The New Journey Begins…
Every journey starts with that first step. It seems that now the fog is lifted and I am finding myself at a fork in the road of my journey. I am being pushed to make a life altering decision. All signs point to the right which is where my family is, and I can see that to the left is barren stretch of road that is just empty. I have been doing a lot of soul searching over the past few days. We have sat down together and talked this through and thankfully, my family is supportive of what I’m going through and what I will be going through in the future. I understand I cannot do this alone. I need help; I’m the first to admit it. I went to see my primary care doctor and his opinion was that a rehab facility is the best place for me to get better. Of course, at first I balked at it, however the more I thought about it, the more sense it made.If you’ve never seen the movie “28 Days”, I highly recommend you watch it. I’m like the character Sandra Bullock portrays in most ways. No, I don’t start drinking when I get up, but I do go over the limit more than I should. I have so many triggers at the moment, and need to step away, and learn how to cope with the fact the inconveniences will always there, but I need to look away and focus on something more positive. I plan on starting with the kids and being a better father figure. This is just one a million positive steps for me, as well as, for my family.Today (Fri. 12/04/2009) is the day when I talk to my addiction (formerly known as “best friend”) and tell it we’re done. I made a decision, beginning tomorrow, I need to go to the right of the fork, and let go and let my whole support group and God help me. I’ve never gotten a bad gift from God, and a whole lot of factors have led me here. So here I go, taking a deep breath and taking 1 step at a time…

Time OUT!

Written by Thomas Williams, Edited by Sarah Williams

Ok you know what? I need to stop right now and vent.

Cancer sucks! The side effects I’ve gone through are minimum compared to the millions of people out there, which are in a worse place than I am, so you would think I could take solace and strength in that. However I find it hard to pray for relief when I know I have it easier than someone else.

I cannot seem to get rid of the machismo in me no matter what, go figure. I suppose I attribute that to my father, who died from complications of diabetes. No matter what he went through, he always held on to the hope that something was going to make it better. He went through countless surgeries while I was growing up. He lost his left leg to the disease, yet he kept on keeping on. He learned what it is like to have something you cannot control yet he kept on moving forward as best as he could. He knew how to balance it, he accepted his disability (which was a journey that for him, took years). And the time I had with him during his brief life helped develop who I am today. He offered me wisdom and direction, which I often didn’t heed. But it is because of him, I guess, that has prompted me to review my character and integrity.

I am having a very hard time accepting what is going on with me. But the last conversation I had with him was about him going into surgery again. Yet this time it seemed strangely different in a positive context. (Just a note; in the 80’s stents, and lasers were experimental). He was very upbeat and positive the last day we visited with him (as he had been transferred to Tucson). He died 9 days later, on Wednesday, November 11^th. Ironically, he was a navy man to the end until the disease forced him to take and early medical discharge.

I am talking about this for the first time and it’s not an easy subject to breach. I’m not sure if the feelings I’m going through are because of my need to prove to my father that I did listen or is it simply that I need to just man up and be strong. That seems to be a lot easier said than done. It’s not that I don’t have the support; it’s a mental wall I need to break down. I look forward to reader input, and also constructive criticism, because that’s how we grow. So where is all this going? Well, I feel as though I’ve just been humbled by the universe. And how can I be bitter about that? It is a good lesson for a self proclaimed tough guy to go through, and yea, I’m a Leo/cancer so I get the best and worst of both worlds emotionally, as well as spiritually.

12/01/2009

Today was the day that I had my appointment with my oncologist. The information he gave me was bittersweet. During our conversation, he told me a “friend” needs to be left behind on the next step of my treatment. This “friend” (I use the term loosely and only for reference purposes) has always been there, made me laugh, cry, hell, makes me happy and sometimes sad. My belief was/is that I can always count on that friend to be there, every single day, and now at the most crucial step in my treatment I have to walk alone, without it. Truly, I do have an awesome support system but I never thought that there wasn’t anything I couldn’t handle without a few (or more) beers to take the edge off.

I suppose my emotions are a bit confused right now. My first emotion was: who are you to make me give up my friend, dammit? Then he relayed the words no one who loves beer as much as I do, wants to hear,” If you don’t quit the alcohol use, the transplant team will not go through with the procedure”. When did I step into the drama, “As the World Turns? So, what he was saying is kick my “friend” to the curb, the one thing that has always been my crutch, or face death. That was it in a fucking nutshell. Great! Just fucking great, that “friend” has helped me deal with a lot of baggage, so that I might feel lighter. I suppose upon reflection, it really didn’t help me be better, it just delayed my having to deal with reality. And yet, the choice is obvious, the path is not so obvious. My cancer doctor is quite aggressive with my treatment and recovery. I have an appointment tomorrow, to help me drop that “friend’ off at a bus stop and drive away….

