Two Sides, One Coin

A lot of the blogs that I started reading when I was diagnosed don't have many new posts anymore. People's lives return to something close to "normal" or they die. In both cases, they stop posting.

For me things have gotten back to something resembling normal. I've been back at work full time for over 6 months, my side effects have subsided to the point where they're annoying and frustrating but I'm learning to live with them. I still get tired more easily than I used to, my digestive system is unpredictable at best and I'm pretty much always in some sort of discomfort from it, I'm 30 pounds heavier than I was when I was diagnosed and my muscles cramp up quite painfully all the time. All in all, not too bad given what I carry around inside my blood.

The same is not true for all with this cancer however. Over the past year I've corresponded with a woman whose son (roughly my age) was diagnosed with CML and subsequently failed Gleevec. He had a stem cell transplant and had passed his 100 day mark with flying colors.

Then I got an email last week that I will let speak for itself:

I am praying you are still doing well on your CML journey. Sadly, I have to tell you that my beloved son, Robert*, passed away on Friday, Nov. 6. Since I last emailed you, the sharp pains in his back turned out to be relapsed leukemia in his spine. Sometime during chemo, the leukemic cells passed through the blood/brain barrier and formed chloromas. In July, he was unable to have a bowel movement for 3 weeks. We went to many doctors and they all told us there was no blockage and keep taking laxatives and painkillers. We took him into the local ER on July 24 and after a CT scan they sent him home with more laxatives. By the next morning, Robert could no longer walk or urinate. We rushed him to the ER in Hackensack where he had his transplant and an MRI showed a leukemic tumor engulfing his spinal cord. He underwent surgery and radiation treatments. He was only able to walk with a walker after that but he was determined that with PT he would walk again. But the pains started again in his back and the scans showed that the tumors had spread to his entire spine and he was radiated again. He even underwent a donor leukocyte infusion (DLI), but there were still signs of white cell abnormalities. Hackensack told us that they were out of options and suggested we head down to MD Anderson in Houston for an experimental drug trial.

We left here on Oct. 11 for Houston and in less than 4 weeks, he was gone. He never got into the trials. When we met with Dr. Cortez, Robert was coughing and we were told it was due to radiation of his neck area. But it turned out to be pneumonia and he was immediately put into the ICU there. He was also given a round of chemo which I questioned since he was so vulnerable at the time. They tell us he had a drug reaction to an antibiotic and he got Steven Johnson Syndrome, actually TENS, as his body blistered over 90% inside and out. He was transferred to a burn unit to dress his skin daily but the disease took everything from him. He was on a breathing tube the final week of his life. He was blinded, unable to speak, no mobility, just nothing. It was a horrific death but he is at peace now, we are sure. He was taken from us way too soon.

God bless you and Wendy. My wish for you is to have many, many more happy NORMAL years. Hopefully, soon there will be a cure for all cancers.

* I've changed the name at the request of his mother.

My heart goes out to his mother as well as his entire family. It's not fair and it's not right.

Are You Pregnant?

I slipped out of work a couple of weeks ago to have a nice quiet lunch at Noah's over a Metro newspaper and enjoy the fabulous September weather we're having. I had just taken my first bite of sandwich when I noticed a woman enter in shorts, a t-shirt, a do rag and no hair anywhere on her face or head. She had a bandage on her arm where I'm assuming a picc line had just been removed or was hidden. She was obviously being treated for cancer.

I felt an immediate kinship with this woman whom I've never met before due to a disease that we had in common. I planned to wait for her to sit down so I could strike up a conversation with her. I was interested how her treatment was going and what kind of cancer she had. I wanted to connect with this person, to tell her good luck, to listen to her vent, and to enjoy a nice lunch with someone else who had cancer. I wanted to let her know that there are other's out there going about their lives, dealing with hardships similar to hers. Most of all, I just wanted to hear her story.

