Did Daddy Have Cancer?

Last night we went on a family walk as the sun was setting. Near our house there is an area that was under development and was quickly abandoned as the housing market fell apart in recent years. There are sidewalks and trees, and it is set back from the main road. It makes for a serene, enclosed space that lends itself well to family time. We have had some excellent walks there on the long summer nights, and it’s a great place for the kids to get their energy out before bed.

Just before we left our house to take a walk, I had been watching a documentary on Netflix called “Dying to Have Known” about cancer treatments and whether or not the Gerson therapeutic approach can improve health and cure cancer. It was interesting to me because of my husband’s experience with lymphoma back when our boys were very little.

As I expected, when the boys heard the TV, they came out to check what I was watching in case they were missing something. They ended up watching almost the entire last hour of the documentary with me. I have no idea what piqued their interest, but I was glad to have their company. I figured, if nothing else, it might give them reason to ask me questions. Unlike most neurotypical kids, my boys don’t seem to ask a lot of questions, and I have to really make a concerted effort to have these kinds of interactions with them.

So after the movie concluded, we left for our walk. As we got underway, I was recounting part of the documentary to Titan, who missed most of the movie. I briefly spoke about how the work of Dr. Gerson* and Dr. Burzynski* are not viewed favorably in the mainstream medical community, much like how “alternative” autism treatments such as the GFCF diet are viewed with the same disdain, despite a lot of evidence about their efficacy. (*The documentaries, “The Gerson Miracle” and “Burzynski” can be instantly viewed on Netflix.)

I was reminding Titan about how his doctor got upset when he lost weight by eating raw foods, taking supplements and juicing while he was undergoing chemotherapy. The doctor was concerned that his weight loss would make him sicker from the chemo. 

Monkey interrupted us and asked who we were talking about.

“I’m talking about Daddy.”

“Oh. Wait… What? Why was the doctor upset with him? Was he sick?”

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“Yes, Daddy was sick a long time ago. The doctor didn’t like what we were doing to help Daddy’s body stay strong during his treatment. But, Daddy’s better now, so everything is fine.”  

“What was wrong with Daddy?”

“Well, he had cancer. He doesn’t have it anymore. He’s okay.”

I could see the wheels turning in his mind as he remembered the movie we had just watched and all of its talk about cancer. I could see it was troubling him and he started to walk slightly faster so that he could avoid me seeing his face. He tries to cope with emotions by avoiding eye contact because it gets very uncomfortable very quickly for him.

I’ve often heard people say that those with autism have dulled emotional responses, but from my experience I can tell you that I believe that sometimes the surge of emotions can be overwhelming and they are responding in those ways due to a feeling of chaos and lack of control. I think people with autism may feel even more emotion than you or I, and they simply can’t handle the way it makes them feel. Monkey will do whatever he can to avoid emotion, but sometimes it can hit him very, very hard. So, I respected the subtle nonverbal clues he was sending me about how the subject of his dad having cancer was difficult to process.

“Did Daddy really have cancer? What kind of cancer was it?”

“Yes, he did. He had lymphoma.”

Titan jumped in and asked Monkey if he could remember the scar on his body, and told him that the scar came from a surgery where they removed his tumors. He also talked about the blue tattoo dots on his chest that were used to align the radiation machine.

“How old was I when this happened?”

“Well, your brother was a baby…about 6 months old. You were 2 years older than that. You were really young, which is why you don’t remember any of this. We haven’t really talked about it with you because it happened a while ago. Daddy is fine now. So, please don’t worry.”  

“Okay.”

His pace slowed back down a little bit as his emotions began to calm. I figured the door was open, so maybe we should expand the conversation.

“You know you can ask me a question about anything whenever you want, right? Is there anything that you want to ask me about right now? Maybe about Daddy, or autism, or something else?”

“Yes. Why am I allergic to wheat?”

I explained to him that his food allergies are something he was born with, much like my allergies to pollen, and that the special diet is helping his body and brain. I also told him that the allergies are part of his autism and that when he is on the diet, his autism is better. This, obviously, led to the next question…

“Will I have autism and food allergies for the rest of my life, or will they be cured?”

I told him that much like with cancer, some people can get better and some do not, and that this can also apply to things like autism and food allergies. Some people have to stay on a special diet for their whole lives, and that we didn’t know yet if that was the case for him or for his brother. We talked about how the diet has helped his body, his brain, and his autism, and that he needed to stick with it for a while longer.

We talked for several more minutes and I tried to involve Prince Charming as much as I could. I made sure to specifically ask him if he had questions about his autism or anything else. He understands that he has autism, but gets easily confused about the fact that autism is a condition that affects his body and brain, and that it isn’t something more concrete like a local event we have called Autism Day. So, I talked with him about how some kids have autism and some don’t, and reminded him about how we like to visit and play with our friends that have autism at some of the special events we go to.

