Feeling Groovy

Today was a good day. Yes, I have to say, a very good day. I almost feel like myself. I have been eating more things - like cookies, and have not had a bad reaction to them. The only thing is my teeth are not used to anything crunchy, so they are a little sore. I know that sounds weird to me too.  Tonight Pat made me little polenta pizzas. They were delicious and I am going to have pumpkin custard (a mainstay) for dessert. I have cut back to only two Ensures a day- I still want to maintain my/gain weight. They may taste terrible, but those 350 calories go down in about six gulps.

We went to Barnes and Noble to hang out and I splurged on the original Grinch movie. We spent the afternoon watching the Grinch, I also finished another hat using up all the yarns from the other caps I've recently made. This is from yarn that Mary sent me (really she sent a gift certificate, but I think of it as from Mary). I have very little hair left and am wearing caps all the time, for looks and warmth. I like the kind of cap that fit snugly and this pattern is pretty perfect. Next I am going to make a blue doggy hat Bennett has been asking for. I hope she really wants it, as her pink kitty hat met its demise in the washing machine.

It's a little odd to be feeling this good. It's almost hard to enjoy it knowing what's coming, but I have to take advantage because they are going to change up the chemo drugs and they might not be as nice to me. I didn't even have a nap today.

Oh, I met with the woman from Prepare for Surgery, Heal Faster. I am not really sure about it. It's a program of visualization (I can get behind that), but I am supposed to ask the surgeon and anesthesiologist to say affirmations to me while I am under. It just seems like too much to ask. I just want them to pay attention to my guts and getting the cancer out of there. It seems reasonable to ask the anesthesiologist to say nice things to me while putting me under and maybe even holding my hand, but I just don't know. I am also supposed to listen to the visualization tape on repeat the entire surgery. What do you think? I will ask the surgeon what the atmosphere in the OR is like. It's a teaching hospital so God knows what they will be talking about, so it might be a good idea not to hear what's going on. I just don't know. I don't even know how to put my Ipod on repeat.

Time to relax and not get too crazy about the surgery. I just want to normal night to go with my normalish day.

Today was the Day

Thank God we got some good news today. No new cancer, some tumors shrunk and everything else stayed the same. The next step is surgery. And soon. They want to do it before Christmas. I will know more on Monday when I call to schedule a consultation with the surgeon.  They want to move quickly because if it is not done within the next few weeks, I will have to have another chemo blast and that will delay the surgery and on and on. So Merry Christmas to me.

This is why the surgery is a good thing. It will take out the primary tumor, the parts of my colon that perforated, the cancerous lymph nodes and peritoneum. The idea is to get all of this out, especially the part of my colon that perforated, so they can use more aggressive drugs on my liver. This surgery will not touch the liver. Another good thing is I might be able to eat more normally, and will be in less pain (after the big giant pain of surgery).

Dr B. is hot to use a drug called Avastin. It is supposed to be a super tumor shrinker. So fast, in fact, that colons that have perforated will rip if it used. That is why they have to get that section of colon out of there. Chemo will start again as soon as 6 weeks after surgery- depending on how quickly I heal. That seems a little mean, but I am going to believe this is the best course of action to get this unwelcome crap out of my body.

I am not afraid of surgery. I am afraid of the pain, how Pat and Bennett will cope, what chemo might be like after surgery but these are all things that can wait. For tonight I am just going to revel in the fact that I have less cancer in me than I did four months ago and that makes me pretty happy. Oh, it was almost hard to use that word. It's been a long time since I've had any good news about this process, and now I have some. Yay.

Chemo Today

Well, the Neulasta did its job - my WBC were 4700. That is 4300 more than the first time I did this dose without Neulasta. I was pretty out of it then. I feel completely wiped out tonight so only  a short post.

Chemo went fine, I have my pump. Ruth drove me and Liz took care of Bennett. Sandy brought soup for me and lollies for Bennett. The sunroof on the new car leaked all over Pat while she was driving home from work and that will need to get fixed ASAP.

I am going to bed. Goodnight and thanks for all the good wishes. They are working.

3 More Days + Chemo Tomorrow

How can it be that I have to wait for test results and have chemo at the same time? It seems like the meanest combination of things. My friend Kathy sent this article about how hard it is to wait for test results and it is true. I am not sure that I agree that it is better to know a hard diagnosis than to wait, but I know both are super hard. That's putting it mildly, really it all totally bites.

