Saturday, September 10, 2011

We have made the decision to stop treatment, which just seems to be tearing me down and not affecting the cancer. We switched to Hospice and they are wonderful. No more doctor's visits because she comes to us. Nancy, our nurse, says we are focusing on getting my immune system built up. No more blood draws or scans. With treatment out of the way, I can focus on getting my immune system strong enough to take it on. I can get my yoga practice going again, which will help physically, mentally, and spiritually. I have a portable pump that is giving me regular doses of Dilaudid into my port and can push the magic button to get a dose every ten minutes. Dilaudid is like morphine only stronger. Next week we'll work on using just the pump and ditching the patch. We have Maria in to clean and often do our laundry, so Hospice is going to send us someone on her off weeks! I have a nurse on call 24/7 so no more ER visits or hospitalization. Nancy had Casey making homemade veggie/chicken broth yesterday and it's delicious, full of good things and made with love. She says I've been eating incorrectly so she's putting me on the right track. I started vomiting pretty much the minute I got home from the hospital, so first goal is to break that cycle. Second is to get well enough to be up and around more. Yoga! I can't, however, go to a studio because my blood counts are so low. Casey and I are going to be practicing both yoga and meditation together.

Hospice no longer runs out after 6 months. Nancy works through Marian, which is a Catholic hospital, so they will find someone to cover the 10% our insurance doesn't pay. They have their own pharmacy so they will be paying for my medication. The services will increase as they become necessary. They'll send some to help me shower and dress if needed. Hospice is amazing!

I am also filing for disability retirement and will officially not be returning to teach, which is just breaking my heart. I need to devote myself to wellness care and hopefully can having the best quality of life possible for as long as possible. There is more cancer growing in there, in an inoperable spot, which I am actually relieved about that. The last thing I need is more surgery.

What I'm saying is my cancer does not respond to treatment, and my cancer is incurable. There are a lot of women living with it as a chronic disease for years. I believe that is within my reach. We are not giving up, we are changing the goals and the focus. Don't count me out yet!

What can you do to help? You can stay happy and positive, As my friend Susan says "Courage is contagious. I am happy to receive phone calls, FB messages, emails. Don't be afraid to get in touch. I am not sad, I am feeling a lot better. OK, I'm sad sometimes but I'm not going to be falling apart. Casey and I are going to Big Sur stay Ragged Point Inn, where we spent our honeymoon. Next we will definitely head up to Eureka. I feel like I need to go home and I really want Casey to see the really beautiful part of California.

We will be having a party here at our house soon - maybe for my birthday. We need all you boys to come back and bring those instruments and play music with Casey. We are going to put wood flooring in the guest room and hallway so it will be fit for guests. We also have a double bed frame from the Ranch and we're goin gto put another bed in there. Bella still occasionally poops in the house. Bummer! I'm hoping to put those floors in the downstairs TV room, our room, and the pool table room. We have a Home Depot credit card, so we'll do a room, pay it off, and start on another. We have a leaky basement and roof that need to be addressed. I want to get this house in good shape so Casey can sell it and make a profit. This house is way too big for him, and at some point it will just be Casey and Bella because our Benny dog is getting very old and feeble.

So, don't cry and get all sad. Who knows - I could have months left or it could be a few years. Nancy says I will know when time is running out and I feel nowhere near that now. If death comes sooner, remember I've lived for 50 very happy years. I loved my childhood, I loved being married to Jack and I don't see our divorce as a failure. We had many happy years together and we have stayed friends. I have two big regrets - I was hoping for Casey and I to have 30 to 35 years together. I hate the thought of leaving Cate, my beautiful niece. I love her so much and we have a strong bond. I know I will see everyone when it's their time, and I will be with mom and dad. I always told her I wanted her to meet me with Duder, my beloved cat, in her arms when I get there. Molly Jones and Margy, too... but not in her arms! :)

I got to live my dream, which was always about teaching. It helped so much with my inability to conceive. I did not get to experience motherhood this time, but I have loved many kids and I have loved having them in my life. I have Cate, whom I consider to be partly mine! I got to have relationships with my friend's kids, knowing them from when they were still in their mommy's tummy. Peggy and Kirk's 3 kids feel like they are partly mine, Susan's 2 kids, the same. I got my baby fix when Terez's kids were babies and that also helped quite a bit. I did not get the baby I dreamed of, but like cancer I didn't let it ruin my life. Trust me, life is too short to be unhappy.

Keep those prayers, intentions and positive thoughts coming our way. I saw a bumper sticker somewhere that said "Cancer is love." I have found that to be true. It has brought me closer to everyone in my life, deepened my love for Casey and his for me. I love my community. People get in touch give me the gift of their love and support. Not many people get to know, while they're still alive, how much they are loved. It's a powerful thing. If love healed cancer I would have been cured already. I was sick for probably 5 or 6 years before we got the diagnosis, so I have really not been well, except for 2010 where I had a brief reprieve, and Casey and I got married. I don't want to continue treatment and feel bad for the rest of my life. It's all about quality of life. When we had the talk with Dr. Spillane and made our decision, the first things Casey said to me when we walked outside and said "I'm so glad we got married." What a guy, huh? A lot of marriages break up under the cancer strain, but it has made us stronger.

I have written a very long post, I fear. There's been a lot of things waiting to come out!

Namaste, Jill

Here we are this morning. I don't look unhealthy or unhappy. Neither does Casey. It's all about the love, now!

Friday, August 12, 2011

Another Obstacle

The biopsy I has last week confirmed that there is cancer in me again, or still. Next Tuesday I will have my first treatment. This seems like round three to me, but perhaps it is just an extension of round two. No surgery this time. The drugs are Dioxin and Avastin. The hope is that this will cause the tumor to shrink, and then I'll get healthy enough for my immune system to do the rest. I'll have a treatment every three weeks and a CA125 prior to each treatment to see if it's working.

I will not be going back to work to start off the school year. I really thought I'd only miss part or half of last year, and here it is a whole year later and it's starting all over again just when I thought it was over. I hope I get to back soon. It's breaking my heart, not teaching and having all those kids in my life on a daily basis.

The good news is that I have been feeling better lately. I am no longer sleeping all day, and I have been getting out and doing things with friends and with Casey.

Here's my new do, thanks to Lizette who came to my house to cut and color my hair:

N

Namaste, Jill

Monday, August 1, 2011

Update

My CT/biopsy will be Thursday at French hospital. I have to be there at 1:00 but the scan and biopsy won't happen until 3:00. No food or liquid prior - how fun for me. At least I don't have to drink that gross barium stuff. I won't see my oncologist until a week later because he will be on vacation. My latest CA125 is 85, which is up 5 points, 50 points higher than normal, but much lower than it has been when cancer was present. I'm thinking my belly is still fried from the radiation and it's keeping the number up. I don't see how cancer could be growing in there after all of the chemo and radiation I have endured.

I called my big brother and told him we are not going to be able to take our trip to the Smith river with them. Casey and I are heartbroken over this, but it can't be helped. Casey says we will go as soon as I'm well. Casey and I have not had much of a summer. In fact, I will be very glad to see the end of 2011. It has not been a good year for me in many ways.

I am back on track with my medications, and I am sleeping close to 20 hours a day. It helps with the boredom! I am not answering my phone much, since I tend to be asleep when people call and I also just don't really feel like talking. I apologize to everyone whose calls I haven't returned, and to several people who have been wanting to come see me and bring me a present. Hopefully I'll be feeling better and more social very soon.

In the meantime, I am spending lots of time sleeping with Bella during the day and with Casey at night. I am just loads of fun these days!

Namaste,
Jill

Sunday, July 31, 2011

Feeling Slammed

Just when I think I've turned a corner and I'm going to be well, I get slammed back down again. Whatever is going on with my gall bladder, or near it, is making me very nauseous. I'm taking two different anti-nausea medications to keep it under control. Last weekend I ran out of one of them without realizing it and I paid the price. I had a miserable night of dry heaving until Casey went to the pharmacy at 4:30 am to get my prescription. Bless my husband and Walgreen's 24 hour pharmacy. I got it under control, but I am still having trouble eating and being up. Apparently there are lots of people who need ultrasounds and as of Friday they hadn't found an available room and doctor at the same time. Sarah from RDC (Radiology Diagnostic Center) in Templeton has been working on it, and finally she just called the doctor my oncologist asked for directly. He said he'd do a CT guided biopsy instead and we're all hoping for Tuesday. Until we figure out what is causing this I won't be well. It all started during my last five radiation treatments, and I really think it pissed off my gall bladder somehow. I doubt that cancer could manifest right after chemo and radiation.

