Thursday, December 31, 2009

12.31.2009 - Looking Forward To No Seizures

I am looking forward to a year of no seizures. We are still adjusting the anti-convulsant medication and the addition of Lamictal has helped. I had my last appointment with my neurooncologist for the year.

Avastin seemed to be a drug free of side effects, but that may not be the case. My blood pressure has been elevated the last couple of visits to the doctor's office and I am usually someone with textbook pressure - 120/80. I never have high blood pressure. I asked my chemo nurse whether any of the drugs I was taking can elevate blood pressure and she immediately replied "Avastin." I will now have to take my blood pressure a couple times a day for a couple weeks and see if this elevation is going to be a regular thing. If so, I could either continue taking Avastin and possibly take drugs to lower my blood pressure or stop taking Avastin.

My blood counts were all good. I have a five-day round of oral chemotherapy with Temodar to begin this evening. It's never fun, but it's not that painful either. I like to eat at night and you have to take Temodar on an empty stomach. It's only five days though.

Having no more seizures is one of my goals for the new year. It's not like I have control over it though.

Sunday, December 20, 2009

12.15.2009 - A Day in the Emergency Room

My wife and I spent all of 12.15.2009 in the emergency room. I woke up and had a partial seizure and then a migraine headache. I have been having more migraine headaches recently. My prescribed pain medication didn't do the trick. It had been two hours with no pain relief. My doctor wanted me to come to the emergency room as soon as possible. We found people to watch our children and my wife took me to the emergency room at the hospital that my doctor is affiliated with. We have a hospital only three miles away, but that isn't the one my doctor is affiliated with.

Service in the emergency room was SLOW. I guess only those people spurting blood out or who came in via ambulance get fast service. My migraine headache was finally gone after five hours had passed from the time I took the oral pain medication that morning. A MRI scan revealed that the tumor was stable and unchanged. We are trying to work on dealing with the seizures and adjusting medications until I don't have any more break through seizures.

Wednesday, November 11, 2009

11.11.2009 - Good Scan, Yet Had A Seizure

I had a MRI today and the scan went well. No new growth and things would seem to be going well, but I had a seizure recently and that set me back a bit. The doctor adjusted my medication in response to it and I now I can't drive for a while. It is very frustrating to be prevented from driving. This tumor is making me angry. I am sick and tired of problems from this. Why is this thing in my life anyway? What am I supposed to learn from this experience? I think it is time for someone else to take a turn with the evil tumor and give me a break from it for the remainder of my life.

Wednesday, October 28, 2009

10.26.2009 - A Bad Night

Since stopping intravenous chemotherapy, I have still continued with oral chemotherapy consisting of Temodar for five nights every three weeks or so. The last of the five nights from this most recent round was Sunday night and it didn't go so well. Usually, I just experience discomfort from the constipation that Temodar causes and the inability to eat in the evening, which I often do. You are supposed to take Temodar on an empty stomach and wait a couple hours after eating before you take it.

Sunday night, I ate a decent size dinner and then a little later took my evening pills. I always take Levetiraceta (generic Keppra) each day to prevent seizures and I take my nightly dose with Ondansetron (generic Zofran) on the nights that I have to take Temodar to prevent nausea, which almost never happens (the nausea). I took the Temodar when I meant to take the other pills and then when it was time for bed and I probably would have had an empty stomach, I took the other pills.

At 0200 hours, I woke up and felt sick. I hoped it would pass, but it didn't. I went to the bathroom and perched myself over the toilet and vomited. I didn't think that this small error would cause that to happen. I am tired of all these drugs and perhaps it is time to stop taking Temodar. When I went to the doctor's office on Wednesday, 10.21.2009, and had IV Avastin and started nightly Temodar, my blood counts were lower than was expected but okay to proceed. The next visit will be a consult with the doctor an a MRI. How much more chemotherapy, even oral chemo, can my body take?

