Ray’s Blog

This year, Halloween was very different. It’s the first time I have been a non-participant. I received two shots yesterday, one neulasta and one neumega and those things knock you on your ass! Neulasta effects bone marrow and encourages it to produce more white blood cells. Neumega is to increase my platelet count. Both counts need to be high enough so I can get my chemo. I was feeling not so bad yesterday. I was hooked up to my pump and at work. But after those shots, BAM! Taking ativan is helping me get through it but I’m just exhausted. I took four hours worth of naps today after getting a good eight hours of sleep last night.

I dragged myself to my in-laws for the kids’ trick-or-treating. All I could do was lay there on the sofa. This will be one Halloween with missing video. I sent Christina out with the still camera instead. I just did what was easiest. This was the worst timing. If it had been one week from now or even a couple of days from now, I would have been fine. I wonder how I’ll be for Christmas? There’s no way to tell. I’m starting my shopping now, and online has never been so convenient or needed. Thank (insert deity here) for this laptop!

Well, I feel much different today. More like crap than not. My symptoms are increasing in severity and some new ones are cropping up. My feet feel like they are asleep all the time making it difficult to walk. My hair is still coming out. I might need to shave and wear a hat. I’m having nose bleeds and I was super sensitive to the cold and rain today but then it was really cold, about 39 when I was released. I saw my primary physician today and he agreed that we still need to watch for spasms as the chemo accumulates in my body but we will respond reactively instead of proactively meaning if I have a spasm, then they will up my meds. Which is probably OK because if I do have another spasm now, it should be manageable and not severe like previous ones. The accumulation is gradual so it should be fine. I just took an ativan to help me sleep, to put myself out of my misery. So probably won’t be saying much more. Will try to work tomorrow. The bad days seem to be Thursday after disconnect, which will be 1:30 for me, and Friday is the worst. I’ll keep you updated. Maybe I can just dance the side effects away. We wish you nothing but: LOVE, PEACE AND SOUL! It’s the SOOOOOOOOOOOOUUUUL TRAIN!

I smell like chemotherapy. I can’t really describe it but the closest I can think of is old man smell. It seeps out of my pours, is on my breath, in my urine, my feces, and my flatulence. It’s always there to remind me. I can’t wait until it’s gone.

Speaking of old men, and the old in general, they make up most of the people I meet in the infusion room and I think they’re all tough as nails. I’m only 39 and these people are going through the same if not worse than I am yet they’re 60, 70, 80 or more. And they all most likely have more complications due to their age (other diseases besides cancer). Again, I’m glad to be doing this now, when I’m young and strong and otherwise healthy. Oh I hope this is a trade-off. Get it now so I don’t have to get it later. That would be nice.

Tomorrow is my last day of feeling good before the next chemo treatment. I know I should be thankful that this therapy may be saving my life and I am but, at the same time, I dread it because of how it makes me feel, not to mention the constant fear I’m in because the spasms could always return. But I am looking forward to Monday. Monday will be the day I almost feel like I don’t have cancer. And it will probably be the day I feel my best until after I finish my treatments sometime in March. Meaning, it’s only downhill from here. The more they hit me with chemo, the worse I’m going to feel. Again, I’m extremely grateful, I just wish there were an easier way.

Surprise! I bought a Ziggy tennis glass on eBay. We needed one of our own.

To ignore my mental health during this crisis would be foolish and to the detriment of my physical well-being. This blog has helped a lot with that as well as all the support I receive through friends, family, and colleagues. But now, as crises hopefully have come to an end and the numbness subsides, some psychotherapy might come in handy. So I’m seeing someone weekly for a while and pleased that it’s covered by my health insurance.

That was a funny call. In order to have it covered, you need to request it. They have a special number to call just for mental health and the first step is letting them know why you need it. You know when you call in sick for work and you want to make sure you sound as sick as you really feel, so you might cough more, or get more nasally, or sigh a lot, just sound sicker? I had that same feeling when I called the mental health hot line. I had to sound like I really needed this - I needed to sound crazy.

