“My Voice” by Miguel Jacobo

My side of the story…

My name is Miguel Jacobo and my journey begins when I was 22 years old. I had just moved back to my dad’s house from taking a “year off” in Las Vegas, where I was staying with my mom. I had moved back in October and by March my dad and I are bumping heads once again. He suggests that I move out and I agree. So, there I am, a young 22 year old man moving out to his cousins’ new house and managing a semi-successful third party Verizon wireless kiosk at the Ontario Mills Mall. I was on top of the world!

It was the first time I was completely on my own and living just the way I wanted to; work, party, eat, sleep, party some more, everything was going to plan.

But then, dun dun dun, after a Red Hot Chili Peppers concert in late August, I start to get massive headaches. For a while, I thought there must have been something in the beer I had and since I was never one to rush to the doctors, I kept ignoring them. Plus, I was under the impression there was nothing some Tylenol, Nyquil and “recreational” prescriptions couldn’t cure (not all at once, of course)…oh how wrong I was.

These headaches would not stop bothering me and a couple weeks later they were starting to be accompanied by fatigue. It started by me skipping a shower in the morning here and there to the point where I didn’t want to get out of my work clothes so I wouldn’t have to get dressed in the morning. I can only imagine what my cousin and our housemate thought of me.

By mid September, this fatigue was obviously showing in my work. Since I managed the kiosk, not only was I was in charge of getting people to sell, but also to perform well myself, as well as keeping the store looking nice and presentable. My manager was the first to suggest I go get checked out. I told her that it was probably work related stress so I should take the weekend off. She agreed and instead of going to the doctors, I go to my little sisters’ birthday party. It was nothing big, just barbeque at my dad’s house, so I figured it would be okay to sit inside all day and relax. Monday I return to work and I’m still feeling the same. I was feeling so much like crap that I confessed to my manager that I hadn’t gone to the doctors and was feeling the same. She let me go home early, so I could go get checked up.

The doctor that I was seeing was the physician assigned to me through my own job. I was still covered by my dad’s work insurance, Kaiser, but since I was out on my own being an “Adult” I didn’t want to use his. So this doctor pretty much treats the symptoms I had and for “just in case” purposes sends me to get blood work drawn. Now, since I had to travel to another building on the other side of town just to get these “precautionary” blood work drawn, I figured it wasn’t that important. The doctor said I had the flu and constipation so I left it at that.

By now it’s October and I’m still not feeling well so I decide to take the rest of the week off of work. My dad suggests that I stay in the extra bedroom at his house until I feel better and so I did. That turns out to be the best move of my life. One week turns into two and two into three until the last week of October. During my stay at his house, my dad makes appointments for me at Kaiser and thinks that my fatigue has to do with my weight problem, I weighed 370 pounds at the time. Again the doctors treat all my symptoms and say I need to go on a diet. Any progress was temporary.

Finally, after a brisk walk to the end of the street on a Saturday, my dad says to me that something else has to be wrong and we should go to the hospital and try and get a different diagnosis. I think I would have refused but I literally did not have the energy to say anything, so we went. Once again the doctor says the same thing every other doctor had said for the past month except, he thinks it would be a good idea to get blood drawn, for precautionary purposes of course.

The lab was not open on the weekend, so we had to wait until Monday.

While all this is going on, my younger brother Ricardo had an over-sized thyroid in his neck, which looked like he swallowed a baseball and was still digesting it. He had it surgically removed and his team did test on it and found that it may be cancerous. The treatment they gave him included a three day stay in an isolation room and some radioactive pills that he needed to take. The Monday that I was supposed to get my blood drawn was also his first day in the isolation room. My dad and I stopped by to leave him drinks and snacks and stuff to keep him busy during his stay, and also to wish him luck. So we drop of the goodies and head down to the lab. It was still morning so my dad suggests that we grab some breakfast after. I hadn’t eaten a real meal in like three weeks and was not in the mood to eat but, again, I didn’t feel like declining the offer and then giving reasons why, so we went.

I barely touched my food and my dad seemed to loose his appetite after watching me swirl my rice and beans around the plate. The little conversation that we did have was taken over by “Borat: the movie”. My dad wanted to see it but I think he saw the look on my face when he suggested we see it, so we headed straight home. We get home and the answering machine is blinking with three messages from the hospital and all three are urging me to call back or head to the emergency room. My dad checks his work answering machine and there was another message from the hospital. Now, I think anyone else would have been a little worried by all this but all I was thinking was “Geez, these people have no patience!”

So I call them. The nurse on the other line was surprised that it was me that was calling and not like my parents or somebody else. She must have asked a dozen times if I was feeling okay. I told her that besides the usual crappiness, everything was fine. Once we get to the emergency room I get admitted right away. The first thing they do is check my blood sugar and shockingly to the nurses it was normal. I’m still not sure why they were so surprised. After, they send me to the back and sit me on a gurney and start to take blood and placing I.V.s.

My dad and I are just looking at each other with confusion and I’m thinking “what the heck is going on”.

Shortly after a doctor approaches and lets us know that my white blood cells were abnormally high and that at the levels that they are, it is about 99% certain that I have leukemia. I gave the doctor a blank stare and said okay. My dad and I looked at each other with the same question in mind, “okay, what does that mean?”

