Still Pumping

Imagine my surprise when I looked up at the title and it said "still pimping." I fixed it, but I might use it another day...

Quiet, rainy day filled with a lot of nothing much. Took B to school, tried to walk Zeus but he wasn't interested in a walk in the rain. Watched some TV on the computer while trying to take it easy. I will not go into another diatribe about how hard it is for me not to do much. Cleaned up a little and did the bills. I am ashamed to say I hadn't paid them the slighted attention since the first of the month. Thank goodness for auto bill pay!

The big activity, if you can call it an activity, was my weekly heavenly reflexology appointment with the magical Marianne. I am on the list of folks who can have reflexology every week at the Cancer Connection. Usually folks are only allowed to come every two weeks. I finally got up the nerve to ask why I am on the list. I was afraid it was that they knew more about my prognosis than I, that they knew something terrible was happening, and all that paranoid stuff. Pat handily reminded me that they don't know anything more than what I've told them and they do no have access to my medical records. So, Marianne said I am on the list because I am actively receiving treatment and that I respond so well to reflexology that she would like to see me every week to help work through some of the symptoms as she can. I love her for that. She is so attentive during the session, because I cry a lot, she tells me different ways to breathe so I can be calm and still have my feelings. It's just such a relief to be touched in a non-medical way, in a room that smells really good and there's always soothing music. And at the end, she puts my socks back on my feet. I can't tell you what a humbling experience that is for me.

Pat has been picking up B at school this week because I can't visit that pool of germs. So I had a few lonely minutes alone before my family came home and it was so good to see them. I have been meaning to write a little more about being lonely. I am lonely these days not because I don't have stellar people around, calling me, sending care packages and books. I am lonely because I finally realized that no matter who is around me, I have to do this journey myself. Not by myself, but myself. It hit me in the hospital when the oncology nurse looked me in the eye and said, "and infection for you is a big deal, life and death, so don't mess around." This was when I was complaining about getting rid of the houseplants and not being able to pick up and drop off Bennett.

At that moment it made sense to me how tenuous things are at the moment. Life and death seemed really abstract, but hooked up to three IV antibiotics in an isolated room with warning labels on the door is nothing to mess with. When I took walks around the hospital I had to wear a mask, when I was in the ER, I had to wear and mask the entire time I was there, even while I was asleep. It sort of put things in perspective for me. Okay, Mary and Libby were wearing masks too, troopers that they were (and are), but it was my body fighting the war. It did a good job and I will do everything I can to protect it from another fight like that, because I want every ounce of energy that I can muster for the bigger fight. For my life.

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.

Tomorrow Chemo

Yes, tomorrow is chemo. At this point I feel little like maybe it will happen and maybe it won't. Everything has been so unpredictable. I have no reason to believe that it won't happen, it's just that before my second chemo I had to wait an extra week, and before my originally scheduled third chemo I was in the hospital. So let's just hope that this goes off without a hitch - my WBC are okay, the drugs are in stock, and whatever else that I can't think of won't happen.

I had a really great day today. Took Bennett to school, walked the dog, even got into the studio for an hour. I designed the stained glass that will go over the door in the new bedroom. The thing about being in the studio, is I have to be present in order to make work - I mean really present. And that is hard, because I have to think about all the things I try not to think about all the live long day. So I worked for an hour and that is what I could do before I started getting afraid. Maybe Thursday I can do it for longer knowing that I survived today's hour just fine. The fear did not kill me and it never will.  It's just fear. Frickin', wily-assed fear that is my worst enemy- keeping me from my living the way I want to be in my life.

I also got my hair cut today. I had a great experience with Julie's fab hairdresser at Salon O in Easthampton. She made me cry by not letting me pay. Another example of the incredible generosity that comes to me.

I am not sure always how to take it, but I know everyone just wants to do what they can in a situation that is so disempowering. Is that a word?  How about a situation that scares the shit out of everyone? That's probably more accurate.

Today I heard a story from a friend about a guy who has colon cancer and it is also in his liver. He had surgery and had to have 1/5 of his liver removed. Lucky bastard, is all I could think. Of course I don't know the whole story, and of course I am also very lucky, but it's that same thing that makes me jealous of people who seem to be less full of cancer than I am. I have to remind myself that cancer sucks for everyone who gets it. Period. And that kind of thinking helps no one, and doesn't change a single thing. Not my cancer, not his cancer, not the absence cancer in the other people's bodies.

Okay, so let me keep my eye on the most accessible prize - tomorrow's chemo. I want my little pump back, whispering it's hard work to me for 46 hours, reminding me that we are all working hard to save my life one whoosh at a time.

