Mar
2013

Guest Post.

Not long ago I received a comment from Cameron Von  St. James.  He is a caregiver for his wife Heather.  He asked if he could write an article for my blog.  It was during the time I was waiting to hear back about my scan so I asked to delay it for a few weeks.  Now a few weeks later, here is Cameron’s article:

From Cancer Caregiver to Commencement Speaker

On November 21, 2005, my wife, Heather, was diagnosed with malignant pleural mesothelioma. Immediately, I became an unprepared but determined caregiver because I knew that I had to be there for my wife and newborn daughter. Our first and only daughter had been born just over three months prior to the diagnosis. Instead of happily celebrating my daughter’s first holiday as planned, our lives spiraled into chaos as we began a long, difficult battle with cancer.

We began to learn more about mesothelioma right when we received the diagnosis. Our doctor gave us our treatment options, which consisted of a local university hospital or a regional hospital, neither of which had a developed treatment program for mesothelioma, or Boston specialist by the name of David Sugarbaker. We chose the Boston specialist. I knew that if my wife were going to have any chance of beating this awful disease, she would need the best care possible.

Over the next few months, we had to learn a whole new approach to living our lives. Before the diagnosis, we both worked full-time, and had our comfortable routines. After the diagnosis, everything became chaos. Heather couldn’t work, and I could only work part-time in order to be there for her and Lily. During my time off, I arranged travel to Boston, took care of my daughter Lily, and took my wife to her doctor’s appointments. I was overwhelmed with my responsibilities.

As hard as I tried to stay positive, I often worried about losing my wife to this cancer. Fighting this disease, I sometimes thought I would end up a broke and homeless widowed single father, and it terrified me. Some days, the thought of these undesirable events drove me to the kitchen floor in tears. I just wanted the whole experience to stop because I felt helpless, but I knew I had to remain strong for Heather. She needed me to be her rock, and the last thing she needed was to see how scared I truly was.

Help came for us when we needed it most. Heather and I were thankful for the comforting words and even financial assistance we received from family, friends, and complete strangers. Being a caregiver is difficult without help. It is stressful, and you can’t walk away from the job even if you experience fear or anger. My strongest advice to anyone else currently going through a situation like this is to accept every offer of help, whether it is big or small. I had to learn the hard way to let go of my pride and accept assistance, but take it from me, there is no room for pride in a battle with cancer.

Though it took years for our lives to return to normal after mesothelioma surgery, chemotherapy, and radiation, it was worth the fight. Heather beat the odds, and she is cancer-free today, over seven years since her diagnosis.

Now, I know time is precious. I went back to school while working full time, two years after Heather’s diagnosis. My time as a caregiver taught me to cope with stress and time management skills. Even more importantly, it taught me the strength that I have inside myself and gave me the courage to pursue this dream. I graduated with high honors and was chosen to be the graduation speaker of the class. I spoke of my wife’s experience in my speech and about hope. I told my fellow graduates that, just a few years before, sitting in a doctor’s office and receiving the news that my wife had an extremely deadly cancer, I never imagined that I would ever be standing up on that stage. I told them what my wife had taught me, that within each of us is the strength to accomplish incredible, even impossible things. Lily and her mother were in the audience to cheer me on, and that was the greatest reward of all.

Feb
2012

One Year

March 4th 2011.

It was my second morning in the hospital. I was at Sunrise waiting for the anesthesiologist to administer something to calm my nerves but he hadn’t shown up yet. It was the same thing yesterday except yesterday I went in for a colonoscopy. It was a precaution to make sure I only had the one tumor that was to be removed today.

My parents were here along with my wife and in-laws. My parents had flown in from New Jersey to be here for the surgery. They only allowed one person in pre-op to visit me at a time so they all took turns. It was a little odd in that it was almost like a procession at a funeral; each person coming in to pay last respects. Now I know it was just everybody wishing me well, but my state of mind was not the best at the moment.

I had a prescription for Xanax to take but was told to not take any before the surgery because of the medicine they were going to give me to knock me out. So I lay there knowing that everything was going to change for me.

