So February 12, 2016 will a very big moment for the world. Yes, that’s right. Zoolander 2 is coming. This got me thinking. There were homeless models for the Derelict collection of 2001. Maybe it’s time to have Cancer Models in 2016. We too can be quite versatile and I believe can have more than one look. As well, I am proud to say I am an ambi-turner, possessing the ability to turn both right and left. Here are a few images that I will be submitting to Derek, Hansel and Maury Ballstein.
So here is a pretty typical day of chemo at the infusion center. On the 24th of April, I arrive the hospital around 8:00am. They first run labs (draw blood) to see what my numbers are. This is important to make sure that my body has recovered enough to take another hit. Today, my blood platelets need to be at 50,000. Otherwise everything has to be delayed 5-7 days. With an aggressive cancer you don’t want to delay.
My results come back at 30,000. Too low. My first chemo appointment starts at 10:00am. This chemo has to go through my lumbar and is a procedure. I don’t want to miss it.
I take some anti-nausea medicine through my IV, get flooded with Tylenol, and have an hourlong platelets transfusion. Then, they run the labs again and see if the numbers are up. Rather than using the port that is connected to me, they draw blood through my arm. It doesn’t work at first but they finally get it. They run it to the labs and it has somehow gone down to 20,000. This seems impossible.
They find out that my blood clotted during the blood draw, and the result didn’t come through right. So they run it through my port and take it to the labs again. It comes back 60,000. My numbers are solid. But the time is now 11:00. I missed my check-in. Now it could take 5-7 days to be seen again because the appointments are completely full.
I go around the schedulers and call up the Physicians Assistant. He says he is going to risk getting in a little trouble because he knows how important it is. He squeezes me in. He rocks!
During the lumbar treatment, I get a needle straight to my bone. The chemo is then injected into my back. After that fun time, I lay on my back for 45 minutes to avoid the classic lumbar headache. Ok, so now I am done with that… Back over to the infusion center. Oh, wait… April comes over and brings me lunch. She rocks too! Carrots, Chips, Turkey, and a gatorade. Ok… It is time for more chemo! Back to the infusion center.
I sit down at my space again, and two nurses verify that I am receiving the correct chemo. They then start the chemo, which will go for about two hours. What you see in the video is everyone else getting their treatment. The man that is playing the guitar is in remission, and comes to play when his wife is doing other things. I think he got used to being here. Fortunately he has a great voice, and it is relaxing.
For me, this is my office for the day. I have my legs up, my computer plugged in, and my headphones on. I’m gchat connected, and sending emails and building systems for True Photography. While I’m working, they check my vitals every 15 minutes, to make sure that I am not having any bad reactions. So far so good. I’m just a little beat down from the Lumbar procedure.
After the two hour dose has finished, it is time for one more round of chemo. This fifteen-minute dose is actually more concentrated than the two hour cycle, so the nurse stays closer by. Then I am good to go home. Ok… Done. I get my port de-accessed. I am out of here.
Ah… but wait, I need to get my drugs from pharmacy. But it has closed. But I will need my meds this evening. So they get on the phones, and someone re-opens the pharmacy for me. Now I am out of here. I look at the clock and it is 6:00pm. So not a bad 10 hour day. Ha.
Tomorrow, I get the day off. In a couple of days, it will be back to labs. They will need to make sure my numbers are high enough for chemo next Friday.
It is definitely no walk in the park. Pain is really something that I have just learned to accept and adapt to. It is a part of my daily life, and overcoming it is an interesting challenge.
I think after all of this, I will join MMA boxing, as I really don’t have fear of much these days.
It’s been a long time since I wrote in my blog. I have been in my hospital room ocusor 18 days. Yesterday, I received great news, that my numbers were good enough for me to go home. It is both exciting and scary.
I have amazing nurses and doctors to thank for taking such good care of me. I feel loved at the hospital. But I also feel like a person that has been in jail and is now being released into society. As much as I hate being cooped up, it becomes very familiar. Suddenly, the real world seems overwhelming. But I’ve been very eager to just smell fresh air. Even people in jail get an hour of fresh air a day.
Here is a list of what I experienced over the past 18 days:
- Shared a room for 4 days. Doesn’t sound like a big deal, but when people are sick, trust me, you don’t want to share a room or bathroom. You don’t sleep.
