A life twist

I haven't posted in a very long time as I was going into surveillance mode. Life started to return back to normal. Hair started coming back and energy was back. Time to conquer the world again.

Becky and I went to Key West to celebrate my clear scan in August.

Tyler and I were getting ready for our trip to Cozumel Mexico at the end of October. Work was starting to go well.

I had a chest scan and blood work and things were still looking good.

Then we went on vacation to Cozumel. This vacation was primarily for Tyler and my 6 year anniversary and to celebrate being clear of cancer. We arrived at the resort on Saturday evening, with our friends Bill and Heidi, and thought it was beautiful. We had a nice day on Sunday hanging out by the pool and ocean, playing cards, snorkeling, etc. Then Tyler suffered a massive heart attack. 2009 would continue to challenge us.

So of course, I started a different blog to keep people updated about the latest 2009 crisis. It is at http://tylerheart.blogspot.com.


Euphoria - 8/21/2009

"I'm sorry, could you say that one more time?"

I had my PET Scan on Thursday and it seemed to go well. Forty minutes of sitting in a chair trying to relax completely followed by 20 minutes in the PET Scan. I left without feeling much emotion and went on with things.

Friday afternoon I received a call from the doctor's office. I figured they were just confirming my Monday appointment. The nurse said she thought I should have good news for the weekend. Still not comprehending what she was going to say, I replied , "..oh, what would that be?". She then told me my scan looked good.

At this point in this "life event", I don't get to excited and believe things right away. I was told by the surgeon at one point that it looked like they had taken care of things by doing the surgery. Oh, umm, no that wasn't quite correct.

So I asked the nurse what did "look good" really mean? Was it that it looked pretty, yet the doctor would need to confirm things Monday? It looked good, but there was still something going on? When you say "celebrate".... celebrate what exactly?

By this point the nurse was getting playfully annoyed with me. She then said, "ROBERT, your scan is as clear as a scan can be". "Go and celebrate". Of course I then responded with ".. so this means after Monday's appointment I would come in for a checkup in 3 months, then six months, then yearly for a couple of years? Is that what is next?". At this point if she had hung up I wouldn't have blamed her. But I'm sure she has been through this before and has gotten my reaction before.

After hanging up, the totality of what she had just told me hit. It hit hard. Harder than I imagined it would hit and harder than anything has ever hit me before. Even the initial diagnosis didn't hit me this hard. I starting crying pretty uncontrollably. It was hard at first to tell people because they couldn't hear me from all the crying.

To have this anxiety lifted unexpectedly (since I wasn't expecting a call either way) was amazing. All the stress of the past four months to be suddenly swept away almost made me collapse.

The past week was a tough week work wise. But I noticed by the end of the week that I felt better and had more energy than I've had in about 2 years. It was the first indication that things might be good inside.

Now my task will be getting back to a new normal. I don't want to go back to just normal as I want to remember what this felt like so I do things differently. Not radically different, just remembering what I'm capable of getting through and applying that to the new challenges that will come along. But I'll probably also get back to normal in that I will quit pontificating about life's challenges and just move on!

Waiting - 8/20/2009

It is 7:40am, waiting to leave for my PET Scan at 9:00am and I don't want to go. I'm not scared of the PET Scan itself, I just want this to be over. Each day closer to the scan I've become more anxious. Part of this is that I want to make sure I do everything possible to have a good scan. There isn't really a whole lot I can do. No food 6 hours before and no strenuous exercise 24 hours before.

During this week I've also had a positive. My hair is starting to grow back. Each morning I look and more hair is on my head. Yeah, this can be considered vanity. Too bad. As I've been pretty consistent so far with my mantra... "I want my hair back"!

Also, I've been drinking Kefir, which is a yogurt type smoothie. It helped get my digestive tract back in line. I was still having heartburn and indigestion 3 weeks after the last treatment. Drinking coffee and fruit juices tend to mess with my digestion, so I've also held back on those.

After my last treatment I had a lot of positive comments from people about being done with cancer. While the sentiments were good, I still had/have the feeling of "...yeah, but it isn't quite over". Do I think the results will be good on Monday? Yes. But I still won't know until then.

What I figured out though is the following:
When you have it, you have it. When you've had it, you never want to have it again.

Basically, once the diagnosis is made, you have it. You go into fight mode and just charge ahead with treatment. But once treatment is over, a realization feeling kicks in, and you never want to go through this again. So my anxiousness is praying/hoping/wishing that the scan results are good. That the doctor Monday says we are going into surveillance mode. Even though surveillance mode still means they are watching to see if the cancer re-surfaces, at least it won't be, "....oh we need to do more surgery or treatment".

