Yes, I am very happy that what I feared most during several of my writings about possible cancer in my eye went for naught. The results came back from the laboratory as my surgeon broke the news to me on my second visit to his office after surgery. Their laboratory testing team would find nothing wrong with my eye with respect to cancer. It was absence of any sign of the horrible disease and thus - the results came back negative.
During my first visit to his office the next day after surgery July 31st., and having removed the patch from my eye he merely prescribed some eye drops that I have written about in these diaries. He wanted me to buy some other expensive eye drops that at that point I did not know the name or could afford. He assured me that he would try to work with my insurance and have them cover the cost. He sent me home and told me to come back in a week..by then he told me, the results from the lab should be back while "I`ll be working real hard to have your insurance accept to cover for the eye drops. We will then take it from there", he said.
A week later August 7th., I visited the doctor`s office again. He was still trying to get my insurance to approve Mitomycin, his choice and the first time I heard that name. It was on this visit that he revealed the laboratories` findings that no cancer was found in my eye. I believe it was the first time I objected to doing chemotherapy drugs. He insisted, that
"Whatever was left of the small growth from the 99% that he cut out of my eye could still cause me problems in the long run", so he insisted that I use Mitomycin eye drops. But once he broke the news to me that I did not have cancer in my eye I changed my tune about mitomycin. He told me to put one drop into my eye four times a day for thirty days (see timeline below) after I agreed to use it... Remember, my insurance provider has not yet approved Mitomycin by August 7th.
He sent me home and told me to wait to hear from him that Mitomycin had been approved by my insurance provider. He told me to discontinue using Tobramycin but to keep using Prednisolone, both eye drops he prescribed Post-surgery that I had at home.
Since getting the good news my assertion that I would never do chemotherapy quickly changed. With newly obtained information that I do not have cancer, I have to think that the small piece of growth still in my eye, if there is actually any, can be easily erased with Mitomycin if done properly I reasoned.
So I chose to challenge the side effects of Chemo that I had heard so much about and try these eye drops. He also explained a conversation that he had with my primary eye care specialist prior to surgery - that both men had agreed that the small growth in my eye was not cancerous. He wanted to be sure before he broke the news to me of the Lab`s results.
Late on Friday evening, August 8th., the Receptionist at the doctor`s office called me on the phone.
She called to give me the news that my insurance provider had approved Mitomycin after reconsidering my surgeon`s request. I could now go to the pharmacy where the drug was being made to pick it up. We agreed that I could pick it up next morning, Saturday the 9th.
On Saturday morning I picked up the drug at the pharmacy.
Since last night Sunday as you read this I have used these eye drops as instructed and can safely tell you that I felt immediate negative side effects with chemotherapy, if this is what this is.
All the misguided comments I wrote about not doing chemo in my previous diary were for this very reason. Exactly what I have read so much about I now am dealing with. I will have to wait and decipher mentally if the negative side effects I mention are only my head games, due to expectations I feared. My head also suggests that I may be exaggerating due to uncertainty -- I just don`t know.
However, I will continue to follow my doctor`s advise. The recovery from the surgery on my eye is slow. The discomfort feelings mitomycin is having on me also is being felt by my eye as the redness seems to be fighting the chemo as it won`t go away as I expected by now.
This sticky feeling that Mitomycin leaves on my eye lids feels thicker and not watery like the regular eye drops I had been using. It causes me to lightly rub my eye, something my doctor told me not to do. These eye drops make me feel lazy and tired and even sick with a nauseated feeling. Even though I think I was born lazy, this effect Mitomycin has on me as I write makes me just want to raise my hands and say f++k this! Now I have aches just trying to slide off of my bed in the morning. I just want to sit or try to take a nap at midday. You see?, I told you....but
So far I have followed his advise. However, a warning that comes with Mitomycin is that I cannot use this eye drops vial beyond August 22nd., as a refill must be requested a day or two in advance -- something I will not do.
Quite frankly, I am through with chemotherapy and want these doctors to tell me to just go away. I have had too many hospitals and surgery labs involuntarily rope me down to poke me with needles and scissors for a lifetime in a period of one year - I just need a break.
On a closing note I want to thank everyone who has been with me on this journey into the unknowns and the uncertainties of cancer. I am very grateful. I will continue to have a strong belief that in the future -- in the long run as my doctor said, I will not be another victim to fall into the grasps of this vicious disease - cancer.
So Yes, I will use this medication until its use expires on August 22nd regardless of it being a chemotherapy drug. That`s the least I can do for this eye surgeon whom I respect. He must now respect my wish to discontinue a novel drug substance, a chemo that I go against, and will instead go with his views "that I run a risk of cancer in the long run if I don`t."
There is not "very much in the long run" in this tank at my age. So I will roll the dice and bet that time is in my favor.
And finally I will ask the reader only this:
For you with expertise on Chemotherapy,
What, if any, complications or side effects will this drug have on me in addition to what I have described when I use it in the absence of cancer, regardless of what is left in my eye that is absence of the disease as well? I know it helps to avoid infections or other good uses. I am only referring to the question of whether it is wise to use it absence of cancer despite it good use for infections -- where other drugs not being chemo can be used.
I know Chemo-Mitomycin kills certain cells in the body and in my eye when applied. I really don`t want or need this if somehow it would trigger dangers it could cause -if any -- to my heart, merely to fight a disease that was never there..
Anything you can add to my paranoia mind I will appreciate.
I said from the beginning that I am lost and do not understand this disease. I do not understand chemotherapy which I believe is being used in my case as an experiment since other simpler methods can be used to avoid infections and possibly scar tissue. And yes, I will raise this issue with my eye surgeon when I see him soon.
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P.S. update: As I reached typing this far down, my phone rang. It was the eye care specialist`s receptionist calling on my surgeon`s behalf. He wanted to know if I had gotten my Mitomycin from the pharmacy and whether I was using it. I noted he took his time inquiring.
After assuring the receptionist that I had picked the eye drops on Saturday morning and that I was using the drug exactly as my doctor ordered, she said great, and said the doctor wanted to see me on the 28th of this month.
August 28th.? This is the timeline I write about above. The expiration date for my Mitomycin is way ahead of the 28th. I must not use it beyond the 22nd. So I think I must have misunderstood my doctor that I should use these eye drops for thirty days. Because that can`t be right. I picked up the drug on the 9th. of August. I cannot use it beyond the 22nd. I cannot use it for thirty days under this math.
I will get it right in a few days when I call the receptionist with my message to the doctor about discontinuing Mitomycin and no plans for requesting a refill.
Again, thank you for being there for me when I needed your support. I will never forget you. I wanted all of you to know that I am fine. My family and especially my wife are happy that I am now happy too as I wrote in the first paragraph of this diary.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.