About 2 weeks ago (June 8th) I had my first formal visit with the spine surgeon, along with a medical resident on the surgical team. The conversation was sobering. They admitted that it could be possible to improve my quality of life with another spinal fusion surgery. But, they said, the procedure would be a true challenge for them and the risks would be great for me. There are many factors to consider before surgery even begins, but first… what would they do in the actual surgery?

Step 1: Make an incision on my (most likely) right side, across the ribs and under the arm.

Step 2: Crack a rib or two open (to make room for their instruments and maybe…hands…ugh).

Step 3: In that opening through my rib cage, they would then go in and move my organs to one side in order to get to the spine underneath. This would also mean moving my right lung over. Ouch.

Step 4: Plastic surgeon would then work on finding and removing as much scar tissue as possible. I have lots of useless scar tissue from previous surgeries. Scar tissue is brittle and only good for internal healing. It’s not at all helpful for surgeons.

Step 5: Once scar tissue is removed/reduced as much as possible down my spine, they will patch me up and close the wound.

Step 6: They’d begin a major incision down my spine, from the back this time.

Step 7: They’d identify two areas of my spinal column that do not yet appear fused. (This contradicts what a previous doctor told me. I thought my whole spine was fused but it’s not.)

Step 8: Surgeons would manipulate my spine so the angle of curvature is lessened at those two unfused points. Here’s an example drawing:

 

Step 9: Once my spine is significantly less curved, they would place a couple long metal rods parallel to my spine. The rods would then be anchored to my bone with hardware. Once done, the rods would extend from about the base of my neck to the beginning of my lumbar spine.

Step 10: Sew me up!

And now, here are some complications/issues to think about:

I have osteoporosis (low bone density). And the rods would need to be screwed/bolted straight into bone. What happens if the bone is not that solid? Doctors say it is an added challenge, but not impossible to work with.

I’m way underweight. How can I possibly recover well from such a traumatic surgery? Doctors agree on this. But there may be hope…through my veins. There’s a way to “feed” someone through the blood. It’s called Total Parenteral Nutrition, except in my case, it wouldn’t be TOTAL. I’d still eat as usual, but get extra calories through an IV bag. This treatment has it’s own set of risks, which I’m not sure about completely yet. But I will meet with a surgeon to discuss this possibility later.

I’m so underweight, there’s no padding on my back. So I’m concerned the wound itself will not heal properly. The surgeon said the skin IS thin, and suggested that a plastic surgeon would most likely be called in (not just to remove scar tissue) to evaluate skin health and discuss best ways to ease wound healing. I may need skin grafts (like patches) to lay over the wound. Or maybe balloon expanders under my skin before surgery. Ugh. I’ll know more when I see a plastic surgeon.

Other complications: Reduced lung function, paralysis, nerve damage, nerve pain, and… you guessed it… death. Oh, and of course the many unknown, unforeseen things life might throw me when I wake up. I also found about a condition that sometimes develops after spinal fusions, which is that stomach emptying slows down. Great. Just great. The surgery I’m having to straighten my back out and alleviate stomach issues may in fact CAUSE stomach issues. Still… it has been my gut feeling (pun intended) that my stomach is bad because of my back. If my back is fixed, I do believe my stomach will get better.

I also had an endoscopy recently, to continue investigating that sharp right abdominal pain I’ve been having. The results of the test were that I have gastritis, severe esophagitis, and a hiatal hernia. That explains the pain. I suspected a hernia, so at least I have an answer now. The doctor also took a biopsy of the tissue to evaluate for any growths or whatnot. I see the GI doctor in a few weeks. For now, she prescribed a different anti-spasm medication for the ab pain. The hernia, I’m sure, adds another complication to the spinal surgery. If I’ve got a piece of stomach sticking through my ab/diaphragm, and then surgeons start scooting my organs all over the place, I don’t need my stomach ripping or something. I’ll bring this up to them when I see them again.

Ah… lots to take in and think about. And I HAVE been thinking. But that’s for another post.

