I Got It!

Nineteen days after my last treatment, I finally got some chemo. I am so glad to be sitting here with my pump that Bennett says sounds like a kitty meowing. I have been sneezing all evening, and remember the last time the same thing happened. Could it be another strange side effect?

There was a do or die moment - my WBC were only 1300, they usually want them to be 1500 for treatment, but because they turned me away last week, they made an exception. I am prepared to feel slammed down after this treatment, especially staring with lower WBCs. I am hoping not to and have a list of things I would like to get done tomorrow, but if my love quilt calls my name, I will be under it.

I have an appointment with Dr B on Wednesday. I heard the nurse tell him I was asking for Neulasta. Instead he lowered the does of Irinotecan. I cried. I don't like it when they "dose reduce." I know they are trying to find the most effective dose for MY body, but I don't want less medicine, I want this to be big medicine. My sage friend Ruth reminded me that sometimes the biggest tool is not the most effective - sometimes the little hammer is what you need to do the job with the most precision. I will work on adopting that philosophy.

What am I going to do tomorrow? Pick up meds, work on glass and walk the dog. These are my goals- if I can do them. Try to get enough calories. I must be doing something right because I weighed exactly what I weighed last week - 99kg. That is 217 - I started this process at 245, so I still feel like I need to keep the calories up up up. It's not that easy because I have a weird taste in my mouth, my mouth always feels dry and my belly is so picky. I had to eliminate tuna with mayo (protein and fat galore) because I realized it was the thing that was giving me so much gas that my belly made the bed springs shake. Good news though, is that polenta seems to agree with me and I love polenta. It's so strange what becomes important when you can't really eat. Honestly, I wouldn't eat half what I force down if I didn't have to. The Ensures are becoming my mainstays and that is saying something. I think I already said that I just think of them like medicine and that makes them go down easier. Now I just wish they didn't cost an arm and a leg...

Time for bed. I am praying for an easy sleep, energy for tomorrow, power and courage. Pray with me, will you?

Just Another Day

Of rest and relaxation and frustration. I am obsessed with getting this drug that helps WBC counts. All day I have been trying to figure out a way to talk my doc into giving it to me. I've asked twice already that I can remember. Pardon if I am repeating myself, but I can't understand why I can't have it. It's a drug called Neupogen, there's another one called Neulasta. They are expensive and have some side effects. Okay, what in this process isn't expensive (I happen to know my PET scan was $5200), and I am getting to know more about side effects every day. This totally blows.

Don't forget I am coming off being pretty angry about not getting chemo yesterday. I am also despairing of the fact that I have not once been able to have chemo on schedule (supposed to be every other Tuesday).

To be fair, the explanation that I got about not getting the WBC shot, is that they only use it for people who have much more rigorous treatments - let's say every week and it is not possible WBC counts in that time frame. BUT BUT BUT I want to say "I can't recover in two weeks, give me the shot." I will keep you posted on what Dr. B. says, I will call him tomorrow.

Here is the fab quilt that my sister-in-law sent. I forgot to say that Trisha specifically used fabric with bees just for Bennett.

Today was a quiet day - other than the obsessing. I hung out in the new bedroom while the cleaning lady made our house look a lot better. It's hard when everything is so old - the tub has got to be 60 years old, and the linoleum too. So it's clean, but it's worn, and it's ours and I love that it's all clean. I am so happy to have a mom who encourages me to do things like hire a cleaning person. She has an unusual name, so I don't want to use it without her permission, that is why I keep calling her the cleaning lady and not by a name. I did exactly what a person who is neutropenic is supposed to do - sat on my butt and did very little. I watched two TV shows about medicine - Grey's Anatomy and House. You'd think I wouldn't want to, but they were oddly compelling today. I knitted, I painted with Bennett. Here is one of the paintings she did today. Notice the pupils in the eyes - when she was painting them she said "and now the eyeballs." Pure genius.

Sorry about that

I've heard from a couple of people that they worry when I don't post. Sorry about that, I just took a break. I think I was watching The Biggest Loser, or some crap. It's actually interesting that I need to learn this lesson again, when I don't post I feel a little bummed out the next day. Like something is not quite right. And if you think about it, so many things are not quite right about now, that I do not need to add another one.

I have two more hats to share with you. This is the winter hat that my sister's friend sent. This friend is a doctor so she knows things...

I look like a skater boy. The hat says Mountain Hard Wear on it. I love it, it's super toasty.

This one is the at I just finished knitting. It is purple with a silver/gray edge. The pattern is from www.knitty.com and designed by a bald guy. It's a hat specifically for bald people.

This is how much hair I have now. That's a big forehead. I am grateful to have any hair and I am sure you all are pretty tired of me posting about me hair. It's still there, that hair. And when it's gone, I'll let you know. Until then, you all can just assume I am keeping it for a little while longer.

My sister, Janna, is coming to visit tomorrow. Just for the day, and I can't wait to see her. I haven't seen her in 11 years. I am not sure how that happened, but it will be a huge treat to see her and just be with her.

I am having a very nice day. Pat worked her butt off trying to get a big window put in, she will finish tomorrow and I can't wait to see it. It will let is lots of light that will effect the new bedroom, the old bedroom and a room we used to call The Rotten Pink Room. It was rotten and pink, now it's not. We have to find a new name for it. The Gallery. Now we just need to get it drywalled and painted...ugh, so many things I can't do. I can call workpeople and hire them. As long as the money holds out.

Last I want to mention the incredible gorgeous handmade quilt my sis-in-law sent. It is so incredible and she made it too! I can feel the love coming from it. I can't take a picture right now because Bennett is asleep and I don't want to wake her up. I did want to mention how touching it is to get something so lovely and loving. It's like getting cancer was the only way I was going to ever understand how truly good people are. I just didn't know and now I do and I can't believe the humanity around me. I am so lucky. Praise be.