My fingers (and arms, and legs, and whatever hair I have) are crossed!

The End of Chemo


Last Friday was my last chemo day. What a psychological boost to know it would be the last infusion. The 4th cycle didn't seem to be as hard as the 3rd cycle, but I'm wondering how much knowing it was the last one helped. I also finally got into a routine of taking the Prilosec and Compazine pills right away even before feeling any indigestion/nausea. On the last day Melissa brought cupcakes to the treatment center, a family whose father is going through treatments brought tote bags with goodies, and when I was done the nurses gave me a coffee cup with "yippee!" on it. Nice little festive atmosphere. The nurses wanted to "celebrate", but I was ready to go. I stood up and said thank you to the nurses, wished my fellow patients good luck, and left as quickly as possible.

Friday night I had a moment when thinking about the treatments that was surreal. It was a moment where I realized I had just gone through 4 cycles of chemo. It didn't seem like it actually happened, although I definitely know it did. I think I just approached the chemo in a "task" way, that it wasn't until the end that I saw the totality of the treatment.

So I was asked what I learned from the experience.
First, chemo sucks.

The treatment for testicular cancer takes up about 1 1/2 weeks each time. One week for the actual infusion, and about 4 more days of exhaustion and indigestion/nausea. The first couple of days of infusions you can still do some work, but by the end of the week concentration is hard and you are worn out. It is good to be in tune with your body and vigilant in taking pills when you need them.

Having a catheter stuck in your arm for days isn't painful, just a constant reminder. You also are sensitive to anything getting near the catheter and taking a shower becomes problematic.

Bone/Skull pain (a reaction to the Nuelasta shot) has to be watched for even 12 to 14 days after the shot. It is important to catch this pain at the very beginning and remedy it before it takes over (one Aleve and one Vicodin). This is the absolute worst pain I've ever felt. But it only lasted about an hour.

The nausea can be kept at bay with the Compazine. It is the indigestion and lack of appetite that is a constant companion and for me the worst part of chemo.

Being exhausted isn't great, but sleep is nice, so for me this was the smallest issue of chemo. I just had to allow myself to take naps.

Staying hydrated helps, but is a little difficult. By the end of the treatment week, there is a semi-metallic taste, so liquids start to taste different. Also, constantly going to the bathroom gets boring. This also contributes to the bloated feeling.

Sensitivity to smell, depending on your level of OCD, can be irritating. At first you search for the offending smell only to find out you are the only one smelling it. At some point you just have to accept that the smell is not really there.

Appreciation for woman-kind. Chemo for a quy gives a little clue of what women must go through month after month. The bloating and cramping and smell sensitivity. How in the world could someone do this month after month after month?

Beyond the "technical" what did I learn?
In an odd way I learned that there is plenty of time for everything. Right before this started I was worried about how I was going to get all the work I needed to do done before the end of the summer. Not only did I finish most of the work but also went to a lake for a week and did chemo treatments.

I also learned to receive gifts (well-wishes, support, baklava, trips, rocks, dirt, cookies, bath supplies...) without the need to reciprocate. To accept the genuine outpouring of help and love without trying to keep some sort of balance or tote board. This is a time when people desperately want to help and it is important to let them.

The support group goes through mental stress while the patient goes through physical and mental stress. But I think it is worse for the support people. The patient knows minute by minute what is going on and is dealing with all that is happening. For loved ones, they get to watch and worry. And unless they have gone through something similar, cancer is such a big word that the worry level matches. Putting up a good front ("I'm fine", "I'll be okay", "It's not a big deal") probably really doesn't help the people who are watching this happen. Trying to describe what is happening can be hard sometimes but I think it helps those watching that while unpleasant, this can be dealt with.

Your closest support person is going to go through hell with you. Tyler has had to witness the lowest lows and in excruciating detail. The moodiness, the skull pain (screaming), the lack of appetite, the exhaustion, vomiting. So a lot of times it is the closest person to the patient that actually needs more support from the group. The patient has nurses and doctors in addition to friends and family. The support person has to pick up extra mundane duties (walking the dog more, chores around the house, etc.) while being worried and concerned.

Your 5 year plan never tends to work out exactly how you planned. I had forgotten to plan cancer in my life plan (silly me). But you either deal with the bumps or you mope around. Your choice.