Alas, I never got that far. The more I thought about it, the less appropriate it seemed to approach a stranger in a restaurant, ask them if they had cancer and then ask them questions about it. The risk of putting my foot in my mouth was akin to inquiring if a woman was pregnant. What if the woman didn't have cancer after all? What if the last thing she wanted to do was talk about her treatment or disease with some random stranger? The more I thought about it, the more it seemed best not to approach her.

The feeling that settled over me and prevented me from approaching her was a combination of respect and fear. I did not want to risk causing this woman to focus on her cancer and potentially ruin an otherwise escapist meal. I wanted to respect her privacy despite her appearance making her cancer public and I feared potentially upsetting her.

I have the fortune (depending on your viewpoint) not to have any external signs that I have cancer. I've made it 4 months at my new job without any of my co-workers guessing that I have a medical condition, let alone cancer. I don't hide it (this blog is public and has my real name and picture attached to it), but I don't advertise it or offer information about it either. I find it a relief to shade my cancer in anonymity such that it's not the first thing that comes into someone's mind when we speak. I don't have to second guess people's expectations or evaluations of me, they expect from me what they would expect from a normal person. This woman did not have that luxury. She had no eyebrows and no hair. She was sporting the tell-tale "cancer hat". She couldn't hide her cancer if she wanted to and there was no way for her to get through a day without someone doing a double take as she passed due to her appearance.

But oh how badly I wanted to speak with her! I kept debating until she finally got up and went about her day, ambling off down the sidewalk with her companion. I'm now left with a feeling of loss for never having met this woman and experienced her story.

I would like to believe that people with cancer are in a club and we get some special privileges that others might not. We can broach topics that would be taboo for others because we've been there and done that. Despite the wildly varying treatments and procedures for cancer, we can at least sympathize with what a cancer patient is going through in ways that people who have never been through them cannot.

The reality is that each person deals with this differently. Some guard their privacy fiercely while others broadcast every trial and tribulation to anyone who will listen. You'll never know unless you ask, and this time I felt it best not to ask.

To the stranger at Noah's: I wish you all the luck possible with your treatment. There's someone out there that you don't know hoping that a positive outcome somehow finds you soon.

Beauty and the Bun

I convinced Wendy to model for me in the backyard. She's really starting to show and I wanted to have some pictures of her in different stages of pregnancy.

Here she is at 24 weeks.

Wendy and our Gleevec baby.

Banal

Wendy and were at Stanford yesterday for my quarterly checkup. We did the usual blood draw and then had a quick "drive-by" visit with the oncologist.

It was no big deal.

It's so strange how normal and banal this has all become. I used to fret for a week beforehand and wait on pins and needles for the PCR results to come back. Now it's just all part of life. I forgot about the appointment until last weekend and I didn't even take the whole day off work. My CBC and metabolic panels came back normal and I'm not worried about getting the PCR results back. I'm just assuming that it'll be a good result.

It's so strange how my attitude has changed in the last 5 months. My mindset is shifting from "this is something that will always be with me and I'll never be free of it" to "I've beaten this and I'm moving on". Thank you Gleevec!

On a distinctly non-mundane note, Wendy has grown quite a large belly! All the tests and ultrasounds show a normal, healthy baby. She's 23 weeks along and going strong! Our house is slowly starting to fill up with baby furniture, clothes, towels, strollers and all the other paraphernalia, brick-a-brack, contraptions and "essential items" that soon-to-be new parents blow their money on.

It's still a little hard to believe that this is really, honestly, finally happening but we're pretty much over the "too scared to get excited" hump and have fallen into giddy excitement and anticipation.

Here's to banality!

I'm In Newsweek!

I hate tooting my own horn but I can't resist this. This blog has been mentioned in an article in Newsweek called "Real Funny People: Young Patients Laugh At Cancer". It's only a "web article" and won't appear in the print magazine, but cool none-the-less.

It's great to see young adult cancer patients getting some exposure in the media. We're often overlooked in favor of the very young or very old.