Seven

7 more radiation treatments left and 12 more days of 24/7 chemo left. Then at least a 3 week break. :)

My suspected peripheral neuropathy turns out to be a different side-effect called hand and foot syndrome.  I do not have it very bad and my feet are not affected. I put Traumeel lotion on my hands and wear cotton gloves to sleep and that seems to work very well. I did notice another side-effect from the Traumeel, my hands are very smooth and soft!

The doctors and I seem to have some of my pain and discomfort tamed down a bit. Preparation H lotion and suppositories have made my bottom feel better. For the past few days I have been taking about 2 – 3 Percocets a day. I also continue to apply Miaderm and Traumeel lotion. Hopefully the Preparation H can do the trick by itself, so that I would not need to take the Percocets as often. I believe that the Metamucil that the doctor recommended helped to slow down the frequency and increased the quality of my bowel movements. They are still very difficult, but there has been some relief!

Every once in a while I feel some nausea and I am a little fatigued, but no more fatigue than I had when going to work and school full-time.

I might not do much if any biking for a while, I have not tried the bike for about a week now.

Excluding the above mentioned problems I am feeling real good and have been sleeping and eating well, along with going to work every day. Well, minus 1, I did not go into work on Monday, but I was able to remote into my work computer and put in some hours.

Peripheral Neuropathy

The chemo has finally caught up to me. I have noticed a side effect that would be directly related to it, other than the fatigue that would be related to it and the radiation. I have peripheral neuropathy in my hands. Thursday night I thought my hands were sore from washing them all of the time. The next day I realized it must be the neuropathy. They are sore, red, and a little swollen. They are also sensitive to ‘rough’ things, such as opening a water bottle, medicine bottle, etc.. I started putting Traumeel on my hands and wearing cotton gloves when I am handling stuff and sleeping. The Traumeel seems to have helped a lot. I am going to talk with the doctors tomorrow about it, and see if they have any other solutions.

My bowel movements have slowed down and the stool is more consistent. It still hurts quite a bit to go, but at least it is not a dozen times a day. I slept in a lot this weekend and did not ride at all. I should still be able to ride though, just have to time it right, and go for short rides.

Email notifications

I have added a line at the top of my post. Where is says ‘Email address..’ and has a Submit button next to it. If you put your email address in there and hit ‘submit’ the blog will send you an email when I post. This might be easier than looking at the blog to see if I posted, especially since I do not post every day.

New treament plan?? Discomfort!!

Karen and I met with my oncologist (Chemo not Radiation) yesterday.  My primary doctor (Dennis Beckworth) is out on a family / personal matter. So I met with another doctor at Katmai (Mark Levandovsky). He was very concerned that the treatment plan they have for me is much too aggressive for my stage of cancer, and my age. He is worried that some of the long term side effects of the treatment outweigh the benefits of trying to kill cancer that very well might not be there anymore. Nothing they have tested has shown any signs of metastasis. He is going to talk with Dr. Beckworth, and Dr. Halligain (Radiation Oncologist) about changing my treatment. He has 3 different approaches he would like to try. 1 – Be finished with treatment after radiation is over. 2- Take chemo pills after radiation is over. 3 -Continue with the current plan (FOLOX), but stop at any signs of side effects. He also insists that the FOLOX (a combination of 3 chemo drugs) will be no longer than 4 months.

I have been having some adverse side effects from the radiation. I have proctitis (inflamation of the rectum) and at times tenesmus (ineffective and painful straining, during a bowel movement). He did tell me that the proctitis would be very probable during radiation. It also could be chronic. (hence  Levandovsky’s concerns about long term problems) I started to take Metamucil, Proctofoam (you can figure this one out!), sitz bathes (sitting in the bathtub), and Percocet. I think it has helped, but will need to give it some time to see if it is effective.  It is very uncomfortable to pass a dozen or more stools per day, especially considering that my bottom is very tender and cracked from the radiation! Ouch!!

Oddly enough biking is not all that uncomfortable. I believe it is because my bike seat has a cut out in the center and my ‘tender’ parts do not touch the seat. I would say that when I am mountain biking I take it easy over the roots and bumps. I prefer to ride my road bike since there are no bumps and the pavement is nice and smooth.

Side effects

The radiation is starting to have some side effects. It has starting to cause a burn. I have some lotion that I have been using that seems to be helpful. It is not too overbearing yet, but definitely a pain in the ass!! LOLMr. Halligan says it is going to get worse before it will get better.

I got my chemo bag changed out on Tuesday. I think they finally fixed the battery problem with the pump. They changed out the pump and so far it has gone 2 days without the battery going dead, which is way better than the 1 day they were lasting.

I got one of my EOB’s for the radiation treatments, looks like it is $5000 each time I go in. Ouch, for 15 minutes of treatment. Then they do regular x-rays once a week, which I think is adding another $3000. So it looks like $168,000 just for the radiation treatment. The bill so far is at $72,000 with only 2 radiation treatments included, thank goodness I have insurance, even if it is not the best.

Other than the sore bum, I am feeling pretty good. I still have been able to go biking, although I tread a little lighter now.

Done with Friday's appointment

Week 2 done!

