Port removal

I had my port removed on Wednesday. It went very well. The Nurse Practitioner injected some sort of numbing medication near the port, and then she made an incision and removed the port. I had heard that it would be a pretty good tug to get it out. That was not the case, I actually had to ask if it was out since I did not feel a thing. They told me to leave it covered for 24 hours then I could remove the gauze and Tegaderm film (band aid), and could leave it uncovered. I did that a couple of hours before going to sleep. I woke up in the morning and was going to ride to work. I pulled up my shirt and noticed that it had bled some overnight. So I covered it back up and drove to work instead. 

I met with my surgeon. She did an exam, feeling my lymph nodes and a digital (as in fingers) exam and everything was good. So I only have a dentist appointment on Tuesday, and then no more doctors or medical visits till March and April!!!! I will miss seeing all of my healthcare providers though. They are all great people, and some of them I will continue to see outside of the medical field. 

I am grateful for all of my friends, family, and medical personal that helped me through my cancer diagnosis and treatment. :)

Finished with chemo and radiation!!

Karen and I met with Dr. Levandosky on Friday. He felt that I had enough of the chemo and said that my treatment was over. I thought about it for a millisecond, and had to agree! It has been 4 weeks since my last treatment. My neuropathy is much better now, actually it is almost completey gone. I still have an upset digestive tract, nothing bad, mostly annoying.

I am getting my port out on Wednesday. So I am off of the blood thinner till Friday. Then one month of the blood thinners before I can quit taking it. They told me that they will numb up the area around the port, make an incision, get a hold of it, and pull it out. I will let you know how it goes. On Thursday I have a check up with my surgeon June George.

I will be having my follow up colonoscopy and CatScan in April.

I am relieved to have finished the chemo and radiation, it was a long summer. I will continue with my support group and all of my annual check ups. I hope that I will stay cancer free for the rest of my life. It is well worth the battle and would do it again if I had too. I do hope that someday they can find a less toxic treatment.

It has snowed a lot here lately and I have been able to enjoy some snow biking. I am a little out of shape and I fatigue quicker than normal. I have managed 60 miles since the snow hit the ground, so hopefully I can get back in shape and put on lots of miles this winter. :)

Enjoying a break

I am feeling pretty good this week. I did not have my infusion on Monday! :)  My hands and face are still a little cold sensitive. But I have been able to do some biking in the cold, a face mask, goggles, and good gloves have worked well.

I will meet with my oncologist on November 11 to talk about the rest of my treatment. Right now I am leaning on being done with the chemo. If he feels that is not a good idea, and wants to lower the dose of chemo, or change me over to the 5FU pills, I will consider it.

Altering Treatment

I had my 6^th infusion on Monday. After discussing my severe stomach pains that I have after every infusion the doctor prescribed some muscle relaxers for me. They did nothing to help. Since the effects of the chemo are cumulative the stomach pains were worse and more often this time. My neuropathy is worse this time also. I can touch nothing that is cold, or even metal at room temps, and when I breathe in cold air it hurts. I have decided to alter my treatment. I spoke with Katmai and I have an appointment to speak with my doctor on November 11^th about my options. I will either take the 5FU pills, lower my infusion dose, or just be done.

Since my prognosis was real good without doing any of the chemo or radiation I should be in pretty good shape having done all of my radiation and 75% of my chemo.

Over the hump

I did not have a very bad week after my last infusion. I did wake up twice the first night of my infusion with very nasty stomach cramps / pains, but it does not last more than a few minutes. I am sure this will happen every time. My hands and feet have been cold sensitive and tingly, not real bad, but nonetheless bothersome. I sure hope that is doesn’t last forever. I rare cases it does. I am not looking forward to the colder weather since the cold makes my hands and feet hurt. I will be done in the middle of November, so hopefully it will go away soon afterwards.

I have been out biking a few times this week, we have been having nice sunny days, although they are cool fall days.

I will have my 5^th infusion on Monday. I will then be over half-way through!!

A little break

I went in for my infusion on Monday and they drew my blood, as they always do. My white blood cells and red blood cell counts where good. My platelet count was a little bit below their threshold to treat me though. So I did not have my infusion.  It sure is nice to have an extra week off, I have felt great all week, but of course I will be finished with my treatment a week later now.  I will go back on Monday and I should have my 4^th infusion and will be halfway through my chemotherapy treatments.

We had a nice sunny day on Wednesday, so I rode to work. I went for a ride after work and managed to get in 40 miles, which puts me at 1001 miles for the summer on my road bike. I feel pretty good that I was able to get in that many miles considering that I have not been able to ride a lot this summer. Hopefully, next year I can get 2 or 3 thousand.

