Chemo Day Two

The pump is pumping and while it's pumping, I am getting more and more tired. Pat and Bennett both have mild colds, so we are all a little out of sorts. Bennett, right now, is refusing to get into the tub, I am posting and poor Pat is running interference between the tub and our stubborn daughter.

Today I took B to school, went to reflexology and had an hour-long meeting with the pastor of St Paul's church. I took a short nap, went with P&B to pick up our new to us car and now I am about to fall over. Tomorrow I have to go to Worcester to return the pump. The only other thing I have to do is take B to school. My ride is not available until after noon, so I should have enough time to have a nap and get my ears in order. BTW it took until noon today for my ears to fix themselves. Usually it's about 10, but today was especially challenging. I really think it's a side effect from the chemo - even though Dr. B says he's never seen this as a side effect.

Reflexology was a dream. I wish I could go every day. I had an appointment with a therapist last night that I had to cancel. I am really sorry, because it is someone I want to work with. I will call tomorrow and make sure that we can reschedule. I had an appointment with an oncology social worker at UMASS. It was okay. There is only one OSW for the entire program so she doesn't take on hourly clients, but is available to talk anytime I am there for chemo. She did most of the talking and didn't really seem that interested in eliciting anything from me. I guess that experience will help me know more about what I am looking for in a therapist.

My time with Pastor Barbara was really great. She is very open and affirming (code for gay-friendly), had a lot of nice things to say about Holyoke and our community. She was great at answering my questions and made me want to continue to have a relationship with St Paul's. She is going to arrange for a healing prayer thing that will happen during the service - more than just reading the names of those who would like a prayer. I really appreciated that, and of course burst into tears. I am going to the 10am service on Sunday to witness a baptism, which I have never seen. I am sort of looking forward to it. This is one of those things that is a big surprise to me.

So, tomorrow more will be revealed. Right now I am about to fall asleep right here from tiredness. I wish I had more energy, really, it would be helpful.

Oh Yuck

That is how I feel. Everything smells terrible and tastes even worse. I have been guzzling Ensure all day just to keep up with calories and try to give myself energy.

The day started off fine. Dropping B at school, walking Z, getting B's winter clothes out and ready. Then that was it. Oh, I made a few phone calls and then needed a nap. I slept way too long because all I want to do is go back to sleep. I crept under the love quilt, after reading a book about God my brother-in-law sent my way, and it was snooze city. I didn't wake up until I heard Pat and Bennett come home - two hours later. Now I feel like a lump of unformed clay with a really bad taste in my mouth. You know everyone talks about getting a metallic taste in their mouths from chemo. Mine is just a really bad taste like I haven't brushed my teeth for about a month and the back of my tongue feels really fuzzy. It's pretty gross.

I have to return my pump tomorrow at 1:30 and see Dr. B. at 2. I would bet money he is late, but he is worth waiting for. My goal is to make sure we are on the same page in terms of my treatment. I feel a little adrift at the moment and need some reassurance that we working toward the same thing - my optimal care. I will feel better after talking to him, I know it in my heart.

Julie rescued me from having to drive myself to Worcester. She hooked me up with her friend Ann, who I have met a few times. I was so happy to hear that I had a ride that I cried. I was a little stressed about the drive on my own. It wouldn't have been bad if it was just returning the pump, but the whole seeing the doc and not knowing how long I am going to have to wait, etc. was making me worried about my stamina. Thank God for good friends and generous souls.

In other news, Pat's car came back from the mechanic with a note recommending "vehicle replacement." So we are on to getting another car. We have Holyoke Auto Center on the lookout for us and I sure they will get us what we want- a no-frills Subaru with all wheel drive. I want to AWD car to get us to Worcester this winter. That is my goal. Let's all pray for a mild winter with no ice storms. Okay!

That's about all I have for today. I am wicked beat and need to do something more restful than this - I can't even think what that could be . Maybe staring into space? Sleep, yeah, that's more like what I need.

A Little Nutella Never Hurt Anyone

I hope. In my quest for mushy foods, and my need from something other than protein shakes and yogurt, I have taken to eating Nutella from a spoon. Can you blame me? Last night I nearly licked the computer when I saw an image of sushi. The hard part is not getting enough tasty food, it's that I can't really prepare things from fresh veg and fruit, so I go for the easy soup packets from the pantry and a fab mashed potato soup from potato flakes that Mary taught me. But really, this gal needs a slice of pizza and some sushi. I will, I suppose, have to wait until my colon is repaired. Until then, send willingness to eat soft foods my way. I will continue to cultivate gratitude for being able to eat without pain now for 5 days!

Now, that's something to celebrate. That and dropping off my pump today. Julie drove in her snazzy car with heated seats - my butt has never been so cozy. I got a chance to talk about some of my fears (ad naseum, poor Julie) and feel much better. Thank goodness.