To be honest, I was looking forward to the surgery. I had endured months of incredible pain that the pain killers were just taking the edge off and nothing more. As I’ve mentioned in a previous post, the only relief came from long soaks in the bathtub. That was not an option when I wasn’t home, which was often. At those times I just needed to grin and bear it. The surgery meant an eventual end to the pain. Little did I know it would almost take another year to be off the pain medicine for good.

The anesthesiologist finally showed up and gave me something to calm my nerves. In a half hour I would be heading to the operating room. The last round of well wishers came through and I was ready. My drug induced calmness and confidence soared as I was wheeled into the operating room. I had a few words with my surgeon as the anesthesiologist was adding something to my IV and I was out.

I woke up later in my corner room in the hospital. This was a small room. It was so small the nurse had to lean over my bed to work the computer mounted on the wall to dispense my medication. I was told that the cylinder in my hand had a button for pain medication and to hit it whenever I felt pain coming on. There was a bag attached to my stomach.

At that point I was tumor free but there were still cancer cells floating around in my body and once I was well enough I had to start chemotherapy. I was in the hospital for ten days. My parents had to go back to New Jersey before I was released.

All I could do for the next few months is lay on my side and wait for my body to heal from the surgery. A year later and it is still healing. Getting to doctor appointments was complicated because I couldn’t sit in the car, it was just too painful. We found out later that the reason for all the pain was an infection that had been brewing for a month inside of me. It landed me in the hospital for another five days in April.

I was on some heavy duty antibiotics for several weeks. After I was out of the hospital Danielle had to administer the antibiotics into my port. They were delivered daily by a pharmacy. The medicine had to be refrigerated at all times. We were under strict instructions to take the medicine everyday at exactly 5pm. After two weeks of injected antibiotics I was changed over to oral medicine. Unfortunately the strain of E. Coli I had was resistant to the antibiotics I was prescribed so it took longer than expected to get rid of the infection.

By this time I had started on the chemotherapy. It was a slight risk with the infection because my immune system would be compromised but the Oncologist didn’t want to wait any longer. It was time to attack the remaining cancer cells in my body. There was a battle going on and it was time to strike.

A Year Later…

It’s hard to believe it’s been a year. I find myself in good health. I’ve been working on losing weight. The best defense against cancer coming back is being in a healthful state. Needless to say I’m more motivated than ever to get into shape. So far it’s been going well. I’ve lost some weight and I have a bunch more to go but I’m having steady progress.

Having the bag for a year has proven to be less of an issue than I thought. I’ve come to accept the fact that it’s something I’m going to have with me for the rest of my life. It does take an hour of my day, everyday for maintenance, but I can do other things while I’m doing my business. I’ve been reading a lot more as a result. It will be interesting to see how things go when we travel this year. We haven’t gone anywhere in over a year and a half due to my illness. That’s going to change this year. My cousin is getting married this year and we’ll be there. We’ll also be at my wife’s family reunion as well as visit a few friends on the East coast. I’m a little anxious about it but I need to get out there and start doing things out of my comfort zone. The last thing I want to do is have this illness and the aftermath of battling it dictate how I’m going to live my life!

So a year later I don’t feel like I’ve been sick at all. I have daily reminders of the trauma my body went through, but the memories of the pain have already begun to fade. My anxiety only increases as I come up for a checkup which happens every three months right now. Hopefully over time my confidence that I don’t cancer will increase. I’ll let you know!

Feb
2012

Milestones!

So I’ve hit two milestones today that really put me closer to being back to normal. First I saw my pain doctor for the last time and second I had my port finally removed.

Pain Killers

Getting rid of pain killers I actually accomplished about two weeks ago. It has been a year since I first started taking Oxycodone to relieve the pain I was having from the tumor and the initial surgery and then the biopsy surgery. I had a lot of pain. It was especially bad when I had to go to the bathroom. For a long while the only relief I could get would be to soak in the tub with epsom salts. Obviously that was not an option at work where I just had to grin and bear it.

The real pain began after my big surgery. Wow! I had never felt such pain. The only thing that kept me sane was the pain pump filled with Dilaudid they had attached to my IV. While I had the pump things were going pretty good. I could hit the button every six minutes and it would give me a small dose of the drug.

