Crying for Cabbage

Tonight I actually started crying when Pat ate her dinner. I was so jealous. She sat down to eat some sauteed cabbage, carrots and chicken. Not exactly gourmet, but compared to the Ensure and the anti-gas pill I was consuming...and it smelled so good. I realize now that I haven't had a real meal since I was in the hospital five weeks ago. Sure, I've had my soups and my beef broth with an egg, but my soul wants a plate. A plate with whole foods on it that I can bite into and chew. Ah, to chew, what a thought.

There are two problems. One is the blockage by the big tumor in my colon which means not much can pass through. I won't go into too much detail, but you get the picture. The theory is when the tumor shrinks, the area for what used to be food to pass through would get bigger, thereby making eating easier. There is also the real chance that this part of my colon will actually shrink with the tumor, then I will be in exactly the same predicament as I am now. Time will tell.

Problem number two is the gas. And we've talked about this before. An indelicate subject, but one we all know intimately. The place where the tumor is sometimes blocks the gas from getting to where is needs to go - which is out. So I take an anti-gas pill four times a day. They help a ton, but there is still enough air movement to make Pat turn her head and Bennett to ask if there is thunder in there (a direct quote from last night).  And it does hurt sometimes. Not like it used to, but if I am not super careful about what I eat, when I eat, how much etc., I can get into some real trouble, which really scares me.

And it makes me so sad. Sadder than I thought it would. I guess it's a little like my hair. I didn't think it would bother me, but it really does in a deep and troubling way. I knew the cancer would really bother me, but I just assumed the hair and the food and the fatigue would just be sort of incidental. I knew my life would change, but not so thoroughly. I am not sure what I was thinking. I guess there is no way to know until you get here. I can talk to as many people as I want who've made it to the other side, but I can't know what my journey, my response, will be until I am there.  Sometimes it is as big a surprise to me as it is to you.

Meeting with Dr. B

Today I had my big meeting with Dr. Bathini. I came out of there terrified for my life. I didn't really learn anything new, just that he has a way of presenting information in such a stark way that I feel knocked down. There's nothing new to report, and I know that logically, but logic is lost to me in this situation. I still have the same cancer I did yesterday, I still know that I will never go back to being who I was before I was diagnosed - physically that is. I get that surgery, if any, is a long way away. My liver is a mass of tumors and my lymph nodes are a mess. I get all that. It's just hearing it all again, in the doctor's office while he is trying desperately to help me remember there is so much good news. So many advances in the medication, so many people living much longer than they ever imagined, so many new procedures and drugs.

This all well and good, but what I really wanted to do was shake him by the lapels and yell. Yell anything, things like "am I going to live?" "will I die a very painful death?" "what the hell are you talking about, this can't be my body you are talking about."

Now we are getting somewhere. How could all of this be about me? Me, the one who has always been so strong and healthy? How can it be that on July 25th I was healthy (or thought I was) and July 26th I have stage four colon cancer? How long has this been growing in me and I didn't know it? How come I didn't have any symptoms? I can't tell you how many hours I have wracked my brain to figure out if I missed something, did I have some sign that I ignored? Maybe, I just can't remember.

It's just rotten filthy bad luck and nothing to be done. I've cried, prayed, talked, taken an Atavan, it all helps. But, at the same time none of it helps. It doesn't change anything, it makes me feel better, sure. But the cancer is still there.

I am trying so hard to remember what Julie said to me this afternoon, she really gets into trouble when she is living in the future. The present is not terrifying- it just is what it is. What is my present? Pat is helping Bennett to go to sleep. I am posting and getting ready to lie down for the evening. I should eat some of the soup Kate brought by, but my appetite is nowhere to be found. My present is feeling the physical leftovers of the fear I've been fighting all afternoon. My mouth tastes like dirty socks - that's from the chemo. I have a headache from holding myself together. Zeus needs a bath and it looks like we have a line on a new car.

If I let it, fear will steal my life from me. Honestly, I don't know how long my life will be, why would I give it up to something as useless as fear? As my friend Ruth says, "fear, I scoff at you, Ha Ha!" The thought of saying that right now makes me want to have a break down, so maybe I will leave the scoffing for later, when I am a little less teary and a little more steady on my feet, feelings-wise.

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.

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 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.