Wednesday, September 9, 2009

09.09.2009 - The End of IV Chemo

Yes, it is real this is the end of intravenous chemotherapy for me. I had a MRI scan of my brain this morning, as I usually do every eight weeks and the scan showed no new growth or activity in the residual tumor tissue. After I have the scan each time, I always see my neurooncologist and we discuss treatment and where to go from here.

He invited me to do eight more weeks of chemo to bring me to the end of October, but I declined. He invited me to try etopicide in oral form, but I declined. I said I was willing to continue taking temodar and he was perfectly alright with that. The present plan is to do my five-day temodar regimen every three weeks accompanied by one 30-minute avastin session at his office. Avastin is not chemotherapy. It doesn't make me sick, it doesn't make me drowsy, it just helps slow the growth of rapid growth cells.

I was doing five-day temodar sessions each time I had intravenous chemotherapy, which was usually every four to six weeks. Temodar is taken orally before bed. I will need to go into his office to have my blood counts checked every week and a half and we'll see if doing it at three-week intervals works out.

Both Carissa and I carefully considered this decision and prayed a lot about it and we feel it is the right decision. Haven't I done enough chemotherapy? I think so. I should miss less work, feel better, be able to grow my hair back, and spend less time with a needle in my arm.

Sunday, August 16, 2009

08.16.2009 - A Hard Week Post-Chemo

This recent round of chemotherapy came too close to the last one. This week, my hair has been falling out, which always happens with the Taxol, but it usually happens a week or two before the next round of chemo, not at the same time or after. I did okay at work the day after chemo, but on Wednesday, August 12, 2009, I stayed at work for two and a half hours and left to go home for the day. I have needed extra sleep all week long. It has been harder than usual after this round of chemo.

Monday, August 10, 2009

08.10.2009 - Yet Another Round of Chemo

On 08.10.2009, I had yet another round of chemotherapy. One of our relatives that lives in the area watched the kids for the morning and early afternoon while my wife took me to the doctor's office to have chemo. I like to compare chemo to lethal injection. If I had enough of it, I am sure it would kill me. If I were ever sentenced to death by lethal injection, I might just lay there and laugh because I was immune to the poison.

This round came pretty quick after the last one, less than four weeks since 07.16.2009. My blood counts were up high enough to permit it and the schedule generally is a round of chemo every four to six weeks. I am hoping that IV chemo will be eliminated at the two year mark, which would be October 2009. That is the goal that my neurooncologist was aiming for and I know I can make it until then. If he asks me to do more once we get to that point, I think I will decline the offer.

I don't feel too bad right now. I had etopicide, taxol, and avastin and the session went from 0900-1300 hours today. My hair is presently falling out, which always used to happen a couple weeks before getting a new round of taxol. Without BCNU in the program, my blood counts spring back faster. Getting a shot of Neulasta stimulates my bone marrow to produce more white blood cells and helps a lot. I will get that shot next week when I go in to have my blood counts checked.

Thursday, July 16, 2009

07.16.2009 - Another Round of Chemo

On 07.16.2009, I had another round of chemotherapy. I had a MRI the prior day, 07.15.2009, and the results of the scan were that my tumor was stable and unchanged. My neurooncologist was very impressed that I was able to work full-time, run three times a week, and lift weights three times a week while doing the therapy and that my energy levels were excellent. He mentioned that when people ask him if they can continue working while doing the therapy, he will now reply, "Russ does it." We decided to continue the current course of treatment and expect to do that until we get to the two year mark, which will be three months.

We had to leave the house early for the chemotherapy today and our sister-in-law really helped us out by watching all the kids. My wife ran some errands while I was receiving the chemo and saw the new Harry Potter movie. Due to the benadryl they gave me intravenously, I slept for most of the four hours that I was there.

I am home now and could be feeling better. I would call my current state mediocre, but not terrible. I am slightly nauseous. I took some anti-nausea medication a little over an hour ago and it is helping. I am really grateful for all my supportive friends and family. It is amazing how many people post supportive comments regarding my treatment status on Facebook. Thank you so much.