After a while of sitting and waiting around for some one to explain everything, I finally get moved into a room and an oncologist comes in and explains that leukemia is cancer. I don’t know if I was still out of it or what, but the news really didn’t hit me. At this point it is about 10 p.m. and I’ve had a catheter placed in my neck and had the 125 pound oncologist attempt a bone marrow biopsy. I say attempt because it took her 30 minutes of trying before she called in for reinforcements and had someone bigger and stronger plunge the needle into my hip. After that I was moved into my own room, up in the hospital building and spent all the holidays there. The staff was really nice and let my family and friends in at all hours of the night and didn’t say anything when we practically threw a party in my room for Christmas and New Years. We even had a buffet line for Thanksgiving.

There was one moment during the holidays, after all my hair had fallen out, where I caught a look at myself in the window. The first thing that came to my mind was ‘Damn, I look like a freaking leukemia patient!”  After two months in the hospital, I don’t think it really had hit me what was going on. I sort of just thought of it as having like the worst cold in the world and that’s why I had to stay in the hospital. My oncologist had said to me once, that if I hadn’t come in when I did, I would not have lasted another week. That kind of talk, I only see in movies. It all seemed so surreal. Thank God my family was able to stay close because if I would have had to go through it alone, I don’t know that I would have been able to do it.

By late January I was out of Kaiser and heading in to the City of Hope for my stem cell transplant. My youngest brother Chris happened to be an exact match for me so I was blessed once again.

There at the City of Hope, I had some more chemo and radiation before the transplant. My transplant was on March 14th 2007. I spent 29 days after transplant in the hospital and then the rest of the 100 days close by in some cottages they have on the premises. My mom was still in Las Vegas when I was diagnosed but high-tailed it there to stay with me once she found out. Pretty much, she lived at the hospital with me.

On day 100, when I was finally going to be able to move back to my dads, I go for my usual bi-weekly check up and my doctor says I have pneumonia and I can’t go home. What a sack of bricks that was.

The pneumonia only lasted for about 2 weeks so it wasn’t all that bad. During those 2 weeks, I would do physical therapy and the therapist would encourage me to go to the groups that they had. It was like a group workout and they also had support groups.
I would refuse only because I thought I didn’t want to make friends that way.
I wanted to be normal, I didn’t want to belong to the group of bald people. I wanted to be with my regular friends and meet people the normal way. I didn’t want to belong to that club.

So I go home and my progress improves. Little by little, I’m becoming stronger and generally feeling better. I’m anxious to be active again and live life. I started out by walking on the track of a nearby school. As I was getting stronger, I started playing some racquetball. One weekend I’m playing with my two friends and I trip and fall and feel a sharp pain in my hip. By this time, I’m almost back to normal with my blood counts so I think nothing of it. ‘Probably be sore about it later’ is what I thought.

Time passes and the pain only gets worse. I talk with my doctor and he says it might be Avascular Necrosis. He says that because of the total body radiation I’ve had, it is a big possibility I might need surgery to either fix or replace the hip. After talking to the orthopedist, we decide to try and fix it before replacing it. Being so young, the doctor didn’t want to start altering my body, even more, before we gave it a fighting chance.
Surgery goes fine, I had a bi-lateral core decompression (drilled holes in the hip bone to relief pressure).

Recuperation time was three months and I was bedridden for most of it.

For a while I had wanted a tattoo and so I thought what better way to show off my progress than by getting a cancer-related tattoo. I was doing some research and somehow landed on “Planet Cancer”. I see that it is full of young people and each one of them is going through or went through pretty much the same crappiness I did. Yeah, my friends and family were there for me, but none of them knew the things that go through your head as you’re standing there, strapped to the wall, as you get every last cell in your body blasted away by some humongous radiation machine, or getting a dose of morphine 15 minutes before trying to remember which thigh they plunged the stupid half-inch syringe in last time. I started to see that I wasn’t the only one.

After the three months my hips feel a little better but not great. I figure physical therapy should take care of the rest, so I give it till the end of the year. At this point it is 2009 and I’m still not seeing improvement so I tell my doctor to do it.

March 24th, 2009, I have a Bi-lateral Hip Replacement. Right away after this surgery, I feel better. Physical therapy goes fast and smooth. One month after surgery and I’m walking without a walker or cane, two months and I’m walking around the mall for fun and now three months later and I’m ready to take over the world!

Now, I would like to say that I did all this on my own and that I never let it get to me but that would be untrue. I used to think of cancer as a bump in the road that you needed to get through and forget about, sort of like high school. I used to think that no one like me was going through the same crap, so why talk about it. The only advantage I saw to it was having it as an ‘Ace in the hole’ for when people are comparing war stories about how much their lives suck (I usually win with that one). But after talking to and realizing that there are so many people out there that walked down that same road, and definitely worse roads, than I did, I see what a real survivor is made up of: support and strength. That, I would say is just as, if not more, important than the crap they put in those I.V. drips. My friends and family were there with me through the whole thing and I will forever be grateful. The friends I have made because of this wretched disease are friends I’ve made for life and are part of a new family that help me celebrate my Second birthday every year. It also helped that I took myself out of the mindset that this was not going to own me for the rest of my life. I truly believe that God does not give you more than you can handle. He may not have the same plans for your life as you do, but He is not going to serve you more than you can eat.

Now its time to pay it forward…

This entry was posted on Monday, July 20th, 2009 at 6:33 pm and is filed under written word and tagged with leukemia, Miguel Jacobo, Survivor.