Why I Have Been AWOL
Funny enough, in the last year, I have lost around 30 pounds and I've cut my hair to just touching my shoulders.
A lot has happened in the last year. I gave an initial update about my health back in April. A lot has happened even since then.
To make a long story short, I was diagnosed with cholangiocarcinoma (bile duct cancer) in August. I have taken three rounds of chemotherapy and will begin my fourth round on Thursday after which time I will have scans to evaluate how my body is responding to treatment.
Needless to say, this was a huge shock to our family. Overall, I am doing very well. The pain I was having has subsided and I don't even think about the pain scale anymore except when I'm asked if I have pain. I do deal with fatigue, partly due to the chemotherapy and the cancer and also partly due to my inherited anemia. When I am in the middle of treatment (14 days of chemo pills in addition to IV infusions), I do have some slight nausea, but peppermint essential oils and peppermint candy keep it under control. I have kept my hair which is great! There is a chance I could develop neuropathy and I can sometimes sense a very slight numbing and tingling at times. I do deal with hot flashes as a result of chemo-induced menopause. Recently, during our missions conference, I took off and put on my cardigan four times in one hour because I got hot, and then got cold, got hot, and then got cold..... My husband didn't know what to think! There is also a chance that I will develop a side effect called hand-foot disease where my skin will peel and will look terrible. My oncologist, who was my hematologist for 12 years, just retired and I will be meeting my new doctor on Thursday.
That's pretty much it in a nutshell. If you want a summary of what happened each month so far in 2021, keep reading.
January 2021
I began having joint pain and swelling. An ER visit on my daughter's birthday revealed enlarged lymph nodes and a mass on my liver. The ER doctor informed us that it is probably cancer.
February 2021
I had my first oncology visit with my hematologist who took a full history of recent health issues and suggested that I may have lymphoma. She also scheduled scans (PET, MRI) which were delayed due to a snowstorm that shut down Memphis for over a week. I was in too much pain and was too fatigued to enjoy the snow. I watched Gracie play in it via the phone app that shows our Ring doorbell camera. I also discovered that I'm allergic to kiwi.
March 2021
I began having indigestion, loss of appetite, and abdominal pain. An ER visit turned into a hospital stay at which time it was revealed that I have a malfunctioning gallbladder. Because we were waiting to have a biopsy of my enlarged lymph nodes behind my sternum, we opted not to have my gallbladder removed. (Surgery would have delayed the biopsy.). The biopsy revealed that I have sarcoidosis.
April 2021
This month was spent learning more about sarcoidosis. My gallbladder issues subsided and although I knew I would have to have my gallbladder removed at some point, it was not an emergent need.
May 2021
This was a normal month with little to no health issues. I don't even remember much about this month.
June 2021
I began having upper right quadrant pain along with rib pain and sometimes back and shoulder referred pain. I visited my PCP who ordered CT scans to check on my liver (rather than do an invasive biopsy). Insurance denied the CT scans three times! I was able to attend our annual family reunion which was held on my 49th birthday. One of my cousins made a point to make it a very special day for me.
July 2021
During a conversation with a dear friend of mine, I realized that my rib pain was likely due to my gallbladder. My PCP referred me to a surgeon and then another surgeon, trying to get an appointment ASAP so that I could finally have the gallbladder out. Unfortunately, their first availability was weeks out. Gracie and I attended her first-ever church youth camp which was a fantastic week. Although, I was fatigued and in pain for much of the week, I had a wonderful time!
