Wednesday, December 14, 2016. Being able to write this post is cathartic in and of itself. It is a post I have thought a lot about. And I definitely was focused on getting to the end and being able to include some of these observations. Some of these points I wrote down in a notebook at the beginning. Like the blog posts in July, August, September (0), October and November (a total of seven (7)), there were lots of notes at the beginning. Those notes, however, soon trailed off and ultimately ceased entirely. Although I did carry around my red OfficeMax notebook marked “Suss” in my back-pack for most hospital stays/trips, the urge, desire, energy and, at times frankly the state of mind, kept me from pulling out the notebook. Or adding a post to this blog.
I guess what I am trying to say, and it is likely an “obvious” observation for anyone following along, is that there were days, weeks and sometimes months in a row that I didn’t feel like writing anything. At first I felt like I was letting myself and others down. [I am not looking for sympathy here, just being candid.] After all, when the blog was created and I debated whether I was actually going to write anything, the purpose was to keep people posted on what was going on. But there was no scope of work or set number of posts to be made. And although I came sprinting out of the gates in May and June (posting something nearly every day), when the initial euphoria of this experience (and medications that keep you up at all hours) starts wearing off — as so many people said it would and I will explain below — and I really started feeling the cumulative effects of the treatments in June/July, the postings (and notes) slowed down.
The guilt of not posting then turned into questions of whether the lack of a post was because I wanted to avoid being negative or simply didn’t have something interesting to say. I also realized, and was reminded by those who unfortunately had to deal with me on a daily basis (I am a pain in the ass without cancer…), that this blog was for me. So if I did not feel like writing, there was no reason to write.
It is not a coincidence that I have felt the urge to post again in last the couple of weeks [my little notebook was filled with various ideas on blog posts at the beginning (some of which I am going to try to knock out here before “the end.”)]. After all, we are literally less than a week away and the emotions of actually being done are overwhelming. I feel like I felt at the beginning (this is effectively observation #1), when we were reminded how lucky we were to have such an unbelievable support network of friends, family, community and colleagues who made sure to lend a hand and their support, literally keeping the focus away from some of the scariest and most surreal days we personally have experienced. That support has been there non-stop and we are so blessed and forever greatful, but as you get into the grind of what has been a long eight months, things in life naturally slow down. We are so lucky that we get another chance to speed everything up (and we are so blessed that the support never let it up, it is just impossible for things to continue at the torrid pace it starts when something like this happens or if you have unfortunately been through something that brings people you care so much about together….)
Had a blood test, check-up and chemo this morning. The blood counts were great even after a four-day week of chemo last week. Chemo today was a breeze (just four more to go!!!). [After 8 months and having trouble getting the IV in over the last 6-8 weeks because it has happened so many damn times and I am running on empty, I finally took Jen’s advice and spoke up about having Judy come insert the IV (so as to avoid potentially getting pricked multiple times). It is no offense to any other nurse, all of whom are talented and really good people who dedicate their lives to patients who come to a place where no one really wants to be. But I hate needles and the stress of the whole process is enough, so why not just speak up? Seems simple. Only took me 7 plus months to actually say something. See below…]. And notwithstanding that I am incredibly swollen all over from the steroids (literally having trouble walking); have a mouth sore for the first time since May; bled through my shirt and all over the sheets last night from the continued beating I have been taking from twice daily lovenox shots (great having my mom here for many reasons, including because she is a perennial all-star in making beds); and obviously don’t feel or look like myself generally, WE ARE SO DONE with what has been a pretty grueling eight months. I am so excited to get back to everything that we missed, yet at the same time hold on tighter to so many things that we have gained.
Long way of saying that I know there were people that were concerned that the lack of posts meant something was wrong or things had gone in a bad direction. I was definitely NOT intending to worry anyone. I simply posted when it felt right and I felt like I had something meaningful to say. Looking back, I might have added some posts when it didn’t necessarily feel right, or might have been a bit negative, because that could have have been something for us (and others) to look at down the road and otherwise reflect upon. But the lack of a post says something too. I get that and always appreciated it. Bottom line: no regrets and (certainly not looking — or going! — back).
