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.