Memorial Weekend

Had a great weekend of mountain biking, hiking, and camping. Wayne, Rose, and I rode part of the Lower Russian River trail, and hiked to Fuller Lakes on Monday. Biking and hiking feels good, if anything I am a little out of shape from laying low the past month.

Keep me in your thoughts and prayers.

I will post an update late tomorrow night.

Photo Scavenger Hunt / Camping / Bills

The bike club had a photo scavenger hunt tonight. We get a list of things to go find and take photos of. The group with the most points wins. It was a beautiful day in Anchorage today, so we had a real good time riding around taking pictures. My bottom has been a little sore since riding last week, so I have not been out on the bike. I did take the bike tonight though and glad I did, I sure enjoyed the riding and the company. Afterwards I rode out to Point Wornzoff and back, I got in 24 miles. Wish I could take longer rides, but that was good enough for today.

Camping and light hiking this weekend.

I filled out finacial paperwork with Providence last week. I received my letter back today and they are going to give me a waiver of 40% (of my out of pocket) for services provided by them. This will be very helpful since I have been and will be missing lots of work to go along with all of the hospital bills.

A little anxious about Tuesday, but I will go in there, start my treatment, rid my self of any possible cancer, work through the side effects, and move on.

Hope everyone has a great Memorial weekend!!

Tattoos!

Today I met with Dr. Halligan. (Radiation Oncologist). Karen came with me. They put me on a belly board and ran me through a Catscan. This was to get me set up so that they would know exactly where to aim the radiation. They put very small tattoos on the side my hips, on my lower back, and one just where the butt crack begins. This will be used for reference points. They were also checking to see how I fit into the belly board. (It is something I will lay face down on every time they radiate me.) It provides a place for everything above my waistline to ‘fall’ into while the machine is on. This way they will radiate as little extra as possible. Most of my bowels, etc… will be out of the way. My bladder, rectum, prostate, and lymph nodes around the rectum, and such will get x-rayed. They are after the rectum and the lymph nodes. Mr. Halligain did mention that I had the best ‘placement’ on the belly board that he has seen in 4 years. Meaning that everything they would want in the belly board was in the belly board. This will save some extra body parts from getting radiation.

Then we went to the Chemo Infusion floor. They used my port for the first time to draw some blood. Since I will not be sitting down for an IV drip for my chemo they referred me to Greatland Infusion Pharmacy. They will come by once a week while I am getting my radiation treatment to refill my chemo cassette. I will wear it a fanny pack, over my shoulder, or in a backpack, (my choice) that contains a pump, and bag with the chemo. This will be on 24/7. I cannot unhook it. When I shower it needs to go outside of the shower, but still be attached to me and my port. One of my cats is a bit of a chewer, so I think I will have to sleep with a shirt on and keep all of the hoses out of site.

I will have radiation 5 days a week for 6 weeks, and chemo 24/7 for all of the six weeks. After the radiation is over, I will go in every other week, for 5 months. I will sit in the infusion room for this, I will wear the fanny pack with chemo for 48 hours, and then come back again 2 weeks later.

My treatment will begin the day after Memorial Day. (May 31^st) I will go in at 2:30 PM at the Cancer Institute at Providence. That day I will find out what times I will be coming in for treatment. I had thought I wanted the earlier slot, but again today I proved I am not a morning person, I was 10 minutes late for the appointment. So I will have to schedule an afternoon session. They did say it was easier to fill spots later in the day, so that will work for me.

Karen and I went to Office Depot and bought a daily planner, business card holder, and a couple small notepads to help me keep organized. All of the paper work is getting to be a bit much. Then we met with Rob and had lunch, and off to work for the rest of the day.

The Colorectal group that was suppose to meet once a month was cancelled last September. Too bad. I did go to the same meeting I went to last week. They meet every Tuesday. I think I will continue attending, we had another good session, and got updates on how everyone is doing.

I did meet with June George (the Surgeon) on Monday. Nothing much to report there. I will be having annual Catscans and Colonoscopies until everything keeps coming up ‘clear’, then we will taper off some. Since it was so very close to my anus, she said a simple digital exam will actually be very informative for her to check the original site.

I also had received a jury summons last week. Doctor George signed me off of that, so good timing for me. Jury duty would have been a lot better than cancer, but what the heck, got out of it for now.

Cycling

I got to ride my bike for the first time since May 2^nd. I rode with the bike club, we did 18 miles. Everything felt good, was a little anxious at first. The last couple of weeks were probably the longest I have been off the bike for several years. Hopefully I will be able to get a little riding in during radiation and chemo. We shall see.

Today is Bike to Work Day in Anchorage, so I luckily I was able to get out my trusty old commuter bike and pedal to work!

Meet with the surgeon on Monday for a checkup, and meet with Dr. Halligan on Tuesday to start 'setting up' for my radiation.