On May 21, 2011, we took our daughter to her very first live baseball game. It was at Raley Field, to watch a Rivercats game (minor league). She was totally into it. She was yelling, clapping, cheering…all of it. Unfortunately, we didn’t stay for the whole game since it was a school night (and it started at 7pm). Before the game, [my kiddo] and her dance team got to perform on the field. First, she danced to “On The Floor” with her school team. Then she performed not only with her team, but also four other area dance teams (all taught by the same instructor).

I don’t think I could care any less about top 40 pop hits. But that all changes when I see her dance. So, thanks kiddo, for replacing any disinterest I had in the music with your awesomeness. Now I’ll have your dance moves playing in my head whenever I hear these silly songs again. Perfect!

A while back, I posted about where and how I purchased cannabis (The Kind Budtender). I never updated the blog with the unfortunate news that the dispensary closed. This was months ago. At first, I was, of course, worried about finding an equally compassionate dispensary in the Sacramento area. I then began visiting various other local dispensaries, but prices were steep, and owners were not willing to lower costs. I was disheartened, but at the same time, I couldn’t be angry. I was just grateful for the help that Marconi Med Center (now out of business) had offered me while I was a patient there.

I kept searching for a new dispensary that would at least be the most affordable. My search went online, and soon, I found the website for All About Wellness. They had plenty of discounts and lower prices all around. My first visit was great, and the staff (from the security guard to reception to the budtenders) was all friendly. Without asking them for any discount, I was able to purchase a month’s supply of medicine for a very affordable price. I left that first visit knowing these folks would be my new refill center.

I continued visiting monthly and really appreciated how attentive and helpful the staff continued to be. I felt comfortable enough to let them know about my blog. The next time I visited, the owner and others let me know they had read my story, and without me asking, the owner offered me an extremely generous discount.

So, to Phil, and his awesome family/staff at All About Wellness… from my family and I:

Thank you!

Your compassion and generosity is too freaking cool, and a GREAT help and financial relief. To those legal SB420 patients in the area, please think about making these folks your new dispensary (if it’s not already). They deserve it.

I’ve had a few medical appointments since the last update. Here’s a rundown:

Pulmonary function (lung health) test: Results show I’ve got “restrictive lung disease,” a fancy way of saying small lung capacity. This puts me at higher risk for infections like pnemonia, since my lungs do not have full coughing power (and junk can get stuck in a lung, then get infected). This also means a tougher time breathing clearly during allergy season. I got to say, though, the news was completely expected. Duh. Of course my lungs are low-powered. After all, they are housed inside of a tight, crammed, and curved rib cage. No surprises there. I’m also going to be referred to a lung specialist (so far I just took the lung exam), to discuss options for easier breathing.

Gastroenterologist (stomach/guts doctor): This lady seems like a bitch (hey, I calls em like I sees em). After describing again my eating/nausea/vomiting issues, as well as the newer right abdominal pain, she suggested a drug called Bentyl. Bentyl is a smooth muscle relaxer. Smooth muscles are things like the stomach/guts/some organs. She advised me to take it every 6 hours and see if the ab pain goes away. I gave it a three week trial and that little spot on my right side spasmed just like always. So I’m done with that drug now. Plus, I got to thinking… why would I take a stomach relaxer when I have a (somewhat) paralyzed stomach already? I only thought about that later, and I sent the doctor that question through an online patient messaging board. That was over 2 weeks ago and still no response. Like I said, she might be a bitch. I see her again in a month or so.

Spine clinic: Today I went back to the Spine Clinic for a follow-up. THIS doctor is cool. She takes her sweet time and always seems genuinely concerned. In fact, by the end of today’s appointment, her eyes were about to water. I think my real situation hit her. At one point, she asked if I was willing to consider a straightening surgery (ANOTHER spinal fusion) or if it was out of the question. I said I would listen to any option that might help.

