A Pirate Looks at Cancer

As we pull back into home port I’d like to thank all of you for sharing this voyage with me. 6 months is a long time for our lives to be disrupted, though now at the tail end it seems like it went by quickly. 6 months ago I was introduced to a new normal, one where every day I would think of Cancer, where all the concerns I thought were important just weeks before suddenly paled in comparison to the new reality. Through 6 cycles of chemotherapy we’ve had great days of fair winds and some other days where you all helped me bail water just to keep things afloat. For 3 weeks now since the end of my 6th cycle I’ve been waiting to see what the course ahead would look like.

On Tuesday I sat down with my oncologist, Dr. Norris, and went over the results from the PET scan I had last week. The scan showed no sign of Cancer in my femur or anywhere else in my body. He considers me in full remission and says there is very little chance of the Cancer coming back.

Being the thorough types we are, Crystal and I pushed for greater detail, what does “remission” and “very little chance” mean exactly? He shifted uncomfortably in his chair and explained further (He was obviously expecting a more joyful reaction, not the stone faced suspicion he was getting). Well it means that there was metabolic activity in my femur, but this is to be expected since my bone needs to heal from the intrusion of the Lymphoma. The healing process takes time and will show activity in the same way Cancer showed activity. It is hard to tell at this point whether every single Cancer cell was killed. After 6 cycles it is very unlikely any survived, but impossible to know. The healing process is also very hard to predict because there are so few cases of this type of cancer in someone my age. The only test now is time, and since this is such an aggressive cancer it won’t take long. I will be geographically restricted and do PET scans every 3 months for the next year. If any cells survived, they will show themselves in that time. If after a year I am still clean, we will do more scans every 6 months for another year just to be sure. If after 2 years I am still cancer free, then we will know no cells survived and can call it a full cure.

This is the best news we can get at this point.

We continued to pelt him with questions…

Does this mean I can get my port removed? (yes)
How strict exactly is this “geographical restriction”? (err… negotiable?)
How compromised is my femur structurally? (not sure exactly, need to talk to a bone doc)
If it does come back what happens then? (We have options, but they get more toxic and damaging, let’s cross that road if it comes)
Does all this mean I can’t dive or jump soon? (…please stop asking that)

We ran out of questions and left, feeling less satisfied than we had hoped we would. Yes we got the best answer possible at this time, but the uniqueness of the case and the nature of Cancer itself means that “cure” is not a word that comes quickly or without an asterisk.

Honestly we were (and are) a bit shell shocked. Being heightened for so long makes it hard to accept the good news and feel better about it. But as we went home and clinked our glasses to celebrate we began to accept that this really is the end of a chapter. 6 months ago we struggled to wrap our heads around the fact that I really did have cancer and that all the things that you read about and think happens to other people is really going to happen to us. Now we must struggle to accept that it is very likely over. That the infusion center visits are done, that my hair is growing back, that long term plans that just seemed like a bad idea can now be made.

On Wednesday I went in for surgery to have my port removed. I had gone ahead and scheduled the removal surgery directly with the Interventional Radiology department a month ago. Oncology wasn’t too happy about that but if I had waited until the green light from them I would have that damn thing in my chest for another month for no good reason. Lesson 1 of healthcare systems: No-one cares about your situation like you do, kick in doors until you get what you want.

The surgery went well and I spent most of yesterday sleeping off the sedatives. Now I have a fun souvenir in a jar…

I had blood work done before the surgery and my numbers came back much better than we expected. My hemoglobin and white blood cell counts are back within healthy numbers and for that matter all my numbers are back in the healthy human range. This is awesome as most of the sources we looked at said that it could take 6 months for the body to recover to normal. Though that also means my being out of breath while swimming in the last couple weeks is from being weak sauce, not Cancer. Time to get motivated and back in shape as soon these holes in my neck heal up.

In other news Crystal and I were extremely happy to have Hayley, Nolan, Big Kahuna, and especially little Paige come visit last weekend.

It managed to be the only weekend of the year to rain most of the time but in true San Diego fashion it still managed to be pretty nice weather for February.

It was wonderful to see them all and Paige never ceases to amaze us as she grows and changes.

So now that my hardware is out and the doctors have cleared me I can look to the course ahead. I still need to meet with the ortho oncologist to discuss my bone healing process and that will dictate when I can ease back into different activity levels like running and impact sports and eventually diving and skydiving again.