Mary's Last Day Here

Well, yesterday was not a good day. Another day of stabbing belly pain and vomiting. I spent most of the day in bed trying to feel better. It finally happened in the middle of the night and I was able to get some sleep. What misery. Chemo is not for wimps and I think of myself as super pain tolerant. I guess I am not as pain tolerant as I thought. I can't do anything while I have that pain. And I just don't know how to make it different except to stick to liquids only. It's hard to get enough calories with liquids, but I am going to have to do it.

I feel a million times better today. A little weak, but after a thorough Scrabble butt-kicking by Mary, I feel human. It is Mary's last few hours here and I am going to miss her so much. I don't know how we would have gotten through me in the hospital without her here. Never mind all the cleaning and shopping she did for us. I want her to take me with her. It's that old strong feeling that if I leave none of what is happening will be true. But then I remember, wherever I go, there I am. And where I am, so is the cancer and the sometime pain and the fear and all the good things too. Coming off of yesterday, it's hard to remember the good because I am so worried that the pain will come back.

I am going to ask my doc if there is such a thing as a pain medication that I can put under my tongue. That way when I am vomiting I can get some pain relief. This is the second time this has happened and both times it was impossible to keep anything down - even the stuff that's supposed to help.

Bennett is snuggled on the couch, Mary getting ready to go and I am posting. Mary said I needed to make sure that everyone knew that I was feeling better. So now you know that I was feeling terrible and am better. The rain and cool air make it hard to want to do much. That and I feel pretty weak. I keep wondering how I could better prepare for what is happening? How do people get through this? This must be what everyone meant when they say chemo is really hard. But, I must remember to be grateful that I am not suffering as some have. When I had my first round of chemo, they gave me a list if symptoms that mean I need to get to the ER or call the doctors. They are very brutal - vomiting for more that 72 hours, etc. The listing of a fever of 100.4 or more is what took me to the hospital last week. I haven't had anything else on the list and that is something to be very grateful for.

Sometimes I feel pretty lonely. And I am sure that when Mary leaves today, I will feel it something fierce. Another thing to get through and survive. That's the name of this game - isn't it? Surviving. I am looking forward to a time when the name of the game changes from surviving to thriving.

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.

Trying to Feed the Ducks

It's been a pretty nice day. Started out with eggs with Bennett and then off to feed the ducks. We went to Mt Tom thinking their would be ducks on Bray Lake, nope. We were headed for the beaver bridge, but 3/4 of the way there, I pooped out. Bennett was very whiney too, so it was a big relief to her to turn around. We saw three ducks, but they were not interested in us one bit. Bennett and Mary threw some bread into the pond to see if they could be enticed, nope, these were wild ducks and didn't want our stinkin' bread. The fish on the other hand, came out of nowhere to eat it all up. For Bennett it wasn't the same, but sufficed.

Then off to Trader Joe's, where Bennett had a total meltdown in the cheese aisle. She is so so so sad that I can't pick her up. I took her by both hands, lead her outside and we had a good cry on the bench in front. A nice lady stopped and opened a package of cookies for B. We spent the entire time Mary was shopping just hanging out on that bench, talking about how sad it is for both of us that I can't pick her up. She is such a great kid, but sometimes the changes are just too much. Too much for all of us, honestly.

There is some good news. While I was neutropenic, I found out all kinds of new things that I am not supposed to do - see the hospital posts for the initial list. Now I find out that I can't floss, be around anyone who has been recently vaccinated, blah blah blah. As if having cancer is not enough to be freaking scared about. Now I have to worry about every bleeping thing around me, every person, every speck of dirt. Shit. This just doesn't seem fair. The good news, which I almost forgot, is I can eat avocado and any other fruit with a thick peel. Someone just has to peel it for me.

I feel like I am supposed to be more grateful, but I have been scared all day. It's the absence of pain that frees my mind to remember the bigger, huger, scarier picture. And I ask myself what I am afraid of and I don't really know. And I remind myself over and over that I have nothing to be afraid of, like Bob's sister says. So why do I feel it? I just don't know. All I can do is ease myself through it and remember to play with Bennett, hold Pat while we sleep, pray and just know that there are no guarantees, period.

I've Been Sprung

This is what happened when I came home - Bennett crawled in my lap, we watched about 10 minutes of Dora and then she cried and cried. Just a sad little puss, she was. Then she fell right to sleep. Here she is asleep on the chair after I put her down. Lovely bunny of mine.       

