Tuesday, May 3, 2011

Cancer-free for 5 years

April is a big month for us, especially this year. Not only was it Autism Awareness Month, it also signaled the official end of my husband’s journey with cancer. This April was his 5-year anniversary of being cancer-free!
Five and a half years ago he was diagnosed with Hodgkin’s Lymphoma. He had Stage One, which meant the cancer was only present in one area of his body. Cancer is never good to have, but we were told that if you had to get it, you would want Stage One Hodgkin's Lymphoma.
Back then Monkey was a rambunctious toddler who was exceedingly hyper and difficult to control. We had no idea that we were dealing with autism, and I thought he was just going through an extended bout of the terrible twos. He had lots of trouble with ear infections and had tubes placed in his ears, and he was also having problems with chronic diarrhea.
Prince Charming was a baby and we were having lots of trouble with him sleeping. It seemed he cried almost all of the time. He had recurring thrush, reflux and severe constipation. It was not uncommon for me to keep vigil at the baby swing all night long so he could continue rocking while I caught 10 minute naps.
It was a very difficult time.        
The holiday season was quickly approaching and that’s when cancer became part of our vocabulary.

Just a few days later my husband had surgery to remove the largest tumor, which was the size of a tangerine. Shortly after that he had a bone marrow biopsy and then he began chemotherapy in December. The entire time he underwent chemo at least one of the boys or I was sick. It was the longest episode we had ever experienced with recurring colds in our household. Titan had to wear a surgical mask whenever he was around us. I remember being so worried that he would get sick. The boys were used to crawling all over him and playing, and they could not understand why I constantly tried to keep them off of their daddy. Not only did he feel tired and crummy, he certainly didn’t need a stray cough in the face. I also went through multiple cans of Lysol in an attempt to continuously disinfect the house. I was as diligent as I could be, but with sick little ones and their drippy noses and grubby hands I knew I could only do so much. I’m happy to say that by God’s grace my husband never did get sick.
Following the chemo he always felt terrible. After several days he would finally get to feeling human again and then literally in the next day or two he’d have another chemo session scheduled. He never felt fully recuperated, which made each chemo visit a little bit worse. This set the stage for a fairly low-key and somber Christmas.
His last chemo treatment was the hardest. When they started his IV they blew the vein a couple of times and the drugs ended up leaching out into the muscle on the top of his hand. The drugs were so very toxic that he became victim to an internal chemical burn and it wasted away some of the tissue in his hand. It was excruciating for him. He ended up with a divot in his hand where there was an absence of muscle. It took several years for that to no longer be visible or extremely sensitive to touch. 
Upon the conclusion of chemo, he finished off the winter with radiation. Luckily the radiation was not nearly as difficult for him physically, which was a welcome relief. As part of the radiation process he got pinpoint tattoos on his chest (used to align the radiation machine), and they now serve as a permanent reminder of his experience. At the time I remember being extremely upset that he had to get tattoos. I didn't care that they were really small and that you couldn't see them unless you were specifically looking. It was just one more thing that was crappy about cancer and it pissed me off.
The hardest part for me was that I was at home with 2 sick boys who were having lots of their own problems. I couldn’t join my husband for his chemotherapy, radiation, or appointments with his Oncologist. I was there for the initial diagnosis because we knew what a big deal it could potentially be. I was also there for the bone marrow biopsy and tumor removal surgery because he was sedated and needed me to drive. But other than that, he had to walk the path of cancer alone. As a wife who desired nothing more than to be supportive and loving, not being able to be with him every step of the way made me feel indescribably awful. We didn’t really have access to reliable childcare, and I certainly didn’t want to expose him any further to my cold germs and risk him getting sick. I knew I didn’t have a choice. So, I threw myself into what I needed to do at home. 
The one good thing that came out of cancer was that I became open to many things related to health and nutrition. I had always shied away from that stuff before. I liked the quick and easy, American consumer culture. I was the poster child for that lifestyle. Thanks to a couple of close friends who knew a lot about health and were helpful beyond measure, I quickly learned the meaning of words like “vegan” and “Naturopath” and “juicer.” With their help and that of a Naturopath I got him to see prior to the start of his chemo, we sought to support his body through food and supplements in the hope of making the oncology approach a less toxic experience.  
Based on what I know now, I would not be so willing to have him pursue the traditional approach of chemo and radiation right out of the chute. But at the time, I did the best I could as I learned along the way. It was good for me to have something concrete to focus on since I couldn't be with him during those appointments. And, learning all kinds of new things helped to keep me out of the doldrums.

I bought a juicer and made green juices and smoothies. I prepared vegan and vegetarian meals with organic food. We removed milk from our house and began drinking lots of spring water. I sourced high quality supplements to augment his diet based upon the recommendations of the Naturopath.
Guess what happened? He lost 30 pounds! The doctor had serious concerns about his weight loss, thinking it was due to the nauseating effects of the chemo. We were happy to tell him it was because of a healthy diet and supplements. 
Strangely enough, my husband’s cancer experience actually helped to prepare me for dealing with both of my boys being diagnosed on the autism spectrum. The door to understanding and change had already been opened. I didn’t have to start from scratch. I had purchased supplements before. I had changed diets before. I had dealt with stress related to a medical issue before. I had trusted in God’s will before. I had stood strong with my husband before.
Through it all, my husband is now cancer-free for 5 years! And, I’ve got 2 boys diagnosed on the autism spectrum that have made progress in leaps and bounds, due in part to what we learned as a result of cancer. It kind of feels like a full-circle moment you would talk about on Oprah. I think it’s a perfect way for our family to end Autism Awareness Month 2011.  

5 comments:

Cari said...

Angela thank you for sharing that. Wow! I am speechless. What strength you have. Blessings to you and your family.

Caffeinated Autism Mom said...

Cari, thank you so much. I don't necessarily think of it as strength, but rather being forced to either suck it up and move forward or quit and be a blithering mess. We did what we had to, and I think most everyone else would do the same. I'm just happy that he's well and my kids are also doing better. Like I always say, God has a plan. There is a purpose for everything and there is always a lesson in the hardships. The hope is that we become better as a result of those hardships.

Cari said...

True when life hands is those lemons, we certainly find out what we're made of. I'm glad you all made it through. I think God too gives us those trials so we get a glimpse of what we can handle to prepare us for what lies ahead-to help us deal with the trials and see the blessings therein.

Caffeinated Autism Mom said...

Agreed 100%! Thanks, Cari. :-)

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