Dentist and a Haircut

I went to the dentist today for a cleaning. I had a wisdom tooth with a cavity. They told me about it a year ago. I had decided that I was going to get it pulled instead of filling it. Well, I never did get it pulled. Since I will be starting chemo and radiation in the next couple weeks, we decided to get it fixed and put the filling in. They also gave me an extra soft toothbrush and some prescription toothpaste. Not that is for cancer patients, but it has extra fluoride and helps with sensitive teeth. Since I very well might have a dry mouth and mouth sores, they felt this toothpaste would be a good idea.

After the dentist I went for a haircut and a beard trim at the Barber Shop on Northern Lights. When she was finished she said it was ‘on the house’, and that people going to chemo and Iraq get free haircuts. I tried to tip her $10, but she would only take $5. It is real nice to meet people like her! :)

Support groups

Tonight I went to a cancer support group. I wanted to meet up with some people who have cancer, where I could talk freely about what is going on in my life, and to hear what is happening in their lives. I have been very comfortable talking with my friends and family, but talking with others that are going through some of the same things is very therapeutic.

There were 2 counselors, a lady who was ‘finished’ with her treatment/cancer, and 3 of us who were recently diagnosed. It was very good. I learned some ideas that they had to help cope with the radiation and chemo. It was really good just to talk with and hear about other people who have cancer, so that I don’t feel I am unusual or quite as alone. I learned that we all have some of the same problems other than the cancer, like the roller coaster of good news, bad news, all the tests, pokes, prods, how family, friends react, finances, etc….

One of the counselors is going to give my information to another person who had rectal cancer so that I can talk to them. We should have plenty of things to talk about! I do have a different group that I want to attend that meets only once a month, but is specific to colorectal cancer, so I am excited to attend that meeting next week.

Came out of there feeling real good, happy I went, hope to make some new friends. Thanks to my history with alcohol abuse I did not have any anxiety about going to the meeting, and know that it can be an important part of my recovery.

I am feeling physically and emotionally well today.

05/16/2011

Had my chemo 'class' today, Karen came with me. We did not learn a lot of new stuff today, but was still good information to learn/review.  I got some pointers on how to deal with some of the side effects. Baking soda and water for mouth sores, a soft tooth brush, Imodium AD for diarrhea, of course plenty of liquids, they say some exercise to help with the fatigue, a couple of prescriptions to fill. They tell me to keep close attention to how I am feeling and let them know so that we can keep me as comfortable and healthy as possible.

All of the doctors so far have said I will not lose any hair, but she suggested that I will. I guess we will see what happens. I don’t have a lot to start with, but the beard may suffer!

I got the results of the PET scan, and again it shows that the cancer did not metastasize, so that is another great sign!! :)

It looks as though I will have my chemo 24/7 for the whole 6 months. The ‘apparatus’ that will be attached to the port in my chest that will be delivering the chemo is called a cassette. The cassette will be refilled once a week during the radiation with F5U. After that I will be giving 3 different types of chemo to finish out the 6 months. I don’t have the name of them handy right now, but will post later.

That’s it for now.

05/15/2011 CLAC day 2

Well, I woke up feeling great today. It is funny how that works after feeling miserable Saturday night. I am a little suspicious of a garden burger that I had at one of the rest stops. I heard they may give a person gas, and I am thinking it may have cramped me up. Today was the best my bottom has felt since the surgery, almost normal.

I am going to a Chemo class Monday afternoon, 2:30, Katmai Oncology Group, Providence hospital.

I will give another update tomorrow on what new stuff I learn….

BTW, the Blue Man Group was GREAT!!

05/14/11 CLAC

Made it to Talkeetna. We had a great day to ride and everyone had a safe and enjoyable trip. I officially changed from a ride leader to a SAG driver this morning. I didn't end up having to give anyone support, but did transport some gear for my friends.

I am noticing that all of the physical and emotional stress is starting to make me tired. I had 2 naps today, and was pretty uncomfortable after dinner tonight. I took one of my daily sitz bathes and am now laying in in bed and going to watch Night at the Museum. Probably wont be the night owl that I usually am. Wish I could hang out with the crowd, but I need to relax. Looking forward to sagging again tomorrow on the ride back to Houston. Then to the Blue Man Group with Karen and Rob Sunday night!!

Thank you Karen for checking on Meow and Blizz to make sure that their food trays are working properly.

updates

Sorry about the lack of updates yesterday, the blog site was not allowing any updates because of maintenance. If you did have any problems signing up for my blog yesterday, that might also be because of the maintenance.

05/13/11

I had my surgery today to put the port in my chest. I got up early 6:30, which is very unusual for me, but managed. Karen picked me up and we made it to my appointment at 7:30. Eric was also there to wish me well. Thanks Eric. I spent over an hour getting prepped. Vital signs, IV, etc…. The Nurse Practitioner came in and explained the procedure to me. They gave me 2 Valiums, and rolled me into the surgery room, which is a bit chilly by the way. They put me on the surgery table, I met everyone, they shaved part of my chest, and well, that was it for my memory. Then I woke up in recovery. 