Also great timing because I’m set to start traveling again, should be in Korea in the next month or so, then Spain, Poland, and Belgium in the next 5 months. And further out and more excitingly I should have no issues getting cleared for my next set of orders which came in two weeks ago. I’m lucky enough to stay in San Diego for another couple years and get back to an EOD Mobile Unit this fall. I was worried I would have to give up the orders if I couldn’t get cleared for operational duty. (Don’t worry, I will be deploying again but only as a staff position in “safe locations”, my days of running around the desert with guns are over). The EOD community has been more than supportive through this whole process. It would have been more than reasonable for them to recommend I get out (the doctors were talking medical retirement) and give this position to someone they can count on being able to perform. I’m very grateful for the chance to continue my career and can’t wait to focus on the mission again.

Again I appreciate the love and support all of my friends and family have shown me over the last 6 months. When I got the phone call in my office on Sept 11th letting me know that it was confirmed I had Cancer, I put the phone down with shaking hands and felt an immense weight settle on my shoulders. Facing something like this is terrifying and overwhelming, but with every person I talked to, the support was amazing and the weight a little less. Starting with my beautiful wife who I went home to that day desperate and afraid, she has shared my pain and multiplied my joy. She shouldered more than her share of stress all the while successfully earning her California Nursing License. She is my hero. We turned to our family who’s outpouring of love was more than I could imagine. Hayley taught us that we didn’t need to do this ourselves and how to reach out to those who care about us. Star taught us just how much people wanted to show their support and I’m not exaggerating when I say that every time I saw someone wearing a Rough Seas bracelet, I would get choked up. It means so much to me that while I had no choice but to think of my Cancer every day, others were willing to do the same. My parents were there for me every step of the way, with Big Kahuna taking the bald ride with me and my Mom never getting tired of listening and reassuring me in a way only a mother knows how. Thank you guys so much.

I’ve had so many people go out of their way for me in the last 6 months that I can’t even begin to name everyone, but know that the collective support of all your hands has carried me to where I am now. Even if most of my friends may first have yelled across crowded rooms that “your haircut looks terrible” or that “you look awful, like you have Cancer or something”, their ghost white faces once I tell them my situation have been priceless, and then nothing short of the shirts off their backs have been offered. I hope someday I can repay the kindness that has been shown to me.

Before this adventure I was more of an introvert and it’s been tough having my personal life on display. From having a crowd of doctors studying very detailed scans of my body and discussing my fate like I’m a lab rat and not sitting in front of them to getting used to writing this blog and feeling like a 14 year old girl on Twitter describing her sandwich, it has been difficult. I’m looking forward to pulling back into my shell a little bit and letting someone else get all the attention, hopefully for something good. Did I mention Crystal is a licensed Registered Nurse? or have you guys heard Paige say “dog” yet? (look at the baby… look at the baby…)

Thanks for joining me on the journey, and for putting up with corny Pirate jokes.

Dismissed

 Did everyone see that? Because I will NOT be doing it again…
-Captain Jack Sparrow

A week and a half into the 6th cycle of chemo now, and this one has been especially difficult. One of the most challenging parts of the whole chemotherapy experience I feel is the repetitive nature of going through the stages of each cycle. You become incredibly aware of how your body feels, you are expected to examine, document, and medicate every discomfort, making you focus on each pang of nausea, each vertigo spell, and all of the various pains. At this point I can draw a map of each cycle and what flavor of awful I will more than likely feel each day. Knowing what is coming next is helpful for medication reasons, but it’s also just damn depressing. Especially since the last sensation I feel at the end of each cycle is awesomeness, my body just beaming and my mind is clear and I really understand and cherish the contrast between feeling good and not. Then I have to calmly walk into the street and stand there with my hands behind my back as the mack truck approaches to obliterate me again. It really becomes a mental game of taking each day at a time and convincing yourself it will get better but knowing it will be worse before it’s better.

Because of this the infusion center has become associated with the start of all those negative feelings. I dread that center. As the day approaches I can’t help but get anxious, I have to take Ativan the day before and the morning of to control it or else my heart races and I can’t sit still. Then when I get to the hospital and the doors slide open the unique smell of cleaning solution and air conditioning hits me and my body is like the dog who realizes that he wasn’t going to the dog park but the vet instead and feels betrayed and begs you to turn around. (Side note: Have I mentioned chemo causes your sense of smell to become super powered? I’m side by side with Kona now, raising my nose up at the slightest wind and sniffing at it. The smell of rubbing alcohol to me is now linked to someone about to stab my chest and pump me full of feel like crap juice, I get instant power-nausea at the slightest hint of it. I have to cover my face at the clinic when they prepare the site of the port or when Crystal uses an alcohol pad before she gives me my filgrastim shot. Even Crystal using nail polish remover in the same room is enough to make me jump.)

