Cancer Update

I started this Ovarian Cancer Journey in March 2023. Since then I have been on four different chemotherapy treatments. I had a six month remission in 2023 and a four month remission in 2024. I have been on and off treatments, fighting the cancer or building up my body and living for periods without treatments and side effects. Clayton and I stopped working last year when my doctor visits and care became more full time.

Month Long Hospital Stay

On March 6th of this year, I woke in the middle of the night vomiting from the side of my bed, a black liquid with the worst odor imaginable. I had no warning it was coming. I managed to get to the bathroom where I continued to vomit for hours. By morning I was able to get in the shower, and we drove the ninety minutes to Brigham and Women’s Hospital in Boston. We chose this ER as it is next door to my oncologist at Dana Farber, and my doctor called the ER to alert them of my arrival.

After a battery of tests, it was determined that I had a small bowel obstruction. It was not caused by something clogging my intestines, but instead by the cancer. Ovarian Cancer is a sticky substance and it was described to me that the cancer cells had strung together and were tethering to my intestines, strangling them so nothing could pass through. An NG tube was inserted and the black liquid then drained up my nose into a container on the wall.

For days I was on the NG tube, with no food or liquid passing my lips. I was discharged five days later, March 11th, when it looked like everything had reopened for the passage of food. Unfortunately, my stay at home was only for four days when I started to exhibit the same symptoms leading up to the vomiting. Food would not go down but would sit at the top of my abdomen. We returned to the ER at Brigham and Women’s on March 15th where I remained until April 2nd.

TPN and New Chemo Treatment

After meeting with my oncologist, it was clear we had to make some drastic decisions. First, we would need to address my nutrition. Once again, I was unable to eat or drink anything. Doctors explained to me they could give me a double PICC line in my arm. One of the central lines would be designated for blood draw and medications, and the other would be hooked up to an IV. The IV would be connected to TPN (Total Parenteral Nutrition). It would take a week or so to get the nutrition to suit my needs according to lab work. I would be hooked up continuously until everything became stable, and eventually cutting down the time by a few hours each day, until I would only be hooked up for twelve hours a day. In addition to the TPN, we would need to switch the chemo again. Although my cancer markers (CA125) were going down, indicating the cancer cells were decreasing, the fact that they had gotten more aggressive with how it was affecting me and how it appeared on the CT scan warranted a change. The most grim and urgent news being that I would likely starve to death as cancer took over if I opted to not get theses interventions. The hope is for the chemo to kill off the cancer cells choking my intestines so that I can get off TPN and return to eating.

It was a difficult decision to make, in that the treatments are so invasive and affect the quality of my life. But in the end, my many blessings led me to the decision to go forward. I have too much to live for to throw in the towel now. Not only do I have an amazing family and group of friends, but I also have a two month old grandson, and a second one on the way in June, and I have every intention of watching them grow up.

I was so blessed to have many people calling, texting, and visiting. They would bring me coffees, activities, and artwork for my room. Clayton was with me from morning to night, and even slept in the recliner a couple of times. Michelle modified shirts for me so that I could remove them as needed even when hooked up to my IV pole.

Weeks as a Patient

Although I went many days without any eating or drinking, we eventually introduced clear liquids and even some soft foods. Doctors put a lot of stock in passing gas and having bowel movements, so I walked many miles a day in the halls of the hospital to encourage those movements. That would be the evidence we needed that food was passing through again. I even met up with another patient on my floor and we would walk together.

When I was disconnected from the bag for a few hours a day, I tried to get outside for fresh air. On one particular day, my sister in law was visiting me, and together we ventured outside. We walked through the Harvard Medical Campus, CVS, and then back. I am pretty sure it isn’t allowed, but my mental health called for it. Unfortunately, my body was not as capable as my mind, and when we returned to the hospital, we climbed a flight of stairs. I managed to make my way to a bench where I passed out. A Code Blue was alerted throughout the hospital, and when I came to, they were preparing to move me to the ER. Michelle had to explain I was already a patient there and my nurse was eventually called to come retrieve me. After that I was put on room confinement for a couple of days.

In addition to TPN, we also needed to start back on chemo to kill off the cancer that was wreaking the havoc. One of the many frustrating policies in the hospital was that I could not go to Dana Farber for an outpatient procedure when I was admitted to Brigham and Women’s for inpatient care. Fortunately, my oncologist filled out some paperwork, and I had to sign some waivers to be able to get the chemo at Brighams. I had my first two treatments there before I was discharged.

The care I had from the nurses was extraordinary. I especially appreciated when I would have some for several shifts and we could build a relationship. The food, what little I sampled, was confusing and gross. My choices were usually carbs or high in sugar (juice, Jello, popsicles, mashed potatoes, rice cereal, eggs etc) While I would expect a hospital to serve the highest quality foods when it comes to health, that was not the case. I was also disappointed in the way the hospital runs more like a business than a health care facility. I rarely saw the same doctors, and each visit with the on-call residents was brief and there was not nearly enough communication between them all.

TPN at Home

The TPN bag contains all of the nutrients and calories needed. It is established by each individual’s needs. Some of the items in the bag are time sensitive and need to be added at each use. A third-party pharmacy sends a nurse to my home each week to check my vitals, change my dressing, and take blood samples. Those results are given to the pharmacist to create a weeklong supply of bags that are delivered to my house.

If I am being honest, I have a love/hate relationship with the TPN bag. Though I am thankful that it has likely saved my life, I feel more like a lab rat than a person. It restricts my freedoms as I move around my home, and being that I have to be on it for 12 hours, it restricts my schedule.

I have attached links below to see what is involved in being on TPN at home.

Setting up the TPN bag https://youtu.be/p9qmSS5Jls8

Hooking up to the TPN bag https://youtu.be/mcit74OgQFs

Disconnect from the TPN bag https://youtu.be/Pgb_ZgjbMiQ

Medical Diabetes

One of the challenges with my TPN is glucose. There is Dextrose in my bag and it causes my blood sugar to sky rocket. I now wear a glucose monitor, and have to dispense insulin into my bag each night, as well as inject insulin into my fatty tissue as needed.

Each chemo treatment begins with a series of pre-meds to help with the administration and side effects. One of those is the steroid Dexamethasone. This also affects my blood sugar, so for about four days after chemo, my body has a hard time regulating itself. We still haven’t gotten the recipe right and my blood sugar gets as high as 478.

Hair Loss

This chemo is Taxol and it is one of the treatments I was on in 2023. It’s most common side effects are neuropathy and hair loss. The dosage is different this time around so I am not expecting to go completely bald, but it is coming out faster than I was hoping.

Where is God Through All of This?

If I am being honest, I sometimes find myself wondering that. This is alot. And this is hard. We so often say that “It is all part of God’s plan”. Jeremiah 29:11 says, “For I know the plans I have for you. Plans to prosper you, and not to harm you, plans to give you hope and a future.” But how can a loving Heavenly Father plan for such suffering?

What if we rearrange the words, and instead say, “God has a plan for it all.” We live in a broken world and bad things happen to God’s children all the time. But God has promised to use it for good, and not let our suffering go to waste.

Cancer sucks. Treatments are hard. But God is in control. None of this is a surprise to Him, and I work daily on trusting Him.

It also helps that my phone often sends me encouraging messages.

Thank you for reading this. If I want God to be able to use this, I have to let it go.