- Got a rash all over my chest
- Had a fever (bigger deal when you have Cancer). Judging by the x-rays, they thought it was mild pneumonia. Took antibiotics for a week.
- 5 blood transfusions
- 2 platelet transfusions
- 1 allergic reaction to the platelet transfusion. Broke out in major hives all over body. Had to take two rounds of Benadryl through my IV.
- 2 Chest x rays
- Major mouth sores where I couldn’t open my mouth for 3 days. Couldn’t eat or drink.
- Extreme lower back spasms from having Neupogen shots in my belly each day.
Yes, this all sounds very dramatic, but it has been quite the run. There is probably more that I can’t remember. There are so many “scary” things constantly taking place. It can drive you nuts if you worry about everything. The entire time, I was just thinking about not thinking too much. I would constantly remind myself to only think about the things in my control. Anything out of my control, I had to have the discipline of mind to push it out of the way.
There simply is no reason to worry about anything that is out of our control. What will happen will happen. The more stuff that we go through in a small period of time, the harder it is to stay cool and calm. But we just have too.
By refocusing my energy on what I could control, I was able to maintain my sanity. I would focus on small things, like drinking a lot of water, taking walks in the hallway, listening to classical music (thanks to Norm’s advice), and trying to eat as much as possible.
I have successfully finished round 1A, 1B, and 1C, which I just completed. 1C is the big one. You typically have to stay in your hospital room for 18-21 days straight. Next up is h2A, 2B and 2C. Then 3B. Each round takes a little over a month. So there are about four and a half intense months left. After that it is maintenance, which is no picnic, but is all outpatient. This means that if all goes well, I won’t have to stay in the hospital during treatment. So I just cleared a huge hurdle, getting through these first three rounds.
I am now at my new house that April and I are renting in University City. I love it. April has done an amazing job getting it all set up. But I do feel an adjustment period. At the hospital, if something feels a little funny, I just push a button and a nurse is there within a minute. Here at the house, I feel unplugged. I don’t have filtered air. I have to be much more cautious/paranoid. I have to watch out for sick people, flying dust, dirt that has fungus, etc. At the moment it is difficult to relax. I’m sure in a few days I will settle in.
Ultimately I am so glad to be out of the hospital. It was so great to sleep on my Tempurpedic bed. It was nice to see birds, walk on carpet, go to the refrigerator, pee in a regular toilet, and sit on a couch. Over the next twelve days, I will get to recover. Hopefully gain some strength back. My son Brandon will be in town next Thursday, and I am super happy about that.
Before I left the hospital, the doctors asked what I was most looking forward to. I said that I was very excited to garden with Brandon at my new house. The doctors immediately shut that one down, and said that gardening is out for my entire three-year program. It is too dangerous because of the fungus. I’m not going to lie. I was bummed.
I decided to make a list of all the things that I can’t do for three years. Gardening is officially on that list now, along with being at Padre games, traveling outside of San Diego, eating at restaurants, swimming in the ocean, going to movies, hugging all my friends, eating Chipotle, lifting weights, and making babies. This list will continue to grow. Then, three years from now, I am going to do everything on that list. I may even take a year off of work, and spend my time accomplishing all of these things. So get ready for some hugs!
Monday, I had a bone marrow biopsy, which I will describe in detail. It isn’t horrible but it definitely isn’t my favorite. For those that get the heebie jeebies, you may want to skip this paragraph.
To perform a bone marrow biopsy, they have you lay on your stomach. They put a long needle in your backbone, near your hip. Although the needle is intended to numb the area, it first needs to reach the bone, which takes some effort. Once the needle is in position, they take another tool that I can best describe as an apple core peeler. They kind of wind and twist their way until they reach the bone, then ask me to blow out air as they extract bone marrow fluid. This part feels like a sudden horse kick from a Clydesdale. A couple of spontaneous profanities flow instantly from my mouth.
After being relieved that it was done, they said, “just two more times.”
When it was really over, I felt slightly abused. But within a half hour or so, it was like it never happened. Just a story to write in my blog. I only describe this because I really want to make sure I always remember the journey. When you feel great, it is easy to forget. But remembering helps to keep you humble.