Casey and I are still hoping to make our trip north, but it all depends on when I get the biopsy and when they can figure out what's wrong and try to fix it.

It has been almost a year since this stupid cancer came back to try and get me. I refuse to let it win. Hopefully they will find the problem and there will be a simple fix. Meanwhile, I miss writing my blog and I'll try to do it more often.

Thanks for all of the love and support. Namaste, Jill

Wednesday, July 27, 2011

Getting out into the world, a bit

It's a beautiful morning here in A-town, and I'm Just sitting here trying to decide what to write. I have been sleeping 15-20 hours a day, so my world is pretty small right now. I'm wearing a patch with pain medication, and it makes me want to sleeeeeep for days. It's better than insomnia, that's for sure.

I'm going to lunch with Debbie and Amelia today. It will be good to get out and see my friends. Sydney and Yvonne are coming this afternoon and going to the fair to see Kid Rock. I haven't seen Sydney in Awhile, so I'm excited and I love Yvonne, too!

We will be leaving a week from tomorrow to head north. We'll make a bed in the back of Stella for me and the dogs - good thing we have Stella Blue, or I probably wouldn't be going. I think the redwoods and the Smith river will have a powerful healing effect on me. When we get home from the Smith I'll have a week and then...back to work! I'm pretty excited about that.

I think I'll go back to bed for awhile now. I am going to try to get back into my daily writing routine.

Namaste,
Jill

Here's me and Bella, in bed together:

Tuesday, July 26, 2011

I had fun last weekend. I actually left the house and had some fun! Our friend Troy was playing at the Carlton. Danny also came for the weekend and he brought ahi and made dinner Friday night, and Saturday night he brought me chocolate cake. Danny is a most excellent friend! Richard and Mary came too, and we all went to see Troy and Eddie at the Carlton. Casey got up and played guitar and sang a few songs with Eddie. It was great, so good for Casey to have so much fun.

I started feeling better last Friday. I had a massage and a chakra balancing session with my friend Linda. It was truly amazing. I could feel that my heart and my solar plexus chakras were blocked, and I felt it when they opened up. I could feel the energy and Susan and Linda could see it in the pendulum Linda was using. I felt euphoric for days afterward. That Friday I stayed up the rest of the day, cleaning up around the house a bit.
I walked the block without having to stop ten times, and I slept that night and the night after for ten hours.

I had a CT/PET scan last week and something showed up near my gall bladder. Could be a few things, but cancer is certainly a possibility. More tests this week. It's really hard for me to write right now - lots of typos. I am very out of practice. I do believe I'm going back to sleep now.

Me and Troy in June:



Namaste,
Jill

Friday, July 15, 2011

My Couch

Last night my bed felt like a prison. I knew sleep was not a possibility, so I got up and took my third steaming hot bath of the day. It helps my aching back. I soaked by candlelight in my Moroccan Rose Oil (By REN, I'm addicted to it) and tried to relax. I have a whirling dervish of a stress ball running loose inside of me. Anxiety run amok. I figure it's probably due to a combination of things: repressed emotions, unexpressed physical energy, fear and pain. After my bath I did a few yoga stretches then did legs up the wall and continued to try to relax. I could not face the bed again, so I moved to the couch. Sydney's right - it's a great couch for sleeping. The minute I got comfy - legs on my heart pillow, pretty much in savasana on the couch - I knew I would be able to sleep. Once I got the dogs back into the bedroom I fell asleep and slept soundly until Casey got up. I drowsed while he did phase one of his work day and I got up when the pancakes were ready. I just took my first hot bath of the day (Hooray for cool Weather in July in A-town!) and I'm back on the couch. I had to write for as long as I could today, and that's it for today. I'm hoping to sleep all day on my wonderful couch.

I believe I'm on my way back up.

Namaste,
Jill

Monday, July 11, 2011

Healing

Today is like a miracle. I woke up feeling better than I have in weeks. I slept reasonably well last night with no sedative, and it was wonderful. I did yoga with Jean an that made me feel even better. Then Casey and I took Jean and Rachel to breakfast. A big day for me. The crippling anxiety that has gripped me for days has lessened considerably. I believe the anxiety was caused by the pain. Between recovering from an abdomen charred with radiation, and my intense back pain for being in bed for 6 weeks, I have been a suffering, miserable, mess. I have done a lot of sobbing, which alarms Casey but I tell him it's good for me to get it out and to just let me do it. I had a few days where I found it helped to moan, so I was moaning on the floor a lot of the time. He joined me sometimes and that helped even more. He has been amazing. Without complaint, he does all of the cooking and shopping, and makes all the meals, he rubs my back, he goes out and get me things that will help or will make me happy, he sings to me to calm me down, he takes my dog for a run even though she has gotten fat and slow and he would rather go alone and have a longer run. I am doing something very right in this life to end up with a man like Casey.

Namaste,
Jill

Sunday, July 3, 2011

Things Look Much Better Today

Yesterday I did two things that always make me feel better: I wrote my blog and I practiced my yoga. Spewing out some of my frustration lightened the load, although I felt like a whiny little girl after I posted it. If you knew me when I was a little girl, you'd know that I was whiny! I can hear my mother saying to me: "Stop whining!" A character flaw that is never entirely mastered, apparently. I did some floor yoga and some bed yoga. I stretched out my spine and my hamstrings...basically I just moved for the first time in a while. It was 103 out, so the dogs and I were sequestered in the dark, cold bedroom. Casey played with other Casey at Sylvester's, so he was gone all day. The first part of the day I was very happy because there were episodes of Eureka on that I hadn't seen, in preparation for the Season Premiere next week! Lame to get so happy about a TV show, but it's the little things. I can also see and hear my mom smiling at me and saying: "You are such a simple thing." Under normal circumstances, it doesn't take a lot to make me happy. Lately it has taken more than usual.

This is the most beautiful morning I have seen in a long time. I love summer mornings in Atascadero. I have been up early, writing, two days in a row. I'm on the mend. I'm sure I'll end up back in my bed at some point, but I can see the top of the pit. Thanks to everyone for encouraging me in my journey...

Bella, yesterday:




Namaste,
Jill

Saturday, July 2, 2011

Lazy and Crazy

In the past, Casey and I have compared our cancer journey as a tunnel. A long, dark tunnel with a distant light at the end. I would describe the radiation portion differently. It's more like a dark, deep well I was thrown violently into and I'm desperately trying to claw my way up the steep walls on bloody fingernails. I know how dramatic that sounds but I honestly feel like I'm in hell. My bedroom has begun to feel like a prison. I am about to start climbing the walls, and the exercise would do me good. I need to get some energy out so badly, but I have just been too sick to do more than a few simple yoga poses or walk part way around our block. It sucks to have physical limitations and a spirit inside that wants to soar. I feel jumpy. I feel trapped. I want to be well so badly it's a physical ache. Sometimes I worry that I won't get well and that I'll feel like this forever. I know this isn't the case because I am a bit better every day. I can stay up a little bit longer and do a little bit more. It's tricky, deciding how much to push myself without overdoing it. My brain is frying from too much TV stimulus, but I've had a headache for days and reading is challenging. I keep Casey awake at night with my moaning, which I can't seem to help. Two things have developed recently: insomnia and an insatiable appetite. I am hungry all of the time and I'm eating my head off. Combined with no exercise, I'm starting to feel fat and lazy. This is definitely the case with Bella. She is getting so round and at this minute, although I've been up for an hour and Casey and Ben just got up, she is still sleeping and shows no inclination to get up. The dogs and I have been lying in the dark, air-conditioned bedroom for three solid weeks and she has turned lazy. We thought she was getting too fat to escape through the fence, but we discovered she just pushes out two boards now instead of one! It has been three weeks since my last treatment. Surely I will be well and out into the world again soon...

Namaste,
Jill

Tuesday, June 28, 2011

Baby Steps, again...