For those of you who don't know how you could do it, you could do it. It sounds hard and it is hard, but when faced with something that can and will kill you if you do nothing, you have two choices...fight it and live, or ignore the situation and die. I think the choice is simple. YOU FIGHT. I think you would all do the same thing.

Saturday, June 13, 2009

06.13.2009 - Another Round of Chemo

On 06.10.2009, I had another round of chemo. It was Etopicide and Taxol. I always take the Temodar too, but that is orally each evening for five days, beginning with the first day of chemo. That night, I wasn't feeling well, but I felt well enough the following morning to go for a three mile run. I only missed work for the time it took to receive the chemo. So far, so good. My face is breaking out and that is likely an interaction between the Tarceva and the IV chemo drugs. I will hold off on the Tarceva for a while until that goes away. Even though Temodar isn't that bad, it frustrates me that I am supposed to take it at bed time on an empty stomach. I really like eating before bed and I have to plan to eat earlier when taking the Temodar. The hair is all back, but it is only a matter of time before the Taxol knocks it all out again.

Tuesday, May 12, 2009

05.12.2009 - MRI & Going Well

On 05.12.2009, I had a MRI and it showed that everything is presently stable. My doctor showed me the scan from hours earlier compared to a scan from over a year ago and it was clearly visible that the tumor had responded to treatment. I was very pleased to see that.

The new treatment plan is to discontinue using BCNU because I have had as much, if not more, than anyone has ever had of BCNU and it could cause lung damage. The last lung test that I had showed my DLCO as 134% of normal for people my age. My doctor was impressed by this. I think the weight lifting and running has paid off.

DLCO is the extent to which oxygen passes from the air sacs of the lungs into the blood. He and my nurse were concerned that use of the drug any further could significantly affect my DLCO.

Now, we will continue using the Etopiside and Taxol via IV and the Temodar, orally. When I get to 24 months - which is only five months away - we will switch to all oral medications.

Friday, April 24, 2009

04.24.2009 - One Week Post Chemo

On 04.15.2009, 04.16.2009 & 04.17.2009, I did another round of BCNU. I felt well enough during the treatment that I worked each morning before I had to leave for the doctor's office, brought work with me to do during chemo treatment, and then even worked after chemo was done on the last day. I thought I got off scot-free, but then I was more tired than usual for a week after it. I believe I am feeling pretty close to normal now though. I don't know when the next round will be since the BCNU tends to knock my blood counts down for a few weeks at a minimum. It is also causing me to breakout, so I have a red, flushed look to my face and whiteheads on my face. It is just so fun to look like a teenager again. I don't know if I can say that my hair is coming back yet. I have decent beard growth and my eyebrows are sparse. Last time my hair came out, my eyebrows weren't affected. I don't look too freaky though. Many people have told me I can pull off the bald look pretty well.

Friday, April 10, 2009

04.10.2009 - Hair Falling Out Again

I knew it would happen again at some point soon since Taxol makes my hair fall out. I can see many places where the hair is falling out and it is time to shave my head again. Some day, this process will be over and the hair can stay. I feel good and have been lifting weights three times a week and running three times a week. I am in as good of shape as I was while in the police academy eight years ago. I have another round of chemo - BCNU this time - scheduled for the latter half of next week. Is it spring yet? Last weekend, we had harsh wind and freezing rain and my lawns were covered in sheets of ice.

Tuesday, March 17, 2009

03.17.2009 - Etopiside, Taxol, and Avastin

On 03.17.2009, I went to the doctor's office and had my regular biweekly Avastin treatment, along with a combination of the chemotherapy drugs - Etopiside and Taxol. Taxol is the one that I have to get pretreated with IV benadryl to prevent any possible allergic reaction and I always need a ride to and from treatment for that one. They don't want me driving home after that.