Last night, I checked in to the hospital for round 1C of my Chemo treatment. This round of chemo is intense. I will be in the hospital for three weeks and have an 80+ percent chance of having nasty sores in my mouth, fevers, strong temporary neurological brain spacing (forgetting the date, names, etc), a very upset stomach and other unknowns. But it is what it is. There are a million ways to look at the same thing. I can run in fear and say “I don’t want to go through this,” or fantasize in my head about all of the ‘what ifs’…. But that just won’t change anything. It will only give major anxiety.
Looking at it another way, I can choose to be excited. When I do get through this next round, It will be one major step closer to my victory. And when I go home, it will be to the house that April and I just rented near the hospital. It has a big backyard, so I am going to do a lot of reading on gardening, and will have a killer garden full of fruits and veggies. I must continue to focus on the positives for my sanity.
I decided to give this hospital thing an alternative mental spin. Let’s start over just for fun. Here it goes :)
Last night, I checked into my all-inclusive resort. It’s absolutely amazing! It is all you can eat and drink, and they bring breakfast, lunch and dinner right to your room. They really wait on you hand and foot. No matter how much you eat, you will probably lose quite a bit of weight on their special Chemo diet that you can only get here. If you need to pee, they don’t make you get up to go to the bathroom. No way… They just give you a plastic container by your bed and say “Use that, I am happy to empty it for you, just page me anytime.” All of the beds recline and incline at a push of a button.
At this all-inclusive, there is always someone checking out your body. The staff may even have you pull your pants down so they can feel your balls for a few minutes. Surprisingly, your wife will actually appreciate it, and maybe even thank them for the extra care. To top it off, get this… It’s all free. Thats right, your insurance company is happy to cover this trip for you as long as you have coverage. They even say that you can go back every couple of weeks. What a place!! Amazing!!
This Sunday, I will be going back into the hospital for another round of chemo. This is a big one, and I’m sure will be full of drama. So they are making a movie starring Brad Pitt as my lookalike actor. I hope you enjoy the movie poster, above ;) Thank you to my producer Billy for putting this together. Ha!
I have been feeling great this past week. This is the most energy that I have had since getting diagnosed. I even got to go into the office the other day to see the team. It was so great to go back and hang for a couple of hours. I wanted to wait until I was healthy enough. It is nice to know that I can recover after getting zapped.
It is still the simple things that I really appreciate. Instead of laying down, I can sit up and watch TV. I can pour myself orange juice – until recently, I needed help with that. I cooked myself a burrito the other day. Right now, I am sitting at my desk, rather than laying flat and trying to type with one finger. It has been really nice. I took all these things for granted before.
This next chemo will be one of the biggest that I will undergo throughout this process. I will be confined to my hospital room for about three weeks. The people that come in and out will need sanitary jackets and masks. They will be constantly monitoring my levels to make sure that I am ok.
There are a lot of potential side effects that come with this next dose. There is a high probability of high fevers, mouth sores, liver and kidney issues, etc… So am I nervous? Yes. Am I excited? Yes. I am excited get past these next three weeks. I am ready to fight through the challenges that I am sure to face. I know my body will once again be very weak, but I am now much more optimistic. I have seen firsthand how hard the body works to heal itself.
I also want to put a very good word out to my neighbor Bob. I have known him since I was born. At one point, he was my baseball coach. He is a great person, with love and support from his wife Diane and two sons. He just underwent a Quintuple bypass surgery. I didn’t even know it went up that high. His surgery was successful, but for all those out there who pray, I ask you to put out a prayer for my friend and neighbor for a quick and healthy recovery.
If you don’t see a blog post for a couple weeks, please know that I am fine and just fighting through the next round. I wish you all a very happy rest of the week.
Cancer is my current job title. Chemo is my best friend but can sometimes feel like it wants to kill me. Solitude is when I have uninterrupted focus on all my hopes and fears, and can’t ignore my reality.
Ultimately, I love being with people. I love chatting, sharing stories, and having company. But solitude can be an important gut check sometimes. It is the only way to really face my thoughts. I am optimistic of my future, but I am scared. I just want to live so bad. I am such a curious person and want to see what will come from my life, and from everyone else’s life. I have so much exploring to do. I have so much to see.
When I’m alone, I think about what really matters to me. I do like the person I was two months ago and before that, but I have different goals now. They have evolved, yet have been simplified. All I really care about now is health and love. I have changed.