Casey gave me a pep talk this morning. Sometimes I need one. The gist of it is that I need to take on smaller goals. When I do manage to get up, I overdo it and then I suffer a decline. Today is Tuesday. Tuesday is Cathy's noon yoga class at Yogaflirt. I look forward to it, and every weekend I promise myself that I will be there. Lise will probably be there, I told Elaine about it and she was excited...I want to go.

However...this morning Casey asked me to get up and spend ten minutes with him while he had coffee. I even agreed to a cup of milky coffee and some toast. I started out sitting at the kitchen table, staring sightlessly at my computer. Next my head drooped to the table top. Casey suggested I return to bed, but instead I got down on the floor, using Bella as my pillow. (Remember, I Spent a great deal of time on the kitchen floor on Dolbeer St!) Anyway, I was up long enough to take two sips of milky coffee and I was back in bed before the toast popped. My heart was pounding and I had to just lie quietly until I started to feel better.

Here's the thing: I feel pretty good when I'm in bed. So good that I'm often bored. If I get up, a walk to the kitchen feels like I ran full speed around the block. My energy is so low that I don't really feel like talking. Or moving.

Anyway, that's where I am at this moment. No yoga for weeks. Jean is unavailable right now. Cathy, I had the best of intentions but I just can't make it to class today, and if I did I doubt I could do much. I'm pretty weak and wobbly. Come see me when you have time, OK? Love you. Jean and/or Rachel, If you're reading we miss you terribly. Sending big love.

Mike Lang, retired art teach from AJHS. I love this photo - it captures the spirit of the event and of Mike, AKA "Langer:"

I


Namaste, Jill

Friday, June 24, 2011

ZZZZZZZZZZZZZZZZ

Casey came in bring me dinner last night but I was asleep. I vaguely remember watching Jeopardy. He woke me at 7:15 and insisted I eat some breakfast and drink some water, which I did, without leaving my bed. I promptly went back to sleep and woke up again at 10:30 when he came in to change for a run. I slept close to 15 hours last night. No bad, for a girl who suffers from insomnia. It has been hot this week, so the dogs and I are hiding out in the dark, air conditioned room. It could be January out there for all I know! I feel myself getting stronger. Did some bed yoga yesterday!

Namaste,
Jill

Thursday, June 23, 2011

Doctor Visit

we saw my oncologist today. He said that radiation is like getting a sunburn, and that it will take me 4-6 weeks to recover. Excessive exhaustion is normal. I see him again in a month, and in the meantime he just wants me to rest and recover. He said it's like being 8 months old again: I need to focus on eating, sleeping, walking and pooping. What an exciting life for me! It's nice to have no appointments for a month, and it's always nice to see him. He's always so positive.

Afterward we went by the store for a few things and I had to go sit in Stella Blue and wait for Casey. I don't even have the energy to walk around the grocery store. Ugh. So, that's where I am now, ans this is all I feel up to writing. I'm going back to sleep now...

Namaste,
Jill

Wednesday, June 22, 2011

Ups and Downs

It has been twelve days since my last treatment, and I still feel like hell. My stomach hurts - actually, it's not really my stomach, it's more my abdomen in general. Once again, I slept all day yesterday. I'm so thankful for the AC in our bedroom, since it was 103 here yesterday. Every day I think, this will be the day I can get up and stay up because I'll be feeling better. Every day I get up, read my emails and such and end up right back in bed. At least I have been feeling well enough to read - I have been reading a book a day lately. TV is especially bad in the summer when all of the seasons end. So many channels, so much crap. They make one show that does well and suddenly there are ten of them and more coming. Lately I've been watching Ghost Whisperer on Netflix. I do enjoy those supernatural shows!

I have been eating, but it's difficult. Nothing sounds good, which makes it hard for Casey. I am unable to finish more than half of a meal these days. I had to cancel with Jean Monday and I didn't make it to Cathy's class yesterday. Actually, I slept through it. I went back to sleep around 11 and didn't wake up until almost 4! I hate feeling so weak and useless.

I'm sure I will be feeling better in a day or so. I need to get started on building up my immune system and just generally getting stronger. I need my energy back!

I've been up for half an hour, I ate a piece and a half of toast, and I'm going back to bed now. I love my bedroom but I'm really getting sick of it - I'm going to have to repaint and make some changes at some point when this is all over.

Casey, loving on Bella:


Namaste,
Jill

Monday, June 20, 2011

Feeling a Bit Better

This morning I'm feeling a bit less nauseous. It has been ten days since my last treatment. I felt better after twelve days last time, so hopefully in the next few days I'll be back on my feet. So far, I've only managed about an hour out of bed in the morning and then I'm done for. I retreat to my room, turn on the AC, and hibernate. Yesterday was the first time I have been able to read in awhile, so that was a big improvement. Nothing like a little Jodi Picoult to stave off the boredom. I will be so glad to get back out into the world again.

I see both my radiation oncologist and my regular oncologist this week. I'm hoping the plan is to do nothing, except maybe start taking the estrogen inhibitor, and then do blood work again in a month. I'm putting it out there that, after a month of yoga and a clean diet, my CA125 will be in single digits and I will be classified as NED (no evidence of disease.)

Right now I am so looking forward to our trip to the Smith River. I can't wait to take my Bella hiking in the redwoods. She deserves a vacation even more than I do!

This is Ben's way of saying it's dinnertime:


Namaste, Jill

Sunday, June 19, 2011

Howard A Pentoney

I wish I had a picture of my father on my computer so I could post it here. I don't, nor do I have a scanner. I would love to post the one taken with John Wayne, because my dad was much better looking than the Duke. He had movie star good looks. He looked a bit like Cary Grant. He was larger than life, in many ways. He was 6'3", strong and imposing. He was also very lovable, and the huggiest man I have ever known. He sang a lot, he laughed a lot, and he loved his family fiercely. His passion was the outdoors. He taught us to be conservationists years before people talked about it, and I suspect he got that from his own father. Fly fishing was his first love. He also loved to hunt ducks, but it was the fishing that made his spirit soar. Standing in the Eel or the Klamath river in his waders, surrounded by all that beauty, was all the church he ever needed. When he was a kid, his dad took him to Northern California to fish. They lived in Riverside, and my dad fell in love with the rugged beauty of the north and the fishing. He moved us there in 1964, and I will forever be grateful that I grew up a Northern Girl, not a Southern California Girl.

After WWII, dad went to UCSB and majored in sociology. He lived in Santa Barbara when it was small, and so was the school. Next he attended law school at Hastings in San Francisco, where he met his lifelong friend, John Rhoades. After law school he moved to San Diego, and so did John Rhoades, who eventually became a Federal Judge. Dad met mom in Dallas, and she looked him up on a family trip to San Diego. They ended up married, and she had to return to Dallas to break up with her fiance after she was married! They lived at the beach, in the days when San Diego was small and not the concrete jungle it is today. They made friends with John and Doris Starkey, and John married Carmel. The Rhoades had 5 sons, and they became like brothers to us. After we moved north we visited them often, and in the summers we used to switch houses. They'd go to our beautiful summer home on the Smith River, and we'd stay in their beautiful home on the bay side of Mission Beach, right on the beach. Many times we were all at one of those two places together, and that was the best. The Starkeys had a daughter and a son, and Doris was my mom's dearest friend. Every Spring Break mom would take us to their house in Point Loma, and to me a house with a swimming pool was paradise. In August we'd join them for a week at their house in Del Mar, which is right on the beach. With Desi Arnaz living on one side and Jimmy Durante on the other, there was never a dull moment. Doris Starkey is the only one of the group left now. It's hard to watch a generation disappear.

Daddy died in 1999, close to 15 years after suffering a major stroke. It changed all of our lives. Our big, handsome, strong father spent the rest of his life in a wheelchair, his brain a fragment of what it had once been. In one instant, the stroke took most things he loved from him. He could no longer practice law, fly fish, enjoy the outdoors...he was left with a family who loved him and a wife and a daughter who sacrificed their lives to care for him.