I had an incredibly anxious morning and it was especially difficult because I could almost call yesterday a serene day. The contrast made today's anxiety even harder. I had acupuncture which was again sort of mysterious. I asked a lot of questions this time. I thought she would put the needles in exactly the same places as last time, but no. This time the she did a organ detox which involved a bunch of needles up and down either side of my spine, one in my foot, and one on the side of my neck. It was really interesting and relaxing. Those needles stayed in for 15 minutes and then she did some acupuncture where she just put the needles in and out - in my knees, shins and the tops of my feet. I don't know if all of this detail is interesting, but since acupuncture is so new and mysterious to me, I want to tell about it. It's not like reflexology or Reiki which are so immediate and hands on. This is almost more of a leap of faith for me. I would have thought it would be the opposite - another mystery, another leap of faith.

I have chemo tomorrow. I am really praying for good WBC counts so that we can keep going. I have felt pretty good to very good for the past two weeks. Of course lots of naps help and Pat has been really concentrating on making sure I eat and have lots of tea. It really makes a difference because I forget to eat and when she hands me a bowl of warm pumpkin custard with cream on it, I just eat it and it even tastes good. I hardly ever think of opening the refrigerator, it just doesn't cross my mind. Jaw dropping, I know.

Pat and Bennett are making cookie dough right now. I can count on hot almond cookies later. I'll give you an update on my weight tomorrow. I have been trying really hard to maintain and even gain weight. Last time I was at the doc, I had gained four pounds. I would like to have that be true again. I am not feeling quite as gaunt as I was. That is a good thing.

Okay everyone one, it's that time again. Light and prayers for a good chemo please. Thank you from the bottom of my heart, I couldn't have made this far without your prayers, help and light. You all are my light.

Chemo Yesterday

Yep, got chemo and was so exhausted I went to bed at about 6:30 last night - so no post. Not posting is one of the last things I thought of before I fell asleep. This is what I was going to post "Got hit by a truck, got up, got hit by a truck again, stay tuned for news of my miraculous survival." But I just couldn't get up the energy.  That does pretty much feel accurate.

Right now I am pretty okay. Freaked out about everything as usual. I just wish I could get more hours of the day when I am not scared out of my boots, as my mom says. I have moments when my mind is still and then I snap out of it. I have some great relaxation tapes that help, but I need stillness to be a greater part of my life. Any ideas of how to get there? I will take any and all tips.

Tomorrow I give my pump back and get my first Neulasta shot. Then I have my CT scan on the 27th. I won't know anything about it until Dec. 3 at the earliest. That is the date Dr. B. will present my case to the Tumor Board. That's the multidisciplinary team that decides what the next course of action is. I am having chemo on the 1st, so my guess is that the TB will recommend more chemo. The other choice would be surgery, which you all know I want. It's not really an option until my liver clears up a little. There are so many tumors on my liver that it is not operable at the moment - it might be different from this course of chemo, but Dr. B. said that would be unlikely. The thing about Dr. B. is that he has to tell me a lot of bad news, so I think he's more of an asshole than he really is. Since I met with him yesterday, I think he's a pretty big one. One day he will give me good news and I will think he is a saint, until then,,,

Thanks for all the well-wishes yesterday, they were well needed and appreciated. I am pretty tired right now and have to get a very sad and tired Bennett off to bed. I am not sure what the matter is, but as you can imagine she is stressed out too. It's pretty likely she doesn't know what the matter is either. How that breaks my heart.

Chemo Tomorrow

Get out your prayer beads, your light gathering tools, your whatever you need to remember to send me prayers and light tomorrow for the big chemo tomorrow. That's all I need, for you to take a few minutes tomorrow to send energy my way. I will feel it - it will hold me steady and help me so much.

As you may have guessed, I am a little worried about this chemo. Maybe not about tomorrow so much as what will happen over the course of the week after. The last time I had this big a dose was my very first dose. Remember the extremely rare side effect of slurred speech? I am nervous about that again. They will pump me full of steroids and anti-nausea, anti-everything before hand, but those things wear off probably by Wednesday night.

Okay, I get that I am worrying too much. It will be what it will be and that's all it can be. But it will be so much more with your thoughts and prayers. So pray-away and I thank you for it.

