When I was discharged from the hospital, I have to admit, I was miserable. I had gotten comfortable in the hospital, as I said in my last post, and was used to having nurses at my disposal 24/7 for whatever I needed. And I still felt like I needed a lot of help. Before I was discharged, I had to do “daily activity” training with the nursing staff. This included practicing getting in and out of bed, putting my clothes on, walking to and using the bathroom, and things like that. You never realize how much you use your gut and abdomen until that part of the body isn’t able to be used. Frankly, I wasn’t sure I was ready to go home. Sarah and I were living in an apartment in Center City, Philadelphia and our amenities weren’t quite hospital-grade. Nevertheless, the hospital staff ensured me I was ready to go home, and that’s what I did.
The first few days at home were just as miserable as I expected them to be. I was in tons of pain, couldn’t move around like I wanted to, and had zero appetite on top of it all. My wonderful mother stayed with us in our apartment for that first week, and slept on our tiny couch in the living room while I was holed up in our guest room which was doubling as my hospital room. I would wake up at 2am, yell for my mom to come help me get out of bed, just so I could use the restroom. How humiliating as a 30-year-old!
Another difficult task for my mother and Sarah was trying to get me to eat. I had zero, and I mean zero, appetite for the first 3 days when I got home. I realized how important it was for me to eat and get my nutrients, but I couldn’t keep anything down. Thankfully, Sarah and my mother were relentless with their “get Michael to eat” efforts, and I finally gave in. I will always distinctly remember the first craving I had when my appetite returned; Rice Krispies cereal with sugar. Yummy.
(Recovering at home with Carson, clearly enjoying myself)
The days did get better after a few days at home. I was getting up out of bed easier, and was able to perform, very slowly, many of my daily at home activities. I was even starting to go for walks down the block. I had at home nurses who would come over two to three times a week to check in on me and my vitals, change my wound dressings, and help me with whatever else I needed. After about two weeks at home, I felt like I was getting my legs back underneath me, and started to really focus on getting ready for chemotherapy treatment, which we had learned was scheduled to begin on August 30th.
Getting ready for chemotherapy basically included exercising when I could (going for walks) and eating to get my weight back up. When I left the hospital, I weighed 160 pounds, and I hadn’t weighed that little since I was a freshman in high school. It was imperative that I added a few pounds, because I’d start losing more once chemotherapy began.
(One of my better days in recovery)
We met with my assigned oncologist about two weeks before I was scheduled to begin chemo treatments. I was going to be receiving treatment at the MD Anderson Cancer Center that was affiliated with Cooper University Hospital, where I had my surgery. It is important to note, for those who want to know, that the MD Anderson facility in Camden, NJ is NOT the same as MD Anderson’s main facility in Houston, Texas…which is world-renowned in cancer care. This will be important to remember down the road in a future post. Here is some more invaluable advice for anyone beginning their cancer journey, if you don’t feel “it” with your oncologist, make a change. After meeting with my oncologist for the first time, Sarah was not sold and I was very nervous. There were some pieces of information that my oncologist was either missing or misspoke on, and it just did not set the relationship off on the right foot. One of the things that Trey Mancini preached to me about was a blood test called “Signatera”, which administered by a company called Natera out of Texas. The test is a circulating tumor DNA blood test, which means that it basically looks for traces of cancer in my blood stream, among many other things. Trey was adamant that this test was imperative to his ongoing surveillance and told me to get this done. Well, when we brought this to the attention of my oncologist, she basically scoffed at the idea and ignored our request for the test. This didn’t sit well with me or my wife. After our first meeting with the oncologist, Sarah wanted to make a change. She was right, and I should have listened to her. But again, I had been chasing doctors down for so long just trying to get diagnosed. Now things were moving and I wanted to move with them. My pathology report revealed my cancer was aggressive, and I wanted to start treatment as soon as I could. There’s no blueprint to follow for this cancer journey, and once you’re in motion sometimes you just want to keep going. But listen to your gut, always get second opinions, and make a change if something is not good enough. This is your life and your health, and it’s the most important thing in the world. It is okay to be selfish. I will get into more details about this in a future post, because the troubles did not end there, but that’s for another day.
We learned that I would be doing six months of chemotherapy treatment, having infusions every other week for a total of 12 treatments. The chemo regimen/cocktail I was going to be receiving was known as FOLFOX, which includes the drugs leucovorin, fluorouracil (5FU), and oxaliplatin. I would receive these drugs via a port that was going to be installed on my chest, which would be connected to veins, arteries, and such underneath my skin. Very advanced and fun stuff. I would also have to wear a pump home for 48 hours, and this pump would continue to infuse me with the 5FU drug for two additional days following treatment. I was made aware of the potential side effects from these drugs too. I was thrilled to hear that I would not be losing my hair (it would thin though, but it is doing that already so who cares!) The other potential side effects were fatigue, nausea, and neuropathy. After learning about all of the drugs and their potential side effects, I was getting extremely anxious and nervous to begin chemotherapy. Chemotherapy sucks, to be blunt, and no cancer patient enjoys it. If they do, they are lying to you. But, it is also life-saving. I made a promise to myself that no matter how bad the side effects got, I would never lose sight of what the chemotherapy was doing, saving my life. That’s been very hard to remember at times.
(Me at home with my chemotherapy pump)
The last thing that needed to be done prior to beginning chemotherapy was having my chest port installed. This was done via an outpatient surgical procedure. The chemo chest port is a small cap and tube that attaches directly to the veins, allowing the chemo drugs to be delivered directly into my port rather than a vein. The port was installed on the right side of my chest, and I was awake, despite being drugged, for the entire procedure! Talk about a weird sensation; having something installed under your chest while your awake! Overall, the procedure was not bad at all. And with my chest port installed, I was ready to begin chemotherapy.
My next post will discuss my first few chemotherapy treatments and how I responded. As I’ve said, chemotherapy sucks and nothing about it is fun. The only nice thing is sitting in a comfy chair while I pump and watching a movie or two. You also meet some wonderful and amazing people in the infusion rooms, both nurses and patients. My scripture reading for this post is Jeremiah 29:11: “For I know the plans I have for you”, declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” I have this reading on a sign in my home and think about it/read it often. God loves us so much, its impossible to understand how much love He has for us. We were made perfect in His image and He wants what is best for every single one of us. He has blessed me so much in my life; I have a loving and supporting family, and I have access to quality healthcare that many do not. I try to never lose sight of my blessings and God’s love, even if it is hard some days. There have been many times I look to God and ask “why?”. I’ll never know, only He knows. All I know is that God is with me in this struggle and He will see me through.
Happy New Year & talk to you all soon,
Michael.
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