The problem came when they removed the pump and started to manage my pain manually. At first my chart had me on oxycodone “as needed”. It turns out that if I started to feel some pain, it was too late. By the time the nurses got the medication to me I was in severe pain and the oxycodone was not able to overcome the pain I was feeling. The answer was to put me on a schedule. Every four hours I would get 20mg of oxycodone and two hours after that I could get 2cc of dilaudid which I could take every six hours. When the two medications overlapped I had the option for one or the other. I always opted for the dilaudid because it was much better at controlling the pain than the oxycodone. On top of all that I was taking 30mg of slow-release morphine every eight to ten hours.

Once I was released from the hospital I was off the dilauded and only taking the morphine and the oxycodone. The morphine was supposed to manage the pain and the oxy was only supposed to be needed for “breakthrough” pain. The problem was that I don’t think the morphine was was doing anything because every four hours like clockwork I had to take more oxycodone.

I stopped taking the morphine and felt no different so it was obvious to me that it was doing nothing (something we confirmed later when the doctor prescribed liquid morphine instead of the oxycodone and it did absolutely nothing for the pain and landing me in the hospital).

Since April of last year I was going to a pain specialist who maintained my oxycodone level at 15mg 4 times a day the entire time I was on chemo. That’s a lot of medication. Once I was done with chemo he started a program of gradually reducing the levels from 15mg to 10mg to 7.5mg to finally 5mg. It took four months to get there and once I reached 5mg, I just stopped taking them on my own.

That was two weeks ago and now I feel great. The funny thing is that now I’m off the medication, all the old aches and pains I had before all of this started has come back. I’m not complaining though. Those old aches and pains are kind of like old friends making me feel normal again.

The Port, Part Duex


Since I hit my three month scan and got the all clear from the oncologist, it was time for the port to come out. Three months is not a magic number. Some oncologists have it removed right after chemo, other not. Mine was in for three extra months.

Removal of the port is a really big deal for me. It is a confirmation that I’m really okay. I originally wrote about my port back in June of 2011. In it I talked about the fact that I had a new one put in because the first one had failed. Port failure is really a rare thing. This last port lasted me through the rest of chemo.

The X-ray shows the port in my body right before removal. As you can see, it was lodged in my chest on the left side. It then travels up to my neck where it enters my artery and then travels down my artery towards my heart. The catheter on this port was a bit larger than the last one I had. I was surprised to see how far down it went.

I was again awake for the procedure letting the doctor know when I felt pain. There wasn’t much pain to report. A lot of pulling and stretching though. It took him some effort to get it out. I can only guess that the size of the incision was as small as possible to get the port out.

The picture on the left shows the two actually ports they had inside of me. The one on the left is the old one and the one on the right is the one they just pulled out. It’s hard to believe I had those in me for over a year. It’s great to have them out. Just another step to normality!

The incision will take a while to heal. I need to keep the area dry for seven to ten days. Luckily I’m old hat at that since this was the third time I had the procedure done. Once for the first installation, once for the swap to the new one and once for the removal of the port. Let’s hope it’s the last.



Aug
2011

Any Illness is Now a Big Deal

So Friday before chemo on Monday.  I have some trouble urinating.  I know not a common subject to just be blogging about, but it brings up a point about my life these days.

The problem got worse and turned out to be a bladder infection, my first ever.  The cause was more than likely my compromised immune system to fight off infection.  I called the nurse that supports my oncologist and went through the symptoms.  She had to consult with another doctor since mine is away at the moment.

Before she called back, things had gotten worse.  My urine had turned to a lovely shade of red and the pain was getting pretty bad.  I also started to pass coagulated blood.  The blood was starting to clot inside my bladder or so we were thinking.

By the time the nurse called back I was really scared.  I had a lot of surgery done down there and what if this was something related to the surgery.  The last thing I want to do is go under the knife again.  She was unsure of the blood clots and was wondering if I was maybe passing a Kidney stone.  I had no pain in my lower back and was not feeling any other ill effects.  Just painful red urine with blood clots in it.

Under the doctor’s orders she phoned in a prescription for antibiotics.  It’s the normal procedure for a bladder infection.  I started to take them as soon as possible.  She then followed up by calling in another prescription that helps alleviate the symptoms to let the antibiotic do its work.  The plan was to try the medicine, but if it gets worse to head over to the ER and get checked out.

That was about 2 in the afternoon on Friday.  I had already called in sick to work because I was in no shape to do anything but lie down and go to the bathroom, often.

