Chemo #2

The second treatment reminded me how fortunate I am. Every time I go into that place, I see people who are really struggling physically with their illness. I see people’s caretakers that are struggling as well. The Center has me fill out a questionnaire each time before starting. The questions more or less are, “As of today, how do you rate your overall health? As of this week, how do you rate your overall health? Does your health affect your family interaction? Does your health impact your social dynamic? Does your health give you financial anxiety?” And the questions go on and on. I feel I answer them the same every time, and that is in a very positive way. I feel 90% healthy. I feel very supported in my family dynamic. I am not financially stressed about money. Unfortunately all of these things are not a given for the other patients that walk through that Oncology Center, yet 95% of them are very positive and are taking their treatment one day as it comes. This past treatment, I overheard an older Asian couple, definitely old enough to be my grandparents’ age. I could not tell who the patient was and who was the caretaker, they were both spry and upbeat. They were just laughing, and cracking jokes with the nurses. They were not going to let chemo day ruin their mood. They are resilient, and such great role models without even knowing it.

My treatment again went smoothly. Paul and I seem to be getting into our routine before going into the Oncology Center; we now know what to pack for “sally activities,” and how much food to bring. Everything went well with Porticia, and we were able to finish chemo at 2pm, which was a full two hours ahead of the first one. This was very promising as to what the routine schedule would be moving forward. As with the first, I felt good when finishing and was ready to stretch my legs, so I went on my walk to the Summit Overlook. It was well over 80 degrees so I took solace in the shade that day, still catching a cool breeze on my neck and a reminder of the beauty around us. My breathing exercising were not as focused; I could not quite get into the zone. But I made sure before leaving that I told myself over and over how strong I am and how my body is healing. And I will keep fighting.

My steroid seemed to wear off earlier from this treatment, as I had no issue falling asleep that Wednesday night. Come Thursday and Friday I made sure to get in my walks early in the morning when my energy was high, and the heat was low. I took my naps as needed, and the only new side effect is the taste of water. It had a metallic taste, so lots of lemon were required to get through the first couple of days in order to hit my hydration levels. A couple of other foods had subtle taste variations as well, but nothing that would prohibit me from eating them. In our Cancer Fighting Kitchen cookbook, it warns you of these taste variations and gives you four ways to combat it:

• ·         Fat: Adding Olive Oil or Coconut Oil to cooking
• ·         Acid: Adding Citrus, particularly lemon to items you drink
• ·         Salt: Adding Himalayan Sea Salt to food
• ·         Sweet: Adding Maple Syrup in small doses to your food or drink

I want to point out the “pump” that I have for two days after chemo and immunotherapy are done. While I refer to treatment as my “chemo day”, I actually receive meds for three days. We have affectionately termed this small, softball size pump the “buzz ball”, but I get no buzz from this contraption. It hangs out on my waist in a small fanny pack for 46 hours post treatment, releasing an additional 5ml/hour of medicine into my port. Luckily, as the medication goes into my system, the ball goes down and has very little weight in the end. I guess previously, the pumps were quite cumbersome. This is just another example of the advancement of science and, while subtle, it making patients’ experiences easier.

During this week of chemo recovery, we were experiencing an extreme heat wave in the Twin Cities, with a string of days all above 90 in May. What’s the best course of action? Get out of town! With the blessing of my oncologist that it was okay to fly, Paul and I left Friday evening for Baltimore to see friends and have a nice weekend away. Paul was very nervous leading into the trip, and rightfully so. He didn’t want anything to impede on my recovery, and he feared having me away from my routine comforts would do that. We took extra precaution with over-packing. I swear we looked like new parents who were taking their child out for the first time and didn’t know what could go wrong. My “just-in-case” supplies probably outnumbered our regular luggage, but we were ready! We also really thought about germs when traveling. I was that lady on a plane wearing a mask that no one wanted to sit next to. “No problem! We like having the middle seat open! Don’t mind me while I sani-wipe everything in my surrounding area!” The trip went really smoothly and it was actually quite a nice to break from routine. I learned how to adjust to living outside of my house, particularly with eating and taking care of my colostomy. It didn’t take much effort to find meal options that I could eat. I hit my protein, hydration, and fruit/veggie numbers and the food was amazing. I’ve never been so excited about the cooked rolls section of the sushi menu, ha ha.