My energy has really been great lately, and has grown exponentially over the past ten days. I regained ten of the 48 pounds I lost in the first two months. The pain in my stomach went away. My body is creating red blood cells again, which means I may not have to rely as much on blood transfusions. The transfusion I last had was really helpful, and put oxygen in my head. My liver numbers, which had been way too high to begin Chemo, have stabilized. I’m weak of course, but much better.
After a few good days, it was hard to prepare for the symptoms that come with treatment, which I resumed yesterday. I underwent a 15-minute IV bag of chemo, then a 24-hour straight Chemo bag, then a 12-hour bag, then a 20-minute bag. I was also given three Chemo pills. Since I couldn’t go any further than the IV, it gave me a lot of time to think again.
The process is like having a very bad flu, except that when you finally recover, they then say, “Great news, you’re healthy enough for the flu again!” Although the process is rough, the fact that I am strong enough for Chemo is definitely great news. And I’ve seen that my body can recover from the treatment. So when I reach a low point again, I can remember the past ten days and how strong I’ve been.
In the past, I had the classic nerd syndrome, with so much I wanted to prove to everybody. I always had a secret vision of showing up to a high school reunion, super buff, with a huge multi million dollar company. My dream was to overhear people whisper, “Wow, is that Aaron Feldman? I used to make fun of how skinny that guy was, and how he always walked around with a camera.” But I’ve realized that people don’t really care about how huge my company gets, or how outwardly successful I am. The only person I need to define success to is myself.
Of course, I want my business to continue growing and thriving. With so much love and dedication from the people who support me, I believe it will. True Photography has been such an amazing part of me, and will continue to be. We create memories that people will have forever through the generations. That isn’t a plug, rather a reminder of what inspired me to create my company in the first place. I wanted it to be my mark in the world. But along with the growth, I want to stay committed to the roots of what made us great in the first place. I really want to concentrate on enriching the lives of the clients we do have, rather than just pushing for clients that don’t yet exist. Most importantly, I want to see everyone happy.
If I were to die (not happening anytime soon), I wouldn’t want people to just think of me me as the guy that always worked. I want to close my computer more. Being forced to be off of my computer has taught me to chill out a bit. I need to pull back a little more often from my extreme, from my multitasking ways of watching TV while G-chatting and sending emails and eating simultaniously. I need to shut it all down and just be where I am, rather than in five places at once. I want to enjoy exactly what is in front of me: my amazing wife, son, friends, and family. That is my true happy.
I realize I have been blogging less frequently lately. It has been tricky to find the energy and motivation. But it is important to me that I keep sharing my thoughts.
This journey is so surreal. Mentally, I am still young. In my mind, I can go dunk a basketball. But my body instantly became 95 years old. When I sit up quickly, I am reminded how fragile I am right now.
It has been over a week and a half since my last Chemo dose. For the moment, I have much more energy than even just four days ago. To take advantage of this, I flew my ten year old son Brandon in for a last-minute visit. It was the first time I had seen him since being admitted into the hospital, when I began my treatment. I was a bit apprehensive, as he hadn’t seen me so weak physically. That worry was quickly dissolved. He was immediately happy to see me, and very understanding. He really put me at ease, and just seemed to get it.
Although I wasn’t able to play catch, or run around with him as normal, we found ways to have a great time. For example, I sat in a chair on the sidewalk with an old CD case, while he went 50 feet away. He bowled a tennis ball toward the CD case, trying to get it to land inside. Then, using a device resembling a dog throwing toy, I launched the ball back to him. We did that for a good two hours. Afterwards, he made paper airplanes and did some origami. We saw a couple movies together, and chatted about his life and mine. I actually even found the energy to go down to the Bay, and watch him fly a kite with my family. It felt nice.
Every parent believes that their kid is the most amazing ever. With that said… I really have an absolutely amazing son. He still has that innocence and wants to cuddle with dad, but at the same time, completely understands the battle I am facing. He is so accepting about my position. He has never complained or pushed me to do more. I love my life and have plenty to fight for, but I will tell you what…. I have to see what Brandon develops into as a young adult, and a working professional someday. I am so curious. What path will he choose in life?