I never think of him that way. I have no pictures of him in his wheelchair. I have pictures of him the way he wanted to be remembered. He had so much love in his heart I can feel it now. After he died, I went back home and came down with a bad case of the flu. One morning I was awake but had not opened my eyes yet. I could feel my dad, sitting on the bed next to me, holding my hand. He had big, strong hands and their touch was distinctive. I could feel his presence; it was palpable in the room. I knew in that moment that there is an afterlife. I also knew that is doesn't matter if your church is a cathedral, a synagogue, or the Great Outdoors. My father was a good man, and I know he is somewhere, fishing alongside my mom, his dad, my cousin Ricky, and all the other avid anglers who are there with him. I have felt his presence on other occasions, just like I've felt my mom. It gives me peace to know they are together, and that someday I'll be with them.

Not for a long, long, time, however. I have roads left to travel and it's not time yet for my journey to end.

I love you, Daddy. Thanks for taking me to beautiful Northern California when I was 4 and for giving me an idyllic childhood. Thank you for teaching me to respect the environment, how to hug, how to laugh and smile. Thanks for all of the times you kept me safe. Thanks for marrying my mom and giving me such a strong, powerful example of womanhood to emulate and to love. When I think of you both, I picture you laughing, singing, hugging and dancing together. I would give anything if you were both still with us and I was at Dolbeer st house this Father's Day.

Happy Father's Day and Namaste,
Jill

Friday, June 17, 2011

Feeling Better and a Decision

Thanks to everyone for all of the words of love and encouragement yesterday. You have no idea how much it helps me. After much soul searching and discussion with Casey, I have decided to stop the radiation treatment. I accomplished 15 treatments, and it's enough. I feel like it's counterproductive to do this much damage to my immune system, let alone the damage the radiation is doing otherwise. I haven't had a treatment for a week, and today I feel as bad as ever. It took two full weeks before I felt OK when I took a break from this, so I have about a week to go. I feel I need to spend the summer building up my immune system, juicing, practicing yoga and just generally taking care of myself. This decision has eased my mind and my spirit.

I booked a private with Jean for Monday, and I plan to drag myself to Cathy's Tuesday class at her studio no matter how I feel. This is the path to wellness, I'm sure.

It's rare to do radiation for my type of cancer, because it targets the entire abdomen and it's so harsh. Plenty of women have survived using other therapies. The next thing is to start taking an estrogen inhibitor. I hope I don't grow a mustache...

I'm going to watch Charmed this morning (it just ran its course and started over. I'm such a geek) and then take some Ativan and sleep the day away. Ativan is for nausea but it's also a sedative. Yay for sedatives that work. Hopefully after a day and a night of sleep I'll feel better tomorrow.

This beautiful African princess belongs to my sister. She's wearing the flowers the teachers gave me at the benefit. I dried them and they turned out beautiful:


Namaste,
Jill

Thursday, June 16, 2011

Feeling Blue

This morning I am sitting up at the kitchen table, writing, for the first time in awhile. I have not been out of bed in a week and a half. I felt good going into the radiation, after my two week break. I did five days worth, and then my doctor called and said my counts were too low and said I should take the day off unless I felt good. I felt terrible, so I declined. I felt worse the next day, and worse again the next day...I haven't had a treatment this week and yesterday was the worst day of all. In addition to the nausea I now have abdominal pain. Every time I see the doctor he asks if I have any, but up to now I haven't. I feel a bit better today, but I doubt I'll be up for long. I'm going in to see the doctor this afternoon to discuss the treatment and how I've been handling it...or not been handling it, actually.

From the time I was diagnosed in 2008, I have remained strong most of the time. I only cried a handful of times. I have felt confident that I can, and will, beat this. as I've said many times, the love and support of my friends and family have greatly contributed to this in a big way. The biggest tool available to me has always been yoga. I haven't practiced for 12 days. I am too nauseous, too exhausted, too dispirited. I just read a blog of Cathy's where she wrote about what you lose if you don't practice for two weeks and how long it takes to get it back. I can't help but feel that yoga is more beneficial in my fight than radiation. That going from rarely crying to crying every day is detrimental to the fight. Lying in bed, too sick to read, to talk to anyone, to take a walk, to practice my guitar...well, you can imagine how difficult it is.

Throughout the chemo I was able to still do many of the things I love to do. A simple walk in the sunshine with Casey and the dogs does wonders for my spirits. I absolutely can't do it now - it just intensifies the nausea too much. It's too hot for Casey to take Bella running, and my poor doggy is getting fat and crazy. She is about to go out of her mind with pent up energy. She has been my cancer companion - I brought her home to live with us just four months prior to my diagnosis. While doing chemo I could read, I could practice my guitar, practice yoga several times a week and often go to a Cathy or a Jean class at one of the studios. These simple things kept me happy, positive, sane...Without these things available to me I feel my spirits sinking. I don't feel like a warrior goddess defeating cancer right now. The radiation makes me feel so bad that I feel like the cancer is winning.

I have been dealing with this now for going on ten months. I'm sick of it. It's summer, I missed the whole school year, and I want to be well. I want to take my dog on the trail. I want to practice yoga every day. I want to conquer that guitar. I want to drink fresh veggie juices and eat cancer fighting foods.

I want my life back.

Namaste,
Jill

Wednesday, June 15, 2011

Still Sleeping...

I have to be up this morning to have my blood counts and a CA125 done. We have to be in SLO at 8:30 and Casey laughed at me when I grumbled about having to get up so early. I've been in bed for a week and a half, sleeping like crazy. Taking a shower this morning exhausted me and reminded me of how difficult it was to shower after the surgery. This whole radiation experience is similar to the aftermath of surgery. Too sick to get out of bed, exhausted and sleeping constantly, hibernating...I haven't even been practicing my yoga. Too nauseous. I am eating well, though. I eat small amounts but frequently - or when I'm awake! My weight is pretty steady and although I constantly feel like it could happen any second, I haven't vomited. Small favors...

Anyway, just checking in to say I have not been writing because sitting up at the table is a challenge and I dislike writing in bed. Sorry if I missed your call but it's OK to call - I turn my phone off a lot when I go to sleep.

Namaste,
Jill

Thursday, June 9, 2011

Self Talk - It Works!

It's amazing what self-talk and a weekend full of friends, love ans fun has done for me. I went into Monday's treatment feeling strong, happy and confident I could handle this. I was struggling with my morale before the arrival of the Rock n' Roll boys, and now I am so much better. Instead of visualizing the rays zapping the cancer, I have been giving myself a "self talk" (Sound familiar, former students?). I tell my body that the radiation is good for us, it is killing any remaining cancer and we are strong enough to get through it without being sick and nauseated all the time. I speak to myself in 3rd person because I see my spirit as lecturing my body. It is, after all separate entities. One will live on someday while the other withers and dies. It seems to be working. I told Casey yesterday that I'm putting 150% of myself into this, and containing the nausea with my will. The Haagen Daz and Ben and Jerry's is helping, too. I'll get back to my anti-cancer diet when this is over, but right now it's about getting through it.

Joanne and Peter brought us a chicken casserole (I asked her for it and it's already gone!),Susan brought us lasagna that is almost gone, and Linda sent us, via Susan, a meatless shepherd's pie that is waiting in the wings. It helps Casey, so much to be able to pop something in the oven instead of cooking a full meal. Thanks ladies, your rock!

Anyway, still riding high on the love and music of my dear friends. Now I'm onto planning my 50th birthday party, which will be September 24. I missed the real one due to surgery. Save the date, details to come. It will also be on the one year anniversary of Mom's passing, and I'd like to do something to commemorate my beautiful, feisty mom and her loving spirit.

Namaste,

Jill

Tuesday, June 7, 2011

"Rockin' Down Memory Lane"

I love reunions. I've had a great time at every high school reunion I've attended, and I've only missed one. I love when the Pentoneys get together. I get this from my Dad, who was the huggiest, most nostalgic man in my life until I met Danny McRenyolds! The reunion this past weekend was, to use Jean's yoga word, epic. no, make that Epic. It was our Big Chill, only bigger much more special. Music is the tie that brought us all together, but it's the music mixed with the decades of friendship that make the magic. Danny, Jack Hayward, and Chris Dunne all arrived Friday in the early evening. Eric Peterson came and brought his bass and his stick, which is amazing. It's like a double wide guitar neck that you play with both hands in a way unlike the guitar or conventional bass. Eric makes it sing. Jack set up his rig in front of the windows, Casey brought out his PA and a few guitars, Chris had a few guitars, Danny sang, Casey sang, Eric sang, sometimes we all sang. Richard, Mary and Christine were also here, so pool was played and fun was had. Saturday was the Morro Bay Music Festival, but Casey and I opted out because it was raining and because there was a lot more weekend to go for me. I slept all day long, until Casey and Bella left to go running at 5:30.

