A day after I wrote the prior piece, my mother informed me that my younger sister Beth (I mentioned her yesterday) was just diagnosed with cancer of the rectum... What can ya say? Back when we were taken for the original check-ups at Memorial Sloan Kettering Cancer Center in 1982, when we entered into puberty, and were informed that we inherited my father's gene for FAP, the surgeon told us that with the removal of the colon we remove the problem... Beth is 20 months younger than I and I imagine she had her surgery in 1984. So, 30 years later we find that belief of the experts to be unfounded.
About this time of my life in the early 80s, I entered into a major depression. Truthfully, I believe I entered into that depression with the death of my father, the emotional disappearance of my mother and the physical abuse by my father's brother (also FAP)... I became very existentialist and firmly believed that I wouldn't live beyond my father's dying age. (When I reached his age of a year before he became ill [32 years], I developed problems with my rectum, visited some specialists, and was informed that I must have my rectum removed immediately and replaced with the J-Pouch). My mother would cope with my negativity by telling me that by the time I became of parenting age, science would have developed the ability of altering genes, so that I wouldn't have to worry about the guilt of putting my children through this... Scientific wishful thinking... I believe that my sister has been very responsible with her health as an adult and always on top of her check-ups (and much more optimistic than have been I). I am sure that had there been another option for preventing her rectal cancer, such as gene altering, I'm sure she would have been all for that... and wouldn't be confronting the removal of her rectum and living with a permanent ileostomy bag... If you don't know, Beth is a marathon runner... So, I imagine she is very concerned about being able to run with an ileostomy bag...
I don't know what else to say... Stream of consciousness and existentialist or humanistic thought isn't flowing at the moment. You would think this news would be inspirational for writing something profound. But, I'm kind of at a loss for words.
In a strange way, I see Beth as my twin sister, since we grew up very close (at least for the first 8 years or less)... The was a time when we looked much alike... We have very similar body structures and we both inherited my father's gene... I "displayed" much much more aggressive polyposis in my colon and rectum than did Beth. Her rectal polyps all but disappeared with the original surgery. Mine didn't. However, she developed Thyroid Cancer at the age of 26. And now rectal cancer. Granted, my rectal polyps became greatly inflamed in 2001 and began bleeding and cause great cramping at he moment of sitting on the toilet; excrutiating pain. However, I was NEVER diagnosed with Cancer... So, one can say that I've never truly been ill... I wish we could have said that all of this was an illusion back in 1982, when they diagnosed me with FAP/Gardners... I wish you could correctly acuse me of being hypochondriacal, inventing illnesses that didn't exist. Truthfully, had it been up to me when I was informed I would have my colon removed in November of 1982 (the surgery was the following February), I would have told the doctors and my mother and uncle Henry to ignore the damn thing. I became horribly angry and obnoxious... I am sure I was experiencing a mix of extremely confused fear... How can you fear what you don't know, have never experienced? I guess it was a fear of being removed from what was normal... I don't believe you can understand this if you've never experienced these types of abnormalities... like suddenly losing a parent at a very early age or living with disease hovering over your entire life or having organs removed or or or... It's not nice living deformed and defective... And it's worse informing the normal people of why I don't belong within their circles. But it's true. And another truth is that I've never had cancer. And had it been up to me, I wouldn't have had the surgeries...
However, had I not had the surgeries...
I guess you would be able to say that I had developed cancer of the colon or of the rectum and had died like my father, at the age of 34...
But back to my younger sister Beth and at times feeling that we were twins... That feeling appeared today during Margarita and my daily 5km walk (today we didn't run, we talked)... Often during my adult life in Mexico I feel as if I am looking with her eyes when she was a child... It's a strange feeling. But it isn't my stare... it's hers. But it's mine...
I may have known how she felt or suffered when we were children. But, we have our own suffering and detach from that of others... Her new illness has hit me at my center. But, I also feel strangely detached. I don't know what that is. I imagine it's what's always been. I imagine it is a 4.5-year-old child's coping mechanism when their parent suddenly becomes ill and suddenly dies. Death...
I can't imagine just how incredibly horrible my mother lived those months and then those years afterwards; but I imagine I intensely experienced her struggle... trauma. I've always been a watcher, (as an adolescent and young adult I called myself a "people watcher") an observer and I would have spent a lot of time observing my mother, her change, absorbing her suffering.
Funerals. How can a child live with death their whole life? Death... It's impending... Death... I guess we should just forget about it, ignore it...
I don't want anyone to approach me with the information that they just lost someone. Why not? Because I don't know what to say. It's over... I love my statement of celebrating the life that person lived and shared with you... But, I can't tell them that. It would be considered insensitive. Why mourn? I guess I developed incredible coping skills with the death of my father...
I believe there are tons of reasons for the mourning of a loved one. But, I don't feel that trajedy when confronted with that news of others. I'm cold... distant... I would love to distance myself from the event... from their pain... because I will unintentionally offend them...
What can I say? I guess I dived into this afterall...
Pico de Orizaba
Taken from Huatusco, Veracruz, the closest town to Margarita's family's ranch.
2 comments:
Beth could have chosen to have rectal surgery preventively when she knew she had polyps but that is a hard decision to make. We will mow have to hope that this surgery will be successful in removing the cancerous cells and that there is a way that she doesn't have to live with a iliostomy bag for the rest of her life. I did pass along your message to her and she was very appreciative. She also said that she was glad that you didn't have to worry about getting rectal cancer. Beth was the last one with her rectum and I guess we should have seen what needed to be done sooner. Beth's b'day wwas 3/12 and Hannah's was 3/13. This news certainly took the sparkle out of these celebrations.
Yes, I know about their b-days and that was one of the thoughts that entered my mind. I guess she started developing polyps in her rectum over the past few years... This news did give "value" to my surgery 12.5 years ago... However, as so many FAPers in the two FAP/Gardners Syndrome groups on Facebook informed me intensely a while back, it just doesn't end with removal of the colon or the rectum, nor with changes in diets... Their incredibly varied and horrible experiences show that the doctors know very little or are afraid to say what they know... that the disease pops up in all the unsuspected places... some people losing parts of their body gradually with age... And they would consider us (Seth, Elise, Beth and I) very fortunate, since we are still functional. And it is very possible that no more will occur. But, don't let anyone convince you AGAIN that it ends with the colon or the rectum... Because it doesn't. You may believe that I may sound hyperchondriacal with my statements about diseases not yet connected with FAP/Gardners. But, nor was Thyroid Cancer when Beth was diagnosed 17 years ago... Remember, the documented probabilities of our offspring inheriting FAP/Gardners Syndrome is 50%. However, our family has it 87.5% (I don't know if Hannah has been checked and nor do I know about Seth and Tracy's two children; my numbers exclude my paternal grandmother's great-grandchildren.) Had you known that the stats for developing rectal cancer after having the colectomy were only 4% and still are, maybe I shouldn't have had the J-Pouch an Seth and Elise shouldn't have had their rectums relined. And tell Beth that she fell into that 4%... But, supposedly I was to fall into that 4% too... Also, when I asked about risk of sexual dysfunction caused by the J-Pouch surgery he said, "3% but with us (he and his partner) the risk decreases to 1%) and I fell into that 1%, which is why I can't have offspring. It's a damn shame, afterall, if I only have one child, there is a great chance they won't inherit the gene. And if so, they will have invented gene alteration before my child reaches puberty... Isn't that the case with all of the misinformation shoved down our throats MOM? I just found new stats: I think you'll appreciate them, although it seems that the percentages are very low. I'm about to post them on my blog
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