I think I stuttered more, paused a lot like I couldn’t think or form a sentence, and tried to sound frail. I didn’t rant or say anything crazy but I don’t think I had too as they bought it, hook, line, and sinker. They agreed - this guy needs help. One question did scare me though. Before they agreed I needed to be seen, I was asked if I was suicidal. What should I say? I’m not suicidal but could my therapy being covered hinge on the answer?

I was honest and said no which was fine since they covered me anyway. Maybe they were concerned I was going to do it right then while I was on the phone. Don’t you pre-mediate and plan those for a while? Would that really be in anyone’s plan? Maybe all my sound crazyisms added up to me sounding suicidal? Well, maybe it did. So I guess I did a good job at sounding as crazy as I feel.

Last Thursday there was a film shoot right in front of our house! I don’t know all of the details because I didn’t want to interrupt and I had to get unplugged, but as you can see from the photos, they were doing some sort of period piece and they chose our street as their historical backdrop. How cool is that! I mean, we love our neighborhood and living in an historic house, but assuming these guys really did their homework to find just the right location, for them to wind up directly in front of our house instead of any number of other streets in Poughkeepise is just incredible. Although our house is not in the shot as the camera was pointed down the street. I did manage to find out that this scene is set in New Haven, CT so somehow we pass for that. That’s our walkway and our pakisandras with the horse Mike put there to protect his cement work. I was outside for some of the takes and the story has something to do with a man who created a machine (the box in the photo) that made others call him a communist, or something like that. The guy leaning on the tree is the director. I have no idea when or where this will ever be shown but I’ll be on the lookout for it. Let me know if you see it!

Last Thursday after I was unplugged from the pump Christina and I decided to go to Busy Bee for lunch. It’s close to the hospital, has really good food, and a nice atmosphere, so, a small celebration for completing the first session at home. Have you ever had their appetizer of portobello steak fries - yum! We had a great time but in what has become a string of new-found problems stemming from my chemotherapy, in an inattentive moment, I lost my grip on my glass and watched helplessly as it smashed to bits on the tabletop. Another tangible sign that chemotherapy is a bitch. It’s a combination of my sensitivity to cold in my extremities that makes my hands feel like the are asleep, plus the involuntary contortions my hands sometimes decide to make, and some tiredness, lightheadedness, and maybe a little fatigue thrown in. If I didn’t know it before, I know it now - this is for real - and I can only image it’s going to get worse.

OK. Now hair is falling out of my beard so I may have to start shaving soon. Maybe it’s time for a change there anyway. I just don’t want to look like a checkerbeard.

When I leave the cancer center after getting all of my chemotherapy drugs, they send me home with a pump that continues to infuse 5-FU into me for 46 hours. Here is what the pump looks like without its vinyl case.

You can see that the display is indicating low, this happens when the level of 5-FU goes below 5ml. The total volume is 96.6ml given at 2.1ml/hour for 46 hours. The vinyl case allows the pump to be strapped around your waist or put over your shoulder. At night, I have it hung from my bed post. It’s tricky when I sleep because being hooked into the pump means I can’t roll over the same way twice otherwise I’ll wrap myself up in the tubing. Of course the biggest fear I have is that somehow the tubing will get snagged on something and be pulled out of me which would be just a complete mess. Hasn’t happened yet (knock on wood).

In this next photo, you can see where the tube comes out of the portacath and there’s some padding under the tubing to help keep the needle - which is perpendicular to the tubing so together they make an “L” shape - in place and the whole thing is held together, and protected from water, by that sticky plastic covering. I was told not to shower while I have the pump connected or at least not to get the portacath wet. Actually I was told I should still clean my private parts, although I thought that was anal retentive of them. You can also see, if you can avoid staring at my nipple, the tape I have affixing the tube to my chest which is a precaution I take just in case that tube gets pulled, it will pull there first and either stop there or at least warn me something bad is about to happen. Luckily there is a lot of slack in the tubing and, so far, I’ve been lucky.