It's Like Coming Out All Over Again

When I see someone I haven't seen for awhile, the first thing I think to tell them is, "I have cancer." I don't, but it's there. Mostly I say I am fine, Bennett is thriving, she is going to a new preschool in a couple of weeks, blah blah blah. But my mind is not participating with me - it's got a mind of its own. It wants the relief of telling this terrible truth. To anyone. To everyone. That first week, I would have thought the sullen cashier at the grocery store was just the person to confide in.  The news is that surreal to me.

But I spare myself the tut-tuts and the tilted heads and the I am so sorrys, because I can't stand them from virtual strangers. My friends can tut-tut me all they want, because they really mean it. And this is a tut-able situation.

I remember when someone I didn't know very well would tell me something awful. It would scare the crap out of me and I would say the right things and make the right sounds and get the hell out of there. Thank God so many people whom I don't know well have come forward to offer real help. Thank God these fine people are not acting like I did. Boy, am I sorry now.

Now I have a chance to be different and help people in real ways when I can. What a lesson to learn. What a hard thing to look back on chances to help not taken because of that enemy, fear.

Again, I will advise us all to avoid falling into the traps fear sets for us. Wily fear, go away, you are not welcome here.

This post surprises me. I had a lovely day. I got to walk the dog while talking to my friend Jessica- who is having a baby in November. I can't wait to meet that new person! Pat, Bennett and I went to Snow Farm for lunch and so P could do some work stuff. We picked apples and pears from the gone-wild trees there. We went to our CSA farm and they have kindly offered me five extra pounds of carrots a week so I can juice them. The weather was perfect and I was protected by SPF85 sunscreen and my trusty hat. We were lucky enough to run into Aunties Ruth and Theo, got to eat ice cream sandwiches and raspberries.

So, what's my problem? Having cancer ruins everything. Not always, just this minute. It puts an unwelcome veil over everything. I don't want it there, I try every trick I can think of to get rid of it, but sometimes it just doesn't work. A friend who had breast cancer said to me today "cancer totally sucks, and Ruth, I mean it really sucks. But it awakened me in a spiritual way that I would never have if I didn't go through it." It's true. When I think of her life before and what she holds dear today, those things are really different.

I will take those words to heart while I struggle tonight. This sucks but here is my big chance to wake the heck up.

The Diagnosis and Today

It occurred to me while I was putting my lovely Bennett to bed tonight that not everyone knows what's really going on with my body.  So I am going to put it here and not pretty it up.  Get ready.

I have stage four colon cancer.  That means that it's in my colon (right by my appendix).  The tumor is "quite  large" and I did not ask what that means.  You know, they always compare tumors to fruit, so I don't know if quite large means a grape or a cantaloupe.  I also have a small tumor in my gut not really on a specific organ.  Some lymph nodes in that area.  The really mean things are the tumors in my liver.  They are on both lobes, so at this point surgery can't be done.  And the really shitty thing is liver transplants are only for people who have liver cancer NOT colon cancer in the liver.  Oh, all of this is colon cancer - the same cells every where.  That we know where it all is is really good.  I want to emphasize this. 

How did I know?  When Pat and Bennett and I were on vacation in Vermont, I thought I ate something really bad and had terrible cramps and a fever.  I slept for two days and felt fine.  That was my colon perforating the first time.  A week later at home, the same thing happened.  I thought if I went to bed for a couple of days it would get better.  Wrong- that was my colon perforating the second time.  I ended up going to my (now ex-) doctor and was given IV fluids for dehydration and sent on my way. I went home, took a nap and woke up with a fever of 103.  I took my butt to the ER. Okay, Pat and Bennett took me to the ER, but not before Bennett changed into her favorite bee dress. 

There I spent a week and had the procedures large and small listed to the right.  Trying to get better in the hospital is like trying to get better in the Subway.  Impossible.

BTW, two weeks before we went to VT, I had my annual check up and was given a clean bill of health.  This makes me furious.  I am not even sure furious is a strong enough word.

Take a deep breath, please.  My motto is (with the help of Janna and God) the doctors will be amazed when we check in two months from now.  They won't believe their eyes that the tumors have shrunk and totally disappeared.

On to today.

I got to UMASS Memorial at 9:30.  We left at 4:15.  I had about 10 drugs. I am looking at the list they gave me, but I am sure some are missing.