Returning to St Paul will be like many weekends away in the past, where you don’t want to work in the morning and we have no clue what we are going to cook for dinner, with the limited food left prior to our trip. I welcome the cats’ excitement to our return and the quasi-deflated feeling as I return to my routine. I welcome this feeling, as I’m so fortunate to get away, to spend time with amazing friends who’ve been supporting me for years and this is no different. I’m fortunate for the joy and love (and sarcasm) that was shared with everyone this weekend. What a great recovery period. Bring on #3.

Sally Forth.

Chemo # 1

Leading into my first chemo, I had high anxiety. Each chemo patient has a different experience with these treatments, and they have evolved tremendously over the years. How can anyone really describe to you what it is like to have poison infiltrating your body? I really had no idea what I would feel. But I was following the proverb, "The enemy of my enemy is my friend."

On Wednesday morning at 9am, I went in for bloodwork first. Since I hadn’t had any treatments before, there was no concern that levels would be low. However, providing bloodwork before a treatment is the norm. Next, I met with my oncologist and the research nurse that is my main contact for the clinical trial. Then onto the juice!

The original chemotherapy plan would have me receiving treatment for four hours. The addition of the immunotherapy now makes it five. I went back to the chemo center and picked my chair for the day. I had packed BAGS of food and activities to keep me busy. I definitely looked like the new kid on the block with all my baggage. Well, I should say all the baggage that Paul and my Aunt Jill carried for me. We set up shop and were ready for the games to begin!

I have a tendency to give names to inanimate objects, and now that I have all these new features to my body, the additions are no exception. My stoma (the external hole on my stomach for colostomy) is named Tommy. My port is Porticia, and Porticia was being put to work.  She had already given a ton of blood that morning, now it was time to receive the IV meds. She did great! I didn’t feel a thing. The only annoying part is when they clear the line with Saline. I can taste that and I’m not a fan. But if that’s the worst thing, bring it!

It was just a really long day. Not surprising that the first session took a bit longer to get going. With Porticia, I stay plugged in the whole time. They just connect a new IV bag to her tube when they switch to a new drug. The final bag wrapped up around 3:45, and then they hooked me up with a small, portable pump ball that would provide medication 5ml/hour for the next two days. We finally got out of there at 4pm. I was so happy not to be sitting!

They explained that a steroid and anti-nausea meds were given via IV during the session. This would help combat initial fatigue and nausea, which was very nice. When I got home, it was a beautiful day, so I went for a walk. My therapist (got one of those now) recommended I take time after treatment to find an enjoyable place, and to visualize the treatment working into my body. So I did just that. I went to the Summit Overlook, let my hair down to feel the breeze and sunshine, and did some breathing exercises while visualizing the medication working through my body and healing me. I reminded myself that I am strong, and I am healthy and I will beat this. I’m not very good at meditating, so instead of listening to Tibetan monks chanting, I turned to Pink Floyd. They’re totally zen, right?

In the days to come, the fatigue slowly set in, which meant lots of naps. I proactively continued to take anti-nausea meds, so that was really kept at bay. The weird side effect I started having was sensitivity to the cold. It made my fingers and toes tingle, and if I drank something cold my tongue and throat would tingle as well. So, I start using oven mitts in the kitchen to open the fridge, I have to run the water for a bit to warm up before washing my hands, and I eat and drink everything at room temperature. 

It was Mother’s day weekend, and my parents came up to visit. My aunt was still in town from San Diego, so it was really nice to have family around. Our good friends Elise and Efren hosted a Mother’s Day cook out and we all enjoyed the beautiful day.