My mother was visiting and offered to take me. My platelet count had been dropping the past couple weeks and started rising again, but the level wasn't where my nurse wanted it to be. I told her that today was the best time for chemo since I had someone with me who could take me home and she consulted with the doctor and I was approved to have chemotherapy.

The Etopiside is what they are using to replace the Camptosar/Irinotecan/CPT11. My nurse said I should not experience nausea and vomiting from it. It has been several hours since I had the treatment and I don't feel sick, but I don't feel great either. I am experiencing a general malaise.

I knew that if I had chemo this morning, I wouldn't want to run on the treadmill this evening, so I ran when I woke up. I hope I will feel good enough to lift weights tomorrow night and then run again on Thursday night. It doesn't look like there is hair growth in my immediate future with all these drugs. Oh, well, I don't mind the bald look.

Tuesday, March 3, 2009

03.03.2009 - Perhaps More Chemo?

On 03.03.2009, I had a MRI and a PFT (Pulmonary Function Test). The PFT was because BCNU can adversely affect your lungs. The MRI showed that the residual tumor tissue was stable and unchanged, which is the way it was the last time, the time before that, and the time before that. That is good. It means that the tumor isn't growing.

Despite that, my doctor asked me if I would do more chemo. He said that since I tolerated it so well, perhaps we could hammer another nail in the tumor's coffin. I thought chemo was over and done with. That sucks! We are considering following his advice, but how long will this go on for? Needless to say, it could have been a better day.

Saturday, February 7, 2009

02.06.2009 - IV Chemo Is Done

On 02.04.2009, 02.05.2009, and 02.06.2009, I had my last round of chemo. It was my sixth round of BCNU and the neurooncologist had asked me if I could do six rounds of that drug. He told me that it was the most they had ever given to a patient. All three days I felt fine. I have to take Temodar - an oral chemotherapy drug - for five days as well, but I do that with every round of IV chemo.

I started treatment back on 10.25.2007 when I had surgery followed by radiation therapy and then chemotherapy. I will still continue to have Avastin every couple of weeks and will likely take some regimen of low dose Temodar. Both have virtually no side effects. I will continue to have MRIs regularly to monitor my progress.

As you can see, I took some photos during my last day of chemo. The photos include everyone at my doctor's office that has helped me the past 16 months. They include the office reception staff, Dave (one of Mary's medical assistants), Mary (my devoted chemo nurse who is more dedicated to her job than anyone I have ever met), Dr. Arenson (my neurooncologist and the mastermind of my treatment plan), Cynthia (a brain cancer survivor herself and a volunteer for the Colorado Neurological Institute), Tusdae (who used to be Mary's assistant, but not assists another doctor in the office), and Wade (the staff chaplain).

Friday, January 23, 2009

01.23.2009 - Scheduling the Last Round of Chemo

On 01.23.2009, I went to my doctor's office and had my blood counts checked and received Avastin via IV. My blood counts were all excellent and we scheduled the next round of BCNU a week and a half from now. This will be the sixth round of BCNU and should be my LAST chemotherapy session. I am very excited about that!

Saturday, January 10, 2009

01.09.2009 - One Hard Day

On 01.09.2009, my wife drove me to my appointment for a round of Avastin, Taxol, and Camptosar. I was there for about five hours or so. Once the benadryl went in the line, I took a nap for a couple hours or so. I brought my laptop to occupy my time while I was awake because the hospital has a wireless network for patients and visitors. That night was hard too. Diarrhea, vomiting, and all-around discomfort. It really sucked. I couldn't eat anything. It was just me, my laptop, and a gallon of Gatorade at my side by the bed.

On 01.10.2009, I was feeling better. I expected it to be a morning reprieve only. Usually, things are okay in the morning and get worse as the day goes on. I was able to hold out until now - 17:30 hours - and was even able to take two of my kids to the Museum of Nature and Science in Denver for a couple hours. Let's see how the rest of the night goes and the next day.