I am out and I feel good. I came home yesterday and immediately started feeling like crap again. It was a hard evening, thinking of being in the hospital where I felt fine for the prior two days, then to come home to take such a terrible plunge. Poor Pat thought I might be allergic to the house. But it was just the bad hospital food haunting me. I am sworn off solid foods for awhile to make sure to give my poor GI tract a rest.

Officially, according to my discharge papers, they couldn't find a reason for the fever. They think I got a bug from somewhere. Some germy kid, I am sure. Now we have to make sure to change Bennett's clothes directly after school. Pat has to change her clothes after work, and we all have to bathe every day. Bennett is not going to like that!

Mary and I have been cleaning the house this morning. Wiping every surface with bleach. Ruth and Theo took all the house plants. Zeus has been vacationing in Conway for the week. It's a little strange around here without plants and dog. The plants can come back after I am done with chemo and Z will be back Friday.

It is so good to be home. I am going to do everything I can to make sure to stay out of the hospital, though I have to say UMASS was really good to me. At one point I actually forgot I was in the hospital and thought I was in a hotel. It might have been after-fever delusions.

Mary and I are going to go shopping and after that a nap before we get Bennett from school. I am already anticipating missing Mary. She is so good to have around. The perfect helper at every turn - and she doesn't mind that she put almost 1000 miles on her rental car.

I have chemo next Wednesday and I am hoping this time it goes off without a hitch. Everyone cross your fingers!

Still Here

Yep, I am still in hospital. As it turns out, I did not have C.diff, just a certain high level of foulness never before reached in our circle of friends. All the cultures came back clean, so the best answer I got is it was some sort of bug. After reading just a tiny bit about how to take care of myself while neutropenic, there are so many ways I could have caught something.

A quick over view of what I can't do when I get home:

have houseplants
pet the cat without gloves
touch the fish tank
garden
eat raw fruits or veg
handle raw fruits or veg
let the animals into the bedroom
wear outdoor shoes into the house - this also applies to you too!

You get the idea. It's going to be a challenge, but we can do it. Yes, we can. Because that is the only option. Plus, my WBC won't always be so low.

Why aren't I out yet? My WBC went up in a hopeful way yesterday, but plunged again this morning. They have to make sure they will not go further down tomorrow.

I will give you more info tomorrow as I know it. I feel much better and have more stories but Mary must take the computer home. Until then...

Still in the Dang Hospital

With no release date yet. I am praying for Tuesday, which is what they said when I arrived. Arrived! Hah, was admitted. This is no spa, I can tell you. Everyone has been super nice and competent. I will digress about the only intern who gave me pause:

My first night in the ER - because of of the Neutropenia, I was in my own isolation room with a sliding glass door and everything- this internist (whom my sister called "quite the junior internist) walked in and a little fell asleep on his feet for a moment, blinked himself awake and asked "so, how long have you had cancer?"  My only answer could be, "I would love to know." Then he managed to get an eye open to say some other jackass things like, "Other than the stage-four cancer, the pain in abdomen, and the fever; tell me, how is your health?" I told him he was not instilling my confidence is his abilities. I had hoped it would rattle him for the remainder of his (improved by my candidness) career, but I bet he thought he was having a bad dream about a giant mean white lady.

My other experiences have been really pretty good, and I am happy to be getting better. I am on IV antibiotics- three flavors- Zosyn (piperacillin and tazobactam), Flagil (metronidazole) and given once a day at 5 a.m., Vancomiacin. Every known substance in my body is being cultured and they take more blood every day. Because my implantable port was a possible infection site, I have a IV. They are, right now, giving me IV antibiotics through my port because there is some idea that if the port is infected, it might help.  But, IF the port is the infection site, it can't be used to get blood. Thus, the IV. We won't know if the port was infected until all the culturing happens and that takes a full five days (Friday through Tuesday- it took me a long time to put these two facts together).

Another possbility - clostridium difficil - difficil meaning, of course difficult. This is, as I understand it, a very nasty bacterium that causes stabbing abdominal pain, terrible gas and diarrhea. It also has a particularly foul odor. By foulness alone, Pat, Bennett, Libby, Mary and any other person who came over Thursday or Friday can attest, I am pretty sure I had this. They will know when that culture is done.

I had a CT scan which revealed gastroenteritis, inflammation of the GI tract. Also very painful. Caused by? Chemo? C.diff ? Some other infection, yet to be revealed?

At this cliffhanger, I will sign off.

Basically it was a good thing I came in.

