Monday, February 26, 2007

New Chemo (Taxol) and Guest Speaker Update



2/26/07

New Chemo and Guest Speaker Update

Hi Everyone,

Just a couple of updates on what’s going on lately. First, I have started my second chemo drug, Taxol, and I have had a pretty good reaction to the drug so far. This Thursday I will go for the second cycle of Taxol. It takes about 3 ½ hours to administer and that combined with blood tests and the anti nausea drip, we are there about six hours total. After Thursday I will only have two more chemo sessions left. Yeah!

I was told by a cancer survivor that Taxol is a dream come true in the chemo world and she was not kidding. Even though it takes forever to administer, I do not get the nose burning, chemical taste that I did with Cytoxan. I will not miss that one bit. I also did not get as nauseous as I did with the first chemo drugs. Normally I would take anti nausea meds for 7-9 days with the last drugs and this time I took them for only 2 days. So that made me happy.

What didn’t make me happy about Taxol is one of the major side effects, bone pain. I could definitely do without the bone pain. As one who has bone pain most of the time I thought I was pretty well prepared for it. Not so much. This bone pain was really in there. It started Saturday night and didn’t end until Wednesday. It was in my joints, ankles, knees, hips and low back, so much so that I was couch ridden for two days. As one who hates to take pain meds, I took them any way. It didn’t help much with the pain but it certainly made day time TV more interesting. In the grand scheme of things, I will take the bone pain over nausea any day of the week. I also had way more energy and felt like my regular self in a day or two.

On another note, as most of you know, Nicky, our oldest, is a 4th grade school teacher. She teaches many subjects, one of which is health. She has a health book that the kid’s use that literally says the sentence “if you get cancer you will die”, the book is 12 years old and clearly outdated. So she told the kids that the information wasn’t necessarily true and talked about me again. If you remember from an earlier e-mail, the kids sent me jokes as a get well present when I went in for my surgery, so they know that I have cancer.

On Friday I went to talk to both of her health classes about cancer and let them know that you don’t always die from cancer if you catch it early. It was really fun and the kids were great. I told them about my type of cancer and some of the things that I was going through with my battle. At the end and pretty much during the whole “presentation” the kids asked a ton of questions. Depending on the questions asked made each session go a little different.

Some of the questions the kids asked were:

• Did it hurt?
• How did you find it?
• How much does your chemo cost?
• How many shots do you have to get?
• Are you going to die?
• What color was your hair? What did it look like?
• Do you have to miss work?
• Were you scared when you found out?
• Can you get Neulasta even if you don’t have cancer?
• How did you get cancer?

There were bunches more but you can see they asked great questions. They really put a lot of thought into them. I showed them my bald head and my scar on the back of my head from the 5th grade swing set incident. I think they liked that part the best. A few of the kids knew people who had cancer, some who lived and some who died. It’s unfortunate that cancer affects so many people regardless of who gets it.

Afterwards I passed out hot pink breast cancer bracelets to each of the kids. I had a great time with them and I hope they did too. Nicky, or should I say Miss Anderson, is a wonderful teacher and we are very proud of the work she does.

Well thanks for listening, again. I hope you are all doing well and I thank you from the bottom of my heart for your love and support. Have a great day!

Love to you all,

Jen

Thursday, February 8, 2007

Halfway Done with Chemo!

2/8/07

Hi Everyone,

It’s been a while since I have updated you with what’s been going on so I thought I’d send out a quick note. Good news, the first part of my chemo is finished. I have completed 4 cycles of Adriamycin and Cytoxan treatment. I have to say I am not going to miss either of these drugs but am thankful that they are available to help me become cancer free. The side effects have been pretty brutal and the treatments themselves have been no picnic. All in all though, I think I’m doing pretty well. We celebrated with our friends the Wrights, Hudoba's and Edberg's at our favorite restaurant; Forepaugh's in St. Paul.

The first chemo session was the worst by far. The second cycle was much better because the Dr. changed my anti nausea drugs, and then I wasn’t as sick. The not so fun part about cycle #2 was that I was still trying to figure out how to manage the anti nausea drugs and got my self addicted to Compazine. That was fun. It took about 3 days, 47 walks and 29 games of Scrabble to get through. I was a little hyper active. Chemo #3 and #4 were not as bad. Since I was more familiar with the anti nausea drugs I bypassed the addiction part and I was also able to handle the fatigue better. The fatigue is a killer; it just comes out of no where. All of a sudden I just want to sleep and sometimes the floor looks like a pretty good spot to crash.