I found a new thing to do that I love. I think that I will do this even when I am healthy. I lay on my back near a tree. Then I just watch the tree sway back and forth in the wind. I did this for a few hours the other day. I found myself remembering different chapters in my life. At first, I would start out with snapshot memories of my childhood. But as I lay there, and was opened up memories in my mind, I started filling in the blanks. I was able to recall so many details from my neighborhood, and my growing up years. It was very peaceful.
Having this Cancer has definitely forced me to slow down a lot. Don’t get me wrong, I would love to have my normally energy back, and to be more physically capable. But even after I am past this chapter in my life, I am going to take more time to sit and reflect. Thinking backwards slows down the crazy pace of daily life, and gives more meaning to this moment, right now.
Hello my friends. Several weeks ago, I remember a nurse bringing up a wheelchair to take me for radiology tests. I told her thanks, but no thanks, I am perfectly capable of walking. I won’t need a chair throughout this process. I am way too strong physically and mentally. I won’t let it come to that.
I will fully admit now that I came into this Cancer cocky, out of pure ignorance. Cancer and the treatment of Cancer is sooooooo powerful. The battle continues, and it is a big battle. I am beyond humbled.
I will lay out a few funny facts (maybe some are not so funny) of where I’m at today.
- I weigh 150 pounds. That’s almost 50 pounds of rapid weight loss. I look like a living ‘bodies’ exhibit where they show off the human bones.
- My butt, which was never all that great, is officially gone. It looks like I have a super long back with a crack at the end.
- I was sitting on the toilet seat yesterday and thought the seat was extra hard and uncomfortable. That is when I realized that my entire ass was in the seat, rather than on it.
- I saw an old lady at the Cancer treatment center with a walker. It had two tennis balls on the end. I imagined nudging her to the side and stealing it. The walker looked so comforting and supportive. I know, that isn’t such a nice thought, but I’m being honest.
- When I try to eat, no matter how hungry I am, it feels like I just ate a full meal. My stomach is growling but my brain doesn’t want it. I am trying to push through this.
- Crying, oh my….. When did I become a pregnant lady watching the movie Beaches? I cry at least once a day. I’m all out of whack. My mind and body are going through craziness every day, and I’m pumped full of strong meds. I cry out of confusion, mixed with a little “what the fu#k, how is this happening?” It does feel kind of good though. Sometimes I just let a tear drip way too far down my face. I think it adds nice drama when it goes down my nose.
- Waking up is definitely different. When I woke up this morning, I was prepared to conquer the world. Five minutes later, I was in bed, ready for my morning siesta.
- Sometimes, my voice gets so weak that I have to wait to exhale before I speak. I literally run out of voice energy.
- There is not one moment where I feel close to normal. I thought there would be breaks. But there are none. Even right now, my fingers tingle, my feet are slightly numb and my stomach is churning. In my present state, this is considered comfortable.
Again, I am not writing this to be a downer or negative. There are just moments where no matter what I want to feel, there are not-so-great thoughts that enter in. I have so much guilt inside of me. I try to use all of my positive techniques, as I understand that getting Cancer is not my fault. But the reality of Cancer is that everyone close to me also suffers.
I feel so bad for April. I never know whether it is going to be an hour at the hospital or five hours. So there is a lot of waiting. Her days are spent taking me to and from the hospital and making me food. Watching me in pain, kind of melting away. We can’t vacation, go out to dinner, have a romantic evening, go to a movie etc. It just sucks for her. I want to make her happy as a husband but simply don’t have the energy to do even the simple things. More children are out of the question for a while too, as I can’t be this sick and help raise a family.
I feel bad for my parents. They are retired, and should be enjoying the fruit of their labors. They worked for 40 years to enjoy retirement, not to take care of me. They should be traveling and just living life. But they can’t now because their son is sick. So they are stuck.
I feel bad for my sister. She is pregnant and should be taking care of herself. But I know this is a lot of added worry and stress in her life. Sometimes she comes over to visit, and I don’t feel great. So she is coming over to a guy curled up in a blanket, doing nothing. That is so difficult for her to see. We are very close, and I know this brings her sadness. I want to be able to play with her baby G, due in July, but that really won’t be possible.
I feel bad for my friends. I haven’t seen literally anyone in a couple months now. I just can’t. I don’t have the energy at all. It’s tricky enough to get the strength to write on my blog. A surprise visitor would be my nightmare. I can’t fake energy.