They gave me the phone and I called Karen so that she could come and pick me up. She brought me my requested Americano, Yummy after no coffee for 2 days. We talked to the nurse about my dressing, and aftercare. We went to Fred Meyers to fill my prescription for antibiotics. We went out to eat, dropped by Karen’s office, and then back to the hospital to change my dressing since it was ‘all red’. We called the hospital and they wanted to change it so that it would stay nice, clean, and sterile. On Monday I will be able to take it off myself. My neck is a little sore, but nothing too bad.

I am going to provide sag support for the Clean Air Challenge this weekend. I was supposed to be a ride leader, but need to stay off of the bike right now. 2 surgeries in less than 2 weeks, and one on my bottom, I surely don’t want to sit on my bike seat!! 

I am grateful for my good friends, and a wonderful sister that has been very helpful through this ordeal. It is hard for everyone.

05/12/11

I had my PET scan tonight, everything went well. They flew up the radioactive isotopes from Seattle during the day, and it showed up about 2pm, so Providence Imaging called and had me come in early at 3:15. I went into the ‘isolation’ room and had to drink two glasses of barium.  After 10 minutes, she came back and then put the radioactive isotopes in my IV. At this point I was radioactive, so they shut the door, shut off the lights, and I had to lay back and relax for an hour. Since the PET looks for cell activity I had to stay still so that my muscles would not ‘soak’ up too much of the radiation, since we were not trying to look at my muscles. If my lymph nodes have any cancer, they would ‘soak’ up the radiation, and show any possible spread. They are not expecting anything, but wanted to take a look.

After the hour of relaxing I went into the PET machine and they gave me a CAT scan, and then the PET scan. I had to lie perfectly still for half an hour while it made its scan.

After the scan it was suggested that I avoid people, at least close contact for 6 to 8 hours. So I went out on Turnagain arm and went for a nice little hike, and found a good place to lie down in the sun. Then I went home, worked on my 4Runner for an hour, by this time I was ‘Safe’. I did not want to go home right away since my cats think the best place to hang out is on my lap and snuggle next to me.

05/12/11

I spoke with the Radiation Oncologist today. (John Halligan) He is very positive about my outcome, and another compassionate and concerned healthcare professional. Again, like the other Doctors I have spoken with, I am having such a good prognosis since I went in as soon as I had signs of a problem (blood in my stool). If I had waited much longer, since it was in my rectum, and very close to the anus, I would have been looking at a colostomy for the rest of my life, more aggressive adjunctive therapy, and a less optimistic prognosis. So please, if anyone’s body is trying to tell you something go in and get it checked out, a little embarrassment is well worth the alternative.
They are going to wait for me to heal up from my surgery and we are tentatively planning on starting the radiation therapy the week after Memorial weekend.
I have several appointments beforehand for prep work. I will have to go into have some tattoos to mark the areas that they will aim the x-rays at. I have my PET scan tonight, they will put in the chest port tomorrow, and chemo classes on Monday.
There are some possible long term side effects, but he says they are NOT likely since I have not had any surgery in which they actually opened me up and I am young and healthy. Some of these might be, having to urinate more often, more bowel movements, I will stay fertile, and ‘everything’ will still ‘work’.

day surgery location

My surgery to place the port will not be at Providence Day Surgery, it will be at the Heart Institute at Providence Hospital at 7:30 am, 05/13/11

05/11/11

As you know I had my surgery on 05/02. The surgery went well, with no complications, and I am feeling great. I had my follow up appointment on 05/09. The surgeon and I had expected that surgery was all that I was going to need. It turns out that the cancer was a little more advanced than expected. It is at stage T2. It still is localized and did not spread which is very good. So as a precautionary measure they want me to have chemo and radiation therapy.

I met with the chemotherapy doctor yesterday. I will be having radiation therapy 5 times a week for 6 weeks, along with chemo every day. Then I will have chemotherapy every 2 weeks for 6 months. He says I will keep my hair, but can expect to have fatigue, a little nausea, and foot and hand neuropathy. (cold hands and feet). They are going to put a port in my chest on 5/13 (7:30 am Day surgery Providence Hospital) that I will have for the full 6 months. That is how the chemo will be administrated. I will have an apparatus attached to it 24/7 that will be giving me the chemo.

I was scheduled for a PET scan today, but they just called and rescheduled for tomorrow, 4:15pm at Providence Imaging.

I will also be meeting with the radiation doctor tomorrow to talk more about the specifics of his treatment plan.

My prognosis is still very good since it is an early stage cancer.

05/10/2011

Just testing this out to see if this will work to keep everyone informed as to how I am doing.

Jon