Life is funny, I’m spending some time with my “friend” at the moment, just looking back at the memories we shared. Hmmm, how do I put this? My friend is and has been consuming me for a long time. It has distorted my focus where it needed to be. With my friend it’s all or nothing baby. It keeps on saying pay attention to me nothing else matters just spend time with me and I’ll make it all is ok. When in fucking reality I’ve lost more good times with my family because my “friend” is possessive just holds on and is always there, so I’m always thinking about when can we have our time. All the while, I’m not even taking into consideration what anyone else thinks or does. Just because things looks good on the outside does not mean it’s all that good on the inside.

Here it is for the world to see, I’m not ashamed to be an alcoholic, I’m just pissed it took cancer to make me wake up and see what I really have and appreciate, it. At the moment it’s kind of a whiteout, (snow storm for the desert dwellers). I don’t know where to go, so I’ll let God and my family help me through this, something I should have done years ago…….

This all started in July of 2009. Hell, this was all new to me. I didn’t know at the time what was going to happen. I talked to my supervisors in August, and told them I did not know things were going to go.

Ok I need to backtrack a little. Back when we found out that cancer was a possibility, Sarah and I had talked about EVERTYTHING. Let’s be honest, the” C “word brings chills to anyone affected, whether it’s them or a family member. A friend of mine from work developed pancreatic cancer and died from it. He never said a word to any of his friends and co-workers, so needless to say, we all felt the impact of his loss. In contrast to his situation, when I found out I had cancer all I felt was, “Ok, how do we get over this INCONVENIENCE?” not thinking this would be anywhere near as bad as what he went through.

Little did I know what was coming? I suppose ignorance is bliss to some but that is truly not the case with me.

So back to the doctor, he informed me then that I needed to have a “Porta Cath” installed for ease of chemo administration, etc. He set me up with a surgeon to get this procedure done (more about that later).

We had a busy day that day. We decide to get all the appointments out of the way at once. Sarah had an appointment at our regular doctor (this man is an angel). She went in and after about a minute, the nurse asked me if I would please come into the room where she was.

I was thinking, “What else can go wrong today?”And when I went into the room, the doctor gave me a big hug and said,” It’s going to be ok. We are there for you”. He had already gotten the results of the tests from the Oncologist so he knew what we were up against. Then, the man (he’s definitely an extraordinary man, who just happens to be an M.D) spent 45 minutes talking to both of US. He took care of Sarah, who was hysterical, in 5 minutes. The rest of the time, he talked to us and advised us as how to go forward and that at the time, he understood that I wasn’t ready for emotional help (Hell no! I’m superman). He patiently explained to us that when I needed him he will be there. He was confident that I would need him eventually. (Why is he is always right?)

Ok, so by then a week or so passed, and I went in for my first bone marrow biopsy. I discovered that Demerol, and Ativan work well together and that is an awesome combination because the way my wife described the process, I was glad I was on my stomach, as well as sedated. At first, it just felt weird, this picking at my hip bone. When the doctor “sucked” or aspirated the marrow out of my hipbone, well, that part was a little “uncomfortable”. The whole process took about 30 min in all and afterwards I was just loopy as ever and having a fantastic time on the ride home. (Sarah feel free to interject here- Uh, yes, I can attest to his “shenanigans”. I had to shut and lock the controls to his window or else he was going to show the whole block his “boo boo” on his posterior! He kept spitting raspberries at me because I was killing his fun. - Sarah).

The biopsy results came back and it was determined that it showed I was at stage 2, which is highly treatable.

The oncologist set me up with a surgeon to install a “port a cath” (it’s a catheter in my upper chest) which basically makes giving chemo and blood draws a lot easier. This procedure was scheduled to be done at West Valley Hospital. After going through pre-op procedures, it only took 90 minutes and when I woke up, it was installed just above my right nipple. Now I proudly say I have 3 nipples.

And whatever you do, don’t drink coffee before surgery, no matter how addicted you are. Four hours prior to checking into the hospital, I decided to have just one cup. I got soooo sick in the recovery room after the surgery. Sarah had to keep reminding me to breathe because I would just stop; even the nurses were yelling over to me “Tom breath! You’re doing it again”. What an ordeal, it was a good thing I had the weekend to recover

I’m sure I’m probably boring you by now, so I’ll try to pick up the pace. Here are the facts:

On October 5, 2009, I worked my last day for the time being. I was so tired and exhausted. Normally a day of running 2 dorms would be nothing if I had the strength to do it. So the next day, I made the decision to go take some time off. I had to face it, chemo caught up with me, and I was no longer an anchor with the shift and now, suddenly, I was the weak link (hard fact to face). When inmates started to ask, “Hey, Williams you ok?” my reply was that I was just tired, no worries.

So I have to accept my limitations and let go of what I no longer was able to do and start taking care of myself. The chemo I was on was not as bad as others; however it had a tendency to have adverse effects on my body. Sure, it kills cancer cells but it also kills the good cells. Hell, who would think platelets were so important but when they get low 3 things happen: 1) you can bleed and continue to because you have reduced blood platelets to clot any wound, 2) the other is your energy falls to the floor 3) bruising is a big problem.