Hospital, That's Where I Am

Just a quick blog post because I am in uMASS Memorial Hospital and only have my trusty iPad. I love this thing, but posting is a pian. The long endless details will come later when I get home. When? Don't know, but I will be going home.

Pat discovered that I had a tempature and while I was napping, decided with Mary and the on call docs that I should come to the ER. Sneaky and smart and I couldn't argue. They were all right and I am here on what is now my third day. I have two things going on that I know of -neutrepenia (sp?) and infection. Bad combination. It means one certain type of white blood cell is very low. In my case, as of yesterday, 700 out of 1000. 1000 is minimum.

I feel tons better, lots of iv anti biotics and my own room because I have to be isolated make for a Better time at the hospital than last time.

I will clean up all spelling errors from home and put in lost more details, I promise.

Back Down - Shouldn't Gamble

Lesson learned. I am in some sort of fight with the gas again. It's totally distracting and pretty much completely consuming. I am trying all the tricks, to no avail. I am sure after the medication I just took (not pain killers) will kick in. I just wish there was a way to survive without eating.

Mary and Libby are here trying their very best to figure out what to cook me to entice me to eat. Ha! Everything sounds hideous. How can a champion eater evolve into this sad sad situation?

That's all I'll post. The first half of the day was great, so there is that to be grateful for. That and family and life. Okay, that's a little better.

Friday Morning Shortie

Didn't post last night because Mary is here. Yay! And I feel like half-a-million bucks. Up from deeply in debt, that's not too bad.

If I could like my Doc more, I do. He listened and now I am off pain meds and am not having stabbing pain. What luck. I only woke up two times in the night - once to pee and once to poop. If I am going to be on gas/poop modifiers then I have to be willing to modify when the poop happens. And I am so grateful I don't care when.

I woke up early thinking I would have a quick post and some tea, but Bennett snuck out and woke Mary up and now they are chatting away. I anticipate this rainy day to be excellent. I will post more tonight.

How About a Little Hope

Boy, after yesterday, and I mean yesterday, not the post two days ago, I really was wretched. I finally called Dr. B. He told me to stop eating solid food, take a whole mess of gas/poop modifiers and if that didn't work by this morning to take myself to a special appointment he made for me today at 10:15.  If I started vomiting, I was to take myself to the nearest ER. That got my attention. I am happy to report his advice worked and I went to the appointment anyway. I bought this list:

EARS
HEART
CONSTIPATION
GAS
PAIN

I came away from my appointment with four new prescriptions, a directive not to take anymore oxycodone, and to take my pulse now and then and call to report my findings tomorrow. And he's never seen cleaner ears (I am sure my Mom is having a proud moment). My ears are just like a text book- and since it's a teaching hospital, I thought he just might drag me around to show the awfully young and faintly scared looking interns. The unfortunate news is there is no explanation why my ears are blowing. We did discover that if I put my head below my heart that it stops. Not my heart, but the blowing in my ears. I wish I could walk around that way.

I have a prescription for Vicodin for pain now. I don't like Vike, so it will be easy to avoid taking it. It seems like there should be a whole host of pain meds to choose from, but I am allergic to morphine, Dilaudid (which I can only remember as dial-a-dude, "Hey dude, I'm in pain!") is so strong that when I had it in the hospital, I was so high that I had to call Bob to talk me down. And most other drugs, including Vicodin, are mixed with Tylenol which is bad for my liver. So the goal is to keep everything in check so I don't need the pain meds. Wish me luck.

My heart has been beating faster than usual. That is a sometime effect of chemo. Dr. B. would like to avoid putting me on a beta-blocker. Huh?! I am the one who gets sideways glances from doctors because they cannot believe how big I am and how slow my heart is. My theory is that I haven't been eating, been taking too much Oxycodone and haven't been sleeping from the pain. Once these things are better, I bet my heart falls into line.

Now you know more about my body than you did five minutes ago. All of this information makes me feel better and almost human. I am still working on feeling present, because though the pain has decreased I am still anticipating it. I am going to follow my new orders to the letter and pray for a very good night's sleep. I really really need it. I will confess to falling asleep while putting Bennett to bed. I woke up about 25 minutes later and she was still awake.

A lovely Bennett poem that really hit me today - "There once was a sad elephant who looked up and saw the sun."

I know just how that elephant feels.