I'm Good

But not going to post much. Had a very nice day. Experimented with new foods. We shall see how that goes. If you know what I mean. I had some vegan lasagna, some almond flour cookies and tuna. Not all together, but throughout the day. These are big extravagances for me. I am hoping I can add even more new foods into my life. Pad Thai anyone?

All is well. I am sorry that chemo on Tuesday is going to ruin this goodness. But since I understand the big picture - I am trying not to mind.

Pat installed the stained glass for our outdoor awning and it looks awesome. She took pictures, but we can't seem to figure out how to get them off the camera and into the new computer. Perhaps tomorrow night.

Until then, good night.

A Half and Half Day

Really I should say the day was 3/4 crappy and ended well. Well, it hasn't even ended yet, but I am predicting that all will continue to be okay for the next two or three hours- um, two hours. I am pooped, though that is not new.

The day started with me feeling faint and dizzy. I spent most of the morning and early afternoon lying down. That was all I could do. I tried to sort the laundry and ended up prone on the bed with weird colors before my eyes. I took that as a sign. I dozed on and off until noon, woke up for my second Ensure of the day and hung out with Bennett on the futon. Beryl and Ali brought over delicious potato soup made with a secret ingredient - love - it said so on the ingredient list. I had a bowl of love soup for lunch and went back to bed under my love quilt. I went back to bed after Pat took Bennett over to Sandy's to play with BFF Avy for a couple of hours. It was really good for all of us. Pat stayed home sick, and still had to take care of us. So having respite in the afternoon was a Godsend.

We spent that time dozing some more. And when Pat went to get B, they had to go to the store. While they were at the store, I listened to a chemo visualization tape. It's a little strange, but really helpful. I felt much much better after. Much more hopeful and I have to say with that tape it's the first time I've imagined my liver nice and pink and free from tumors. That is a very nice image.

I forgot to mention that Dr. B. called. My relationship with him is one of a lot of anxiety. I am not sure how it happened that when I think of meeting with him, or talking to him, I get a surge of panic. I am sure it's because we are always talking about cancer and tumors and treatment when we meet. He called to tell me the next time I get chemo they are going back to my original dose - that is twice what I got this week. I will get that plus the Neulasta (WBC shot). He said I can expect to feel bad for five days after this next chemo. Something to look forward to. I am pretty sure he is trying to get me all chemo'ed up before my scan. I am supposed to have a CT scan at the end of this month to make sure we are on the right track.

He also called to tell me that this certain blood marker that had gone up (bad) after going down for four tests in a row, had gone back down (good). And that the up measurement could be considered an anomaly. Let's pray that continues- the going down part, I mean. It was also revealed that my scan has not actually been scheduled and that's a big bummer. I have to work that out on Monday.

November is going to be a hard month with lots of days when we are going to need help. I am putting that out there, because I know there are people out there who sometimes wonder if we need help. The answer is yes. Mostly with taking care of Bennett during the week. Maybe picking her up from school and keeping her until we get home from Worcester. That kind of thing. We are going to look at the calendar for more exact dates, but if anyone out there can lend a hand, let me know. We really really know that we couldn't do this without so much help. Just today Beryl, Sandy and Snow Farm all gave us a hand and that brings me to tears. As Pat says, people are good.

Kitty Appears to be Fine

As suspected, Kitty looked much better today and seems pretty fine. She has a cut on her head that I've bravely cleaned out twice and now the goose-egg is gone. She is a tough nut, so she will be fine. Her infirmity reminds me of how fond of her I am. Honestly, most days I just ignore her, but she is a good kitty and I love her.

Another good day. A day filled with good activity and some worry. I am already starting to worry about chemo on Tuesday. Liz is going to take me, so that's all set and comforting. I think I am worried about how bad I am going to feel after treatment. I don't want to spend a lot of time horizontal again. I know it's part of the gig, but I am feeling so much better. I also know that I am feeling better because they reduced my dose again, so I am better able to tolerate it. I am very curious if they are going to give me the same dose, increase my dose and give me Nuelasta, or what? Some other possibility that I haven't thought of. Those oncologists like to keep me on my feet - or should I say off me feet...

