From Part VIII
To start from the beginning, click here for Part I
When I had Hodgkin's Lymphoma, it helped to talk to other people to know I was not alone. When I went into remission, other people starting their journey were helped simply by talking to me. I was amazed by that. The internet is full of information. I hope in that cybersea, I can somehow be of help.
So here's life since 2000, plus a spillage of thoughts.
Remember that one of the things that my oncologist at my hospital bedside that there was a 50-50 chance of sterility? This was a concern for my wife and me. So I got tested. When I called the doctor’s office, the tech there said that it was normal, and seemed annoyed that I bothered to call or that somehow I should have known the answer already. And I am happy to report that I have two beautiful, healthy children.
I've had trouble getting life insurance beyond the bare bones minimum under a group insurance policy. Even though the health issues are behind me, I'm still not a good risk in the eyes of the insurance companies. I get rejected for supplemental insurance offered by my employer. When I've gone outside my employer's life insurance plans, premiums go through the roof. Health insurance is not a big deal when part of a group with the safety in numbers.
I did a little trauma work with the Hodgkin's. The start of this series is something I started on my own accord back then, but I haven't finished until now. What I started writing also contains a little more insights since then. I went and joined a Hodgkin's survivor's online forum. I had told them of my experience and then I was a 17 year survivor. I was called an inspiration (I never think of myself as inspiring) but because I included the late effect of the fibrosarcoma, one member was a little concerned. As I stayed on, there was a lot of issues that I had dealt with, but I haven't dealt with them for so long. And some of the treatments were beyond my scope of familiarity. And there were people that were dealing with problems that I never dealt with, like real sterility. There was also someone who was told that Hodgkin's isn't a "real" cancer. And of course, outrage rippled through the group. I have my two cents: You have cells that don't belong there, that multiply wantonly. You have to treat them with chemo therapy or radiation (surgery, incidentally, is not used to treat Hodgkin's in the United States) or you will eventually die. That sounds like cancer to me. Hodgkin's is a lymphoma, a blood cancer. It generally just has a better prognosis.
It was a very informed group. I didn't for know example that a possible late effect of the bleomycin was Acute Respiratory Distress Syndrome. So if you get pure oxygen or anesthesia, there's a chance your lungs could get inflamed to the point of it being fatal. The group members were even discussing medical alert bracelets or necklaces. But I have found out from my own research this risk to be very low. I've had three surgeries since chemotherapy, and I survived every one. I will eventually have surgery on my right eye, so I might want to give that a mention. There's no need to take chances. And scuba diving may not be an option for me. As for the group, the sword was very much over their heads. It was kind of hard to relate to a lot of it. But I suppose I might get back to that group again and see if I can contribute.
My most recent visit with an oncologist was in 2008, if I remember correctly. My primary care physician had just finished treatment for male breast cancer and I think was projecting his issues onto me. So he referred me to his oncologist. I stepped into that office, checked in, and sat down, thinking it’s really weird being in a place like this again. It was almost like some creepy homecoming.
I see him and he does the physical and checks my body parts out. Everything was clear. He said of both the Hodgkin’s and fibrosarcoma, “if they haven’t come back now they’re probably never going to come back.” His whole attitude was, “Why did you come in here?”
There also seems to be a problem whenever a chest x-ray is taken. There’s always this gas bubble that sets off alarm bells with anyone who views it. One time, I went into urgent care because I had a bad cold. They took a chest x-ray and the PA really erred, and I mean really erred, on the side of caution. Of course, I knew it was because of liability. They sent me to the emergency room. There, I was about to have my first chest CT scan in years. I was dreading it on one hand but then some weird part of me said "let's rock 'n' roll." Maybe that was because I'd get to prove what kind of CT pro I am or something. But before that, the ER doctor talked to me about what they were seeing on the x-ray. The shape of my diaphragm was odd and the doctor said it was like a reverse hernia. I told her that when I was younger I had a huge mediastinal mass (that’s the medical terminology for that mambo tumor), and that it had displaced the diaphragm. That made sense to her. So I didn’t get the CT scan, but I did get antibiotics for my cold. Which was what I was after in the first place. It only took me 5 hours to get it.
I've also had skin cancers removed, and I blame the radiation for it because my cells are a little more sensitive now. Once again: thank you, radiation. Or I could use a less sarcastic, but more direct approach in the form of an expletive. I think I'll be having radiation-caused problems for the rest of my life. I watch that area. So I guess there's where the sword hangs above my head. But I don't live in dread over it. I figure like the fibrosarcoma, I'll find whatever comes up.
I also may never be able to donate blood. Just about every time there was a blood drive at work, I tried to participate. I worked for a company what was a supplier for Red Cross Blood Services, and we’d host an annual blood drive. So there was peer pressure in giving blood. But I got really used to needles, so opening a vein didn't bother me. When I got screened, I was told I was on “indefinite deferral.” The woman who was screening me had lost her husband from non-Hodgkin’s lymphoma (what separates the two is that Hodgkin’s contains Reed-Sternberg cells, and the presence of those cells always clinches the diagnosis of Hodgkin's). I felt bad, like a survivor’s guilt and all I could say, like anybody else, was “I’m sorry.” But she said in the warmest, most sincere manner possible, “I’m so glad you’re here.” Wow.