I also have what they call “chemo brain”. Chemo brain is a lot like Alzheimer’s mixed with brain damage. If we didn’t know any better J.R. would have sent me for a couple of CAT scans by now. There are a lot of started sentences, not so many finished ones. Also decision making is a challenge. Want to make a lunch plan? I’ll change my mind 13 times and go into low blood sugar shock before I can decide what I’m hungry for. Mostly because I can’t taste anything. Chemo has wrecked my taste buds. I can’t taste anything salty, sugar yes, salt no. I guess I should be lucky it’s not bitter I can taste. I am basically killing myself with hot and spicy food. The only reason I know that is because I have to blow my nose 64 times during a meal. And my sense of smell is incredible now, weird I know. I can smell things 3 floors away. Flowery stuff really gets on my nerves and I’m about ready to take out Abercrombie & Fitch. Every time I walk past that store the perfume wafting out the door makes me sick. The TSA should hire me to replace the bomb sniffing dogs at the airport, Fido would be jealous if he had my nose right now.

So far I have managed to keep my eyebrows and eyelashes so I still look fairly normal, bald, but normal. With my luck they will fall out at the last chemo cycle. Also, my nails have been replaced with titanium. Honestly, the bionic woman has nothing on my nails; I could open a tin can with these things. I don’t dare try the nail clippers a belt sander would be the better option. Another fun side effect is the chemo is drying my skin from the inside out. I’m starting to look like Keith Richards or one of those 1970’s dried apple people. There is not enough moisturizer on the planet right now. There are other side effects I could talk about but I don’t think any one would still be my friend if I did. Trust me; you really don’t want to know.

My next round of chemo is called Taxol. I will have four cycles of that drug and it will be taken every two weeks via IV. This chemo drug takes 3 ½ - 4 hours to administer so my time spent at the Dr.’s office will be about 6 hours each time. Can you believe that? Sitting still for that long will be hell on me. I have heard this next drug is not as brutal as the last two. I will not be as nauseous but I will have bone pain. Fabulous. Also, I guess this chemo drug makes you really hyper active so our house will be really clean and organized. As a matter of fact, I will probably be looking for things to organize so if anyone has pictures, closets or attics that need help, let me know. I will be done with our house after the first cycle. The anti nausea drugs will change too. Get this, I get to take three drugs 12 hours before, 6 hours before and 6 hours after. That’s a lot of drugs. I won’t miss the drugs when this is over.

In addition to chemo, I have been to what seems like a bazillion Dr. apts. I am going through physical therapy, to get range of motion back in my right arm, lymphedemia physical therapy, reconstruction “fill ups” and weekly labs. I swear they should just give us a complimentary parking pass and name a wing after me.

For those who do not know what lymphedemia is, it is a swelling of a body part due to the removal of lymph nodes. Since I had the nodes under my right arm removed, I am susceptible to swelling in my “upper right quadrant”. There are lymph nodes throughout your whole body that moves fluid and cell waste from point A to point B. Once the nodes are removed you have to manually move built up fluid to other parts of your body where lymph nodes are present. It’s actually pretty cool how it all works. The lymph nodes are just under your skin and light touching moves the fluid to another area. JR is being trained by the therapist so he can help me when there is a build up. If nothing is done with the fluid, it can become a permanent swelling. I think it’s safe to say I don’t want a big arm or puffy arm pit. The swelling feels really weird, imagine having a doubled up tube sock stuck under your arm and down your side but underneath your skin, it feels a lot like that.

As you can see, even though there has not been much in the way of updates to you all, I have been really busy with treatment. For those of you who do not know, I have taken some short term disability to get through the rest of chemo. With the chemo brain, fatigue and a bazillion Dr. apts. I just can’t do my job effectively. So I have taken some time off. I’m 8 days into it and I’m already bored to tears. God help me I’m starting to get on my own nerves.

Thank you again for all of your support, I appreciate it and am so lucky to have you all in my life. Luckiest girl in the world. Thanks for listening, again, and I hope this e-mail finds you all well. Have a great day!

Love to you all,

Jen