I had a lingering cold for the week or so before the session on the 14th so went into it a bit weaker than I normally do. Sitting in the waiting room waiting for the results of the blood test I got to enjoy lots of preemptive nausea and what I now know is an official clinical symptom, a “feeling of impending doom”. My blood numbers were OK so we went ahead with the infusion, which was uneventful other than the fun looks I got from my chair neighbors as a result of my awesome hat.

So that was the last of my chemo sessions, and hopefully the end of my treatments altogether. It has been a bit hard to wrap my head around that since I’ve been feeling so awful for the last week and now I’m deep in the bone pain stage which is giving me a hearty last hurrah. People have been congratulating me and I understand and appreciate the good intentions but I think I will hold off on celebrating until after the three weeks since that will be the true end of the cycle and hopefully the beginning of feeling better permanently. We’ll call the end of chemo on the 4th of Feb, though I will admit knowing there are no more mack trucks of the chemo flavor heading my way is wonderful.

We sat down with my oncologist before the session to discuss where we go from here. The plan is to allow my body time after this cycle to normalize out a bit before we do another PET scan. We scheduled it for the last week of February, that gives me the three weeks of the cycle plus three more weeks to recover a little more. We will sit down with him the first week of March to discuss the results. Ideally we will see normal metabolic activity in my femur and will officially move on to the recovery stage. That basically consists of slowly beginning to work back into my normal routine, he said I can start exercising after the three weeks of the normal cycle as I feel stronger but to take it slow, I plan on starting with swimming and cycling as these are easy to start small and add a little as I feel stronger. I will hopefully start being able to spend more time at the office. The timing of this was as good as it could have been for work, the end of the year was slow for us and we went into holiday stand down mode for a month around Christmas but we are now in full swing again. It is hard for me to leave after a few hours when I have more I’d like to accomplish and hate leaving what should be my work for others to do. This week my boss had to order me out of the office at lunch on Tuesday and then added to not even come in Wednesday. I’ve got people looking out for me so that’s nice but I don’t like feeling like I don’t carry my weight. Frustrating but I’m sure I’ll be able to contribute more soon.

For the longer range if we see no activity on this scan the chances of it coming back are very small, but I will do PET scans every 6 months for the next two years to watch for any recurrence. After that I won’t need routine scans and just need to get checked out if I feel anything different, especially in my lymph nodes. I’ve read that the recovery process is pretty slow, that the effects of the chemo will wear off over the next 6 months or so. It can take 2-3 months for hair to start growing normal again so I think I’ll keep the shaved head thing going until my hair is thicker, no reason to grow out 10 long hairs at this point. My beard will probably be a pretty good indicator though shaving only once a week has been nice.

In other news Crystal and I are really enjoying living in our new place. Having a house with plenty of room really changes things, we buy multiple boxes of cereal at a time, we have had lots of fun outfitting our guest room with furniture, and having a backyard has totally changed the way we play with the dogs and relax. We are setting up a nice outside space with a bench and chairs and even a fire pit, next project is to string some lights. We spend our mornings sipping coffee on the bench and evenings drinking a beer with the fire pit to keep us warm from the harsh 60 degree San Diego winter nights. My grill has come out of its three year hibernation and I realize now how much I missed being able to quickly grill salmon and kebabs and veggie packets. It really is much easier to eat healthy with a grill. The dogs are getting used to the idea of being able to go outside whenever they want and Boomer is even learning to appreciate the finer joy of chasing tennis balls, “real dog” kind of stuff here. Very fun, moving was a pain but definitely the right choice.

Crystal has taken her licensing exam and is now just waiting on her school and the state board to get it together to grant the license. Frustrating to be in a holding pattern where she really can’t apply for a lot of positions without the license and she’s running out of extra certifications to get so is kind of stuck. Good time to dive back into Yoga and I appreciate the company but I know she hates being idle as much as I do. So we’ve been using the extra time to do some gardening! Good wholesome suburban couple activity. We’ve planted some strawberries, tomatoes, peppers, herbs, and yesterday we even got a nice sized lime tree. We’ve loved having an orange tree and having food to pick in our backyard so we are trying to grow more things we can eat. The limes are for the beer though, lets be honest.

