Gotta keep on keepin' on.......

Cancer again...that's 3 times in 2 years. This time it’s not breast cancer, but a new one called squamous cell carcinoma. New cancer, same old fighting spirit! My blog is still named for one of many songs that kept me going the first time around. Driving home from an upsetting appointment, I turned on the radio just as this line from Steve Miller Band's Jet Airliner was playing: "I've got to keep on keepin' on" I did just that. And I'll do it again.

Monday, May 25, 2009

long time no post

Hello again, it has been a long time between postings and I apologize. I've had a hard time getting online, for various reasons ranging from "fatigue" to "PC unavailability" to "not sure what to write"!

Thought I'd catch you up as quickly as possible, before I run out of steam (or before one of the kids discovers me in the study and ruins my train of thought).....

In March, we received the good news that the tumor had shrunk significantly. That was a high point. We had a little break from chemo, then had a PET scan in late March to see where things stood. Would form a new treatment plan (if necessary) from there.

Well, while we awaited results of the PET scan, I started having a hard time catching my breath. It mainly happened when I talked too much (which I can't help, I'm chatty) or when I had to raise my voice to be heard over the children (which happens quite often!!!) It was very scary, and I didn't help matters because I panicked. John had to coach me with my breathing to get me through it. (Kind of funny, because he totally STUNK as a breathing coach during labor. The nurse told him to stop because he was going to make me hyperventilate!)

With John's help, I was able to get through a few episodes, but on Palm Sunday I had an attack that scared the bejeebers out of everyone. We were celebrating Jesse's 3rd birthday with a family party and I guess I had been overdoing it, on my feet, serving, talking, etc. As I sat down to eat, I couldn't breathe. My mom called 911 while John tried to calm me down. By the time the paramedics arrived, I was breathing but still shaky and scared and ready to find out what the problem was. We had them take me to the hospital where my oncologist worked.

At the hospital, we learned that my platelets were really really really really really low, around 7,000 (normal/acceptable is I think over 200,000). That and I didn't have enough oxygen in my blood. So they admitted me and gave me a blood transfusion....several actually, and lots of platelets. I had to wear that funny oxygen tube that sticks up (and tickles!) your nose. And every nurse and doctor had a different way they wanted me to wear it, some said with the tubes pointing up, some with them pointing down.

I won't say I had a miserable time in the hospital. I did get some rest, but not until after that first night. There were no beds in the oncology ward when they admitted me, so they put me in a room with a woman who was dying of AIDS. The doctor informed the family (you can hear everything in those shared rooms, it's impossible to tune it out without an iPod) and they absolutely refused to believe it. Meanwhile, the poor woman spent the entire night screaming in pain. And can you believe the nurses ignored her? I pushed the call button several times during the night for her, and when the nurses arrived they asked her "Mrs. Smith, do you have pain? Where is it?" The woman couldn't answer them, she couldn't talk. All she could do was scream and moan. And because she couldn't answer them, they wouldn't give her any pain medicine, and they left! Unbelievable! I was in shock. How awful for her.

The next day I was moved to a private room in the oncology ward, so while I was more comfortable I never did find out what happened with my roommate.

So many things happened during my week in the hospital: tests, transfusions, endless pills, antibiotics, etc. I didn't need the oxygen after the second day, but I kept it close by just in case. We finally saw the results of the PET scan and it showed the bottom of my right lung had collapsed, and there was a pleural effusion around it. They drained what fluid they could, which helped my breathing a little. It took several days to determine whether the fluid was infected. (It was, but it was treatable with penicillin. Originally they thought it was MRSA which had me very nervous for a few days.)

They also did a bone marrow biopsy (NOT FUN) because my oncologist thought maybe the low platelets were caused by breast cancer in my bone marrow. Thankfully, that test came back negative!

Finally, they decided my platelet problem could be written off to chemo side effects. I hadn't had time to recover from the beating chemo had given me in the infusion room. Plus the right lung wasn't in great shape.

They released me from the hospital Saturday afternoon before Easter (6 days after being admitted). I went home with a nebulizer to help my breathing, and lots of drugs for pain and infection.

One nice thing about being in the hospital was that I spent lots of quality time with John. My parents were staying with us when this happened, and between them and Patyn (our nanny) they took great care of the kids. John worked from home then spent most evenings with me. Sometimes he was there late afternoon, which was a treat.

Right now, I'm feeling pretty OK, still have a lingering cough but not the horrible breathing episodes. I've started a new chemo schedule with a new drug called "bengypsum" (not exactly sure that's the correct name), once a week for 3 weeks then 1 week off. I've had 2 treatments so far and haven't felt too bad afterwards. My oncologist said there would be minimal hair loss, just thinning, and little to no nausea. I might turn a little puffy (but that's OK, I've lost 35 pounds altogether and could use some fat even if it is just an illusion caused by retained water.)

I get tired easily but sitting helps me recover. I don't really do that much, go up and down the stairs as often as I dare, take walks around the house (the kitchen/family room has a good loop), and try to assist when I can. But mostly I do sitting-down stuff: fold laundry, play board/card games with the kids, do my crosswords, clean the corners of my room. I've been trying to be more helpful, to get exercise....more than walking the house....but the more I do the more I need the nebulizer! Maybe I'm going too fast, I don't know.

You can see I'm not very exciting these days! Most frustrating is this: when I talk too much I end up in a coughing fit. So I can't chat on the phone much. I can't even chat in person very well either! Cough cough cough! Lots of nodding yes/shaking no, gesturing, whispering, and writing going on! Maybe I should paint my face and take some mime classes, what do you think? ;-)

I'm hopeful that the new chemo will provide some relief in the coughing/talking department.

So that's the scoop from here. I left out lots of things, maybe will come back and touch on those another day. It may be another long time between postings, but I'll try to get online when I can. I promise!