I know that in time his understanding will expand. All I need to do is keep talking with both the boys and encourage questions in those distraction-free times, such as family walks in the evening.

How do you talk with your kids about autism?          

Parenthood and the cancer diagnosis

Lately, every time I sit down to watch the NBC show, Parenthood, I am in tears by the end of the episode. And, it’s not just a girly hormonal thing.

Generally speaking, I enjoy the show because they incorporate a lot of relevant topics, weaving them throughout their episodes. Things like: adoption, military/PTSD, Asperger Syndrome, and the larger concept of family.

Their recent story line with Kristina getting breast cancer has touched me. Deeply.

As with most people, I have a family connection to cancer. I have seen loved ones pass away from the ravages of this disease, and it isn’t pretty. It’s never pretty.

I have dealt with my own husband getting a cancer diagnosis just before his 30^th birthday.

It was the most difficult time of my life. That seems almost dumb to say because I wasn’t the one who had to deal with cancer – surgery, bone marrow biopsy, scans of all kinds, chemotherapy, radiation and more scans.

I cannot even imagine what Titan must have gone through in those moments by himself.

That’s what I was thinking of as I watched the last scene of the “Together” episode of Parenthood, when Adam was sitting with Kristina in the infusion room, holding her hand while her first round of chemotherapy was administered.


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I did not get the opportunity to be there with my husband as he went through the process, and it hurts me to this day. It was just not possible.

I wasn’t there when he got a terrible chemical burn when the chemo blew through his vein and destroyed the tissue inside his hand – which still bothers him to this day. I wasn’t there when they began diluting the chemo because of how much it burned going in, which took 2-3 times longer to administer. I wasn’t there when he felt immediately nauseous whenever he pulled into the parking lot of the hospital. I wasn’t there when he almost walked away from his last round of chemo because they couldn’t find a vein and he had to spend hours at 2 different hospitals just trying to get the IV set. I wasn’t there when he got the tattoos on his chest to calibrate the radiation machine. I wasn’t there because I couldn’t be.    

We didn’t have much help during that time. It was pretty much us against the world. I had to take care of my non-stop toddler and screaming baby during Titan’s treatment. It didn’t help that the kids and I were chronically sick the entire time he received chemo. We had one cold after another after another. Titan had to wear a surgical mask whenever he entered our house. For months. Even if I had been able to secure a babysitter to watch the boys while I went with Titan to the hospital, I couldn’t be there because I was a germy threat to each person that had a compromised immune system.

Titan after a round of chemotherapy - December 2005

 

It felt terrible knowing that I was stuck at home and my husband had to go through treatment completely alone. As his wife, it cut me to the core. And there wasn’t a thing I could do about it.

At the time, Monkey was in the thick of the terrible two’s, which we later found out was autism. Prince Charming was only a few months old, and he didn’t sleep, had terrible reflux despite breastfeeding, and he cried all the time. Of course, now we know he had undiagnosed food allergies and autism.

Every single day was intensely challenging, and if I managed to get a couple of hours of uninterrupted sleep a night, I counted myself lucky. Dealing with Titan’s cancer in the middle of all of that was just one more layer of chaos to a life that already felt completely out of control.

I was trying to figure out how to parent my children, who both seemed like unsolvable puzzles. I was trying to care for my husband who still had to work and support us, and couldn’t really help me with the kids or the house. All I could do was educate myself about cancer and treatments. I felt that if I couldn’t be there in person to show my support and sit with him for the hours he had to be there, I could show support from home by learning as much as possible to help him.

During the course of my husband’s diagnosis, surgery and treatment, we made a conscious decision to not focus on being scared or sad, but to maintain a positive and proactive approach. We did not grieve the diagnosis or dwell on anything that could go wrong. We both knew that Titan had to stick around and that there were no other options, so we agreed on maintaining that attitude and asked God to help make our faith a reality.

When we sat in the room with the doctor and went over the results that showed the presence of cancer, we accepted the diagnosis with a smile and not tears. Our response was unsettling to the doctor, who scolded us for not taking things seriously.

It was then that I became educated.   

Up to that point, I was staunchly mainstream with all of my ideas about medicine, food, and doctors. Everything I thought I knew was challenged. And, that is when it all changed for me.  

I learned the difference between vegetarian, vegan and raw. I learned what a naturopath does. I learned that there are stores dedicated only to supplements, vitamins and nutrition. I learned about acid-alkaline balance. I learned that charities like the American Cancer Society and Susan G. Komen are not all they’re cracked up to be. I learned that there is a difference between juice you buy at the grocery store and juice you make at home with a fancy machine.

I learned so many things!

I tried to use this knowledge for my husband’s benefit as he dealt with cancer. He lost 30 pounds, he lowered his cholesterol significantly without prescription medication, and he didn’t lose his hair as they promised us he would (although it did thin a bit). The doctors were extremely worried about his weight loss, and we were able to convince them that it was actually a sign of his good health because of the changes we had made to his diet and nutrition. We were trying to support his body so that he could better deal with the toxic effects of the chemotherapy.