Because of the cancer and because of these unusual blood clots and the fact that things were not getting better by 2am Saturday morning we decided a visit to the Emergency Room was in order.  I was not happy.  The default response from your doctor when you call and things are not “normal” is to go to the emergency room.  My past visit to the emergency room, while necessary, was not at all a positive experience and I didn’t want to go through that fiasco again.

But we decided, based on the unknowns that we should go.  Since it was 2am there wasn’t a long line at the ER.  We got in pretty quickly but it took some time for a doctor to see me.  In that time we acquired (by asking, nothing was offered up to us) for a urine bottle because we knew I was going to go again soon and they would need a sample.  Sure enough the sample was made before the doctor came in.

Once we saw the doctor, who was very nice, I explained my story, he ordered a full blood workup and had the urine sample sent to the lab.  He also explained that chemo can have the effect of sloffing off cells in your bladders since they, like cancer cells are fast producing and growing. His only concern is that I need to keep up on the water to prevent any kind of blockage.  Not a pleasant thought, especially with my past experience with catheters!

After another while the doctor came back with the results and reported my kidney function was excellent and bacteria was found in my urine.  He was confident that all I had was a bladder infection.  Weird that that would be the best news I could hear.

After that, I relaxed and my stress level fell, along with my wife’s and mother-in-law’s who came down after she heard we were at the ER.  After some paperwork we were allowed to leave at about 5am.

Even with the diagnosis, I was still concerned the following day.  Things seemed to start clearing up, but the clots had become much bigger and the idea that it could clog up the works was never far from my mind.

Things continued the same through Sunday as we decided that not only was the chemo the cause of the infection, but it was also probably slowing down the time it takes to heal.

By Monday things were the same as we headed off the chemo.  We were unsure if they would even allow me to get infused because of the infection.  After 2 and a half hours of waiting, they finally decided it would be ok.  This was good news for me because I don’t want any delays in getting treatment.  Not only is it a critical time for the chemo, but I sure didn’t want to be put another week on the finish date (which is October 17th if you were wondering).

By the end of chemo and when we finally got home, things started clearing up.  The infection isn’t gone, but it is definitely on the way out.

On a side note, I got to see an old friend on Monday and meet a new one that has inspired me to get back to building guitars.  But that’s another story!

 

Jun
2011

The Ambien Incident

Picture this.  You are given a dose of Ambien by the nurse in the middle of the night at the hospital because you haven’t been sleeping.  A few hours later you wake up not knowing who you are, where you are and don’t trust anybody but your wife who can’t convince you that alls these people are here to help you.

That happened to me in the hospital during my 10 day stay from my big surgery.  It was my first and last time ever to take Ambien and the way it all went down (from my point of view at least) was like this.

It was late one night.  Danielle and I hadn’t been sleeping well since we had been there.  We were both exhausted.  I was having a difficult time getting comfortable because I couldn’t really lay on my back or sit.  I would shift from my right side to my left.  I was hooked up to an I.V., I still had a Foley catheter installed that would pull and be uncomfortable from time to time.  Danielle’s bed was the couch in the room that had some pretty hard cushions and no springs.  There was nothing to watch on the TV.  The channels were supplied by the hospital so there were about 8 channels you could watch.  Not that the 700 channels we have at home had anything better to watch on them.

I was tired of staring at the four walls of my room and I was keeping Danielle up.  Ambien had been prescribed to me early on in case I wanted to take it.  Up until this time I had gone without because I was already taking a dozen or so medications daily and I don’t like taking any.  I was at the end of my rope and needed to sleep so I called the nurse in and requested the drug.

Fifteen minutes later I had my medicine and closed my eyes for sleep.  Sleep did not come easily though.  I still struggled to find it and when I did, my mind was racing.  I remember dreaming still images flashing in my mind very fast.  It was not restful at all.  I did eventually fall asleep only to wake a few hours later.

As Danielle describes it, I stirred and then moments later I was up and out of the bed.  Not a small feet considering this was a hospital bed with the guards up on both sides.  From my point of view I woke up not knowing where I was.  It was dark, everything in the room was lit up by an orange glow coming from under my bed.  To my drug filled mind, everything looked ancient.  Like there was a thousand years of dust on everything.

