks and note sights and sounds that I will be seeing for the last time. I just want to be relaxed and take walks and go a few places and be normal and not think about the coming end. I worry about my wife. We talked a while this evening and she said that she would probably get rid of a lot of our possessions (accoutrements) because she would no longer enjoy them without me. I think that maybe we should just look for a smaller house or apartment and move just the things that she needs and wants. To get her started on her new life.
Knowing that your life will probably end this very year is very sobering. It is in the back of my mind and I have accepted it. And, I only want normalcy. What? I don't feel like going out with a Bang...a Flourish?! It is not something that you can plan or anticipate. It just is. I  have so many things that I have held onto: books, travel brochures, knick knacks, toys, crafts...that I thought that I would get into when I got to a point in my retirement where I was bored or motivated...but, that was a different scenario. I don't feel the desire to enjoy them at the present. And, I don't know who I would give them to because I don't know anyone with the same varied interests as me. Mars, Astronomy, collectibles, clown stuff..paints, calligraphy supplies, little projects that I was leaving for my old age---second childhood...
I still have faith in prayer, faith in the Lord...I trust my doctors. I am not resigned. I have not given up. It is just that I have come to the realization that this is an extremely serious situation that I am in and should I make it through the year, I will not be breathing a sigh of relief. I will be fainting from the enormity of the struggle and the energy it will take to stay focused on living. What wisdom I thought that I might be able to share in my old age has been reduced to being Emphatically Flummoxed at having little to impart about the Mysteries of Life.
I'll spend my time in these next few months trying to tame this Cancer Beast and I will devote my energies into being upbeat and caring and thoughtful in trying to prepare my loved ones for my departure. It would be nice if I could just say "Forget about me." But, as human beings, we care about each other and it is not possible to treat another's passing lightly--whether we liked the person or not. So, I worry about others and I pray for their strength and patience and comfort.
And now, the house is quiet, I have made an entry in this blog, and I think that I will lie down for awhile and listen to some Fibber McGee and Molly episodes, some Sherlock Holmes and some Jack Benny. Tomorrow I should be able to download some new episodes of Writers and Company and the Next Chapter from the CBC network...