Back in 2014, I discovered that I had some rather severe food allergies. The one that causes me the most discomfort over a prolonged period – 6 weeks is milk protein; I am allergic to all three types of whey. I developed an allergy to shrimp while in Jamaica with my sister in 1998. I love shrimp, and I would often take two Benadryl, wait 40 minutes and eat shellfish, sometimes shrimp. I had never reacted to other shellfish and I did not want to. After years of doing the Benadryl trick, I made the allergy worse and in 2014, I was told I could not even be in the same room if shrimp is being cooked. I am also curiously allergic to green bell peppers, the Doctor advised me to stay away from the other colours also, but I have never reacted to them and I do not now. I suspect it is tied to my diagnosis of Irritable Bowel Syndrome and Diverticulitis. I am severely allergic to one antibiotic used to treat kidney infections. All these ‘allergens’ cause severe anaphylactic reactions in and on my body.
In addition, there are several grains that my bowels have never been friends with; these are psyllium husk, flax seeds, oats, oatmeal (actually these claim to be hypoallergenic, but it burns my skin), and barley. All these grains were those I instinctively tried to avoid as a kid by refusing breakfast in the morning (oatmeal, or cream of wheat with milk); Metamucil never helped me EVER it always made it worse but Jack never believed me.
After my food allergies diagnosis, my GP sent me to a G.I. Specialist for a consult. I was 40 years old in 2014 and according to my father, all his relatives died of natural causes. There was no reason to suspect any adverse effects and the G.I. Specialist, Dr. Matthews diagnosed me with IBS. Just as Dr. Matthews was about to dismiss me, he asked if my bowels had ever bled and I replied well, of course, that’s why I suspected I had food allergies. He said “Ah Ha! And now you need a colonoscopy.” My first colonoscopy was booked for end of September 2015. Thank Thor they knock you out. I woke up 30 minutes later to Dr. Matthews telling me I needed to return for a follow up colonoscopy to have my polyps removed and sent to the lab for further investigation; as a precaution.
I went on my merry way and didn’t really think twice about the polyps because I have sebaceous cysts all over my body and the ones in my scalp can get quite large. They charge (used to in 2012) $355 PER CYST. Seriously? I have YouTube; I ordered scalpels, those dental forceps things that look like hockey sticks; and the Derma numbing cream. My husband loves me and indulges me in my weirdo self-mutilation projects so; he agreed to cut some out for me. The first cyst took about 3 hours to figure out what we were doing and we used Crazy Glue to seal the incision. I am addicted to WWI and II biographies that focus on strong female spies and how they survived in the field. I don’t remember where the glue came from, but I read it’s used. My husband helped me and we glopped that on there. Yah. After that, we didn’t use the Crazy Glue – takes too long to work out of the hair. I ended up slowly crunching it out of my hair. My GP told me we did a great job. My GP knows full well that I will do whatever it takes because I was not paying $355 each when I had 5 on my scalp. I had one removed by a medical intern back in 2006 after infecting my cyst myself so I felt qualified to enlist my husband in this endeavour. A few weeks later, we removed the other 3. It was much quicker. I still have 2 which have remained quite small.
When I returned the following month for my colonoscopy and was awakened nearly an hour later, the G.I. said I needed a follow up in 3 years’ time. He said these polyps would eventually become tumors but they were slow growing and a four-year follow up would see if they returned. OK, I was a little concerned, but family and friends reassured me that many family members had had similar results and every 4 to 5 years they just returned to have polyps removed regularly. Fantastic. I moved on.
In 2015, Jack was diagnosed with colon cancer (there will be a post on that in the future, but this post isn’t about that, for now). In 2015, I was diagnosed with severe Adenomyosis and required a partial hysterectomy. My uterus was removed in September of 2015 laparoscopically by a great surgeon. In 2017 I visited my GP because I had a pain in my lower left bowel and I thought maybe my ovary was twisted or something. She sent me for a CT scan with dye. It was my first time ever having one…. They are not kidding when they tell you the dye makes it seem like you wet yourself. The CT results came back with a flare-up of Diverticulitis. In November of that year, my best friend died of colon cancer. In August of 2018, I returned to Dr. Matthews for my follow-up colonoscopy.