I would get frustrated because I just had limited energy to finish the day. Many times I had to hope to God nothing would happen at work. I knew that was why I took a leave of absence, I am not the man I was a year ago –I had lost the strength to take care of what needed to be done. Again, I felt like the weak link. I cannot lie, all I could think at this moment was: “This FUCKING INCONVIENCE” has taken a toll on my faith. Yet still believing that what you pray for from your heart you can have. I suppose I’m just in hurry up and wait for the doctor to come back from the country club and take care of me. The pain I have (peripheral neuropathy in my feet and legs) prevents me from going down the stairs without holding with both hands. When I first developed this, I fell 2 months ago. My tail bone is still sore.

So now I have to change who I am. I HAVE TO ACCEPT A DISABILITY! WTF! Is this is god’s way of humbling me (no I’m not superman)? Since I took short term disability, I have developed the previously mentioned severe neuropathy in my lower legs and feet. It is now to the point I’m now on neurontin, vicodin, and lots of Tylenol.

To say the least, this is not a vacation. My feet hurt with every step, my moods go up and down like a roller coaster. Pain tends to kill the spirit, so I do everything that I can to get rid of the pain. I’m not a pill popper, yet a vicodin every now and then sure makes a difference. I try to stick to Tylenol, because I don’t need an addiction to pain pills.

In this time frame, I’ve had a second bone marrow biopsy, and am awaiting the results. I’m feeling as if I am in limbo for now.

The only good news is that all is well with the family. Sarah is able to juggle school, me, kids, life, yet the real fun begins when I go into transplant mode too much to talk about here. It’s all explained on Google AmericanCancerSociety.org. Or you can get more info on the MMRF.org website. I’ll be receiving an autologus (self donor) stem cell transplant if all goes as planned. More to come…

Well, this is my blog; I always thought it was for self absorbed people who feel like the world cannot live without the next post. Well, I’m not self absorbed. I have cancer and this is my way of getting it out in the world, my own personal journal that the world can see and if I give hope to 1 person then it was well worth it. My journey with myeloma started in November of 2008, (well I knew something was wrong)--I got pneumonia, no big deal, yet between November 2008 and April 2009 it happened 3 more times. Me being the stubborn goat I am, let it go as a fluke.

Then, in May I got sick again, (WTF) so my wife (the boss in a good way) got me an appointment with my primary doctor and he sent me in for routine blood tests. The results had come back abnormal and called me back to take them again, twice, then, they called for me to come in. I go in he says,” eh not sure what it is but I’m going to refer you to an oncologist”--ok no problem but what the hell is an oncologist?

I continued to go to work like nothing is wrong I’m tired all the time. I thought maybe the problem was the beer I drank at night to wind down, so I brush it off.

Then one day before my appointment, I’m in the admin office, and I ask a supervisor what an oncologist does. He replies that an oncologist is a cancer doctor. My blood went cold…WTF, I thought, why am I being referred to a cancer doc, I don’t have cancer I’m fine. All these thoughts went through my head while a close friend and co-worker looked on. I was speechless, and she was too. (I don’t blame her. After all, what can you say at a moment like that?)

The day came for me to see the oncologist and I went to the appointment with my wife, Sarah, and the doctor, with 25 plus years experience, said he suspected it was multiple myeloma, and that he wanted to do some tests to confirm his suspicions. Ok, I thought, let’s do it not realizing all the fun involved with that. Blood tests are one thing but to have to pee in a jug and keep it for 24hrs in the fridge, is another. Yea, I had to collect my pee for 1 day (hey kids that’s not orange juice in the fridge, ha ha). So, no worries, I do everything requested of me. Good times, good times.

Then the day came for the follow up appointment with the oncologist. With my wife by my side, the doctor comes in to the room. His demeanor was as if he was your neighbor next door or someone you would talk to on the bus. My thoughts were as if he would have found nothing unusual, then he drops the bomb. “Tom you have cancer. It is multiple myeloma”. He goes on to show the blood work (like I understand at this point.)

Ok now what? Everything for the doc is not soon enough. He feels as though beginning treatment was the best course of action, but of course, he feels like this treatment should have been done “a month ago”. The rest of the day is shot. I had to cancel my dentist appointment (obvious reasons). My wife sobbed, she was hit harder than I was. I tried to remain strong (like I have always been) I reassured her it’s going to be ok and the doc knows what he is doing. She was inconsolable for a full week, and yea, I went on a rollercoaster too I just held it in….had to be strong. But who would’ve known this would be so hard.

This was all in July of 2009. Hell, it was new to me I didn’t know what was going to happen. I finally told my supervisors in August knowing that this was a reality, and told them I did not know how it was going to go. And I truly didn’t know, and not knowing is so scary… to be continued…