It just so happened that the spinal surgeon was there today (he’s only there Wednesdays), so she asked him to come in and examine me. A few minutes later, he showed up and checked out my back, and also looked at my last CT scan and MRI on the computer. This wasn’t a formal appointment with him, so he did more thinking than talking, but he seemed almost confident some kind of fusion might work. I asked him, “What about working through and around all the scar tissue I must have? I’ve had 3 major spinal surgeries already…” His reply was, “Yeah, but that’s not the record.” I laughed when he said it because it was relieving. It was his way of telling me he’s operated on even more serious cases. At the same time, though, he was careful to not say too much, and he stressed it would be a definite challenge. He said he wanted to present my case before his colleagues at a conference. YES! That’s what I want, an actual team investigating and planning. I will see him again in early June for a real full-on consultation (and hopefully with a much better idea of possible surgical methods and the risks involved). He left the room saying he’d review my files and see me soon.

The lady doctor then sort of summarized my current situation. She said she knew surgery was a great risk for me, but at the same time, she knew what might happen if I don’t do anything. She also suspected (like I have for a long time) that the curvature of my back is itself a reason for my crappy stomach issues. Because of this, what if I CAN’T gain weight with a cramped and curved back/torso? I could tell it hurt her to realize the scope of the situation. This is when her eyes welled up. I knew what she knew: Do nothing now, and I will deteriorate with time and age until a surgery is inevitable. Do surgery now, and take advantage of the youth I still have for the road to recovery. But surgery means great risk.

What to do? For now, wait. Wait, and hope for the best as my case is reviewed by the surgical team. I am very glad this is happening. I’m sure once I know the details, I will move onto the next phase: fear, sadness, anger, torment.

But first comes relief. I’m finally going to be investigated by more than one monkey at a time. Phew.

About four years ago, I went to a doctor appointment that, until now, only my wife knew about. It was a visit to a urologist. The subject of the meeting was to evaluate my fertility.

My wife and I were recently married, and so naturally the idea of children came about eventually. I dreamed of having my own kids someday. But, I also tried avoiding any conversations about procreating. This is because I highly suspected I might be infertile due to the chemo/radiation treatments I had received, yet I didn’t want it to be official. I wanted to keep hope alive through denial and avoidance. But the question kept bugging me: Can I have kids?

And then I thought about what it was doing to my wife, the uncertainty. We needed to either accept bad news and move on, or realize good news and begin working to increase our family size. So I decided to take the leap and find out what I could from a doctor. A fertility doctor.

I remember the day of the appointment. I was nervous. I was mad. I was scared. I hoped for good news. It was a quick check-in at the clinic and pretty soon I was in the doctor’s room, waiting for the knock on the door. I remember I prayed silently. It was something like, “Please let there be some way… or please give me strength should it not be possible.”

KNOCK, KNOCK.

“Hi, Mr. [Chris], I’m Dr. Mynamedoesntmatter, how are you today…what brings you in?”

*Gulp* “I’m okay…” and I explained everything worked except…there’s no physical evidence (I was more candid with him, of course).

He then examined my “equipment” – embarrassing doctor moment #2,857. He told me of a condition where a male might seem infertile, but may actually be “depositing” in the bladder. One way to check for this condition is to “deposit”, and then urinate immediately after in a sterile cup. The cup is then screened for any mini-me tadpoles. He gave me a cup to take home, and I was to return in a few days with the same cup not so empty. In the few days between appointments, I kept hoping for me to be one of those guys that just deposited the wrong way.

Too soon, the day came for me to fill the cup. Within minutes, I was on my way to the same doctor’s office (“Make sure the sample is as fresh as possible!” he said). I arrived at the clinic and sat in the waiting room, holding a crumpled brown sandwich bag with a little yellow cup inside. “Think positive, Chris. You’ll be cool. Life will find a way. Cancer hasn’t taken everything.”

“Mr. Chris [R]!,” called a lady in white clothes.