I do think about many people who have died. First of all, my oncologist, Dr. John Bruner and his partner, Dr. David King, that I mentioned both died in 2005. Remember the gal that was an inspiration to me? She had died some time ago. She’s been gone for about fifteen years. She had a lot more trouble with frequent recurrences, and I think she died from complications rather than the disease itself.
I think about well-known people, like Howard Carter. He discovered King Tutankhamen's tomb and died from Hodgkin’s in 1939. His death furthered the legend of the "curse of King Tut’s tomb." The one picture I can’t get out of my head is this:
It’s from a medical textbook published in 1936. I think he’s just got his eyes shut. There are pictures out there of worse swelling. But it’s sad to see the little guy and know that he’s not ever going to grow into adulthood. Even twenty years before I had Hodgkin's, the survival time with treatment was 10 years.
I can’t accept the view that some cell just decided to mutate and multiply. Although it's the scientifically accurate way of looking at it, I feel like I have to find meaning. Otherwise it’s just some crap that happened to me. My “freedom” from it has been described to me as a second chance. I do think that it is some sort of gift has been given. A way to see things. A way to live life. This doesn’t make me special. It doesn’t make me necessarily enlightened. It’s just that I can see life in a different way. The problem is, I often choose not to. And you know what? Many times, I have thought of throwing this gift away. What a grateful recipient I am, huh? And that’s partly because the experience is so far behind me. I also say that the people in your life are important, but as of now I'm choosing to isolate. But I try to recapture the renewed perspective every day of my life, as hard as it might be for me to do. I guess what I'm trying to say is that fitting this into this path that has been my life is a struggle in itself.
I see him and he does the physical and checks my body parts out. Everything was clear. He said of both the Hodgkin’s and fibrosarcoma, “if they haven’t come back now they’re probably never going to come back.” His whole attitude was, “Why did you come in here?”
There also seems to be a problem whenever a chest x-ray is taken. There’s always this gas bubble that sets off alarm bells with anyone who views it. One time, I went into urgent care because I had a bad cold. They took a chest x-ray and the PA really erred, and I mean really erred, on the side of caution. Of course, I knew it was because of liability. They sent me to the emergency room. There, I was about to have my first chest CT scan in years. I was dreading it on one hand but then some weird part of me said "let's rock 'n' roll." Maybe that was because I'd get to prove what kind of CT pro I am or something. But before that, the ER doctor talked to me about what they were seeing on the x-ray. The shape of my diaphragm was odd and the doctor said it was like a reverse hernia. I told her that when I was younger I had a huge mediastinal mass (that’s the medical terminology for that mambo tumor), and that it had displaced the diaphragm. That made sense to her. So I didn’t get the CT scan, but I did get antibiotics for my cold. Which was what I was after in the first place. It only took me 5 hours to get it.
I've also had skin cancers removed, and I blame the radiation for it because my cells are a little more sensitive now. Once again: thank you, radiation. Or I could use a less sarcastic, but more direct approach in the form of an expletive. I think I'll be having radiation-caused problems for the rest of my life. I watch that area. So I guess there's where the sword hangs above my head. But I don't live in dread over it. I figure like the fibrosarcoma, I'll find whatever comes up.
I also may never be able to donate blood. Just about every time there was a blood drive at work, I tried to participate. I worked for a company what was a supplier for Red Cross Blood Services, and we’d host an annual blood drive. So there was peer pressure in giving blood. But I got really used to needles, so opening a vein didn't bother me. When I got screened, I was told I was on “indefinite deferral.” The woman who was screening me had lost her husband from non-Hodgkin’s lymphoma (what separates the two is that Hodgkin’s contains Reed-Sternberg cells, and the presence of those cells always clinches the diagnosis of Hodgkin's). I felt bad, like a survivor’s guilt and all I could say, like anybody else, was “I’m sorry.” But she said in the warmest, most sincere manner possible, “I’m so glad you’re here.” Wow.
I do think about many people who have died. First of all, my oncologist, Dr. John Bruner and his partner, Dr. David King, that I mentioned both died in 2005. Remember the gal that was an inspiration to me? She had died some time ago. She’s been gone for about fifteen years. She had a lot more trouble with frequent recurrences, and I think she died from complications rather than the disease itself.
I think about well-known people, like Howard Carter. He discovered King Tutankhamen's tomb and died from Hodgkin’s in 1939. His death furthered the legend of the "curse of King Tut’s tomb." The one picture I can’t get out of my head is this:
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It’s from a medical textbook published in 1936. I think he’s just got his eyes shut. There are pictures out there of worse swelling. But it’s sad to see the little guy and know that he’s not ever going to grow into adulthood. Even twenty years before I had Hodgkin's, the survival time with treatment was 10 years.
I can’t accept the view that some cell just decided to mutate and multiply. Although it's the scientifically accurate way of looking at it, I feel like I have to find meaning. Otherwise it’s just some crap that happened to me. My “freedom” from it has been described to me as a second chance. I do think that it is some sort of gift has been given. A way to see things. A way to live life. This doesn’t make me special. It doesn’t make me necessarily enlightened. It’s just that I can see life in a different way. The problem is, I often choose not to. And you know what? Many times, I have thought of throwing this gift away. What a grateful recipient I am, huh? And that’s partly because the experience is so far behind me. I also say that the people in your life are important, but as of now I'm choosing to isolate. But I try to recapture the renewed perspective every day of my life, as hard as it might be for me to do. I guess what I'm trying to say is that fitting this into this path that has been my life is a struggle in itself.
A beautiful story
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