One year ago today, we received the news that the chemotherapy was effective. The cancer that was attacking the love of my life had been eliminated. Today, we received the same news from the annual CT scan he had yesterday. Aaron is CANCER FREE. With non-hodgkin's lymphoma, statistics show that if it is going to come back, it generally does within the first two years. We are not in the clear yet, but this is fantastic news. He also has a very high likelihood of acquiring leukemia due to the chemotherapy drugs (after seven years), but we will fight that battle if and when we get to it. Live in the present. Love in the present. To say we are ecstatic would be an understatement.
For many months in 2015, I watched as my someday husband turned plastic before my eyes, as each different chemotherapy drug given attacked his giant abdominal masses and attacked every healthy cell in his body as well. His color would go from Wisconsin white to pale to ghastly chemo-tainted waxiness. I would hold back my tears and try to remain optimistic. Always optimistic.
Our son Rayn came to the hospital with us for every appointment and every chemo treatment. He was not allowed in the chemo room, where Aaron received treatment through a port placed into his chest, which pumped the "medicine" right into his heart. Other cancer-stricken individuals were also receiving treatment at the same time, in an open room with no partitions, where you would often hear sobs and wails from those whose outlooks may have not been as promising. We met a lot of wonderful people in the waiting and treatment rooms, some of them on the same three-week treatment schedule. Rayn became the joy of many people, whether patients or nurses. Most of all, he kept Aaron and I sane during some of the roughest times of our lives. Sometimes, my sister-in-law and mom would come to watch Rayn at the hospital while I stayed with Aaron. Sometimes it was just the three of us, and I would have to strategically sit along the wall with Rayn right outside the entrance to the treatment room, so that Aaron could still see/hear him, and have some aspect of normalcy while going through hell. Rayn was five months old when his Dada started chemo.
When Rayn turned three months old, we took him to Summerfest to see his first major live show, Stevie Wonder. We had a blast as a family, and made it all the way through to the end of the show, with Rayn just starting to act up during the encore, which just so happened to be our song. The three of us lovingly danced and sang our way out of the amphitheater to "You are the Sunshine of my Life". Our new music shop had been open for just two months, and this weekend was also Strawberry Festival, which is a big event for the area that required us to work extended hours. We were exhausted after the weekend's festivities. Little did we know that the next day, Aaron would end up in the emergency room for what we thought was appendicitis. He was having pretty severe lower abdominal pain and decided, begrudgingly, to go in to the emergency room late at night. Rayn and I stayed back and awaited updates. Aaron had some testing done, and they decided to keep him overnight. He found out he had cancer when he looked up from his gurney to see he was being admitted to the oncology floor. No doctor had discussed this with him. The next few days were a whirlwind of test after test, from bloodwork to scans to biopsies. Rayn and I were not allowed to visit until he was transferred out of the immunocompromised section of the hospital. Aaron had been told some of the worst news of his life, and had to process it alone, until a "room opened up" in the over-filled hospital.
When Rayn and I finally got to visit, Aaron could not touch him or even be near him due to being radioactive from the testing. This was extremely hard for him, obviously. He just wanted to be hold, hug, kiss, and snuggle with his three month-old baby. By the time we got to the hospital, Aaron had lost ten pounds from not being allowed to eat the whole time there. The doctor wanted to place a port and start chemotherapy immediately. We declined this based upon the fact that his diagnosis was not even confirmed by biopsy yet. Why would you inject poison into someone when you are not 100% sure of what sub-category of cancer they may or may not have? Clearly, different sub-categories involve different types of chemotherapy agents... I spoke with hospital staff to make sure Aaron's food restrictions were lifted after they kept depriving him of food and setting the tests later and later in the day. He was starving and miserable, and the pain medication left him unable to adequately make informed decisions. We found out that Aaron has an aortic aneurysm by the fact that a hospital transporter who had wheeled him from a test to his room, left a piece of paper with this information typed upon it. No doctor had discussed this with him or me. I promptly summoned the nurse manager, who got the doctor. We decided to check out of the hospital and proceed with care on an outpatient basis, against doctor's orders. Aaron had been diagnosed with suspected non-hodgkin's lymphoma, and had two giant masses (one cantaloupe-sized and one grapefruit-sized) in his abdomen. The extreme pain was coming from hydronephrosis, meaning that one of the masses was pushing on his kidney, causing it to back up and enlarge. A stent was placed a couple of days later, which alleviated some discomfort but caused a whole lot of other issues.