Blood clot

I had another ultra sound on my neck yesterday and my blood clot is 98% gone! I hope that it stays that way, and should since I am on Coumadin.

I also met with my surgeon for a follow up appointment from my surgery in May. She checked me out and everything was good. It is the kind of appointment I love to have. One in which you wonder why you had the appointment since not much happened, that is what makes it great, no surprises!

Feeling real good this week, rode my bike to work today. My stomach is a little upset, and my hands and feet are tingly and sensitive, but nothing major.  Trying to eat as much as I can while I feel good, since I have lost some weight.

Infusion #3

I had my 3^rd infusion on Monday. I did not have another breathing reaction like I did the 2^nd time. I did have 2 or 3 episodes of very severe stomach cramps. They are nasty, luckily it only lasts for a few minutes, nonetheless it is scary. I am going to ask the doctor what he thinks of it, and if it is something I should be overly concerned about. He did say that if I had another problem breathing after my infusion they will change my treatment plan so that it does not contain the Oxiplatium. It is the chemo drug that causes most of the side effects. My hands have problems for a few days after the infusions. They are cold sensitive, tingle, and cramp up. I was warned about the tingling and cold sensitivity, it is a common side effect of the Oxiplatium. I am also fatigued and nauseated for about a week after the infusions.

Chris, Renee, and Jill were up for a visit from the east coast. It was nice to visit with them. Luckily it was during my ‘good’ week so I was able to enjoy more time with them.

I did manage to get in a good 45 mile bike ride the day before my infusion. It was a beautiful sunny day, and I figured I better go while I felt good, since I would be ‘knocked down’ the next day.

They seem to have my blood clot under control, and I am taking my Coumadin every day. I need to find out when they are going to take another ultrasound to see how my jugular vein looks.

Fundraiser

I would like to thank everyone who attended and contributed to my fundraiser. It was great to visit with everyone and was also financially successful. I was able to recoup all of my out of pocket medical expenses for this year. This will make it much easier to cover my medical expenses for next year. I will not have another $150,000 bill, but my portion will be the same next year.

I would encourage anyone with major medical expenses to consider a fundraiser. I would have never thought of it, but a friend of mine suggested it, and it worked out great. I was very impressed with the generosity of my family, friends, and my employer.

Infusion #2

I have been going in everyday to get my blood checked because of my clot. My numbers look good and I have almost reached my target. I took my last shot of AriXtra this weekend. Now I will continue on with the Coumadin for the next few months. I don’t really mind needles too much, but I had a hard time trying to give myself the shots. I managed to only have to do it 3 times, and had Karen and my friend Ed do for me the other times. It was not into a vein, it went into my stomach.

Just like after the first infusion, I did not feel up to par for about a week. I didn’t take any of the medicines this time and wasn’t as tired, but had about the same amount of nausea. I heard in my cancer group that crystallized ginger could help with the nausea. So I tried it when I wasn’t feeling well, and it made my hurl. Yuk, I really don’t like the taste of the ginger, so I tossed it out.

I did have a problem after my infusion this time though. I left the infusion room to head home and I did not feel right. I decided to walk around the hospital for a bit to see how I was going to do. I went a for a bit, sat down because I was out of breath, got up and went back to Katmai. By the time I got there I was having a hard time catching my breath and broke out into a sweat. There quickly was a gathering of RN’s, Doctors, and Nurse Practitioners around me. They shut off my pump (2 days of the fanny pack after the infusions) and started an IV with fluids, took my blood pressure, etc... All my vital signs looked good. It went away and I stayed for another 45 minutes. I also had some real nasty stomach / intestinal cramps / pains that night. My thumbs also want to contract, and my jaw will hurt if I don’t rub it out before I eat. Dr. Levandosky attributed all of this to the Oxaliplatin that is in the FOLOX chemotherapy treatment. I am going to try some medicine the day before and of my next infusion to try and avoid the breathing problem I had. I also had an EKG the next day to check my heart rhythm, and it was good.

So things have been a little scary lately with blood clots, having hard time breathing, and nasty stomach cramps. I sure am looking forward to winter when the treatments will be over, and hopefully no lasting side-effects!

I have been working from home during the week of my infusions, and going into work the next week. Today I feel real good and should just get better throughout the week. Chris, Renee, Jill, Karen, Rob and I will be going to the State Fair this weekend. I hope that it will be nice and sunny, well at least not raining!!