Saturday night began when Troy O'Shann was the first to arrive. I met Danny, Troy, Jack, Eric and Tommy Shanahan when Sydney and I went to see their band at Sweet Springs Saloon in Los Osos in 1981. The reason this reunion came to be is that Tommy was coming to town and hasn't been here in 25 years or more. At the peak of Saturday night there were probably 40 people at our house, including all of the musicians from the night before, plus Tommy, Troy, Brett Merrill, and Ted. I invited Ted and Janice because they had a gig I thought they would enjoy coming by later? Who knew that Ted played in Magnum Force in the '80's and knows all of my friends? So cool! Classic moment when Janice got up to sing and asked for Zepplin, then nailed it. She impressed the boys, she did. Not an easy feat with these boys! We all stayed up until 1:30, when I told everyone to either go home or go to bed.

Sunday was the really big day, the official reunion day. All of the bands were going to play at Sweet Springs, just like the good old days. It looks exactly like it did with really no changes, and in the dim light everyone looks the same and it felt like 1983! Casey and I went at 1:00, because that's what time Tim Jackson was playing, according to his web site. I assumed I would stay an hour or two at most. I admit I wore the same dress I wore to the Pomar benefit, but this time I sassed it up with my very tall, very strappy gray heels. They don't show up in any photo, so I'm going to have to reproduce the moment. I even danced! Felt good, after 9 months without. I had my sunglasses hanging on the front of my dress, and at one point they fell off. I bent down to pick them up off the floor, and somehow my center of gravity shifted backward and I started going down on my butt. Casey was looking at me, caught my look of panic and literally swooped in and saved me. It was a heroic, if slightly embarrassing, moment! Casey and I got sandwiches and went back to the van with Casey McDonald and Mary Gross. Sitting in Stella and escaping the very LOUD music helped me to regroup so we could stay longer. Apparently they were calling for Casey to come onstage while we were outside and everyone assumed we had left. When we returned to the dance floor they immediately asked Casey to come up and play. He played Dave Miller's guitar, and he sang "When she's sad, she comes to me, and a thousand smiles, she gives me for free." At that point I had to don my sunglasses like all of the rock star boys in the room who wore them all day, because I pretty much cried from then on out. I suspect it was a bit like when a small child gets overtired and loses control of their emotions. By then at was about 5:00 and we'd been there for four hours. Every song after that made me cry because it was just so cool to see Troy, Danny, Jack, Eric and Tommy up there together sounding so good and having so much fun. The drummers, Brett and Greg Jackson, were also great but those 5 boys were in my line of site, making me cry. We were home by 6:00 and I was sound asleep at 7:00 and didn't stir until Casey woke me up at 7:30 the next morning and pointed out I'd been asleep for 12 1/2 hours!!

One of the top weekends of my life, and it sent me back into treatment brimming with love and confidence. My doctor said I should take a break more often - my platelets are up and I gained 4 lbs. I had a treatment yesterday and so far I feel OK. Maria, bless her, is coming to clean my filthy house, and I'm going to Cathy's yoga class at noon.

I forgot - we had a Yoga Party with Jean and Rachel Sunday morning with me, Casey, Jack and Troy. What can I say, except Epic? I do regret not taking a photo of all of us. Here are a few I do have:

Jack and Casey, both wearing a green T under a white button down...what can I say?





Friday Night Rocking in the Living Room:

I love Troy!

More tomorrow....writing this made me tired! Now I have to read it and try to catch all of my errors!

Namaste, Jill

Friday, June 3, 2011

Scar Tissue Yoga Poses for my Ovarian Cancer Sisters

This blog is for my sisters on the Ovarian Cancer Alliance site. Many women end up with painful scar tissue from the debulking surgery, and what some call the "front butt" where the tummy gets large. Thanks to Cathy and to Jean I have solved both of these problems. This blog is for my sisters, and it is going to be a series of pictures of me and Casey in yoga poses designed to deal with these issues. Thanks for the help, Jean and Rachel. Love you!

The first pose is a simple Bridge Pose. The next step is to put a block under your sacrum at the lowest level and then graduate to the higher level. The higher you go, the more you stretch out that scar tissue:


Casey gets into Child's Pose, I put my sacrum on his, he grabs my wrists over his head and pulls gently:


Next, Casey does Cat/Cows and we breathe together:


Jean calls this "Backpack Pose." Casey bends his knees, I put my sacrum on his, and he lifts me up and bends forward:



Backbend over the ottoman - took awhile to build up to this one:


I don't have a picture of this one, but Jean has me Backbend over the edge of the chaise lounge. It's intense and I can only hold it for three breaths, so far.


Partner Work: Casey is helping me to deepen my twist, which gets those nasty toxins out:


AAAh.....Savasana, Corpse Pose, or final relaxation:


My scar tissue is no longer "crunchy" and my belly is flat. Ovaca sisters, I highly recommend finding a yoga teacher or two to do privates with. Jean, Rachel and Cathy keep my spirits up, they keep me positive, they keep me strong, they keep me healthy, and they fill me up with love. I love all of them, I love Casey, and I love Yoga!

Namaste,
Jill

Wednesday, June 1, 2011

Happy June, Everyone!

One of the purposes of writing is to vent, and it's cathartic. This radiation is tough, but not as tough as another surgery. I would do anything to avoid that, so I am going to focus on that. This all started two weeks into the school year, and now there are 8 days of school left and I'm nowhere near finished with treatment. I just keep reminding myself that, if it's this hard on me, it has to be harder on the cancer.

I need to get myself out of bed and practice my yoga to keep my strength up, as hard as it is. It's important to my fight. Sometimes it's probably not the best thing that I have the world's most comfortable bed! You'd think I'd be sick of being in it, but every morning I don't want to get up. I've been operating on one set of sheets since the second pair wore out months ago, and I recently bought new ones. Now that it's so easy to change them, I think I'll do it twice a week. Fresh sheets are so lovely!

I didn't have a treatment yesterday because I couldn't do my blood work Monday - outpatient surgery was closed for the holiday. We went in to do the blood work - port behaved itself - and we actually had lunch at The Guest House Grill. Huge for me. Probably not wise with my low blood counts, but sometimes you just have to get out. This is what passes for a date for us, these days.

We have a big weekend coming up. The 30 years later Rock n' Roll reunion. Unfortunately I won't be well enough to attend, but some of the friends will be staying with us. Danny, Troy, Chris and Jack. Yes, Jack - my ex-husband. He and Casey have never met, and they have a lot in common. Same profession, both musicians! At least I will be able to be a part of the reunion in a small way.

Local friends, my Casey and Casey McDonald will be playing music together at Sylvester's Saturday from noon until two. Go on out and have a burger and appreciate these two talented musicians! They have veggie burgers, too - and great fries.

It's June. Hopefully by July 1 all of this will be behind me and I will be on the mend.

Namaste,
Jill

Sunday, May 29, 2011

I don't Mean to Whine, but UGH!

I'm going to try to stay up this morning long enough to write. After four days without a treatment, you'd think I'd feel at least a bit better. I actually feel worse. I have thrown up twice this week, so not my favorite thing to do. I am beginning to question the value of this treatment. Dr. Spillane (my wonderful oncologist) said to us "At some point we stop the treatment and let your immune system take over the fight." This makes good sense to me. The radiation is destroying my immune system, it's making me physically weak (I canceled yoga twice last week), and it is weakening my spirit. I don't feel well enough to read, and that has always been my salvation. Too much TV is not good for the spirit. I think maybe it's time for my immune system to take over, but Casey really thinks I should stick this out.

When I finish the radiation, Dr. Spillane gave me a drug that inhibits estrogen. It will make my menopausal symptoms worse, but there has been some success in using it to keep ovarian cancer at bay. I'll trade hot flashes for vomiting any day.