Ok. So that is my vent of the day. Is it normal positive me? No. Not really. Has Cancer beat me? Definitely no! Have I thrown in the towel? Big time, no way!! These are just thoughts that run through my head from time to time.
Chemo does much more to your body than make you feel fatigued and somewhat nauseous. It affects every organ. Pacreatitus, high liver count, kidneys not functioning well, low platelets, high heart rate, neutropenia…all these other things pop up. When your blood is clotting, you have to give yourself a shot in the belly twice a day. You have to watch out for this, watch out for that, etc… Thank God I have the best team working with me on my healing.
I am no longer Cancer Cocky. Rather the opposite. I now understand what it takes in order to survive this. It is a whole lot of will power, support, and prayer from all of you. Maybe even a little bit of luck. But I have faith :)
As you can see, this video is very different from the last. I am up and walking again. Over the course of the day, I walked one mile in the hallway, hung out with my family, and watched the Super Bowl – all while receiving a thirty-six hour straight treatment of Chemo. I am feeling much improved.
Like every challenge in life, this process will have major hurdles. There will be more of these really down, tough moments where there is simply no relief or recovery time. But eventually the air clears. So what is my learning lesson this week? I have to trust that when things get bad, they will get better. Today is a good day. What will tomorrow bring? Got me….
I’m very grateful to have so many amazing people in my life. Your support fills me up inside. I never realized how many people cared about me. Just know that if I am not replying to your emails or comments, I am most certainly reading them when I can. I just want to make sure that I stay focused on my goal right now beating this Cancer, and don’t get caught up for hours on the computer. But again I really appreciate it, and I love you all.
Also, many of you have offered to come see me in person. I definitely look forward to having company. Right now, though, I need to keep it really simple. I have been restricting visits to my wife, sister and brother-in-law, and my parents. With my health changing so quickly, and my neutropenic levels fluxuating everyday, it is difficult to make visiting plans. Some days I can barely get my voice out, and just want to sleep. At other moments, I am sitting up, and am fine. But in the future I would like to have more of a face to face. I just need to do it at my pace. I will be sure to let you know when I find more of that balance and energy. I miss seeing all your purdy faces ;)
When I started sharing my story, I never knew who I would reach. Turns out that there is another patient here at the hospital who is undergoing the same clinical trial as me. He is a week or two behind. He was really struggling the other day, and coincidentally, his mom tore out my article in the UT for him. Afterwards, he read this blog, and said that it had a positive effect on him even reciting certain sections of it. Which in turn had a very positive effect on me.
I just met him today in the hallway, and instantly knew that he is a good man. I know he has fear. Who wouldn’t? But he also has a big heart, and that same desire to fight this cancer and beat it. He has a very nice wife supporting him and an 11 month old. His first round of treatment didn’t work out successfully like it has for me. So they will need to do alternative methods.
So this is my request. For all of you out there that have been praying for me, I would like to ask that for today, you shift all of those prayers to Pat. For those that don’t pray, just put out positive thoughts for him. Take one minute of your day and take that time out to think of him and his family. Let’s all help fight for him and his family. Today is for you, Pat. Take all that fear and convert it into strength and faith. Have trust in what is. Think only of today and not of tomorrow. Try to find some happiness in today. Its hard to do, but it keeps you sane.
In all of our lives, we won’t find happiness alone. We need support. If you are struggling, stop giving the same old, “oh, everything’s cool, same old same old.” Find someone you can be honest with. By opening up to someone, you can turn months of sadness into just a moment. Happiness comes from each other, and having good shoulders lean on. Let’s all start asking the people we care about how they are doing. Not just a hey, how you doing? More like how is your life going? Are you happy? What can I do to be there for you?
Lets spend more time really listening to each other. Let’s figure out what the people around us need to be truly happy. That way, we can execute a plan to make sure that happiness comes to fruition as quickly as possible.
One final and less serious note. I have decided that when I do beat and survive this Cancer, I am going to eat more Cinnamon Rolls, Doritos, the mini mints that you get in the movie theatre. Reese’s Pieces. I still want to eat what’s good for me, but I will definitely be incorporating those yummy treats at least once or twice a month. I ate waaaaaaaay too healthy before, and need to indulge more often. Especially cinnamon rolls. So yummy. Right now I have to be on a very strict diet, but that is a future plan :) HA. I love you all.
This is what fighting back is like.