Thanks for all the support and I will be sure to update everyone once I get the scan and we know more!

Dave

Everything will be OK in the end,
If it’s not OK,
It’s not the end
-John Lennon

I know my posts are getting less frequent, the day to day chemo is really a steady state of boring and we have been quite busy for the last few weeks. We are getting close to the end of the treatments so hopefully I can start to get more details in as we get into the more interesting part of final scans and recovery.

I had my fifth session of chemo on Dec 24th (Yay Xmas Eve!). Turns out not a bad day to get an infusion as most everyone else moved their sessions so the center was less than filled. We were in and out in record time. The infusion itself was uneventful, though I now realize just how out of it I am during these sessions since Cousin Bobby came to visit for a couple hours during his lunch break and while I remember the fact that he came, I have no recollection of the conversations he now assures me we had. Though who could forget this sweater?

As usual once getting home I managed to eat something small and then go to sleep for around 15 hours. The next day we had to get on a flight up to Sonoma to see little Paige so I wanted to feel as good as I could for that adventure. In all I feel pretty alright for it being my fifth cycle, though the tiredness is ever present. Today for instance I needed to stay at work for longer than usual and by 1 o’clock I could feel the pounding of my pulse and my head swimming from trying to stay focused for that many hours. I really do have to accept that I have a finite amount of energy to spend per day, and I notice that amount getting smaller as the sessions continue.

Now to more uplifting events, we celebrated Ship’s Surgeon Crystal’s graduation from Nursing School on the 12th. It was a great ceremony and special thanks to Aunt Deneece for coming down to share that with us. I’m incredibly proud of her for her transition from the military to civilian world and getting a second degree while she’s at it. She’s deep in studying for the Nursing license exam she will take on the 7th so pretty soon she will be a fully licensed Registered Nurse. She has made such an impact on Kaiser during her 6 month externship there that they invited us to their holiday party where the ER managers told us they consider Crystal part of the team and can’t wait for her to be licensed and to email them as soon as she is so they can have first crack at hiring her. Go, baby, Go!

We also moved in the last two weeks. Living downtown was lots of fun for three years and great for Crystal while I was deployed but it was time we found a yard for the dogs and a bit more space. We managed to find a nice place with a big deck and grass for the boys and even a garage for me. Moving is always twice as hard as you imagine it will be but now that we are here it is clear it was the right choice. Maybe we will finish unpacking sometime soon and get some pictures on the walls…

Then to really enjoy the season we got to spend some time with our beautiful little niece Paige. Flying the day after chemo is not the ideal plan but after a good sleep and some good drugs it was OK, and having this guy to keep me company was just icing…

Playing with Paige for Christmas made any discomfort more than worth it. Suzanne and John were such wonderful hosts, to the point of cancer specific shopping in preparation for us coming up and promising only bland potatoes for everyone if that was all I could stomach. Luckily that wasn’t necessary but I am touched by how caring and supportive they are of both Crystal and I. It is astonishing how quickly Paige grows and just weeks after seeing her last struggling to balance on her little feet she now confidently tromps around the house like it’s nothing. You can really see the wheels turning behind her eyes and her babbles are definitely communicating if you pay attention. Her wide grin is still the same, however, and here’s hoping it always will be. We had so much fun with the whole Sonoma crew over the weekend and it was perfect timing to get graduated, moved, chemoed, and then out of town for a few days to relax and enjoy good company.

Looking forward, my final chemo session is scheduled for the 14th of Jan. I should be doing a final PET scan two weeks after that and hopefully given the green light to officially begin the recovery phase of this mission. Not sure what that exactly entails yet but I’m hoping it involves surfing.

Happy Holidays to everyone and I’m hoping you’ve gotten to enjoy as many wonderful moments as I have.

Health is the Greatest Gift,
Contentment the Greatest Wealth,
Faithfulness the best Relationship.
-Siddhartha

The winds have been steady and the seas favorable as we glide forward into Cycle 2. The infusion on Wednesday seemed quick and painless compared to the first cycle. I did not have any reaction to the Rituxan like I experienced the first time, not only making it more pleasant, but also much faster without the hour long break it required. Not having the port implantation was a bonus and being free of pain meds allowed my head to be clear. My knee pain is all but gone and while I still get tinges of pain when going up stairs or bending the knee I think that is from months of limping and babying it instead of the tumor so while I expect I will need some physical therapy when this is over I think the majority of it is behind me. I’m only taking minor nausea medicine regularly so as a whole I feel great, still a little run down but definitely better than I expected to feel over 3 weeks into the process. Crystal gave a much more informed and detailed account of the infusion so I will leave it at that.