So on to the observations, which are included in no particular order. And I am fully reserving the right to use the “Edit” button on this page (which happens often after Jen reads a post in the morning and yells at me about typos). But this type of edit could be a missed observation in a few days, weeks or even years down the road (feels great typing that and even better underlining it). So onto a few observations…….
- You don’t necessarily lose your hair. I would have welcomed by Grandfather’s standard male pattern balding going away forever. Been shaving my head for 10 plus years on a daily basis and it would have nice (for me) to simply be bald. Just didn’t happen. I still have hair in all the places I never wanted it (although my eye brows are in still in tact, just thin). I lost hair in places no one would ever see. This is not a complaint nor a problem — just an observation.
- You need an advocate in this process. Some people take matters into their own hands. I am that type of person with most things. But it wasn’t the case with cancer. I had trouble speaking up. I was focused on just doing what was told and not complaining or asking questions. I joke that I still don’t know what medications to take. It is the truth. Jen puts on rubber gloves and inserts my pills into a pill box weekly. She also reminds me every day to take them. If Jen couldn’t make a check-up, she would text me questions or make sure I patched her in on cell (at first it drove me crazy). Truth is, I couldn’t handle it at the beginning and than never needed to. [Thank god for Jen. I said it before, but I would be wandering around White Plains in a hospital gown with my ass hanging out if she was not in my life. Jen takes charge of things and this was no different. She took charge the moment she walked into White Plains hospital. She was just as scared as I was. But there wasn’t time for her to screw around (in fact, I only saw her lose it once in eight months (Tuesday April 26, 2016), and she walked away from me just as quickly as she started to cry because she did not want me to see her hurting). She owned this. She owns this family; because of Jen, our kids still believe I have a little infection and I am going back to work in a few weeks because everything is fine. She was right that we didn’t need to worry them unless we needed to. She did everything for me and was my advocate every single minute of every single day. She asked the questions because I was too chicken or otherwise didn’t want to speak up. She fought when she needed to fight. She forced me to do things (like drink an incessant amount of water). She got on my case when she needed to. She let be when I needed to be alone. Whatever I needed, Jen was there (and she always is, even before she had to take on cancer). I could have started this observation by saying “You need Jen in this process,” but there is only one Jen and she is mine. And don’t get me wrong, Jen can drive me crazy and we have some fights and arguments like everyone (usually over the most ridiculous things), but you sometimes realize just how lucky you are in the worst of times. There will never be a day that I do not truly appreciate my greatest accomplishments in life — marrying Jen and having three unbelievable boys who we get to raise together.] Everyone needs an advocate. Sometimes the patient is strong enough and smart enough to be their own advocate. Anyone in this category should be commended. But no one should have to fight something like this alone, although I am sure there are many people out there who need both an advocate and an extra hand. Whether it is a mother, brother, sister, partner, wife, husband, cousin, friend — if you cannot be your own advocate, you need someone that is in the know who can ask the tough questions, push back on someone when you simply can’t (or don’t want to) and generally take charge when you just can’t do it yourself. And for those of you like me, it is OK to raise your hand and let someone help.
