Happy Birthday - 30 Days Later

Happy Birthday to Me...30 days later

By...Erik Schuman

Our birthday is the day we were given life on this planet. For me that is April 20. I addressed this in a previous entry.

While April 20 is the day my life began, May 20 is the day I was one of the few people fortunate enough to be given a second chance at life. It was 366 days ago that my mother, brother and sister joined me in the doctor’s office to be told the results of a PT Scan I had done four days earlier after my third round of chemotherapy.

My doctor said he hoped 100% of the cancer was gone. I was hoping for at least 60% and would have been happy with that and I didn’t expect for much more than that since the back of my right leg was still tender and I had almost no feeling in it. I later found out that was scar tissue, something I still have and might have for the rest of my life.

When Dr. Minh Nguyen of Keck USC Medicine told us the scan showed NO CANCER, meaning he was right and it was 100% gone, I remember being too stunned to react until my family started celebrating. I got somewhat emotional and didn’t really know how to react. I wanted to celebrate but I ended up getting misty-eyed for the first time since June 11, 2012 when my Los Angeles Kings won the Stanley Cup for the first time ever – something I was sure I would never see in my lifetime. It meant I was one of the lucky ones to beat cancer. I still had to undergo three more chemo treatments but that was preventive maintenance and not to eradicate it. If I was going to die it wouldn’t be from cancer and what a massive load off my mind that was. When you are told you have cancer at least a million thoughts go through your head within seconds. Of those million at least 999,999 are bad.

I am now a proud member of a club no one wants to be in but one where we happily accept new members with open arms because we all know what everyone has overcome.

I look back on what I called my “Nightmare Journey From Hell” and shake my head over what it actually entailed. I also realize how lucky I am to have had it in 2019 and not 2020. The thought of Floor 8West at Hoag Hospital having patients there right now with all that is going on is truly sad.

The ONLY good thing to come from having cancer was the chance to re-connect with longtime friends I had fallen out of favor with. I would love to say it was just something that happened but that would be a lie. It happened because I was a loud-mouth pompous ass jerk to them, and they got tired of dealing with all of the bullshit I unnecessarily tossed their way. I can’t blame them. I would have done the same thing they did. To say I am grateful to have them back in my life would be an understatement. Hopefully it can stay that way and I am trying to make sure I don’t make the same mistakes again. I will leave it at that.

When I was first diagnosed I reached out to practically everyone I knew. Family. Friends. Enemies. Everyone. I was BLOWN AWAY but all of the tremendous outpouring of support I received. I got numerous calls and texts with the latter preferred since I turned off the phone’s ringer while there. I had a friend visit me the first visit but not after that since I was groggy and bedridden almost the entire time there. But that didn’t stop my parents from visiting practically every day. There are no words to express what I felt when they showed up. The entire time there I felt like a caged animal with the cage being my bed. Having them there meant so much because it was an escape back to normality. I slept some while they were there, as did my father, but just having anyone there meant so much. My brother and his family were just as awesome with numerous calls and texts. My sister lives 280 miles away yet she came out once to see me. She also did the one thing I will never forget. After my first visit I said how much pain I was in. She said she wished she could take the pain and give it to herself. I told her f I had that option I would never do it because no one should have to endure what I was. But just to say that blew me away and left me saying:

What was my “Journey” really like? Glad you asked.

Let’s say my doctor arranged for me to go in on a Monday. Hoag was told about this ahead of time, but I could only be admitted if there were beds available on 8West since that is the floor all cancer patients go. I would get a call around 8 am saying they had a bed open and to get there as soon as I could. I knew the call was coming so I was all prepared to go once it came. The first visit I didn’t bring anything for the nurses. The second one my parents brought something on the last day. Visits 3-6 saw me bring 2 dozen doughnuts with me to deliver at the nurse’s station when I arrived. They were so expected that on my fifth visit when I dropped them off one of the nurses gleefully said, “I saw your name on the patient list and I said ‘Yes, we get doughnuts today’” something that gave the rest of the nurses in the area a hearty laugh. Me too. As hard as they all work, I was glad to do a very little part in showing them my appreciation.