New problem

I called Katmai on Wednesday because my neck had been a little sore for 2 days. Since the pain was close to where my port is, I was a little concerned. They set me up for an appointment on Thursday morning so they could do an ultra sound on my neck. The tech immediately found the problem. There is a clot in my jugular vein, which is result of the port. I went back to Katmai to see what we were going to do to treat it. My nurse practitioner, Janet Bloch, wrote me a prescription for AriXtra (an injection), with a warning that it could be very expensive if insurance did not cover the cost, and we might do something else if it was a problem. Well, it is VERY expensive. $3800 for 1 month supply, my portion, $1100, and I would be on it for 4 months. So I left the AriXtra at the pharmacy and went back to Katmai.  They gave me a one week supply of the AriXtra that they had samples of and I will take Coumadin pills, which are only $4 for a 2 week supply. The problem with the Coumadin is that I will need to have my blood checked almost every day so that I do not end up with any bleeding problems. I do have to give myself the AriXtra injections every day, so that will take a little getting used to, but only for a week, not 4 months. I am not sure how long I will take the Coumadin pills, probably for a few months.

I felt much better this week and went to work every day except for Thursday, since this whole scenario took all day.

I was able to ride my bike the last 3 days since I have felt better and the sun finally reappeared. Now that I have started my infusions of chemo I quickly noticed that it has slowed me down on the bike. My favorite, riding uphill has slowed way down, and I am unable to ‘kick up’ the pace while riding on the flats. I will just have to wait till next year to have my old biking fitness back. I still was able to do a 30 mile bike ride last night, just took me a little longer.

1st week of FOLFOX

For the first few days after my 1^st chemotherapy infusion of FOLFOX I felt fatigued and nauseated. It was nothing bad, but I definitely did not have any energy and I didn’t care to eat much.  It was not until Sunday night that I felt mostly normal. I have noticed very slight hand foot syndrome. My jaw hurts a bit when I first eat, which is not supposed to be a side-effect, but either way, it is there. I have been working part time from home when I am not feeling well. I hope to work all of this week though. I did not have the energy or desire to ride my bike last week, hopefully this week it will stay dry and I will be able to get some miles in.

I had an appointment at Katmai today, they drew some blood and I met with Dr. Levandovsky.  My blood work looks good and overall I am doing well. I have another appointment next Monday so that they can check my blood again. Then on Tuesday I will have my second infusion of FOLFOX and they will attach the fanny pack with the 5FU for the 2 days after the infusion.

Dr. Levandovsky and I have decided to see how I do without the anti-nausea medicine that I used last cycle. He gave me a new prescription that should not cause me to be drowsy. My cancer support group also suggested that I try ginger for the nausea.

Please do not forget to RSVP to the evite for my fundraiser on August 25^th. This way we can make sure we have enough food, beer and wine!!  Hope to see you there!! I am looking forward to seeing Chris, Renee, and baby Jill.

Chemo

I started my infusions of chemo yesterday. Karen stopped by to visit for a bit at Katmai. I had my infusion of FOLFOX for 3 to 4 hours and Greatland came by and hooked up my fanny pack with the 5FU that I will have for 2 days.

Actually felt a little hyper for a while afterwards, like having an energy drink. Speaking of energy, I have had not had any caffeine for several weeks now. Caffeine can make a person have an urge for a bowel movement, so I quit the caffeine when I had so much pain. For now I have decided to try and stay away from sodas and coffee. Also after the treatment I noticed I was a little pale, my nose was cold, and my jaw would hurt some when I first start chewing.

The doctors have me taking L-Glutamine powder and L-Carnitine capsules everyday to try and help with any hand and foot syndrome I might have. They have me taking 6 capsules of the L-Carnitine a day, the normal dose as a dietary supplement is only one a day. So we (Karen and I) had to find lots of bottles for a 16 week supply. Walgreens had buy one get one free. We wiped out all of the Walgreen stores in town, since each only had 3 or 4 bottles.  I also filled a couple of prescriptions yesterday to help with nausea and vomiting that can arise the first few days after the infusion. One of them, Emend, was $568! My portion was only $50. They told me for my next cycle in a couple of weeks to skip the Emend and see how I do. They have 3 other medicines for the nausea that I can try if I do have a problem. So if I do well without the Emend I could save $100 a month. I would have to say it has worked, I don’t feel too bad.

So this is the beginning of the end of my treatments! Of course I will have numerous scans, colonoscopies, and checkups over the next few years.

Been raining here the past few days, so no biking.

Next course of treatment

Karen and I met with the doctor yesterday. We have decided to do the FOLOX infusion treatments. I will start my infusions on August 2^nd. I will go in and get my infusion for about 4 hours. Then they will hook me up to a fanny pack with chemo that I will wear for 2 days.  This will happen every other week for 8 cycles, so this course of treatment will last for 16 weeks.

I have been feeling much better, not normal, but definitely a major improvement. I have been able to put in a quite a bit of miles on my road bike. :)