Dr. Oz did a show last Thursday on Ovarian cancer. If you missed it, you can watch it on his site. I recommend you do. Apparently he did a similar show a few years ago and women went to their doctors and got a diagnosis based on what he told them. I wish I'd seen it. He confirmed what I've been hearing, which is that all ovarian cancer started in the fallopian tubes. While it seems the more times you ovulate the higher your risk, young girls and women with multiple pregnancies get it, too. They say being on the pill for at least 5 years reduces your risk by 50%, but women who have been on the pill for years get it, too. It's the 4th killer of women in the U.S., yet very little is known about it.

Anyway. I'm going to attempt to walk around the block with Casey and the dogs this morning. I'm going to hope my breakfast stays down. I'll inevitably end up back in bed, watching my Google TV and trying not to go out of my mind with boredom. I feel best in bed, and I don't feel like doing anything. I'm working really hard on keeping my spirits up and staying positive. Throughout this journey, I have not really had to work at it before this. This is why I'm thinking radiation may be doing more harm than good.

Send some of your love and positive thoughts Casey's way. This is really hard on him. He is having to make all the meals, do all the dishes, grocery shopping, dog care, work full time...and try to find some time for himself. He is a prince and I can't imagine doing this without him.

Namaste,
Jill

Wednesday, May 25, 2011

A Diificult Blood Draw and my Idol Opinion

I had to go in for a another blood draw today because my platelets are low. Two nurses tried unsuccessfully to access my port, which is sometimes problematic, with no success. That was two sticks, but I put my lidocaine cream on beforehand so no pain. Then the nurse tried my right arm, also with no success. Ten she had someone from the lab come in. She tried my left arm, with no success. She finally managed to get it from my left hand. All together it took 5 sticks. These things no longer bother me, nor do they really hurt. I felt bad for the nurses, who had trouble through no fault of their own. They are all angels, as always.

Now that I have started sleeping, it's all I want to do. I took a 4 hour nap yesterday and I slept 9 hours last night. I would be sleeping right now but Maria and her son Gordon are cleaning my bedroom and bathroom. Maria is another one of my angels. I'm on the couch, writing this with my laptop propped up on a pillow. It's not easy so please excuse the inevitable typos.

A word on Idol. Haley took all the pizazz with her when she left. I found last night's show to be pretty boring. I enjoyed Lauren's last song to her mom, but I wouldn't download the single. America chooses two wholesome, Christian teens...yet Lady Gaga earned 90 million last year. Chris Allen won because Adam Lambert was too flamboyant for America, but he was boring and he bores me whenever he comes back to perform. I guess you have to ask who is doing the voting? It's not me, that's for sure. I doubt if it's my generation. Scotty is sweet, I like his voice, but every song is starting to sound the same. Ho, hum. If I got to pick, ( I know, I can't complain when I don't vote) the top two would have been James and Haley, and last night would have been a rockin' good time. I know that Haley, James, Casey and Pia will all go on to have big careers. Yesterday I asked my Casey if he remembered who won last year and he had no idea. We remember Crystal, though. We've seen her on TV a bunch of times, and Michael invited her to play at Power to the Peaceful last year, so we saw her live. She was, apparently too edgy for the Idol audience. I don't get it. Lady Gaga grosses 90 mil, but you have to be bland and inoffensive to win Idol. Are the people casting the votes not the people following Gaga on Twitter and downloading her music? Just wondering!

In the absence of Haley, I'm rooting for Lauren. I'll download Haley's album when she releases it on itunes, though. I predict she will outshine them all!

Namaste,
Jill

Monday, May 23, 2011

Z is for Sleeping and for Zapping

Cathy is so wise, and I'm so lucky to have her in my life. I told her I was staying awake during the days for fear it would make the nights even worse. She explained that when I do that, my body produces adrenaline and then at night I can't sleep because of it. She advised me to sleep whenever my body wants to and then sleep will come easier at night. She's right! I slept the weekend away. Yesterday I was up long enough to have something to eat and write my blog, then I went back to sleep. I slept until 3:00 in the afternoon and went back to sleep at 9:30 and slept until 7:00 this morning. My nausea went from a 9 (scale of 1-10, 10 being the worst) down to a 3. It will escalate when I go back for treatment this afternoon, but for now I am up, drinking my milky coffee and doing laundry. Thanks for your wisdom, yoga angel. You rock!

I haven't had a treatment since Friday, so Monday is my best day. I'm excited that next weekend is Memorial Day, so I will have three days to recover and I'll feel good on Tuesday! A lot of old friends are coming to town next weekend, and it would be nice if my nausea wasn't at a 9 while they're here. I know I'm going to have to miss all of the bands playing at Sweet Springs (Rockin' Down Memory Lane), but hopefully I'll feel up to dinner with everyone Saturday night. If you are part of the Rock n' Roll group of friends from the '80's and you're reading this, dinner at my house on June 4. I won't be the one cooking, I'll be the one huddled in a chair trying to control my nausea.

I continue to be grateful for my yoga teachers, my village, my wonderful husband, my king sized bed and my Google TV. These people and things are getting me through this. The middle of this week will mark the half way point for this treatment. The end of this treatment will mark the end of my cancer treatment, forever. I do not intend to go through this again. Every time I have a radiation treatment, I visualize beams zapping the cancer into oblivion and creating fireworks that go out int the universe and harmlessly disintegrate into nothingness. Radiation is so harsh that I don't see how the cancer could survive.

Namaste,
Jill

Sunday, May 22, 2011

Still Here on May 22!

I have radiation treatment M-F and then have the weekend to recover. Yesterday I felt worse than I have all week, but today I do feel better. I managed to get some natural sleep last night, although I was up five times to pee - side effect of the radiation, I assume. I was awake at 4 and my belly was empty, which makes it hard to sleep. I ate yesterday, but I didn't manage to finish anything. I get to the point where I know I can't swallow another bite without it coming back up. So, at 4 am I had half a bagel and a glass of milk. Then I took two Ativan, which is both an anti-nausea and an anti-anxiety sedative, and I slept until 11! That is unheard of, for me. I woke up feeling better than I have since this started. I had coffee for the first time, if you can call it that. In my large cup is about 5% very weak acid-free coffee, mixed in with 95% hot milk. You can see why I call it "Milky coffee." I get a little bit of coffee flavor without upsetting my stomach. I ate two toaster waffles with cream cheese and apple butter, and that is the most I've eaten since this started. My doctor has been very concerned about my weight, and I have now gone down another pound for a total of six. It makes my ports stick out even more!

I have had to temporarily abandon my anti-cancer diet. Right now it's about whatever I can manage to swallow. At a certain point, my throat rebels and there's no way another bite is getting through. Everything that Casey offers me sounds disgusting. I really can't tell if I can manage something until I try. A dish that works one day repulses me the next. I have not been eating any dairy for months, but now I find that a large glass of organic milk soothes my stomach and makes me feel better. I've also been eating Haagen Daaz mango sherbert. It's not sweet enough to make me sick, it just makes me feel good. I eat it in very small amounts - in a Fiesta tea cup.

Two weeks down and four to go. This is the real test of my strength. I know I have to power through this to find my permanent remission, but sometimes I wonder how I'm going to be able to stick it out. I keep reminding myself that I felt much worse during the two months after the surgery when I didn't get out of bed and had no contact with just a few people - mostly Casey.

Casey helps me to hang on. He is so good to me, and so cheerful all of the time. His strength lends itself to mine, and together we are facing the cancer beast down. I believe I am meant to survive this, and that the universe gave me the tools I need to do so: Casey, Yoga, Cathy, Jean, The Wellness Kitchen, Dr. Spillane, my always positive and wonderful oncologist, Dr. O'Hanlan, my wonderful surgeon, Dr. Prewitt, who saved my life by referring me to Dr. O'Hanlan, all of the many wonderful nurses we have encountered, and of course, the family, friends and colleagues who make up my village. These are the things and the people that keep me strong. I can't believe this has taken the entire school year. I am so excited to get back into my classroom in August and start my life again!