I also learned just how much of a say the nurses have in what room a patient gets. My last 4 visits I got a corner room with a long couch, table and chair as well as a view from 3 windows. Room 10 was the best room and I got it almost every time which made my parents happy since they enjoyed the view of the Pacific Ocean. Me? I rarely left my bed. The only time I did was to take a walk or go to the bathroom. This is the view from Room 10. Not bad, huh!

If I checked in on a Monday morning I would head to my “home” until Saturday morning. If I got there in time for lunch, I ate one. I made sure to eat a big dinner knowing it was the last time I would be hungry or want to eat for the duration of my visit.

Sometime in the afternoon I would have two ladies, usually Tara and Michelle, enter my room and this is where the “fun” began. They would spend the next 30-ish minutes inserting a “PICC Line” in my arm. This allowed the IV tubes access to my arm. They would put on a Hazmat-like suit, cover my body in protective material and then slightly cut open my arm to place the line in it. It hurt. A lot. But it had to be done and once it was done, I was now ready for the treatment to start. The first 3 visits the line went into my right arm then the left for the last 3. Having it in my left worked best because the IV machine was on that side as was the bathroom so going was easier. I had to go through FOUR bags of Chemo with each one lasting 24-hours. The first one usually started around 10 pm. Because I had the line in my arm the entire time wearing a shirt was something I could not do. Any time I was in my room all I could wear was my underwear and a pair of shorts, if I so desired. The only time I wore shorts was when I left the room for a walk.

I look back and laugh at my first visit. I didn’t know what to expect. I brought my laptop so I could scan the internet and check some emails and more. I brought a lot of shirts, too. I came home with almost a full bag of unused clothes. The last 5 visits I brought 2 shirts, a few pairs of underwear and shorts and that was it. I didn’t bring socks because they gave me no-slip socks when there. I also didn’t bring my laptop since I never used it the first time.

Eating? Nope! Dietary would call up to my room to see what I wanted to eat. My first visit I had a big breakfast delivered for my first morning there. I ate almost none of it. I quickly learned that once the first bag of Chemo was stuck in my arm food was nothing I wanted. I would get food my parents could take home. They would bring home bananas, peanut butter, apple juice and a ton of Lorna Doone cookies. I got all of this so people would think I was eating. I wasn’t. A few times when I knew Dad was coming around lunch time I would order some fish and veggies. For him. He would eat it but in getting I the nurses and the floor dietician would think I did. I ate very little because I wasn’t hungry. I also flat out lied to the burses, too. They would ask if I pooped. I knew they wanted to hear I did so I told them I did. Between the medication I was taking and the fact the foods I ate were light I never pooped once during any of my 6 visits. I knew they wanted to hear I did so every other day I told them I did so I would not get a laxative for fear it would make me poop and I would not be able to make it to the bathroom on time. If I checked in on a Monday I usually did not poop until Tuesday or Wednesday. Of the following week meaning about 9-10 days without one. Seriously.

I pride myself on being one of the most low-maintenance people out there. I was just this while there. The only time I would beep the nurses is when my machine beeped – beeping from an air bubble in the line. It got to be annoying how many times I had to do it but I had no choice. Because I was so low-maintenance I got away with things few other patients did. When I got my chemo bag changed around 10:00/10:30P I got my vitals taken as well. During the day I got them taken roughly every 4-ish hours. At night because I left them alone my nurse would have my vitals taken when the bag was changed then let me sleep until about 6:30A when it had to be done since a shift change took place at 7:00. The night nurses had 4 patients to take care of but having me was the same as having 3 since I never bothered them unless the machine beeped. I was grateful for this. As grateful as they were to have one less patient to worry about. ALL of the nurses were great, but I bonded the most with one of the night ones, Melanie. Even though I was nauseous and tired we would talk about food and great places to eat. Because I brought food for the morning crew she never got to enjoy any because it was gone. Until I made sure to save some for the night crew and her. She may be tall and in shape but that woman can eat chocolate chip cookies with the nest of them. She also likes Hawaiian Pizza (Pineapple and Ham/Canadian Bacon) – same as me. When you are cooped up in a room for 5 days you look for any normalcy you can and talking food with her was that chance.

For my first 3 visits sometime in the morning part of my second ay there I was wheeled down to the main floor for a “Lumbar Spinal Injection.” This required laying on my stomach, having my back area numbed then a shot injected into my back. Yes – it hurt. A lot. The side effects after were even worse. I would have headaches the rest of my visit and laying on my back hurt. I couldn’t lay on my right side because that is where the cancer was, so you see my issues. The last 3 visits I did not get this which is why the last 3 were the best 3.