I am still feeling pretty good, been biking regularly, although I am not riding to work. Sometimes it actually feels better to sit on the bike than to sit or walk. I think it is because the bike seat is designed so that your sit bones are on the seat, not the fleshy parts.

I have not had any of the nausea that I had early last week. I do think I am starting to feel some of the side effects from the radiation treatment. I am a little uncomfortable after the treatments and my bottom is a little sore. It is hard to tell if it is the radiation or if I am still healing from the surgery, probably a combination of both. I have been using Traumeel lotion that Dr. Halligan recommend for the ‘burn’.

Biking Crescent Lake with the bike club on Saturday. :)

Doctor visits. Week 2

I officially started my second week of treatment, which is actually Tuesday not Monday.

I met with the radiation oncologist on Monday and the chemo nurse practitioner on Tuesday. They were checking up on how I am doing. So far everything has been going well. My blood work looked good. The radiation oncologist says that the ‘burn’ on my bottom should start around the 4^th week, and continue for a week or two after the radiation is over. Everyone is different though, so maybe earlier, maybe later.

I have noticed that every time after the radiation treatment that it sort of ‘stirs things up’ for the rest of the evening. It is nothing horrible, but is a little uncomfortable, which might be more of an issue when I have a sunburn down there.

Greatland replaced my chemo bag today, so I am full up for another week. They time it just right. I started with 500ml and it was down to 10ml by the time it got replaced.

I still have problems with batteries only lasting a day. It gives a little beep when it gets low, and has an alarm when it dies. I have not let it go that far until this morning. The alarm clock went off, I hit snooze, and 5 minutes later there’s another screeching alarm. I pulled my ear muffs back and sure enough the battery was dead. Greatland showed me today that if the hose gets pinched it also lets out the same squeal. So there are no worries about knowing if there is a dead battery or a pinch on the line.

Blizz and Meow go in for their annual checkup tomorrow. Let’s hope they get a better bill of health than I did!!!

Cycling

I had an excellent weekend. We went for a 27 mile mountain bike ride on Saturday, I went for a 32 mile road ride Sunday, and went to see the new X-Men movie Sunday night.

There are still no side effects from chemo and radiation, so I am trying to get some riding in while I can.

Mondays are ‘Doctor Day’ at radiation oncology. So I will be meeting with Dr. Halligan tomorrow, I have made a small list of questions for him.

On Tuesdays they refill my chemo bag. I have had problems with the batteries on the pump. They have only been lasting 1 day, and they should last 3 or 4, if not the whole week. Greatland said they are seeing a lot of batteries coming back, Jeff (the RN) suspects a bad batch. It is not a big problem since he gave me a handful of them and the pump warns me when the battery is low. I let it continue on with the low battery on Saturday, and it still worked right up till I went to bed. I did change it before I went to bed so it was fully charged for the night.

First week of Chemo & Radiation

So far so good. All I have noticed so far is slight nausea in the morning. Many of the side effects will be cumulative though, so I anticipate more problems in the coming weeks.

My concerns over Blizz (the cat) were true. He likes to sit on my lap when I work on the computer. I had sat down without a shirt, and he bit into the piece that goes into the port. I managed to get him to release without causing any damage to either the port or the cat. LOL. Now I know that I have to wear a shirt at all times around the house. I have had no problems with either cat while I sleep. I have a shirt on and I am under the covers.

The pump makes noise every time it pumps. It is not really bothersome other than when it is time to go to sleep. Ear plugs made no difference, so I put on ear muffs that you wear when target shooting and that silenced it up real good. So I get to sleep with the huge ear muffs for the next 6 weeks, oops, now 5 weeks!

Taking a shower is a bit of a challenge since I cannot get the fanny pack with the chemo and the pump wet, nor do they want me to get the area with the port and bandage wet. I put  a bar above the shower curtain rod and attached a carabineer to it. This has worked very well. I went into Greatland to have them put a 60” extension on the pump. This has made it way easier to maneuver around the shower, and extended my range when I have the fanny pack off. I also tried Glad Press-n-Seal wrap last night for my shower (to cover the port and bandage) which seemed to work pretty good. It sticks to your skin better than a person would think.  It is much less hassle than using regular saran wrap and tape.  

The radiation treatments go pretty quick. I put on my gown, go into the treatment room, lay face down on the belly board,  the techs position me, and then they head out of the room. I am getting about 5 seconds of radiation aimed at 3 different locations. Since I am face down, I am not entirely sure what is going on while it is running. I do know that I do not go ‘into’ the machine, like in a CAT scan, etc… It slides me forward towards the machine and then I am pretty sure that it rotates around to the area that needs to be radiated. 

Been biking more lately, bottom has been feeling pretty good. The radiation is suppose to ‘sunburn’ my butt crack, so biking will have to be put on hold again once that happens.

Chemo & Radiation

It is late and I need to get to sleep, so I will not write too much tonight.

Karen picked me up today, and Eric met us at the Cancer Center at Providence. I had my first round of radiation. It went well and I have not noticed any side effects. I will go in Monday – Friday at 2:45 PM, and they will refill my chemo bag every Tuesday. We then met with Greatland and they hooked up my chemo. This will take a little getting used to since I will carry it around 24/7 for the next 6 weeks. Don’t feel any side effects from the chemo yet. Today is only day 1 though.

I hope to write a more detailed description in the next couple of days.