Sunday was really the end of my post-chemo symptoms. I was able to return to work on Monday and didn’t need any naps during the day. While I was taking walks every day, they weren’t as long as usual. By Monday/Tuesday, I was back to my normal biking and walking routines. It was a nice feeling to know I had more than a full week still to recover. I was feeling good. I went in on Wednesday, one week after my chemo, for the oncology labs to check my toxicity levels. All of my levels had already returned to what they were pre-chemo, so that was really encouraging and a great feeling. I am strong, I am healthy and I will beat this.

Sally Forth.

Post-Op Recovery and Treatment Plan

My surgery was successful in removing the visible tumor in my colon. The goal of the chemotherapy is to attack the microscopic cancer cells still remaining in the colon, as well as reduce the metastases in the liver and lungs. My body needed time to recover from surgery before starting chemo, as chemo will retard the healing. The surgeon and oncologist outlined a minimum of four weeks before treatment could begin.

I was in the hospital four days post-op, then able to go home. Our family and friends were instrumental in helping both Paul and I during this post-op recovery, with many coming to stay with us to aid me while Paul went to work. The surgery not only left me with a colostomy system, but a 5-in incision, a 1-in incision and two ½-in incisions on my stomach. These incisions were held together by a total of 25 delightful staples. The staples remained for two weeks, and really minimized my movement. Once they were removed, my mobility and exercise increased pretty rapidly.

 Of course, one if the first questions I had for my oncologist was, “What can I do?” Dr Torgerson and her team outlined the optimal diet to aid in my treatment, as well as encouraged exercise. I have adapted to a Mediterranean diet, which means I eat lean proteins (100g+ per day), avoid processed sugar, white flour, and focus on plant-based foods. My hydration is also incredibly important for both recovery, as well as the colostomy system. I have to consume 100+ oz daily that do not contain caffeine or alcohol, both of which I have removed from my diet. I started exercising daily. Initially walking only. Once I became more flexible and confident in my strength, I began biking as well (My new bike's name is Jolene! 😁).

In preparation of treatment, I had an outpatient procedure to insert a port in my upper right chest. A port is a small plastic disc about the size of a quarter that sits just under the skin. A catheter connects the port to a large vein. My chemo medicines are given through a special needle that fits right into the port. I’ll also have all bloodwork drawn through the port.

As the treatment time drew near, my oncologist indicated I was eligible to participate in an immunotherapy clinical trial. Immunotherapy is treatment that uses certain parts of a person’s immune system to fight diseases such as cancer. It does so by stimulating the immune system to work harder or smarter to attack cancer cells, and giving the immune system components, such as man-made immune system proteins. Immunotherapy has proven successful for many metastatic cancers; however, it is not an initial standard of treatment yet for my particular type of colon cancer. This is why I have to participate in a clinical trial in order to receive it. I agreed to the clinical trial, but this meant delaying treatment by one week. The immunotherapy would be given in addition to chemotherapy, not as a substitution.

First treatment session was Wednesday, May 9. I am scheduled to have treatment every two weeks for a total of 12 sessions. The Tuesday before, my oncology lab does bloodwork to ensure all my levels are up enough for treatment. In the event some indicator is below the threshold, that particular session will be delayed, most likely a week. There will always be two weeks in between sessions.

For those interested in the nitty gritty, here are my specific treatment drugs, with market names in parentheses:

• ·         Chemotherapy- FOLFOX (combination of 5-FU, Leucovorin, and Eloxatin)
• ·         Immunotherapy- Nivolumab (Opdivo)
• ·         Additional anti-cancer drug: Bevacizumab (Avastin)

Diagnosis

On March 30, 2018, I was diagnosed with Stage 4 metastatic colon cancer. Colon cancer is apparently a slow growing cancer, so it creeps up on you, or should I say me. I did not have the typical symptoms. My digestive tract has always been quite healthy and I did not notice any variations. In hindsight, I did feel run down six months leading up to my diagnosis. I just blamed it on the work travel and stress. The doctors said most likely, my tumor had been growing for about five years, silently waiting for a good time to give me a bowel block. Apparently, that day was Tuesday, March 27 on a work trip to St Louis.