Ugh. I was up and on my way towards the nurse who eventually brought me back to the actual doctor room. The doctor took way too long to knock on the door this time. He also showed up way too soon. I wasn’t ready.

“Nice to see you again, Chris. Do you have the sample this morning?”

I handed him the cup. Right away he said, “Hm, doesn’t look cloudy at all… BUT, let’s take a much closer look.”

My heart sank. It was because he said it with such certainty, and with great compassion. “Oh great, he’s being honest AND sincere…not a good sign,” I thought.

Next, he prepared the sample for viewing under a microscope. He looked in the eyepieces and explained as he was observing. He said it looked like a perfectly good sample…of urine. No tadpoles. He even let me take a look. I looked through the scope and there it was: a barren, clear yellow wasteland. Diluted apple juice. No mini-mes wriggling around. Not even dead ones. Not even misshapen little mutant ones.

My heart sank further. I went numb. “If I’m not depositing the normal way, and not the abnormal way either… then it’s over.”

He asked me to take a seat in the normal chair (not the exam table) and wheeled his stool near me so we were face to face. With a warm and supportive tone, he looked me in the eyes and began:

“You know, Chris, you have been through so much for a man your age. You are a fighter. Unfortunately, many men treated with chemotherapy often lose the ability to produce sperm. The reproductive organs tend to be highly sensitive to such types of treatment. In your case, you were treated at a very young age, while you were still very much in development. This further complicates the after effects. After discussing your history with you, reviewing your charts, blood work, and especially based on my physical exam and analysis, I do believe this is the case for you.”

No…no…say something else…It’s not true.

He continued, “The wonderful thing is you are young, and have a life ahead of you. Many families find true fulfillment in options, such as adoption. Your love for your child will be true and you will be no less a father than anyone who claims so by their genes.”

Oh god, he’s consoling me! It’s real. It cant be. This is a cruel joke. It has to be.

But it wasn’t. I couldn’t make a mini-me. Cancer was laughing at me. It was still sticking its knife in me. Even when it was no longer in my body.

I went home in a numb haze. Then anger began thawing the numbness. And soon, I was seething. Another defeat. And a cruel defeat. A harsh realization came to me: Nature would have killed me long ago. I am irrelevant in the genetic pool. I cried for the death of my never-to-be children. I cursed at the humiliation I felt. What is a man if he can’t procreate?

I was miserable. I felt inadequate. Incomplete. A deep, angry, sadness.

However, although I grieved painfully, it hardly lasted long.

It would have, I’m sure, had I been single. But I wasn’t alone. I sulked for about a day, and that was it.

Once I calmed down from the sad/bad news, I thought about how interesting and rare it was when life’s rough edges seem to smooth themselves out. In my case, I randomly met and fell in love with a sweet lady who was a single mom. Together, we slowly introduced her daughter into our relationship. Before I even realized it, I loved the little rug rat. I gained a daughter. I met her when she was 2, and back then she called me “Chris.” After a while, she chose on her own to call me by a different name. I became “Dad” and I loved it. Eventually, I was married and she became my official daughter. I love her.

Everything the doctor said was accurate. My love for my daughter is true, unbreakable, and immeasurable. I know what I have, and I intend to hold onto it. She is a reason to live, to fight, to hope, to improve, to teach, to inspire, to love, to laugh, and to keep getting back up. Being a dad can also be boring and stressful at times, but the highs are amazing. She has allowed me the gift of experiencing what has got to be one of life’s ultimate peaks of happiness. To feel pride in my daughter is to be introduced to a level of gratitude and admiration I did not know existed before fatherhood.

Before I met my daughter, I had begun to feel my body was betraying me, and my spirits were down. Then, she and her mom came into my life and allowed me to see and feel love like never before. They were the genesis of my awakening, and the shedding of my anger and silence.

Genetics, shmenetics.

What do memories know or care about blood, anyway?

What does love know of DNA?

But most importantly of all: Who does my girl know as Dad? ME. And THAT is something beautiful and magical for this man who cannot have kids.