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.

No Chemo Today

And I am so mad. I spent the last week feeling great and woke up this morning exhausted and in pain. That was not a good sign, and I knew it. I got to Worcester and the first thing I asked Sue was if I got chemo, could she please give me something to sleep through it. A few moments later, I heard her saying to Dr. B. that I was exhausted and my WBC count was 1000 - the minimum. Then they kicked me out. So technically I am neutropenic again.  This I am not happy about. I did everything right last week. I took it easy, I washed my hands to the bone, Bennett and Pat have been diligently changing their clothes when they come home. I have foregone countless hugs from friends whose clothes were not newly changed. And still I couldn't get chemo.

I am so pissed and a little relieved. I have to say that I was so exhausted this morning, I just didn't know how I was going to get through it. I guess I didn't have to. Pat brought me home and I took at three hour nap. I am still tired, if you can believe it. I am going to help Bennett get ready for bed, do a little getting ready for the house cleaner who is coming tomorrow at 9:15. We have to also take Pat's car in for repair and get Bennett to school. Never mind walking Zeus. Who knows when that will happen?

My next appointment for chemo is Monday at 9. Anyone want to come? I am not sure, but I think I need a ride. I haven't been able to figure out the ride situation yet.

More later, my friends. I need to eat some mushy dinner.

Super Saturday

I feel almost guilty posting today. There isn't really anything to report. Pat assures me that not having anything to report, is in fact, something to report. I feel really good and it's been 36 hours of feeling good. Yay, I am crossing my fingers it stays this way for a lot longer than 36 hours.

We are still cleaning like mad. I should say my contribution is limited; Pat is madly vacuuming, Mary is at the shops getting a ton of supplies for us. I am not sure about how I feel about going to the grocery store at this point and Pat is only one person. She does so much. I guess this is what everyone talks about asking for help. And it's wonderful to have Mary here to help so much. Not to mention everyone else who helps us every week with Bennett, chemo, mental health check-ins. It's all so good.

Bennett is watching Dora and I am posting after we feasted on chicken soup sent from a cancer survivor friend. Fantastic to eat some soup made by someone who fought such a tough fight and is living fully. It's like liquid life.

We moved, I use "we" loosely, furniture into the new bedroom this morning. Now I have a lovely place to go when I need time to myself. We are billing the room as anyone can sleep there, but I secretly believe it's my room. Light and bright, filled with the love put into it by everyone who helped build and paint. The only problem with that room is it makes me feel like every other room in the house needs to be gutted and redone. Ridiculous considering I don't really have the energy to do the laundry.

Yes, I am still tired after all the rest I've had. I think it's just going to be my state for awhile. It's a weird kind of tired, not sleepy, not really fatigue, just moving slow and when I do I want to sit down. I am beginning to think it's a component of fear, but I am not sure. Moving too quickly might make me panicky? I don't know. I mostly just feel like napping and watching Top Chef. Not really the way to live this precious life. So I lay down a little here and there and I keep the Top Chef for before bed. I think I am sending Mary home addicted. Whoops.

Still looking toward my chemo on Wednesday and making lots of WBC until then. I love all the thoughts, crossed fingers and prayers coming my way. I can feel them, I really can.