I didn’t know who I was, I didn’t know where I was and I didn’t know why I was there.  I am a pretty big fan of Science Fiction and so when my mind couldn’t make out reality in my situation it created one for me in my favorite genre of fiction.  I was convinced that I was part of some experiment that I had not given permission to.  I needed to get out of there fast!

I jumped out of bed.  Again, no small feet because the rails were up and I was only a few days out of surgery.  The I.V. in my wrist was the first thing to come out.  I needed to escape but i still had a tube running from my leg to the orange glow underneath the bed.  If I had any grasp of reality I would have remembered that I had a Foley catheter attached to me and securely taped to my leg.  I had no grasp of reality and was certain this was some part of the experiment.  I tried to pull the tube from the bed, it would not budge.  Then I started to yank the catheter from my leg trying to break the connection anyway I could.

By this time Danielle had made it to my side and was trying to calm me down.  I recognized her and knew she was my wife, but was unsure if that part of my life was reality or not.  I was very, very paranoid.  By this time the nurses had come into the room to try and get the situation under control.  I remember not letting them near me.  I wanted to be alone with Danielle to try and figure things out.  I didn’t know what was going on but I thought if I could sit and talk it through with Danielle I could figure it all out.

First I asked if everybody could leave except Danielle for a few minutes but that was unacceptable to the nurses.  They needed to be sure I was not a danger to myself or anyone else.  The bed was located right next to a bathroom.  I asked if Danielle and I could go into the bathroom and talk.  That was also rejected.

The fact that I wasn’t allowed to be alone with my wife just fed into my paranoia even more.  Finally I demanded my phone and called my parents who happened to be in town because of the surgery and my in-laws who live in town.  Danielle, sensing that this might be the only way to calm me down let me make the calls and then talked to our parents after I talked to them.  I needed them to come down here and kind of confirm my life is what I thought it was and not some crazy existence out of The Matrix.  They all got up in the middle of the night, met up and came down to the hospital in one car.

While they were on their way, Danielle had gotten me calm enough that I would allow the nurses to re-access me for my I.V.  Unfortunately they were having problems accessing a vein and several different techs attempted to do it.  I was still not in my right frame of mind and the paranoia was working overtime.  Why couldn’t they access me?  Something has gone wrong and they are not telling me.  Why are they parading all these people in to look at my arms?  Still my mind was not able to make the leap back into reality.

At this point it seemed to me that it has taken too long for my parents and in-laws to get to the hospital.  I needed to call them and find out where they were.  When they picked up the phone, they were pulling into the parking lot.  I would not allow them to get off the phone until I saw them in person.  I kept asking for status updates of their location.  My father-in-law, Dana was on the phone with me and was doing his best to keep me calm.  he didn’t mention to me that they were stuck at security pulling out their IDs to get in the hospital, he just would explain that they were waiting for a very slow elevator.

I kept him on the phone until he walked into my room and I saw him.  It was at that moment when my mind finally accepted reality and I let out a huge wail. All this weight and uncertainty was just released out of my body.  It was the one thing that I was able to request and obtain to let me know that I was who I thought I was and I was in the hospital for the reasons that I knew.  It took a few long minutes for me to get over the whole thing.  I remember holding my mom for a while.

They were still having a problem accessing me so they finally brought somebody up from the E.R. who accessed me pretty quickly.  Things started to calm down after that.  I was exhausted and embarrassed.  It’s not every day you lose your mind.  I was happy to find mine again.

My family stayed for a while and Danielle got me a sandwich.  I was not going to sleep anytime soon.  Eventually everybody went home except for my mom and of course, Danielle.  I don’t think I fell asleep until after the sun came up.

After that they put a big note on my chart not to give me Ambien and the next time I was in the hospital they actually put it on an arm band so that no mistakes could be made.

Looking back I can see some humor in the whole episode.  It was definitely the night Mike went crazy.  At the time it was pretty terrifying.  For an hour or so I had lost who I was and my mind did its best to try and make some sense of the situation.  It did a lousy job of it, but it had lost any frame of reference.

It’s an event I will never forget and a great reminder that even though I’m going through all of this I have a loving family, great friends and a wonderful life that I will be getting back to sooner rather than later.