I met with him briefly and he explained what he would do and that once the procedure was done he would come see me in the post-op area. Okie-Dokie! 15 minutes later, I’m staring into Dr. Matthews’ eyes. I remember being confused, it had only been 15 minutes, I was groggy and then I felt able to speak and said, “OK, I’m awake.”
Dr. Matthews, now I could see his eyes were very moist: "I’m sorry, there’s nothing I can do, you have cancer."
He walked away.
Stunned, I remember blinking a couple times and then calling for him to come back because I had questions. But it was too late, he was gone. I was told Dr. Matthews would arrange for an excellent surgeon. I remember a nurse telling me to call Dr. Matthews’ office in a few hours to ask if I had any follow-up instructions.
I called dad as soon as I got home to tell him I had colon cancer; he had just gone through the exact same thing. When he picked up, he was ecstatic that just that morning, he had been cleared of cancer, officially. I didn’t have the heart to tell him then and called him the next day. I understand now, I was never able to put my finger on what I didn’t hear over the phone when I spoke to my father… I mean, I heard the usual noises – breathing, coughing, throat clearing, laughing; what was and has always been missing is emotion and empathy. It’s all an act; he's incapable of feeling or placing himself in another's shoes. This hit me in the face just this past weekend.
When I met
with my surgeon, I told him I was very surprised about this diagnosis because
just last June I had a CT and the results came back clear and I complained
specifically about bowel pain. Turns out, my tumor was 25 cm; in the surgical
notes, it was approximated at 23 cm.
It was tested for genetic defects and came back negative. Meanwhile, I had been
speaking with my Aunt Anna and asked her about our medical history. I was
absolutely floored to learn everything Jack told me was a lie. My surgery
happened 10 days after my colonoscopy; I had a right hemicolectomy meaning the right side of my bowel was re-sectioned, cutting out 3 feet, my appendix and right ovary were
also removed. I had about 15 staples in my belly after surgery.
When I met with my Oncologist that October 2018, and she asked about my family history I was able to tell her that nearly everyone died of cancer, at a relatively young age and that it was always unrelated to an environmental factor, such as smoking. Upon hearing this news, I was referred to Genetics and met with them in January 2019.
A full family history was taken again; I was given a really cool biology lesson on all the different cancer types, genetics, rare, etc. I was told that they wanted to rule out any genetic anomalies as a precaution and asked if I would agree to have my blood drawn to test my DNA. I only agreed because I have two children and feel they should know their medical history. The results came back 8 weeks later, 2 days after my 41st birthday that I was MSH6 Lynch Syndrome positive. They explained what it all meant and told me cancer was likely to return with 80% certainty between now and my 80th birthday but that there were several preventative measures (surgeries) I could take. Blah blah. I took the printout of stuff they gave me in this massive envelope and placed it in my purse. That envelope weighed the equivalent of 50 pounds and I carried it around with me everywhere I went for almost a year.
I drove to work on autopilot and accomplished all my tasks on autopilot for as long as I could manage. I felt myself in slow decline; but I had many responsibilities that needed to be completed before I could have a melt down. I decided to call the hospital support number and request therapy because I am a cancer patient; I had a telephone appointment within a matter of days. I met with the social worker 3 times before realizing that my recent Lynch Syndrome diagnosis wasn’t my main issue at the moment.
This post is only to try to explain how my memories came to be all mixed up and why I now needed to know the truth.
After every appointment with the social worker, I came home and was always very confused. I spent several days incapable of speech; all I did was sweat and tremble. Sometimes I just started crying and then trembling; or I would be frozen in a real live memory while watching my household march on, incapable of explaining where I was or what I was experiencing in that moment - I did not realize I was experiencing flashbacks and panic attacks regularly.
I’ve been in Psychotherapy since May 2019; I did also have a Psychiatrist but he retired. Therapy has been very helpful as I piece together my history and work through all my trauma. I say that and I fear that I make it sound easy. It is absolutely the hardest thing ever, but has recently started to bear fruit.
I’d like to share what I have managed to piece together to date, by chapter, to match up with my posts.
Just joining me? Start at the beginning:
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