A Little Bit of Pain and Anger

I am pretty much a mess today. I feel awful and tired. I am sitting on the floor trying to get some gas out- but it is so stubborn. My belly feels like there are tiny little mice with sharp teeth and claws running around in there. The docs said GasX, it doesn't really help. I read online that there is the kind of gas that you burp and the kind that is lower and that controlling the lower kind is difficult. No kidding. Oh, and the website (for a cancer hospital, I can't remember which one) also mentioned that it can be painful. Double no kidding.

This is not to say that I am online doing research about cancer- just chemo related gas. I did catch something about stages of colorectal cancer and that sent me into a small head spin. That is when I got out some fennel seed and started chewing, hoping against hope that it would work on the lower kind of gas. Because I want the gas to go away, I don't want to keep taking pain killers.

I haven't really been able to eat either. I was just going to say that I am not nauseous, but I am not sure that's true. Everything smells a little off and thinking about eating just makes me think "ewwww."

I haven't even mentioned how angry I am today. I am pretty mad. It seemed like my life was going pretty well, and bam! Now I can barely take care of Bennett. Monday is my day with her now that she is in school Tuesday, Wednesday and Thursday. And we had to call Aunt Liz to come get her, I just couldn't manage. That pisses me off. And you know what? it's not the cancer, it's the chemo. It feels really wrong to be mad at the chemo, when that is what is saving my life. You'd think I'd be normal and be mad at the cancer. Well, until a few short months ago, we seemed to be getting along just fine.

How twisted is this? It is how I feel though. I have at least four more chemo rounds to go - that's just until the next scan. My plan is for the docs to be so shocked that they 1) see only spontaneous remission, 2) order surgery to take out the little bits that remain. Let's all pray for #1, with #2 a good fall back.

That was my imperfect day. I can't even pep talk myself into feeling any better. I think it's time to do a little gratitude check with God. I'll keep you posted.

Texas Christmas Pickles

A cancer blog with recipes? Why yes, why not? Here is my favorite pickle recipe and it's so good you might want to double it. It's good for people who don't can, because you can just stop after the six days and eat them. Yum. Even though I can't eat them right now, these pickles do not last in this house. Come to think of it, Pat can't eat them and Bennett doesn't. Where do all of our TX Xmas pickles go?


TX XMAS Ruth Style.
Makes 4-5 pints
Takes about a week - mostly waiting

1/2 gallon whole dill pickles.
2.5 oz Tabasco (or to taste)
5 cloves garlic, chopped coarsely
1.25 lbs sugar

Drain pickles, slice them any shape you want and put back in their
jar. Add garlic, Tabasco and 1/3 of the sugar. Shake until the sugar
starts to dissolve. Over the course of the following 6 days, add a
little sugar and shake the jar every time you notice the sugar has
dissolved.

At this point you can go ahead and eat them, but I like to can them.

Get your jars and canning pot ready. 


Drain the pickles and reserve brine, bring to a
boil. Remove garlic and pack pickles into pint jars that have been
prepared with two 1/4" slices of lemon and 2-3 cloves of garlic each.
Water bath can for 15 minutes.  Wait a week before eating, if you can!


Other Stuff


What a day! Good and bad, just like any other day. Pat let me sleep in again, and this time it was totally necessary. I woke up exhausted and didn't feel better until I had a nap in the early afternoon. But I get ahead of myself. Woke up exhausted and pissed at myself for being so tired. And guilty. Tired, pissed and guilty. A nice combination for a Sunday morning. Pat got us all in the car for what felt to me like a hideously long hike, but was really just a 45 minutes stroll on a trail on Mt. Tom. My ears were blown out - like on an airplane. I felt like Darth Vader, without any power and cool clothes. So I was tired, pissed, guilty and couldn't really hear anything but my own breathing. 


At the end of the hike, I looked at Pat and said "I am so weak." She took me home, I went to bed and woke up a new person. Bennett quietly woke me and I was so happy to see her. My ears were better, I wasn't weak or exhausted, pissed or guilty. I was just me again. Pat went to work on the baseboards for the bedroom (we are SO close to being done), and I played with B for the next couple of hours. It was a blast. I am so grateful to have such a life. To be able to have enough flexibility and understanding around me to be able to do what I needed to do to get back to my new normal. What a gift.


I have been asking myself why I feel so guilty for being tired. I am not sure why I thought I would go through this unscathed. Everyone talks about how brutal chemo is. Did I think it would be different for me? Frankly, yes. I thought the main inconvenience would be the time getting the treatments. I didn't realize, really understand, that I was going to feel a way I hate to feel - unable. Unable to get up right when I wake up, unable to clean the bathroom because I can't use the cleaners, unable to go where there are a lot of people because of the germs, unable to pay attention to the kid I waited my whole life to have because I can't hear anything but my own breath. And on and on. 


