It’s been awhile and a lot has happened. I just finished up a very long work stretch of 11 days. To cover the time, I’ll try to keep in chronological.
I went to Oschner to see the colorectal surgeon, Dr. Whitlow. He is the head of the coloreactal program at the hospital. My gastroenterologist warned me that Dr. Whitlow said a colostomy was inevitable. However, after doing a very thorough rectal exam on me (not fun but necessary) and reviewing my scans, he is more hopeful that a low anterior resection with resection of my internal anal sphincter is possible without a colostomy. However, the most important factor is what my pathological response is to the chemotherapy and radiation. So after I finish with the chemotherapy and radiation, I will have to go back to New Orleans and be re-examined. To my surprise, he is actually planning to present my case to the tumor board at their hospital. Tumor board is when all the specialists, oncologists, radiation oncologist, surgeons, pharmacists and basically everyone involved in the treatment of cancer gathers in a room to go over the case and offer input.
He also gave me another option, it’s called the wait and watch option. The wait and watch option is to do all the chemo and radiation upfront, including what would be the chemotherapy I would get after surgery (probably FOLFOX), and then see what my pathological response will me. Radiation continues to work for months even after the treatment has stopped. Some people who have done this option ended up not even needing surgery because their pathological response was so good. Although this is a nerve-wrecking approach, it has several scans involved and monitors to see if there is any progression of the disease.
As much as I would love to avoid surgery at all, I think this method for my case is a little too risky. Maybe if I was a stage 1 or 2 but since I have a major lymph node involved, my iliac chain lymph node, I would not feel comfortable just watching.
That was a very long day. I went straight from my appointment in New Orleans back to Jackson (3 hour drive) then quick nap at home before going to work. In addition to it being a long work stretch, it was filled with emotional turmoil. I had to say goodbye to one of the physicians I work with at night, he is leaving us to stay closer to family in Florida. He was such a wonderful asset to our team at night. He will continue to be an inspiration to me in my medical practice and a guide to maintain epic level chillness.
I also told some of the other providers that I work with about my diagnosis. Telling people about the cancer is always emotionally draining. On the plus side, it fills my heart with warmth knowing that they are praying for me and my wellbeing.
I just started week 4 of my treatment and towards the end of last week, the side effects starting kicking in. Thankfully my appetite is still good. I am able to eat and drink well. I admit that I am not drinking enough water as I should be. My taste buds are also changing due to the chemotherapy. For instance, the coffee grounds that I purchase online for my physician and I to drink now tastes too sweet. It used to taste like the perfect blend. I have been skeptical to drink warm coffee as it just does not taste the same. I have been able to do iced coffee, which I am thankful for.
I have been having some sensitivity to the skin in my pelvic area, particularly my lady parts and my anus. This was a noticeable discomfort at the end of the third week but really didn’t bother me. Now every time I urinate or have a bowel movement I am in a lot of pain. Urinating is not so bad, it feels like that muscles are spasming and the tissue is raw making wiping very uncomfortable. I even brought my own toilet paper to work because the work toilet paper is too rough. Bowel movements are the worst. It feels like someone is taking sandpaper and sticking it up my rectum while twisting it.
I also had my menstrual cycle last week, that was an odd adventure. I was warned that tampons would not be good to use due to the raw tissue. However, wearing pads rubs the other area of raw skin. So I was stuck. Since I am getting the radiation and also the radiation damage to my ovaries, the menstrual cycle was thankfully light. Good because most days I just tried to use the restroom as soon as I felt some blood coming, bad because that means that menopause is likely rearing its grey-head around the corner.
When I got my chemo-pump placed last week I had a very bad experience with the RN who not only placed the port-needle in an awkward position but the bandage was too tight and also rubbed against my arm causing skin breakdown in less than 24 hours. I had to go back to the infusion clinic and have her redo it completely. I was very thankful not to have her again this week.
I have been able to maintain 118lbs. I am very happy that I have not lost weight. However, I have lost muscle and have replaced it with fat. There is a phenomenon called chemotherapy related muscle loss, that is separate from the weight and muscle loss from decrease appetite. They have done animal studies that showed that when chemotherapy is administered to rats without cancer, they still lost weight, showing that the medication itself causes weight loss.
It sounds like I had a crappy two weeks but it really wasn’t all that bad. I was thankful that my work days weren’t so crazy. That helped me get out near on-time and get some rest. Since I have my radiation at 8am, it makes my sleep fragmented since I got off at 5, slept for two hours then had to wake up for radiation, go home and sleep some more then get up at 3pm to get ready for work.
I am also on my first true day of being off and am so thankful that my main responsibilities right now are to go to radiation, rest, eat and do homework. I do not have anything else I have to focus on.
I am very thankful for the way things have turned out. I was thinking about the “what ifs”. I was supposed to switch schedules from 5pm-5am to 7pm to 7am. The switch in times was supposed to benefit us, however after thinking about the details, I put my foot down and told the doctor I work with that I will not switch times. Then a month later, I was diagnosed with cancer. If I had switched to the 7pm shift, it definitely would have put more stress on me and eventually my treatment. I am also thankful that I never found the right house. I was looking at investment properties to buy in the town that I went to school in so that I could rent it out to students. I looked at a few places but nothing fit. This has made the financial aspect of my cancer less stressful. Even though I have insurance, my insurance sucks and everything is expensive. From the cost of the diagnostic work-up including my MRI, PET scan to the treatment including my port-placement, chemotherapy and radiation. Also, the little details of food, comfortable clothing that fits my chemo-port tubing and travel expenses. The biggest what-if is what if I didn’t go into medicine? What if I didn’t realize that my symptoms were severe and not normal? What if I didn’t have a best friend that was a physician who pushed me to get a colonoscopy? I am thankful that things turned out the way they have and I will never forget that. I am thankful for the people in my life, the ups- downs and everything that has led me to the position I am currently in.
I would also like to announce that after I finish treatment and conquer this, I will finally get my fur baby. I have wanted to be a fur momma for so long but have continued to put it off. Somewhat thankful for that because I would have a very difficult time taking care of anyone other than myself right now. Towards the end of treatment, I will scourer PetFinder.com to find my fur baby. I want a senior golden retriever or lab to love and hold. I absolutely cannot wait for this moment.
This entry is a bit scattered but that is how my brain feels right now.