Namaste,
Jill

Friday, May 20, 2011

Zappin' that Nasty Cancer

I really liked Dani's comment after yesterday's post: "Having an intention that is specific and devotional is the most amazing way to fight for or against ANYTHING!" Wise words from a wise woman. I have been using visualization and putting my desire to beat this cancer into my yoga intentions from the beginning. It was Cathy, my yoga angel, who told me I need to be very specific. Not just to beat cancer, but to beat it for good. Every day on the table, when the radiation beam goes on, I visualize rays zapping the cancer cells into oblivion. There are explosions going on in my imagination. At night when I am having trouble sleeping, I repeat a mantra to myself - My cancer is gone, and it is gone forever. I know there are many people out there putting me into their yoga intentions and praying for me. I believe this helps. The more positive energy going out into the universe on my behalf, the better. I appreciate everyone who is helping me out in this way.

I put a post on the ovarian cancer list serve, asking for advice on dealing with this radiation. A woman responded, and gave me the email address of a woman who dealt with it and has not had a recurrence since 1999. She said she only knows of two women who have had radiation, but both of them have not needed any other treatment since. So good to hear, particularly after another night of little sleep.

I have been afflicted with insomnia for years. It used to be that it only happened if, for some reason, I didn't get enough exercise. I have always been a high energy person. Even at 40, in the summer there were days where I would go to two aerobic classes, take my dogs hiking on the trail, and then go dancing at night. Most days, when I'm well, I 'll go to a yoga class and take my dog for a walk or a hike. Right now I am struggling a bit with yoga and yesterday my walk was half its usual length. I felt awful afterward. I am spending the majority of my time in bed, watching streaming Netflix shows on my Google TV. At night, the only way I can sleep is to take an Ambien. Ambien puts me to sleep for 3 1/2 to 4 hours and then I'm tossing and turning. They gave me 12.5 milligram time released Ambien and the pharmacist said it would put most people out for 20 hours. We had to pay for it because insurance refused, and it was around $200. It doesn't work any better than the regular 10 mg variety. I spend a lot of time at night repeating my affirmation and listening to the sounds of a sleeping husband and two sleeping dogs.

I will be so glad when all of this is over, and I can go back to the yoga studio on a daily basis, go back to Yoga Flirt, go back to hiking the trail with Bella, and in general just go back to having a life. Alfredo, the very sweet radiation tech, apologized to me yesterday for "Having to do this to you." I told him that, as hard as it is, if it saves me from ever having another recurrence/surgery it would be worth it. I'm thrilled to hear about two women who went down this path and found their long term remission.

With most cancers, five years NED (no evidence of disease) takes you from remission to cure. This is not true with ovarian and fallopian tube cancer. We have to remain vigilant for the rest of our lives. Even after five years, it's in remission but not cured. It can, and often does, recur at any time. This is why my intentions and affirmations must be very specific. Those of you are who sending out those positive vibes on my behalf, in whatever form, I would ask that you be specific. I will beat this cancer, and it will NEVER come back, either as a recurrence or as a secondary cancer. Unfortunately, the chemo and the radiation cause cancer, so a secondary cancer is a risk, too. Oh, the irony of it all.

Many technologies from Star Trek have come true. I'm hoping for a transporter, where they can program out the cancer cells before sending you through.

Namaste,
Jill

Thursday, May 19, 2011

The Not So Silent Killer

Yesterday I finished reading a book that was written by women who survived ovarian cancer. Every woman's story is different, but they all had symptoms at an early stage. Doctors call it the "silent disease" because they think it has no overt symptoms. One of the main points that the book makes is that this is a misconception, and if doctors investigated more thoroughly, most women would be diagnosed in the early stages of the disease. It is the #4 killer of women simply because of the late stage diagnoses. A vaginal ultrasound, a CT scan, a rectal exam, or a CA125 could make the difference between life and death. It affects women of all ages, often with no cancer in their families. One particularly harrowing account was from a woman who was diagnosed while her baby was being delivered by c-section. What was inspiring for me is that many of the women were diagnosed at stage IIIC or IV, the final two stages, and they survived. I was diagnosed at IIIC, but I had symptoms for a few years before I was diagnosed. I have to question the quality of American medical schools when doctors are so ignorant about this disease and in most schools they receive no instruction in nutrition at all. There is a program where ovarian cancer survivors speak to medical school students to familiarize them with the symptoms of the disease. I wish there was one near us so I could get involved. Women, parents and doctors need to be educated about this so more women can survive. There needs to be a more reliable screening test than the CA125 so that every woman can be screened annually. I have so many friends whose mothers died of ovarian or fallopian tube cancer. The treatment has improved, so more women survive today, but I can tell you the treatment is hell. The surgery is hell, the chemo is hell, the radiation is hell...it's all hell. I intend to be one of the women who survive.

Namaste,
Jill

Wednesday, May 18, 2011

Rambling Thoughts

Here's me doing Bakasana, or crow pose:


Recently I rediscovered Bakasana and am gradually holding it longer each time. My cousin Becca did it on her first try! It's harder than it looks. Did you see Conan trying to do it? His guest had ripped arms and she said all she does is yoga. The uninitiated tend to think yoga is gentle, non-cardio, and probably easy. It's much harder than anything I ever did in a gym, it makes you sweat, it gets your heart rate up, it feels fantastic, and it gives you an awesome body - yoga butts are the best!! Add to that the mental and spiritual benefits and it's magical. So grateful for Michael Franti and his yoga at Power to the Peaceful, because that's where it all started.

Michael is going to tour with Casey's hero - Carlos Santana. Hoping they add another CA show - only one so far is Chula Vista.

Can you tell I'm feeling better? Either my body is adjusting to the radiation or I finally got enough Zofran into me. I still feel nauseous, but yesterday I was able to get out of bed and do the laundry. I have today off to recover because my doctor was concerned that I wasn't handling it well. I'm grateful, but I will probably do five days next week. Skipping days adds more time to the end. Ugh.

I keep finding TV shows that I like in Netflix that are canceled after a season, or in one case after only 7 episodes. I finished the first season of Flashforward last night. It ended on a cliffhanger, or course, and then I discover it was canceled. I had to put the book it was based on onto my Kindle. I think there are so many channels, and so many shows, that people don't know about them. Personally, I think it was better when there were just a few channels and people had one TV. TV was family time, everyone watched together, and everyone watched the same shows. There's a lot of crap on. Most of my students have a TV in their room and I think that's bad! We have HBO and we rarely watch it. They run the same movies over and over and they tend to be movies we didn't want to see in the first place. My sister-in-law, Tracy, introduced me to Doctor Who. I can't believe I never knew about it before! If you like Sci Fi, it's great. It's apparently the longest running show on BBC. It's campy and I love it! I DVR'd it for Tracy and now it's taking over our DVR - it's on constantly. How did I miss this?

Time to go do a yoga session with Jean and Rachel. I will feel even better about 9:30. Yoga, yoga, yoga!!

Namaste,
Jill

Tuesday, May 17, 2011

Missing Out and Looking Forward

Mondays I go to the hospital to have blood drawn from my port and I see the doctor after treatment. It was the first time anyone has accessed my port without numbing it first and it hurt! Next week I'll be using the lidocaine my nurse Shannon gave me before I go in. At the oncologist's office they use cold spray that instantly numbs it. but hospitals don't have it for some reason. It takes the lidocaine 45 minutes to work, so the other alternative is a shot. Hmmm, a needle to get numb for the needle. Seems silly, so Shannon gave me lidocaine for my belly port. Anyway. The radiation tech put me on the scale yesterday, saw the number and said "Have you been eating?" It's getting a bit better, but it's still a challenge. The doctor is giving me Wednesday off this week since I'm having such a hard time. He also said we could do every other week, but that would make it last twice as long.

Yesterday was not as bad, probably because of my private yoga class with Jean. He'll be back tomorrow and Cathy will be here Friday. It never ceases to amaze me, how much yoga helps.

I am missing out on so much that's coming up, and it's breaking my heart. My very first AVID class is graduating from high school, and I'm going to miss it. Thursday night is the night where they honor the "Top 30" seniors, chosen by the teachers. Katie asked me to attend and sit on stage with her. Last night she sent me part of the speech that Ed Cabrera (AHS teacher) will be giving about her that's about me. It touched me deeply and made me cry. Many of my 8th graders have asked me to be at their promotion and I will be missing that, too. My friend Amelia is retiring and I'm going to miss her party. In June a large group of old friends are coming to town and having a 30 years later reunion. I've been looking forward to it, and I doubt I will be able to make it.