But I am able. And I am not barfing and I do not have diarrhea and the ginger slices help the anti-nausea meds a lot.  So I will take the week ahead of me one moment at a time. Try to be kinder to myself when I am feeling weak and tired. Remember that sometimes my idea of what to do in a day is too much - even on a good day. 

A Nice Slow Saturday

As luck would have it, or in other words, Pat was nice enough to make it possible for me to sleep in until 9 am this morning. That means I slept almost 12 hours. Is this good? I've been asking myself most of the day. I was very blah this morning - all morning. Feeling disconnected and really tired. It took me until noon to get out of my pjs and out on a walk with Zeus. At 1, Julie and Liz came over to can and paint, respectively. I was a wreck. Not the kind of wreck you might imagine, but sort of tight all over and the only thing I wanted to do was go to bed and read HP. Any other day and I would have said it was okay, but I was so off that I knew not to do it.

So Julie and I played the sorting game. A game where you name a feeling, thought, memory, physical sensation and a few other things until you sort out what is keeping you from being here, now. It helped a lot. Mostly stuff you can imagine. Lots of physical stuff was plaguing me, but what was really bothering me was I was overwhelmingly sad, grateful and scared at that same time. Just needed a good cry and now I feel so much better.

Another lesson learned. Better to do than avoid. I knew I needed a good cry but was desperate not to. Just wanted to be the strong chemo girl, so brave. Ugh! Strong chemo girl is a person too. I am so tired of worrying that if I am not thinking positively hard enough or plowing through like a trooper, that somehow I am going to compromise my recovery. It's a lot of pressure to be under as it is, just to walk around knowing that I have cancer and that I have chemotherapeutic drugs coursing through my body and there's not much I can do except accept. You know what I mean?

In every other way my life is as I want it. I love my family and my friends are incredible. I love where I live and while literally watching the second hand on the clock today asked myself if I died tomorrow would I regret using these moments just this way, and the answer was no. Pat and Bennett at the park, Zeus at my side curled up on the bed. It was very comforting. I will keep asking myself this question, just to make sure that I am on the right path for however long I have. Because, as many of you know, I believe that there is no guarantee, period. Not for any of us (sorry, everyone), ever. And that means I have to be here, now.

I Felt Great

Then I had more chemo and some soup that did not agree with me. But now I am better and feeling great again. How resilient the body is - pump it with poison and bad soup and five hours later, all is well. Knock on wood.

I will keep you all posted. Dropping off the chemo pump was fine today. The folks at UMASS are awesome and in every room there is original artwork. There is humanity in that place -everywhere. I like it.

I Should Have Posted Last Night

I really should have posted last night. Instead I got sucked into the idea that watching some TV on Netflix would be more relaxing. Well, I dipped into an episode of Nip/Tuck, which is usually about two womanizing, ultra-rich, plastic surgeons and their adventures. This episode, of course, had to be about one of the men finding out he had stage-two breast cancer and his response - more womanizing, breaking things, drinking too much, screaming a lot about how he was dying. Not a good show for me to watch. I start to get a little wigged out when people talk about stages of cancer and I remember that the cancer in my non-TV body that is now being pummeled by chemo is stage four. I get a little jealous of people with cancer at less than stage four.

It's all very bizarre.

Then Pat and I decided that we should take the recommendation to watch Weeds, a show about a newly widowed woman who deals pot in her tony suburb. It's a good show, this episode just happened to be all about how the kids were adjusting to the loss of their dead father. At this point, Pat and I just got up and went to bed. 

I should have posted last night. That is the moral of this story. TV, movies, and most books have some sort of event, and by event, you know what I mean. Some horrible tragic hurt that the story revolves around. I just don't need that at all. I have my own event that I am trying to manage. With a goal of managing it gracefully when I can. It doesn't always happen the way I want, but I sure give it the best try I can.

I had a lovely evening with Bennett last night. Pat was at her Tai Chi class, and I got to put B to bed by myself. She loves her new school so much, I can tell because she has been telling lots of stories. We read books, I told her a story, she told me about five stories, then sang me a song that she made up. It went like this "oh my heart, oh my heart, my sweet little baby, go to sleep." I just about burst into tears of mixed up joy and sadness. What a gift to have such a life around me. 

And that's the thing I have to remember when I am trying to escape into TV. The only real place worth escaping to is my real life. That is where the joy and relief come from. To talk to the people I love, have a little prayer and light, that's where it's really at. Can I hear an amen? Amen.