August 2021
With the start of the new school year and wanting to keep things as simple as possible while I tried to get my health under control, I decided to not do violin and viola lessons for me and Gracie. I really hated it, but I knew I wouldn't be able to take Gracie nor would I be able to keep up with practicing. However, we both signed up to be in the Christmas play and weekly practices began in full force this month. On Sunday, August 15th, Gracie noticed that I was turning yellow. A couple of weeks before, I had shown her pictures of what jaundice looks like and told her to tell me if she saw me turning yellow. This was what I needed to be able to go to the ER and be seen about my gallbladder. I was in the hospital for a week, had numerous tests, and was told that I had a bile duct obstruction. A specialist was brought in on Thursday to put in a stent to fix the obstruction and to take biopsies of several areas of concern. I had to wait a couple of days before leaving because I was in great pain. All I can say is: Dilaudid is a miracle drug! Several days after discharge I was told that the biopsies show that I have cholangiocarcinoma, bile duct cancer. It is a rare yet aggressive cancer that usually occurs in older people.
September 2021
I had surgery to install a portacath which is an apparatus that lives under the skin of my right shoulder and has a tube going through one of my blood vessels all the way to my heart area. The port allows for easy access for chemotherapy. I also began chemotherapy treatment: Gemzar and Oxaliplatin. The nurses were great about talking to me about my treatment and answering questions, giving me a warm blanket and snacks. While having the infusion, I napped some and upon waking up at one moment, I lost part of my vision for about 20-30 seconds. It scared the snot out of me. The nurses thought maybe I'd looked at a light and was seeing spots, but I knew that wasn't the case. I continued to have visual disturbances at random times over the next few days. I sent a message to my doctor who had her nurse call me on Monday and tell me to go to the ER because I could be having a detached retina. I spent 7 hours at Baptist undergoing numerous eye exams (most of which I've had before) and they determined that I was not in any danger of losing my sight. They referred me to Hamilton Clinic which is part of the UT Medical School here in Memphis. It took a couple of weeks to see a doctor, but he determined that my visual disturbances were due to toxicity from the chemotherapy drug oxaliplatin. He recommended that I stop taking that. My oncologist prescribed another chemotherapy drug to take its place: Xeloda pills which are taken twice a day for 14 days. I also had genetic testing done to determine if I have any gene mutations that can cause a propensity for cancer. They tested 91 genes and every single one of them was negative.
October 2021
In October, I had Round 2 of chemotherapy: Gemzar and Xeloda. I don't remember much about this month except that we had a great dinner-on-the grounds at church for Pastor Appreciation Day and I got to go over to my pastor's house to visit while my pastor's daughter took Gracie and her daughter out trick-or-treating. I knew I wouldn't be able to walk that much and Gracie had a lot of fun with her friend. I had surgery to replace the bile duct stent, from a temporary plastic one to a longer-lasting metal one.
November 2021
I had Round 3 of chemotherapy: Gemzar and Xeloda. I also had my last appointment with my oncologist whom I've known for 12 years. She retired and has given me to one of her colleagues. I really hated to lose her for a doctor. Our homeschool co-op made a phenomenal gingerbread house that will be on display at the Pink Palace during the holiday season. We are taking a field trip there in December. Our family went to Florida for Thanksgiving and enjoyed that very much.
December 2021
The 1st is mine and my husband's 14th anniversary! I will have my Round 4 chemotherapy and will meet my new oncologist on Thursday, the 2nd. The middle week of December will be busy with our Christmas play and various church Christmas parties. We will enjoy Christmas at home and will get to see my in-laws for Kinsey Christmas the following week.
So, there you have it. I've been blessed to have had my brother and his wife stay in Memphis to help me out with appointments and with homeschooling Gracie. My other brother and his wife have also come to help. My church family has been amazing in showing their love and support. My husband has been a rock keeping things going in areas I can no longer take care of. I am truly blessed. Gracie has been a trooper through it all. She's growing up fast -- eleven going on twenty-one -- and keeps me laughing and pulling out my hair. But mostly laughing.
I have continued to read, but I decided to push pause on book reviews as I didn't want to potentially fail to take care of reviews that I promised to give. Homeschooling has been slow, but progress continues. This is just the season of life that our family is in.
2022
Many ups and downs with increasing side effects.
2023
Barring a Miracle from God, I am terminal. Please pray for much physical comfort, because I am in in pain constantly.
This will likely be my last post, barring the miracle.
Thank you for reading.
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