Since I could not take a shower on about the middle day of my stay, I would clean up some. I would take a soapy cloth and clean up. It felt great to be as clean as I could. I didn’t sweat much since I was always cold. I had the heat cranked up some because the chemo made my body colder as well as the fact I only wore underwear.

The first 3 visits I would have people coming into the room all of the time. They meant well but I needed sleep and that was impossible to do with them coming in every 60-90 minutes. I would have people come in just to ask if there was anything they could get me. I would always thank them for coming but say I was fine. Finally, on the fourth visit I put a sign on the door asking people NOT to entre if all they were going to do is ask what I needed saying I needed sleep. This worked wonders and the visitors to my room decreased about 90%.

On my 3^rd visit I developed a blood clot in my right leg from a lack of exercise. The last three visits I made sure that would never happen again. I was told 21 laps around the nurse’s station was a mile. So I did 22 laps every day. I felt like crap. I use a crutch under my left arm and the IV machine on my right arm, but I made it.

When the day came for me to go home the PICC line had to be removed. That took about 10 minutes but I had to wait 45 more minutes to make sure it did not get infected. Even though I was dead tired my bags were packed and I was 100% ready to go when Mom came up to get me. Dad stayed in the car since they parked in the “Patient Loading Zone” and someone had to remain in the car. Mom has a Rav4 and I got into the back and crashed. It felt great to get out and go home. When I got home I needed crutches to get into the house. I was tired. I stunk. I had nausea. I was weak. Yet every time we opened the door there was always someone special waiting for me. Velvet. The dog we rescued in December 2016. Her tail was wildly wagging. She was as happy to see me as I was her. I always sat down on the couch and she joined me. Petting her for 5 minutes took away all of the pain I felt. For the time being. Sometimes she would join me in bed. How can ya not love someone like this!

If I got home on a Saturday it took until around Wednesday for me to feel right. It took that long for the chemo to filter out of my body and to be as normal as I could be although having no hairs on my normally hairy body and weighing a gaunt 155 instead of normally weighing 190 made life difficult. The first 2 times home I needed help getting into bed. My right leg hurt that much it took time to be able to lift my leg high enough to get on to the mattress. Once in bed I was there for the night. The first few nights home I had terrible nightmares and I chalk it up to the chemo. I couldn’t move yet my dreams involved me trying to run away only to wake up in a cold sweat seeing I was in bed incapable of moving. If I had to pee I had a pee bucket by my side to do it. My first day home I spent it mostly in bed. My second day I finally took a shower. I did not have enough strength to stand so I sat on a stool the entire time. Showers took at least 30 minutes because of this.

I ate very little the first few days home and what I ate was bland. I also slept a lot. I would be in bed by 9P and sleep until 9A. For the first 5 days, until chemo left my body, I also had to take a 3-4-hour nap during the day – I was that worn out. I ate very little because I always had nausea for a good 2-4 days after. Maybe more. While at Hoag I took about 15-25 pills per day. At home I took less but I still took a lot. I am happy to say right now, one year later, I take NONE of the Opioids I took then.

When I walked anywhere I did it with a crutch to support me. After a week at home I would sometimes join Mom to take Velvet for a walk. Not far just a walk. I had to be careful, though, because when you have cancer and have chemo you lose control of your body functions. I would be in the kitchen and the desire to poop would suddenly hit me. I could not run to the bathroom but got there as fast as I could but one a few occasions I did not make it in time and pooped in my pants. There were times I took Velvet for a walk and the desire to poop came up ASAP. More than a handful of times I would be at the park up the street when I had to poop. I hate to admit it but I would find an out-of-the-way place, discreetly lower the back-end pants and drop the load on the grass – always picking it up with one of Velvet’s poop bags.

I had a schedule where I would go in for 5 days then rest and recover for 3 weeks until my next visit. I did not drive between Valentine’s Day and Labor Day. My parents drove me everywhere. Mom was my nurse and both were my chauffeur until my next visit when this cycle repeated itself.

I know how lucky I am to call myself a cancer survivor. I know I am one because of family and friends and even if I live to be 4,000 years old I can never repay them for all they did.