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.

This Was Not Good Bye

One of the traumatic things that happened, in the support group I went to, was a participant kept telling me that no matter what when I saw my sisters when they visited, it was going to be a kind of final good bye.  That each of my sisters was visiting in such a quick succession was not a show of support, but in his mind some sort of last farewell. No matter what I told him about how they all promised to come when I needed them, that it was about fun and we were going to play games and eat great food, it didn't make one bit of difference, he was not to be swayed. Of course he was projecting his giant load of crap onto me, but it really freaked me out.

I told this story to my sister, Joanne, today. She hugged me and said, "no way is this good bye." And I believe. In fact when she and her son left I was super sad to see them go, but with a sadness that comes of the true joy of loving someone and experiencing their absence. My niece too, but she will be back in a couple of weeks, when Mary comes to visit. Another sister who is not coming to say goodbye for ten days.

Bennett, of course, is bereft of her cousins leaving. Gentle and lovely Libby and always willing to go poop hunting Tim.  She was just crying for her cousins, literally. She knows a good thing when she sees it.

I am gearing up for chemo tomorrow. I feel pretty confident my white blood cells (WBC from now on) are better. I got a mosquito bite this morning and it actually turned red and swelled up for a time. And it itched. All good things. Trust me on this. Liz is going to pick me up at 6 am, which means she has to leave her house at some terrible time, which means she is a good good person, to get me to the lab at 7:30. See the doc at 8 and if all is well, and it better be, 8:30 in the chemo chair.

Keep those messages of love, light and prayer coming my way. I am going to need every ounce I can get for round two - ding! ding!

Oh Was I Sick!

What happened? I woke up at 6 a.m. as I do every morning, ate my four bites of yogurt, ate four more bites of yogurt and went back to bed. The step I missed, between the four bites was to take my anti-nausea medication. Oh, was I sick. It took a few hours for it to hit, really about eight hours before I was actually barfing, but the hours before that were terrible. Even the pain meds couldn't touch it. Luckily the vomiting only lasted a few minutes, once I was done, I felt so much better. Imagine the people before me who've had to go through chemo without the meds we have now. How I felt last night was how I imagine chemo would be like - pure misery that nothing could distract me from. Dr. B. told me that if I follow the regimen that he spelled out, I shouldn't have any nausea. I didn't realize how serious he was. I will never miss another pill - have set up my pill minder system and have Pat on full alert now.

I had a great night's sleep, woke up to the pleasure of my sister Joanne and two of her kids here. They have all of us under their spell - the perfect visitors. Bennett is totally in love with her cousins and when she first woke up with morning she said "is cousin Libby still here? And the other one too?" It may have been the hardest 30 minutes to wait until she could go snuggle with cousin L.

Tomorrow B starts her new school. Wish us luck.

Hello I am Still Alive

I am not sure what I've written that may have conveyed that I am dying - as far as I am concerned I am not. Okay, if you want to get all philosophical on me, we are all dying from the moment we are born, yadda yadda. But, right now, this very minute, I am very much alive and kicking. So, please, no more drunken reading of this blog, and sad depressing emails. When I know something, I promise I will tell you all. Until then, I have five chemo treatments to get through until the next scan. One scan at a time, please.

Here I am, with a little less hair, and one of the five jars of pickled peppers I canned today. Some of you might remember that I pledged to preserve pickled hot cherry peppers and carrots this year - see post You Got the C-A-N Right. They smelled so good while they were cooling off, I wanted to rip a jar open and eat it right there. Irony being what it is, I can't really eat pickles or hot peppers. It felt great to do something I love to do, that is easy, and takes less than an hour. I have the tiniest touch of fatigue.

I had a great day today - thank God after yesterday's sour-pussedness. I will admit to praying for better patience and clarity today, especially talking to Bennett. It worked. Why is it that once you ask for something out loud, it comes? It's genius.

I walked the dog by myself, Pat went to her class where she is learning to make glass bugs, Bennett and I had three hours to play and hang out before Aunt Ruth came over. B was so much calmer that R and I actually got to sit a talk for awhile before B commandeered Ruth away for games of all kinds and a walk outside on this blustery day. I got to can, rest, finish book four of Harry Potter, with a little worrying here and there. I don't start the serious worrying until about four or five in the afternoon. At that point, I think I am spent from holding it together, maybe the fatigue kicks in. Maybe it's simply the winding down of another day? I don't know. I am getting better at this time in the afternoon (I am tempted to call it cocktail hour, but none of that either) every day.