I started having stomach cramping late Tuesday morning. I questioned whether something I ate just irritated me, or if perhaps I had food poisoning. I ate bland foods for dinner and got a lot of sleeping, hoping it would take care of itself overnight. The next day as soon as I ate some oatmeal, the cramping came back. I considered that I had a gas build up, so I took some Gas-X. Nothing. By the afternoon, I realized I had not had a bowel movement since Monday, and that was extremely unusual for me. I was realizing there was some sort of block, so next step: laxatives. Nothing. No reaction whatsoever.

It was Thursday and at that point I had been in a great deal of pain for more than 48 hours. Luckily, I was scheduled to fly home that day. I just wanted to get home before going to Urgent Care. I had no idea the end would result in almost a week-long hospital stay, but I knew I just needed to get home. My flight had a layover in Nashville. It is extremely rare for me to have a layover, ESPECIALLY on a short trip to St Louis. I wish I could go back and kick my butt when I selected that flight. Why? Why? Because once in Nashville, I got stuck with a 5-hour weather delay. I felt like I hobbled around that airport forever, and at times I outright laid on the floor (yes, in a filthy airport), just waiting for the time to slowly pass. My plane finally took off at 9pm and I puked the whole way back to MSP. By the time I got home, it was around 11pm, and I just collapsed. Urgent care would be a Friday morning endeavor.

I got up Friday (Good Friday) and went to the clinic with the expectation of receiving an enema. An exam and ex-ray were done, however some other patient had already been in that morning and needed all of their enema supplies. WHAT?!? They referred me to the emergency room that was part of the same network, so they would have my file and be waiting for me. I drove myself to United Hospital’s ER- at this point it was 2pm. When the ER doctor saw me, he thought it was very unusual for a healthy 35-year old woman to have a bowel block, so he wanted to run more tests, in particular a C-T scan. So we did, and I waited. And waited. And waited. At 5:20pm the doctor came in and told me the obstruction was caused by a tumor in my colon. In the colon, tumors are almost never benign. He told me it was cancer.

My husband Paul and I had been texting throughout the day. I had naively been down playing everything and telling him there was no reason for him to come to the hospital. His intention was to come by after work to pick me up. I swore I’d be all done by then. Guess not. I asked the doctor to call him and tell him to come now. For about 45 minutes I was the only one who knew. As opposed to an out of body experience, this was intensely and inner body experience. I felt everything, and I could have sworn I was weighted down by a ton of bricks. I thought I should have been sobbing, but I couldn’t. Just a few tears. I had no idea what would come next- the bowel block was still there causing severe pain. I just wanted to go to sleep and hope it was a dream, but it wasn’t. Paul arrived and he sat in my room with me. He didn’t know and I couldn’t tell him. We cracked poop jokes, and I tried to act normal until the doctor came back in. I felt I was lying to him by remaining silent. It was extremely difficult. I wanted him to hear what was medically happening and to be able to ask questions. The doctor finally came in and explained. Now we were both in this.

It was known that I needed surgery, but they wanted to do so strategically to not only remove the block, but also the tumor. More tests were done: full body C-T, a biopsy, and more blood work than I ever imagined. I was admitted into the hospital Friday night and an N-G tube was inserted. Side note: if anyone tells you inserting an N-G tube will be just a little uncomfortable, they are LYING and not your friend. It is extremely uncomfortable and your body’s reaction is to fight it every inch of the way. No joke, I’d rather break a bone than have an N-G tube. This was inserted to try to reduce the stomach contents and ultimately reduce the block as much as possible before surgery. I couldn’t eat or drink anything. This went on until I finally had surgery Sunday morning, April 1^st. 

In my surgery, the two ends of my colon could not be reconnected due to the inflammation/enlargement on one side. A stoma was created on my stomach, and I will have to use a colostomy bag for the duration of my recovery and chemo.  Seeing the bag attached to my stomach next to a fresh 5-inch incision scar was the first tangible sign that nothing would ever be the same again. Funny the things you take for granted, like your bowels. I took a little bit of time in that hospital bed to feel sorry for myself and mourn the loss of my easy-functioning life. Then I moved on. I can’t change anything about what got me to this point, so I just need to do everything possible to heal, recover and fight like hell.

Sally Forth.