I will make this a short one, lots of love to everyone. Bennett has a cold, Pat is working on the torch, I am going to watch a little TV on the computer and hit the sack early. Let's all pray for a nice quiet weekend, with lots of good health and healing light.

Who Knew I was So Delicate?

Chemo, round two, is in session. I can hear the sound of the 5FU whooshing into my body. It sounds just like when a CD player changes CDs. Remember that sound? Before MP3 players? When Bennett was just born, I wanted to buy a CD player for the bedroom. I went to Best Buy and when I asked the gal there where the CD players were, just looked at me as I had just woken up from 1974 and asked where the eight-track tapes were sold. She helped me find one in the sad, beat-up clearance department.

I digress. The theory about the mosquito bites proved to be true. Not backed up a doctor's knowledge of medical science, but my WBC counts were just right to do round two. I was very excited. They tweaked the meds- - reducing the Irinotecan by 25% because of my "delicate bone marrow." How does a person who is 6'2" and weighs 226lbs, oh make that 229 today, have delicate bone marrow and tiny veins. It boggles the mind. Changing the meds based on each individual is normal, and does not change the efficacy. Of course I want the biggest dose, the fastest dose, the most aggressive action. The docs, on the other hand, are much more sober in their approach and want to use the most effective meds, leaving the even heavier hitters in case we need them later. Dr. B. says there is no reason to use different, more aggressive, but possibly less effective drugs at this time when we know the combo that we are using has been very effective on colon cancers in the past. I am pretty lucky he's in charge.

This gives me pause, of course. Why would we want to save drugs "for later"? I know the answer, my cancer is a big one and he has to make sure to keep things in the arsenal. I am trying to have this information be comforting and not make me wig out (no pun intended). Actually it is comforting. We are not at the last ditch protocol, we are no where near exhausting the tweaking of the drugs, we are not even close to the next scan, etc etc. Let me be here now.

What is happening now? Bennett is sleeping - here is a picture of her in the hay hut that Pat built last year at Snow Farm. It's a big hit with little kids. And I should also say, the high school students. There is a hay bench inside and a little window for peeking out.

I ordered some yarn with cashmere in it to make hats for my head - thanks to Mary's gift certificate. I guessing I am down to 50% of my hair - again not half of my head is bald! I do have what looks like a pretty severe case of male-pattern baldness.
I am trying to figure out if this is the week to call the hairdresser - or should I say remover? Losing my hair is not just a drag, it's a total mess. Hair is flippin' everywhere, and that's just gross.

Needless to say, I will keep you posted.

 And while I am at it, here is a picture of me with my majestic pump and port. The biggest bummer about having the pump, other than having cancer, is I can't shower until I return it on Friday at 11:30. Really until I get home, some number of hours after that. I told a friend, who replied "oh, how very European of you." I am already beginning to feeling very internationale.

The Most Normal Day Of All

How can it be that after all this craziness, today felt like the most normal day in the world?  Maybe it was walking Zeus in the morning, running into one of my favorite neighbors and having a long talk.  She hadn't heard, so I had to come out to her about cancer.  She asked all the right questions, and offered all the right help.  There are some rare people in my sphere.

Lucky me.

I organized our photos onto Snapfish, ordered bunches, and broke the laptop.  It might be totally dead.  As many of you know, it was a piece of crap anyway.  We had to balance it on Bennett's Candyland game so it wouldn't burn our legs or table.  I made a million calls that I've neglected - Zeus's check up, vaccines for Bennett.  I cleaned the kitchen for the first time in weeks (Pat has been doing a stellar job all these weeks) and talked to lots of great people on the phone.

Did you know that while I am on chemo, Bennett can only get dead vaccines?  I didn't either.  And that everyone who comes over must wash their hands.  And that I can't be around sick people?  How is that going to be in the Fall when Bennett starts a new school with all those germy kids?  Yikes.

The only not perfectly normal thing is the bag around my neck that holds a pump that pushed 5FU at regular intervals into my chest port.  It doesn't hurt, I feel totally fine, even better.  Pat's theory is now we know.  Now we know what chemo is like, how I responded to the initial doses of drugs, what the facility is like, that I am not going to go home and fall into bed for a week (yet, I will if I need to).  I actually love this chemo.

I tried like mad to get the 140 grams of protein the nutritionist recommended.  I hope I can poop tomorrow - that's a lot of protein.  And I have to drink 10 glasses of water a day - done with no problem.

I got to pick up Bennett from school today. We came home and had some serious cuddling.  She has taken to stroking the part of the pump that goes into my chest.  I think of that as her way of sending love into me to help me heal.  She is so earnest and intuitive.  Lucky, lucky me.

We also made cookies.  Cookies?  Almond flour, agave-sweetened cookies that Pat thinks are the biggest treat in the Universe.  I think Bennett felt like we had a pretty normal day too.