Own your pain. I was told this in the beginning, even before surgery. Trying to put up a good front constantly is counter-productive. In a short time you will have had surgery and chemo. This isn't a cake walk and it is okay to sleep and feel miserable. Many times I would get to the point of wanting to whine and then of course I would meet the guy without a bladder or lung, the person going through chemo and radiation, the person that has been dealing with cancer for years. But it is okay to have those moments of "this sucks". Because while there may be other people dealing with even bigger issues, there are others that aren't. I think comparing myself to those dealing with the bigger issues was a way of keeping my resolve to keep pushing through.

Going forward:
I have a PET scan scheduled in about 5 weeks (August 20th). Ahhh! To just know that I don't have to do chemo again in a another week gives me great joy. I'll start to feel normal again and can sustain that normal feeling. The PET scan will show how well the chemo worked and from there I'll go into a surveillance mode. My challenge now is to not really go back to "normal". What is the point of going through this if there is no positive upside. The challenge is to remember all the good things that have been shown to me. So, keep the gifts coming! ;-). And by the way, the "cancer card" is a punch system, not a time based system. You get to use it a certain number of times over your life. Just because chemo is done doesn't mean I can't still say ... "well, I have/had cancer". Okay, maybe this isn't true!

So my next post won't be until the PET scan results come back. I could post it now because it is going to show everything is fine!



I'm now at Priest Lake in Northern Idaho. So I guess I got through my 3rd cycle. The weekend was tough, but again, by Wednesday I was feeling better. My appetite was still slow to return, but is back again.

The lake is beautiful and we have been out on the water a lot. Trying to learn how to water ski again. I had one night where fatigue set in and slept for a couple of hours. Other than that, getting work done and enjoying the lake.

The MRI came back negative. They did find a tiny foci that may explain some of the migraines. But I'm still trying to prepare myself for the skull pain from the Nuelasta shot (if it happens again). The doctor said that 12 - 14 days is not uncommon for the skull pain. Also said to take an Alleve and Vicodin the second I start to fell pain.

There is still some numbness around the incision from the surgery and the scar is still healing. This is two months after the surgery.

The most important thing I'm doing is remembering to drink plenty of fluids.

Next Monday starts the fourth cycle. Deep breaths. I'm just preparing myself to feel bad but will also be counting down the days to my last treatment. Almost there!!

3rd Cycle - What is that smell?


I completed my 3rd cycle last week and it looks like there is a cumulative effect. I lost my appetite for food though tried to drink fluids and eat. Not really interested in dinner. Friday, Saturday, and Sunday was nothing more than exhaustion and digestive issues. I slept a lot and pretty much felt miserable during the weekend. I popped a lot of anti-nausea pills. Mainly it felt like whatever I ate and drank just sat on my stomach. Monday morning I'm feeling a lot better and was probably due to eating dinner Sunday night.

I also have a heightened sense of smell. I smell dirt that Tyler doesn't notice. Coffee smells bad. I feel like I want a shower constantly. Just the drugs messing with me. I'm hoping this sensitivity goes away in the next couple of days.

Today is my Nuelasta shot (3/4 strength) and my head MRI. The MRI is to satisfy the outstanding question of "why scan my mid-section and upper body, but not my head". I honestly don't want to know the results but I'm sure they will be fine. Tomorrow is my doctor's appointment and then off to Idaho on Thursday.

Last week was also a fairly busy business week which may have sapped my energy also. For the Idaho trip, I made sure I had the location/directions to the local hospital and checked up on what I need to take my prescriptions on the flight. Hopefully everything will be fine and will get some rest. Of course it looks like I will have internet access at the lake so of course I will do some work.

Basically, for me, the 3rd cycle was the one that showed me that I really wasn't going to do this like a cake walk. I'm trying to summon up the courage for cycle 4 and will be overjoyed when that is done. I guess this is the "fight" portion of treatment.

Migraines and more


Started to get a headache in the afternoon that turned into a full migraine by 7pm. Tried taking a Vicadin and aspirin. Neither made any difference because within 15 minutes I was throwing up. This is 14 days after my last chemo. I had the same thing happen about 12 days after the first cycle of chemo. So I don't know if this is really related to chemo or just a lucky coincidence that I get food poisoning between chemo treatments.

Of course I'm dreading next week (3rd cycle). I just need to put myself in a better mindset. Last night didn't help, but at least by the end of next week I'll only have one more cycle to go.

At this point, the only thing really bothering me about the surgery is the scar. It is almost fully healed and I've now been to the gym twice. After the gym the surgery area (scar and upper left leg) begin to feel sore but not to bad.

Still amazing that all of this (surgery and chemo) has happened in 2 months, since the surgery was April 20th.