Friday I spent the day with my good friend Ken Lee, a Master Chief and the senior enlisted of my teams for both of my Afghan deployments. We spent two years together on our teams and over a combined year in Afghanistan, rarely more than a few feet from each other as we sat back to back at our desks in the dusty tent rustling from the sand storms. What I lacked in experience he had 20 years of, with 6 deployments to Iraq and Afghanistan, he was the tome of knowledge I referenced when we had to make decisions of how to best develop our people or how to form the 7 teams we would spread across the country. What he lacked in tact or forethought I was there to develop relationships or see the bigger picture and ensure that our vision and efforts were in line with those of the war around us. He is a great ying to my yang and now he and his wife Michelle are two of Crystal and I’s closest friends. We have both moved on to different commands but still try to get lunch every Wednesday to catch up and share our experiences as we both greatly value the advice of the other.

So Friday I got lunch with Michelle and then once Ken was off work headed over to see how his projects were coming along. Much to Crystal’s worry Ken also happens to be a classic car nut, he is currently under weigh with four projects, a 55 Chevy truck that is 85% complete, a 68 Camaro that is a hulk under a tarp on a trailer in front of his house, a 51 Mercury that is waiting for the other two to be finished, and a 69 Mustang that is his son’s but he works on as well. Over the last three years I’ve had to listen to countless hours of his excited explaining of the restoration and modifications he was making and have (again much to Crystal’s chagrin) started to get into it as well. Now Ken spends tons of time in his garage and Crystal is very concerned that I too will disappear under a rusting car hulk for hours on end instead of spending that time with her. I think there is a happy medium to be struck and maybe using my recent diagnosis and a bit of leverage I have secured permission that ONCE we have a garage and don’t live in a condo and ONCE I am cancer free, I can start and create what has become my own dream car, a 69 Mustang coupe, dark blue with white stripes, looking mostly classic but upgraded with modern engineering. I love the idea of tearing apart an old classic, fixing all the rust, pounding out the dents, and redoing it with care and attention. Taking classic muscle car styling and solid American iron and learning how to integrate the last 45 years of engineering progress into its shell, all while knowing every inch of the car. So there’s my 1 year goal, to start something like this…

Spending the day with Ken was great for taking my mind off the chemo and it got me out of the house with Crystal working in the ER until 8 that night. Too fun.

Saturday Crystal shaved my head since while it is much thinner, it is growing still and doesn’t feel great against my hats. She did a wonderful job and now I am squeaky smooth again.

Today was a big day as well. Cousin Bobby is a huge ATL Falcons fan and with the game in London starting at 0630 PST he was over good and early to watch it, so what’s the best way to improve an ass early Sunday morning? Well there happens to be a donut shop here downtown that sells out of donuts, everyday, within three hours of opening. We have never bothered with it before since the line wraps around the corner of the block before it even opens. However, we found we could order a dozen the night before for pickup to avoid the lines and with a day like this, why not? Bacon Maple bar, Raspberry Cheesecake, Red Velvet, ButterBeer (yes Harry Potter reference), Creme Brulee, that is just half of the donut amazing-ness we picked up this morning. Now I’m not meaning to flick Crystal off in the picture but I was pretty excited about the donuts… and it was damn early in the morning.

Luckily Crystal has a big test tomorrow so while she spent the day studying, Bobby and I had twelve hours of football to enjoy. Crystal can usually handle two games, but 4 back to back (with a World Series game thrown in) is WAY too much. Boomer, however, was super stoked with the company.

My command is back from the East Coast so I’ll be in at work this week, though Crystal has cautioned me that my white cell numbers are lower now then they were Cycle 1 so I need to be more careful about not over exerting myself or exposing myself to sickness. I am excited to see my office mates and hear how the exercise went. Other than that, looking forward to an easy week and starting to look forward to the upcoming wedding up in Sonoma!

Lots of off topic and random ramblings but I feel pretty damn good so these are the updates I have! Thanks for the comments and love, Crystal and I are always stoked to see them!

Count your age by friends, not years.
Count your life by smiles, not tears.
-John Lennon