It has been 7 years since he received his diagnosis.   

One thing is for sure: everything we learned about cancer has helped us with autism. Everything.

For that, I am thankful for the experience, despite how difficult it was. My eyes may not have been as open had my husband not had cancer. I probably would have never considered anything “alternative,” like the GFCF diet that unlocked speech for Prince Charming.

My boys are better off now because my husband had cancer. That is a completely bizarre thought, but it’s true.

I wish I could have been there for my husband in the ways I had hoped to as his wife, but our life just didn’t allow for it at the time. I think any wife and wannabe super mom always hopes to do it all, and it’s hard when reality doesn’t allow you to even try. I know that I can’t change what happened and that Titan understood, but I still wish I could have done more. There is still a lot of pain and pangs of guilt over that, which all came flooding back when I watched Parenthood.

Now that we are so far removed from the diagnosis and treatment, I can allow myself to feel those feelings. A little bit of distance from it helps me realize how remarkable the whole thing was, and how well we did in the circumstances.

It feels like an eternity has passed, yet when watching the show, it’s like it was just yesterday. I guess as long as the cancer storyline continues on Parenthood, I’ll get a little bit of therapy one episode at a time.      

          

Generosity and Guilt

It’s the holiday season and there are a lot of requests out there for “donations to a good cause.” The one that stands out immediately in my mind are the bell ringers with their trusty red buckets. Is it just me, or do they make you feel guilty? Have you ever noticed how they speed up the ringing of their bell as you approach? They watch you avoid their glance as you hurriedly walk by, and it feels like they are silently judging you for not dropping your loose change into the bucket! Oh, the pressure!

This feeling is made worse when I am walking into a store to buy gifts for other people, or better yet, when I’m shopping for something that is completely ridiculous and frivolous. Then there are the pleas while checking out at the cash register. “Would you like to donate a dollar to (insert wonderful cause here)?” Once again, it doesn’t help the feeling at all if I am buying something completely non-essential, or if there happens to be among my pile of groceries, say, 5 candy bars that I intend to squirrel away for those sort of days when chocolate fixes everything (and maybe shove 1 in my face when I get to the car...for good measure!).

When being confronted with an opportunity to give and I respond by not giving…it makes me feel guilty. I’m not the only one, right? I know it’s somewhat irrational. But I do feel the guilt. Well, at least I did.

If I had to pick between calling myself a giver or a taker, I would describe myself as a giver without hesitation. I give throughout the year – tangible items, money, time… All of these things go to worthy causes that I feel good about making a contribution to.

My husband and I both feel strongly about being generous whenever possible. This was something we talked about back when we were first engaged and were planning out how we would handle our finances as a married couple. It is still a part of our conversation today.

Over the past 5 years I have changed my views on giving money away without a second thought. Since our family has endured cancer, and now autism, I’ve learned that you really should research the organizations you give money to. It makes sense to know the organizations before you start handing over your hard-earned dollars. And, that means knowing them beyond just their name. Even though an organization has a particular keyword in its name or is the most recognized for its particular little piece of the charitable world, it doesn’t mean that’s where your money could have the most impact. If you look into some of those organizations you might find there are some less than savory ways your money could be managed. Unfortunately, there are many nonprofits that pour their donations into things that are less than charitable. And, I have to say, bigger is not always better. Sometimes bigger is much worse.

These days I try to focus on giving money to places that my family has had direct contact with or benefit from. I love giving to local organizations and churches that keep their money in my community and help those that need it here at home. I think this is a much better idea than funding an overpaid executive’s retirement package 20 states away. I like knowing that my donation will make a tangible impact locally.

Giving of my time is now the largest contribution I make. I don’t have much money to give (being the mom to 2 boys with autism is bloody freaking expensive!!!), so I give what I can, and that includes my time, energy, effort, knowledge and passion. I started volunteering about 4 years ago for the things that impact my family the most. And, it’s so meaningful! My hope is that it’s meaningful to many others as well.  

In the past year or so, I finally came to grips with my crazy guilt over not always donating to the cause that’s right in front of me. I am now okay with not being generous in every single moment. I still do give away money, when I can spare it. I also recognize that I am doing my best to be generous over time, and for the things that matter the most to me.

Want to know what I say to the checker at the grocery store now? “No thanks! I have my own cause to support. I have 2 boys with autism and they get every penny I have to pay for their therapies and treatment. Besides, I also run a special needs support group and nonprofit organization, and I could really use some donations for those things, too!” You would be amazed at how many business cards I’ve handed out and how many people I have talked with about autism in the grocery store after dropping a line like that.

And I think that’s something to be proud of. Guilt, be gone!  

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.