Today I started off the day by accidentally taking too much anti-anxiety medication and I had to take a nap at 10am. Luckily Pat and Bennett were off on an adventure and my job was to stay home and rest anyway. I took it literally.  After that I did the laundry, worked for about an hour in the studio, took B to aunties' house and did a very minimal garden clean up. I worked in the garden with latex gloves and a surgical mask. I am not taking any chances. I just wanted to be able to pull into the drive without be accosted by drooping plants. I will do a full clean up in the spring and hope for the best. I try really hard not to leave anything to moulder in my tiny yard. Perhaps this is the year that my plants will learn to toughen up - be Holyoke plants.

I am exhausted to the bone. All this feeling good and doing stuff is tiring. I don't want to pretend that I am not having a hard time at all. There are moments that are super hard and I broke down while working in the studio. Poor Pat was working hard on getting the awning we built about five years ago up and I fall apart. There is no way of knowing when I am going to burst into tears these days. Pat says they are just part of the process. She is right and it does feel good to release the tears. It's just such a bummer.

Tomorrow I am going to the 8am service at St Paul's in Holyoke. I will let you know how it goes. I don't know anything about Episcopal churches, though my mom sent me links for information. I looked and they seem to be much more open to the world and I like that. I will let you know how it goes.

That's it for tonight. Goodnight everyone. And a special request to those who are shy about posting comments. Please do. I love them and they give me a real boost during the day when I check to see if there are any comments. I lap up every word - so please stop being shy and comment.

Some Sunday

Today I went to church. I decided that I wanted to go to church this summer and Pat and I tried one. We didn't like it that much, and Bennett kept thinking we were going to the circus. "Where the circus, mama?" What a disappointment! So we didn't go back and took an inadvertent break.

We have a Lutheran Church down the street and I thought I'd give it a shot. I went by myself this time. It was very pleasant. I don't know what the Lutherans are about, but the pastor was super accessible and the service was interesting enough to keep me attentive. I'll go back next week and see what's it's like again. There may have been a touch too much about all of us as sinners for my taste, so I have to find out if that was just the sermon or the flavor of the church.

It was a big deal to go by myself. I wanted to go back to bed so bad, but then I joined Pat and B on the drive to Trader Joe's. I sat in the car and talked to my sister, Mary, while Pat did the shopping and B did the snacking. Mary is going to Africa next week for a seven days. I am going to miss our talks a lot, but good for her for getting away and relaxing. She's going to need to soak in all that warmth for when she comes back here in November or December. I am already looking forward to that visit.

After TJ's, B went to Aunt Liz and Aunt Jewwelie's for an afternoon of fun. Pat and I got to take a nap, I didn't really sleep, but was plagued by the bad voices. Mostly about what actually happens when a person dies "from cancer." I had a very poignant and helpful conversation with my mom who helped me understand that it tends to be a shutting down of the system - or as I put it, organ failure. My mom assured me that my father (who died from cancer) had a peaceful death and that the hospice angels made it that way. It was very very comforting and sad.

We then had a long conversation about the use of anti-anxiety meds. My doc has been telling me to take them as often as every four hours- that is Atavan or Lorazepam. I really try not to, thinking that I am cheating. I now believe that if I need to take something to stop myself for torturing myself (as my mom put it), that it is not cheating. So guess what? After I hung up the phone I took half a does and it made the entire evening more pleasant - and I believe more pleasant for everyone. And I am not torturing myself at all right now and it feels really good.

More good news is we finally found a home for the fish tank. Thanks for the always generous and fearless Aunt Liz. It is be a huge relief not to have to worry about the sheer neglect of those beings anymore. Thank goodness. They will go to their new home this week, phew.

And that's about it. Read books to B, posting, going to watch a little Top Chef season three and go to bed. All in all not a bad day. I think I am over the hump of being chemo-ized. I will know more tomorrow- and so will you.

Just Got Up

Yep, I just got up from bed- it's 6pm. I feel a little humanity returning, for which I am incredibly grateful. I was in bed all day, literally all day. Not watching movies, not reading books, just dozing and lying with my eyes closed. Is it laying or lying? I don't know. I am just happy to be up and feeling like maybe tomorrow will be better.

I will tell you what it's like. I've heard chemo described as God playing with gravity, and some days are just days you can't fight gravity and have to be horizontal. I mostly agree with that, but I more feel like the ray guns on Star Trek are set on stun and they got me. Otherwise I would want to read or watch a movie, it feels just like I've been stunned.