I do know that I am going to end this post by quoting the last line of The Goblet of Fire. "And as Hagrid had said, what would come, would come...and he would have to meet it when it did." Time to go sharpen my sword.

I Feel Like an Illegal Alien

And my cover is about to be blown.  So far I've been able to mingle in groups of folks who don't know me and not say a word. They don't know, they have no need to know, I don't tell them the big scary secret that I am living amongst them, but are not like them.. This will no longer be true when I have no hair. They will know my secret, there will no way to keep the secret.

Not bald yet, but I'd say a good quarter of my hair is out. Not all in one spot, that would just be a cruel joke, but my hair is different enough that a friend asked if I got a haircut. "Nope," I said, "it's just falling out." So the jig is just about up. I have to come up with my cancer look. I've seen some bad-ass women in the chemo chairs with cool bandannas, one lady with a turban, wigs that look like wigs and wigs that you'd never know, and most people with their pates just hanging out for everyone to see. I hope I can be that cool.

When I get my look, I'll post a picture. No one wants to see the in-between phase, it's just me with a little less hair.

Today I turned 45. I have been mired in ambivalence all day. I should be celebrating, I feel like crap, I am nervous this is my last birthday, I need to rest and scheduled too many activities, I am a loser because I need to rest, and on and on. You get the idea of what's happening in my not-yet-totally-bald head.

As an aside. When we left chemo, the nurse said I am not allowed to use a razor, because I can't risk getting cut. Well, I thought, I don't shave anything, so that's no hardship for me. Except I have been informed that chemo doesn't always get all the hair and I might end up with patches on my head. I will be shaving something, so for my final birthday present I will get myself an electric razor. Maybe Bennett can help, she might think it's funny. Or it might traumatize her for life. Everything today feels like that.

Theo, Ruth and Liz came over to help primer the bedroom walls and ceiling. Boy does it look great! A lot of people have put a lot of hard work into that room. Pat (with Barry's help) did a great job on the floor. It's just all coming together. Next the color and then we move in. I am so happy we will have another bedroom and one so beautiful and wrought with love.

Before I go I will tell you that not posting last night was not good for me. I think not having that release made today a little be harder. So I will post and post and post and not worry that it's too much. And I will be better for it. 

Resting Makes Me Nervous

Today I had another reflexology appointment at the Cancer Connection. Marianne is the most calming and encouraging person I have ever encountered. She worked her magic and during the session I actually imagined that she had taken my feet and taught them to fly. It was very cool. She concentrated on helping me make more white blood cells and told me to go home and spend a few hours resting.

I am not very good at resting. Just hearing those words made me anxious, as if there is something wrong with me. How long will it take me to to realize that I actually do have something wrong with me. I refuse to be defined as sick or ill. I refuse to believe that this cancer, a most uninvited guest, is going to kill me. I am still myself, exactly as I was with the additional scheduling responsibilities of chemo, meds every eight hours, and a daughter who is stressed out and hitting at daycare. Yeah, and I cry way more than I used to.

So maybe having a low white cell count finally gives me enough evidence that I cannot just carry on blindly, but that I need to listen to Marianne and Dr. B. when they say to participate to my comfort level.  This, I know, is hard for me to ascertain. My wonderful, fabulous, famous to my friends former-therapist, Karen Rowe, would often tell me that I needed to redefine what a person should be able to get done in one day. I would tell her what I did in a day, and she would laugh and say the for the average person that would be a week's worth of stuff. I felt super lazy today, and in the spirit or Karen Rowe, I will tell you what I did today and we will see if it was a lazy day or not. Bank, reflexology, oil change, made cookie dough (too hot to bake), sat around trying to rest for a couple of hours, picked up B, went the grocery store and came home and watched Christmas videos with B. I am pretty sure Marianne had something different in mind.

I don't want to forget to post about Lynch Syndrome. This is a genetic syndrome that can explain some colon cancers in youngsters like me. Dr. B and I talked about doing the test on the tumor matter harvested from the liver biopsy, but there is so little Dr. B. wants to save it in case other tests have to be done. He also said based on my family history, it is very unlikely to be Lynch Syndrome. Well, thank God for that. I didn't look it up (and if you do, please feel free to keep it to not tell me), but I am relieved to hear this for my sisters, brother and their kids and their kids' kids.

And thank God that for the time being I don't have to get another liver biopsy. It's like having someone kick a lead pipe between your ribs and into your liver with their jackboot and you are not allowed to breathe.  Enough said.

I can feel the white cells multiplying! Now I really need to go rest.