The biopsy came back as a bad sample. That, coupled with all of the other issues we had at the hospital, led us to seek a second opinion at a different hospital, where we could not get an appointment for over a month. This was a bit concerning seeing as the type of cancer we were dealing with was very, very aggressive. We also chose to drastically change our lifestyle. We immediately chose to stop consuming alcohol, which we had been decreasing anyways. Cancer feeds on sugar, so we also chose to eliminate all refined sugars. We became raw vegan and juiced every morning, despite the hospital's recommendation to only consume boiled vegetables. (Yeah, because surely that is the best way to build up your immune system...) We extensively researched anything and everything we could about Aaron's particular cancer. Aaron started taking mass amounts of supplements, including RSO and CBD oil. We bought a rebounder (mini trampoline) which he tried to use daily to get his lymph moving. He continued to go to work every day at our shop, despite the cancer which had taken over his body and consumed his mind. He struggled to sleep comfortably at night due to the size of the masses. He was laid off from his job as an insurance agent due to being sick. Crazy, I know., because obviously you do not need money while battling for your life. Illness was now affecting every aspect of our lives.
We saw an integrative doctor (who I now work for) and he helped build up Aaron's immune system through oriental herbs. He agreed with everything else we were doing and helped us navigate our options further. Another biopsy was scheduled at the new hospital. The surgeon performing the biopsy went in through the back, instead of the front which they had done for the first one. Aaron had this biopsy done without medication, because he did not want anything unnatural going into his body with which he was going to have to detox from. Sadly, he was never the same after that biopsy. The pain kept him from eating and over the course of a few weeks, he dropped a lot more weight. He dropped about forty pounds throughout the six months of dealing with cancer. Ten came off with the initial hospital stay, a bit more from becoming vegan, and then the vast majority came off from his inability to eat post-biopsy surgery. He became so skinny that his masses were now pushing on his biliary tract, causing it to back up, and turning him very orange and jaundiced. He looked skeletal. We had no choice but to pursue chemotherapy.
We were shocked to discover through the scan that was done just prior to starting chemo that the masses had not grown a bit. Yes, you read that right. Non-hodgkin's lymphoma is EXTREMELY AGGRESSIVE and the masses had not grown AT ALL in the 2.5 months prior to starting chemotherapy. We had kept the cancer at bay with the things we were doing to combat it. Had he not had that second biopsy which made it damn near impossible for him to eat, who knows if the masses would have died off and started shrinking. The oncologists were just as shocked by this news as we were. They kept telling us that by postponing the chemotherapy, we were essentially going to end his life, and could not possibly understand our reasoning. Family and friends also argued with us.
We are advocates for healthy lifestyle choices. In no way am I saying to not listen to your doctor. There are many great doctors out there who do have their patients' best interests at heart. However, there are also protocols that need to be followed. Previous lawsuits leave many a doctor on-edge. Insurance companies also play a big role. The best thing you can do is to research as much as possible. Be confident in the decisions you make. An informed decision is one that leaves you with much less stress after the fact. That being said, in no way do we regret waiting for chemotherapy. It was what was best for us, given OUR circumstances. Had Aaron received chemotherapy immediately while in the hospital, we do not believe he would have fared well. HE WAS NOT READY. Once he did end up getting chemotherapy, he was mentally ready to do so. It was necessary and we had tried everything else we possibly could. We do often wonder though, if the outcome would have been different had they not screwed up the first biopsy causing him to get the second one, which set the course for biliary system to fail, causing his liver to back up, and setting forth extreme weight loss and discomfort.
Cancer is a rough ride. It is a life-changing rollercoaster, turning your whole world upside-down. I believe that Rayn was the seat belt on this ride and while the ride is not over, we are hopefully beyond the worst. We are going to make the most of every moment that we are "coasting".
As the great Stevie Wonder sings in his song "For Once in My Life":
"For once in my life I have someone who needs me
Someone I've needed so long
For once, unafraid, I can go where life leads me
and somehow I know I'll be strong."
Aaron is now faring well. We continue to eat as clean and organic as possible, with very minimal "junk". We have been doing yoga and swim with Rayn regularly and are scheduling an appointment with a cardiologist to check on the aortic aneurysm so Aaron can be assessed and hopefully given the "all clear" to up his activity level. There is no time like the present to be the best that you can be. Nothing is for certain in life. One day you could be with your three month-old at a Stevie Wonder concert and the next you could end up on the oncology floor. Do your best to live and be well.