- You can’t “live” in a bubble. I have stacks of books about cancer and how to live a life that avoids cancer. Thanks again to many of you for sending. A few I read, others I skimmed or glanced at, and a few remain untouched. I might read some down the road. But I probably won’t. You just cannot follow or keep track of everything. If you did, I am not sure you could walk outside without appropriate breathing gear or otherwise consume any food that you did not prepare yourself. This world works because people get to make their own decisions. Some opt for extremes, while others take a more moderate view. [Please know this is not advice, just my own personal observation.] I certainly intend to change certain things. For instance, if I know something has chemicals in it that has been proven to cause cancer, I’m not going to use. No more artificial sweetener in my coffee. I am going to use an organic dry cleaner after finding out that lots of dry cleaners (including the one we have used the last 5 years), use (or until recently used) a chemical called Perchorethylene (also called tetrachoroethylene). There is a study suggesting that this chemical can cause non-hodkgins lymphoma. I do not think there is a correlation between my cancer and this chemical, but since I now know of this fact why not change to a chemical free dry cleaner? Some of these cancer books tell you never to use deodorant. I am going to use deodorant. But I am going to make a switch to one that is recommended by doctors (including one of the most famous pediatric opthamologists in the world) and does not contain aluminum. I am not going to change all that much else. I am going to continue to watch the things that I eat (and certainly avoid putting a bunch of chemicals into my body that I did not appreciate were present in so many “low” and “fat free” foods), but I am always going to enjoy something I want (though I will attempt to so in moderation). Otherwise I will not feel like I am living. After all, there are people that are complete models of health, who never put an excess calorie or anything potentially harmful in their body and otherwise exercise constantly. And when you hear about someone like this dying way too young or from something tragic, it makes no sense. Other people smoke 2 packs of cigarettes a day and live until they are 90, dying of natural causes. We all have views, but I am not sure there is a right or wrong answer. We certainly think we have a decent handle on what “healthy” actually means. [I don’t intend to start smoking by the way.] My sense is it is something you have to account for, but it can’t get in the way of living and enjoying certain things. Like the rib eye steak and martini that I am going to have on my birthday in a few weeks at Del Frisco’s. Followed by a piece of lemon cake for dessert. [I’m not a dessert fan and frankly would prefer a slice of turkey to a cookie. But I like the lemon cake and I am going to have me a piece (Lenny, stop cringing!).]
- Think outside the box. This ties into my observation about having an advocate on your side, but there is a lot more to it. Lots of people love to say they are outside the box thinkers. And if you want to be successful, thinking outside of the box is a sure fire way to get there. (Even as it relates to things you are not an “expert” on). Some people think outside the box but don’t stand up for what they believe in or otherwise allow others to tell them their ideas are non-sensical and should be discarded. And as I now understand from the most famous pediatric opthamologist in the world (who also happens to be my father-in-law), you are not thinking outside the box if you let someone dissuade you from getting your point out there in the public domain. Lenny got interviewed for Harvard Medical School by Dr. A. Stone Friedberg, who would later become his mentor. I have heard a lot about Dr. Friedberg on our walks (and even more so in a conversation tonight). Dr. Friedberg was the Chief of Cardiology at Beth Israel Hospital in Boston. In 1940, he discovered that it may be possible to treat ulcers with antibiotics. But as Lenny explained to me (and as you can read in Chapter 13 of the book by Robert W. Winters, M.D. entitled Accidental Medical Discoveries: How Tenacity and Pure Dumb Luck Changed the World), Dr. Friedberg was told he was crazy and that he should move on. He unfortunately listened. And as a result, ulcers were treated with intense cancer therapies for the next 65 years. But in 2005, the Nobel Prize was awarded to two doctors who effectively implemented what Dr. Friedberg had already discovered yet simply did not pursue. This is something Lenny never forgets and lives by since these antibiotics could have been curing ulcers since 1940 (and Dr. Friedberg could have been the recipient of the Nobel Prize). Lenny even gave a speech on this over the summer to Harvard medical colleagues (I would include the power point but after scanning it, it is effectively in a foreign language). Lenny has had views in his field that have been laughed at and mimicked, but he pushes them because he always remembers Dr. Friedberg. Turns out it was a good thing Lenny pushed some of his “thinkings” forward; people stop laughing when they realize something works and revolutionizes a field. You just have to be able to have the backbone to stand up for what you believe in, even when you get booed. (Obviously this applies in all aspects of life and it is way easier said than done). My Uncle Michael coordinated with Lenny the day I was diagnosed, and I was able to get to the best doctor within 24 hours, which was critical because every second that I wasn’t being treated counted with the nature of this cancer. I am forever grateful to Uncle Mike, Lenny and of course Dr. Roboz. And as much as Jen has been the advocate among advocates, I also have had the best pediatric ophthalmologist in the world become an oncologist in the background at first (and then the forefront after I embraced it with open arms) because he loves us and is willing to think outside the box about everything. From nutrition, to water consumption, finding me the right deodorant, identifying the “correct” articles to read about my disease, answering questions that randomly popped in our head, the list goes on and on. Lenny was never trying to be an oncologist, he was just trying to make sure that some outside the box thinking was done so that we did everything in our power, both on the margins and generally, to take on this challenge. Again, you don’t need to be an expert or doctor to think outside the box. Yet this is another place I just wasn’t willing to go. And just like with Jen, I am one lucky guy to have a Lenny in my corner. If you aren’t able to think outside the box, finding someone who can and is willing to do so is a beautiful thing.