Pepcid, Zofran, Decadron, Compazine, Irinotecan, Levcovoran, 5FU two ways.  I know I also got two steroids and some Benadryl.  The Bendryl was for the extremely rare side effect of slurred speech from either the compazine (anti nausea) or Irinotecan (vitamin that enhances the efficacy of the LV).

You want to get some attention on a chemo ward, start slurring your words.  I am super impressed with how sophisticated the operation at UMASS is.  I had a really great meeting with a nutritionist to help me get the calories I need to stop losing weight.  I am thinner than I have been since, I think, JR High.  A year ago, or even 2 months ago, I would have been thrilled.  Now it freaks me out.

Pat and I played two games of Scrabble and watched Wallace and Gromit in "A Matter of Loaf and Death."  Scrabble-hater Pat totally kicked my butt.  She might like Scrabble a little better now. I did tell her to avoid playing with any other van Erps as they might not be as, um, I will stop there.

A good note to this post...here's Bennett in her bee dress from Aunt Mary.

You Got the C-A-N Right

This from my friend Julie after telling her that I had been thinking about starting a blog about CANning. But you get cancer instead. With maybe a little canning here and there. My sister Mary who lives in England and I used to email and call each other all the time about canning, but now we talk about, well, not canning.

I do vow to can two more things this year - hot peppers and pickled carrots. Let me assure you all that I started the year with lots of preserving. Two kinds of pickled ramps (wild leeks), rhubarb jam and relish, blueberry and raspberry jam, pickle relish and pickled green garlic. I wonder if wondering if I will be here next year to eat the pickles makes me not want to make them. I call those gallows thoughts. Of course I will be here, of course I will be eating and of course I will want to have toast with jam with Bennett. It's just the fear talking.

Fear is so sneaky and mean. I suggest avoiding it whenever possible.

As I write, there is a huge summer storm. The sky black, streaks of light and booming. Bennett calmly reading a book and Theo in the half-finished bedroom looking at what we need so she can magically do all the trim for us. Today she is my hero- willing to just do it all and be patient with me when I don't know what I want. I know what she does will be gorgeous.

Later tonight I will post photos from our aquarium trip.

The Sunday Before the Monday

It's Sunday night and that probably seems like no big deal.  For me it's a hard time.  Tomorrow Pat goes to work and I have the whole day with Bennett.  What a joy to be with her - just the two of us, that's true.  The only thing is that eight hours with a three year old doesn't take up a lot of mental space.  So my mind wanders, wanders to places I don't want to go.

One might say, stay in the moment, it's still Sunday.  One might also say shut the hell up, this is about as scary as it gets. 

I have a nice long list of things to do and hope that I have the energy and the gumption to do them.  We are trying to get the second bedroom done before the end of the week - that mean finishing the walls, trim, painting and getting the floor installed.  And I had to send an email to my most favorite electrician to tell him I have cancer and need him to make the power live this week.  This is all so I can have a place to go if my three different anti-nausea meds and three different anti-diarrhealmeds don't work.

Who knew?  Who knew that clearing out the medicine cabinet for actual medications would need to happen?  Where are we going to keep the Q-tips?

I had this idea that I would want to write all the gory details about the procedures I had (note: first post), but now I don't want to.  If you want to know what something is like, ask and I will write about it.

I will say that going to the Mystic Aquarium yesterday was a blast.  I felt old old old because I am not my robust self, but seeing those seals really reminded me of the sheer power of nature and fun. 

I will end this post on a good note. The PET scan did not reveal anything that we didn't know about.  This is very very good news.  I was super afraid the cancer was also in my lungs - and it's NOT!  So a super big YAY and thank you God for that one.  And for everything.  I can feel like light a little better now.  Thanks.

What's happening today more on what happened later

Today I rested. I needed a day alone to watch t.v. And slip into a nice painkiller induced nap. I had a power port installed yesterday. That's an implantable port in my chest to help administer the chemotherapy. I have to say it hurts more than I thought it would and I do not get to shower until friday AFTER my appt with my oncologist.

Check out the port site www.portadvantage.com if you want to know more. I have not been on the site bc I am not doing Internet research myself. It's just too damn scary.

Tomorrow Bennett will go to daycare so I can continue to rest.

Some things I want to write about that have already happened:
The diagnosis
The liver biopsy
The endoscopy and colonoscopy
How did I know to go to the hospital
Our lotsahelpinghands.com website