I had a very hard time with guilt today. I felt like an utter failure. That not being able to get out of bed is anathema to who I am, and I felt a deep sense of failure. This doesn't help at all. I also wondered if I might be clinically depressed, which happens to people who get cancer. I don't think so. I bet I will know more tomorrow. Both Mary and Pat reassured me that I am not a failure, that chemo is a hard thing to deal with and sometimes bed is the only answer.

Thank God for Pat being able to take Bennett to work at the last minute. Thank God for Ruth and Theo getting our veggies for us and thanks again to the highest power for Liz and Julie taking Bennett for an adventure in the afternoon. All of these folks pitched in so I could stay in bed and work on my WBC.
So many people called to see if I was okay, it was really a wonder to get so much help.

Last night I didn't post that Dr B agreed to the Neulasta if my WBC count if low at my next chemo. He called yesterday to tell me that he is working with the insurance company to get it okayed. He thinks he has a good case because I've already spent a week in the hospital due to a compromised immune system. Neulasta, I've read online, is between $3k and $7k a shot. I don't know why the range, but holy cow! that's a lot of money. Neulasta doesn't come without its side effects- 10% of users get severe bone pain and/or flu like symptoms. If you look at the glass half-full, that means 90% don't. I am going to cross my fingers and toes that I am in the 90%. So far I have lucked out on a lot of side effects - I've only barfed a few times and I don't have the diarrhea everyone talks about. That might be because I only eat soup and Ensure and the occasional yogurt. Anyway, I hope I will continue to luck out.

I feel like I have to say thanks to everyone for your support. This is going to be a long long long shitty process and I appreciate you all sticking with me. I think about it all the time, how important all this support is. How could I have gotten through this day if so many people didn't step in to help? So, thank you from the bottom of my super fast-beating heart.

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.

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?

Cross Your Fingers

Chemo tomorrow, God willing. I feel good and have been resting like mad, so if I my WBC are not up to the task tomorrow, I don't know what I will do. I have a list of questions for Dr. B. including the whole why can't I get the WBC shots thing? Can I get my labs done locally? That way I don't have to travel and get turned away. That would be great for us logistically.

I was warned at the beginning of this journey that I might need to find a local lab - and they were right. I just never thought that I wouldn't be up to having the chemo every two weeks. My body has always been so strong and trustworthy.  It still is, but I guess if I get hit with what amounts to poison, things go a little haywire. I keep thinking if I thought better positive-thinking thoughts, this wouldn't happen, but that's not true. I think a lot of weird stuff. Sue, the chemo nurse, says there is nothing to do to about the WBC thing. Nothing special to eat or drink. But I believe my ongoing supply of beef broth from Theo is keeping my immune system going stronger. (I will also mention that Sandy made a great sweet potato cheese soup that is pretty amazing - you can practically feel the calories when eating it.)

I have been on an on-line shopping jag. Tonight I ordered 2 - 40lb bags of dog food. Two days ago it was a new mattress pad. I figure if I can't go shopping, I can get everything on line. It seems to be true. Last week I noticed my shoes had holes (I suspect they had been there from some time, but my mind has been elsewhere), so ordered some new shoes. They came in less than 24 hours. I like that things just come to our house. What else I like is that I can do research on the best brand and just order it and it comes. That's what I did for the space heater for the new bedroom.

Okay, so that's what I've been up to. Pat's home now, Bennett is so relieved she actually ate some dinner and fell asleep in about a minute tonight. She does not like when one of us is gone. Come to think of it, I don't like it when one of us is gone. I don't really like it when my friends travel. And I have to say I wish my sisters and their families lived closer - like around the block.

Anyone interested in a 40 gallon fish tank? It has fish already in it, and it's got lots of cool marbles that Pat and I made on the bottom. I am not allowed to touch it and I am afraid these fish will die if someone doesn't come at take them away. It's a pretty low maintenance, but not low enough for us. Let me know and I will give you the scoop on how to take care of it.

Wish me luck tomorrow. I am resigned to whatever happens, but feeling hopeful. A good night's rest and a nice big yummy Ensure will help, I am sure.

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.

Another Not Goodbye

This is my great sister, Janna, who came to visit today. This was definitely not a Good Bye visit. This was about as "hello" as you can get. Super fun and interesting, this sister of mine. I can't wait to see her again, for longer. And the very least at the family reunion in July - which feels so far away from now. I can't even imagine what kinds of things will happen between now and then. Don't get me started.

This is me showing my receding hairline and Janna showing off her gray that looks blond to me. We took a drive to see Mt Holyoke College and Smith College. The campuses looked beautiful with some orange and red trees and their glorious brick and stone buildings. 