- You may not lose weight during the course of chemo. For someone who has worked out for many years and was always conscious about weight, to hear that you should eat whatever you want because you are going to lose significant weight (and we have all seen pictures of people that have lost a tremendous amount of weight during chemo), can be a magical thing. I took advantage at the beginning and ultimately felt disgusting. So I changed my eating habits. At first, I went from one extreme to the other (cutting out just about everything). The only time I lost significant weight was when we couldn’t control my nausea in the summer; this lasted a very brief time (I am still on a significant amount of medication for nausea and throw up every so often). But for the most part, my weight has been the exactly the same as it always has been. [That said, and notwithstanding all the weights I bought for my basement, I can count on the number of hands how many times I did anything other than walk outside or on my treadmill (which I did a good amount of). So lots of lost muscle and time in the gym to make up for — which is a great problem to have.] Am I the first person in the history of chemo not to lose weight? Who knows. But I have been on and off steroids (which are a huge part of the treatment protocol) for the last eight months, and that causes weight gain (and swelling). The observation here is a little deeper than suggesting you may not lose weight during chemo. We are all different and there is no set way for any person to respond to chemo treatment. I look at lots people on the third floor of NY Presbyterian Hospital every day and recognize that the “side effects” are different for everyone. And while you never really get comfortable with any of it, you do realize that you are fighting something bigger and losing sight of the target forces you (at times) to take your eye off the ball.
- It is OK to cry and be deep. I definitely have a different perspective on things at the moment and for me, it is a function of the last eight months and having my life flash in front of my eyes. Definitely did not ask for this, wouldn’t do it again (unless I had to), and know we aren’t done (three years of maintenance treatment await and we fully understand that this is all about making sure this does not come back; we also get that if you keep thinking about whether this is going to come back, you can’t live). But the truth is, you don’t have to get cancer to be able to put things in perspective more regularly. I am frankly jealous of many people who are able to accomplish that without having to go through something like this. I always talked about the proper perspective, but the reality for me was that it took a tough moment or real gut check to take the time to think through what that perspective actually is. It is now different, at least at the moment, and I feel like I have my head around the right perspective (for me) on a daily basis. When I lose my cool or get bothered by something these days, I actually think about it and try to pause. (This is not to say I am no longer a hothead or over analyze things and comments for no reason). I did, however, let myself cry more in the last eight months than I did in 38 years, and I suddenly have no problem getting into some deep thoughts with anyone who will listen. With a complete win in sight and only four days of intense bonus chemo left (together with the tremendous and humbling amount of support that allowed me and my family to focus on one thing and one thing only), it is easy for me to say that as much as I want this to end (and have wanted it to end the entire time), I wouldn’t trade the experience. But I think the real observation, for everyone and not just people battling cancer, is taking a time-out or a step back and putting things in context is never a bad thing. And it’s OK to let yourself cry and get lost in a thought that other people may not understand.
- The list goes on. I reserved my rights above and I have a good feeling that this is an “open” post with more to come in time.