Documenting my life with cancer
| "I Have Cancer?"
Today is Thursday, August 19th, 2010. I have just gotten off the phone with Dr. Hockstein's office to see if they could see me today instead of tomorrow, to remove my staples from the surgery and for a more important issue, increased pain.
A lot has happened since my last entry and I had thought by now things would be getting a bit better, but instead they took a turn to the worse late Sunday night and into Monday morning.
I had just seen my Dr. a week ago Friday and had my drain tube removed. He informed me that the wound was healing very nicely and had very good news for me. He had removed some 23 lymph nodes surrounding the first infected area, as well as the left tonsil and surrounding tissue. The pathology report was good. No evidence of cancer in any of the other lymph nodes and no spread of it detected. Only in the one swollen lymph node and the left tonsil. He smiled and said I have very good news for you. Your chances for recovery have just risen even further.
In the first meeting I believe they said I had a 70% chance of recovery. A friend with me mentioned 75-80, and another staff there said they like to low ball the rate rather then be optimistic. So when Dr. Hockstein announced my chances had increased, that put me near 90%. But I have found that I am still in a state of shock somewhat and feel unmoved by anything that is said to me. It is almost like an out of body thing. Where I see everything, but cannot react to it.
I went back home and my appetite returned that weekend and things were looking up. I did however continue to get these severe headaches and ear aches, and foolishly took a different medication for that. The medication contained aspirin in it and without thinking, continued because it gave me the relief I needed. That is, until late Sunday night when I woke up swallowing my own blood. As I lie in bed, I kept getting a mouthful of saliva, (I thought) and would swallow only to find that I was chocking again seconds later in more. I rose to the bathroom, spit into the toilet and to my alarm, I was bleeding, and very profusely. What the hell had gone wrong now?
In no time I was at Christiana Hospital and in a private room. A call was sent to my Dr on call, Dr. Donnelly, who I had in fact called earlier that evening about the pain. He arrived shortly after I arrived there and he ordered a Cat Scan to locate exactly where it was before taking me to the OR. As long as I sat up the bleeding slowed considerable.
They took me for the Cat scan and as I slowly laid down and was taken into the machine, the blood gushed again. I yelled to stop and get me upright and they did with some concern. They quickly got me gauze pads and a tray to spit in as they figured out how to do the Cat scan. After about 20 minutes they tried a siphon and I agreed to do it even thought the blood loss continued. There was no other option.
About 25 minutes later the Dr. returned and we talked. He explained that in a few minutes they would be prepping me for emergency surgery and that this could have been much worse. I was in danger of bleeding out right there and in his words he mentioned that at one point, he thought he may have had to run me to the operating room.
The surgery took all of 10 minutes to re-cauterize the rupture and another hour and a half trying to come out of the anesthetics. That was early on Monday morning and today it is Thursday. It has been extremely hard to swallow again and even a few small mouthfuls of water brings instant pain in my throart and up into my ear canal area. I want to eat and drink to build up my strength but I am unable to do so yet. My Chemo starts in a week or so along with the radiation treatments. I need to have as much strength as possible right now and after two, well three surgeries in two weeks and not eating much. I am a bit wore down, to say the least. There is also an emotional element that I wish to discuss a bit later in this chapter, or the next. I will continue with this chapter after my visit today.
1:15 pm, Thursday afternoon I met with my Dr./surgeon, Dr. Hockstein who took out my staples from the initial surgery and we discuss the setback on Monday and its consequences. He reassured me that I still looked good as far as the healing process goes and that although unfortunate, the bleeding that I experienced was normal or at least not uncommon. We discussed the sneezing episode and he felt the area that now causes so much pain, and decided that a measure of blood had collected there but in time would go away and heal up.. He also mentioned that he realized that the pain medication was not sufficient to someone who had been on pain medication for some time, which I have been for some 6 months, with my back problems.
Further he mentioned that the type of surgery I had is one of he most painful there is to endure .
As a mentioned there is another element to the whole revelation of being diagnosed with cancer. It is hard for your mind to shift gears from a mindset that, life is OK and your doing fine, to one of, you now have a life threatening illness. So as a result, in a matter of 4 weeks, I have had to rethink my whole life now in front of me with the possibility that it could get worse and also, I may not be able to go back to work for a while, perhaps never again. And to a person like me, I had never entertained the idea of retirement. It is not in my nature and believe hard work leads to a longer life span. Especially if it is satisfying work. On the other hand a stressful, unsatisfying job may very well lead to an early grave.
Needless to say, these past weeks have led me into depression, anxiety, and anger. I am finding myself very short with people, rude, and impatient by any bureaucratic bullshit, in what would seem to be simple things. Now prescriptions that are filled for the same medication, (i.e) pain medication, in under a 30 day period cause a stir and requires a host of verification and calls back and forth to just get a pharmacy to fill it. And with all the recent stigma over the abuse of Opiates, such as Percocet,Vicodin Oxycontin, and others. Dr.s are reluctant to draw suspicion if they over prescribe and patients are scrutinized as if they all were dope addicts looking for a fix. It's therefore frustrating to say the least when you are standing in front of a pharmacist, in obvious pain, and in my case, half my face stapled together, then still have to undergo the same ostracism as someone who looked like he came in off an all night bender. I do understand but with my new temperament, have little to no patient to even hear a negative response to such crap. Today I had such experience with a pharmacist who cut me off in mid sentence to clarify that a Dr.s verification was not what he needed to fill the prescription. Beings that I was a.) in a lot of pain, b) had not slept in weeks, and c) had not finished what I had to say before being interrupted by this condescending prick, I let loose. I informed him that number one, I was not finished what I had to say before he rudely cut me off; and two, he was going to hear me out whether he liked it or not. Which I did and promptly walked out informing him to fill it as directed and before I returned would have all the proper information and verification's he needed. He was called by two different Dr.s and Medicaid and 30 minutes later he was no where in sight when I picked the prescription up. I stood patiently at the counter, gave may name and was loaded for Bear so to speak, if I heard one more holdup or remark about the whole affair.
What I think is significant about the whole thing is that, two months ago, I would have handled this much different. Now my whole mindset has changed and my tolerance for ignorance and stupidity is short to say the least. My emotions are running high and have found myself crying after leaving the Dr.s office, even after the pharmacy for no apparent reason other then this whole thing is becoming overwhelming, and with each passing day it worsens. I had always been a strong willed man, determined and very self reliant. Now I have a self image of someone a bit helpless and needy. An image I would have never drawn on myself. The anger and fear of having cancer spills over to loved ones and your happiness is slowly replaced with despair. Counseling is probably the next best choice on my list and the Cancer Center has staff to handle those needs.
This is my third weekend to sort things out and regroup for the next week of visits and revelations of my new lifestyle. So once again thanks for reading and hopefully you will contribute something. S A Gibbins