Tomorrow is chemo. It's on my mind. I am a little worried, even though I have to say the two weeks between this chemo and last have been pretty good. I have had only one or two days that left me feeling less than human. I have had fear and anxiety, but that's not the chemo. The days that I had to spend in bed - that is the chemo. So I hope you will all send good chemo healing prayers and thoughts my way tomorrow. And here is Bennett showing us her ducky slipper.

Great Story

Pat just got home from work with a great story of a friend's father who had stage-four colon cancer six years ago and is doing fine. That makes me feel great. Hopeful. Really really hopeful. The doctor who diagnosed me told me he had a patient who was diagnosed later than I, and that was 10 years ago. I hold that close to my heart. Every once and awhile I wonder if he was just trying to make me feel better, but why would he? He had no reason to lie. I will think the best and believe my goal of seeing Bennett graduate from high school is a realistic one. That was my secret goal, but now you all know and you will all help me get there - and beyond.

I had a good day today. Another pain free one. Maybe, at this point, I can just report when I have pain. Or why not, I like to say that it was a pain free day. It makes all the water drinking, soup slurping and yogurt eating worth it. I can tell you that this food lover is still struggling with the limitations. That's okay, I have really grown fond of peanut butter from the spoon and cream in everything. I almost can't wait to see what my weight is next week - just to see if this Ensure/cream regimen is working.

Bennett and I spent most of the day at home. I should clarify - I spent the entire day at home, Bennett had an afternoon at the farm with Aunties Ruth and Theo. They all looked like they had a blast when they came home. I really miss going to the farm - all that dirt and bacteria is not good for me. Next year, I tell myself, I will be able to not only go to the farm, but I will be able to touch the veggies and eat them. That will be a good time.

I can see the difference in B since she started her new school. She doesn't really care as much for TV and wants book after book. We must have spent three hours reading books and finding ebooks to download and read. I know they've been working on maps at school and today she brought me a book with a picture of a globe on it and said "where do we live?" It was really cool. I am so happy she is so happy at her school. Because I am a worrier, I am now worried that we have to find her an elementary school that will be just as stimulating. Yikes!

It's pretty nice to worry about something else other than my health. I am praying that chemo goes okay next week, that every chemo treatment is one step closer to surgery which I am psyched about and dreading at the same time. I don't know when it will be, but it's in my mind. Oh, my mind, so many things stewing. But that is another post. Tomorrow, more hats, more rants, more calls for prayers and light. See you then.

A Blank Mind

It's uncanny how today my mind had been utterly blank. Not one bit of inspiration or idea to be had. I can't even muster a scary scenario. Oh, maybe I could do that if I really tried. It's as if all of what has happened in the past week has gone underground and has left me with nothing.

Today I did very little. Took a shower, played with B, folded the laundry and napped. That's the sum total of the gift of today. My friend Ruth assures me that my mind is working things out at a very deep level. That's a pretty nice way to let me off the hook for being either total spaced out, in denial or disengaged - or all three. I will take it, though, because I try so hard to stay present and real that sometimes I just need a day of blankness. Of course the fear is I will be blank forever.

I did fall asleep to the thoughts of working on my stained glass project. That could be seen as a good sign. Or maybe I should just stop questioning and let myself be. Alright.

I feel a little weak and tired today, like I don't really have the energy to do much. It's hard because I don't want to use too many calories to, say, take a walk. What if not taking a walk means I am giving in to being weak? It's such a hard balance. I have to remind myself that I am one day post chemo and that it is normal to feel kicked to the curb. Maybe this entire post has been a way to make myself feel like the way that I am feeling is not just normal but okay.

Chemo Today

Yep, I got it. I am glad to have gotten chemo today and I have my happy little pump with me right now making all its good whooshing sounds. Ruth came with me and was excellent company, even though I was half-way knocked out by the drugs.

I am completely beat. I need soup and sleep and that's all. I will say my doctor was again awesome in his patience in answering all of my questions. I got a flu shot and everyone in my germ family - this means you, will also have to get a flu shot. Sorry about that. It's better to get one early to build immunity - that's what my chemo nurse, Sue, said. 

I will post more tomorrow. Time to snooze. Thanks to everyone for the encouraging comments and emails. It's good for me to get them, they make my heart sing.