Enough whining! As hard as this is, it is part of the battle to Kick Cancer's Butt. It will be over mid-June, I have a great trip north with Casey, David and Chris to look forward to, and, best of all - I get to go back to work in August!! It will be like being a first year teacher or being at a new school in some ways - I won't know any of the kids on campus! I can't wait to have a brand new crop of students, and thinking about them keeps me going. I am so glad I was smart enough to choose teaching as my profession. It's the most rewarding thing I can imagine doing.

Last night I watched the last episode of the first season of Glee, where they sing "To Sir with Love" to their teacher. That song always makes me cry. It's a beautiful depiction of the teacher/student relationship.

Namaste,
Jill

Monday, May 16, 2011

Poisoned Cake

It's Monday morning and this is the best I can expect to feel, not having had a treatment since Friday. I made it through half of a bagel before my stomach rebelled. Last night I ate a baked potato and then felt horrible for a few hours before my stomach settled down. I'm going to ask to see the doctor after my torture session this afternoon. I'm hoping he has some stronger medication or advice to get me through this. He said this treatment would take between 3-6 weeks, depending on how I tolerate it. Based on the first week, I'm hoping for 3. However...as awful as this is, it's not as bad as surgery. If this keeps me from having another surgery, it's worth it.

Another question I'd like answered is this: I have most of the risk factors for ovarian cancer, such as infertility, taking fertility drugs without conceiving, and menstruating early. Apparently the more times you ovulate the higher the risk. Fertility drugs force your body to ovulate more than normal. Did they know this twenty years ago, and if so why didn't my doctor tell me of the risk at the time? Another risk factor is if you pee a lot. When symptoms started showing up, the urologist asked me how many times a day I peed. I calculated 20-25. I was shocked to discover that 4-5 is normal. That's just not something you tend to discuss with other people. Why didn't my urologist or my gynecologist at the time know this was a sign of ovarian cancer? A CT scan and a CA125 2 or 3 years earlier would have made a hugs difference in how advanced the cancer was. This is why it's such a killer - most women are diagnosed at a late stage, like I was. Women, learn from my experience and pay attention to these things in yourself and in your daughters. Demand a scan and a CA125 if you have any doubts at all. The gynecologist I was seeing at the time wanted me to have a hysterectomy - he said that in his opinion, every woman should have one when she is past child bearing age or is infertile,because of the risk of ovarian cancer. I thought he was nuts - I sure wish I'd listened. I found a new doctor the day I was sitting across his desk from him and he said "Are you new patient or have I seen you before?" He had been my doctor for ten years. I found myself a new doctor, and she was fresh out of medical school. She discovered the cancer, and I was her first. She cried when she told Casey. She will never ask me if I'm a new patient!

I am in a better frame of mind than I was yesterday. As usual, my village rocks. I appreciate the supportive messages and emails. I realize I said something that was incorrect - I cried when I told Casey the cancer was back, and I cried when I told the teachers. So, three times...not too bad, considering. It's harder to stay positive when I'm in bed all the time and food makes me sick, but I can do it with the love and support of my friends.

Jean is coming this morning for some yoga, and I am hoping it works its usual magic and makes me feel good, or at least better. I have two privates with Jean and one with Cathy scheduled, and if anything can help, my yoga teachers can.

I now have to go to Twin Cities hospital to have my blood drawn every Monday. Radiation has more effect on blood counts than chemo. Apparently there are oncology nurses there who can access my port, but there's no way to tell how long it will take, so we'll have to go out twice today. I find myself wondering why the women on the Ovarian Cancer Alliance web site told me that radiation was easier for them compared to chemo, when it is so much harder on me. One woman said it was a "piece of cake" for her. My cake seems to be poisoned!

Namaste,
Jill

Sunday, May 15, 2011

Hanging on, barely

Right now, my battle is simply eating and getting out of bed. Food is not at all appetizing, in fact, it's nauseating. Yesterday I managed a bagel and a bowl of soup. I've had 5 treatments and I've lost 5 lbs. If I can't eat, and I can't get out of bed, I will become weak and it will be harder to fight. I feel a bit better today and I managed a bowl of cream of wheat. I did the dishes and I'm sitting at the kitchen table. These are big victories, for now. Casey is going to the store to get me some liquid meals - smoothies and Carnation Instant Breakfast, for example. I'm going to have to not worry about sugar for a little while, in favor of keeping my strength up. The Carnation Instant Breakfast has sugar in it, but it's also got a lot of nutrients. It's basically the same thing as Ensure at half the price. If I keep going the way I have been, I'll weigh 110 at the end and I'll look like a skeleton. I got down to 125 during my first battle and I looked pretty bad. So, cream of wheat, smoothies, CIB, maybe even ice cream. I'll worry about sugar being "cancer fertilizer" later.

Every day I read posts from women on the Ovarian Cancer Alliance. Yesterday I read one by a 22 year old girl who will never have babies. Another woman was venting that she can't talk to her husband, and that he was complaining that when she had long, blond hair everyone told him how pretty his wife was, but now that her hair is short and gray they don't. I have always been grateful for Casey and his support, but that made me even more so! He takes such good care of me, and he's always there for me.

I confess I'm having more trouble than usual remaining positive. I cried for awhile last night, and believe it or not that's the first time I've cried because of the cancer. The battle is going on for so long this time, and I feel so weak and so sick. Being unable to eat is very dispiriting. I feel weak and hungry, but then I take a bite and I can't swallow. There have always been breaks in the chemo where I felt pretty normal. It looks like I am going to be sick until after this radiation ends. While I am better today, I am nauseated and I doubt I'll be up for long.

OK, enough whining. It poured last night and was apparently windy. The umbrella was in our outdoor table, and this morning the glass is in shattered pieces all over the ground. A big mess for poor Casey to deal with, and he'll have to do it soon to keep Ben and Bella safe. His mountain bike is in the shop and he really needs a ride for the physical, emotional and spiritual benefits. He is my rock, but he also has to be his own rock.

I've been up for an hour or so and it's long enough. Thank goodness for my Google TV, or I would be going out of my mind!

Namaste,
Jill

Thursday, May 12, 2011

Radiation Sucks

My doctors and the women on the Ovarian Cancer Alliance all told me that radiation is not as bad as chemo. In my case, they were wrong. I started feeling sick on the way home from my first treatment and have felt nauseous since. I have already, after 3 treatments, puked more than I did the entire time I was doing chemo. To manage it, I'll have to stay on the anti-nausea meds 24/7 until this is over. They make me sleep. Except for going to treatment yesterday, I slept around the clock. I'm back in the tunnel again and it isn't fun. I forced myself to get up and eat some breakfast, but it was tough. Food is pretty revolting to me right now. They tell me it will get worse and time and treatments go on. I see too much weight loss in my future.

I will probably not be writing every day through this. This is hard, after the relatively easy chemo with breaks where I felt good. As a matter of fact, I'm going back to bed now because my breakfast made me nauseous.

Radiation. Ugh.

Namaste,
Jill

Monday, May 9, 2011

Gayle Price Pentoney

My beautiful mother was born a Texan in 1928. She was in high school during World War II, and she was a very modern woman. She attended SMU (Southern Methodist University) for awhile, but ended up working as the secretary for a rich oil man. She shared an apartment in Dallas with her friend Irene and didn't marry my dad until she was 26. She was engaged to someone else when she met him. His movie star good looks and California lifestyle swept her off her feet and they married not long after they met. She went from Dallas to living at the beach in San Diego in a heartbeat. They eloped, and she had to go back to Dallas to break up with her fiance after she was married!

Mom should have finished college and had a career. She was fiercely intelligent, had a quick wit and a wickedly funny sense of humor. She made friends easily and quickly and her heart was infinite. Growing up, our friends always wanted to hang out at our house because mom was so cool. Mom and dad took our friends into their home and hearts and unofficially adopted some of them, especially those who lost a parent. Mom's daddy died when she was little, and she always reached out to anyone who suffered a similar fate. Jennie, Chris, and Tommy are our unofficial siblings. My friends Carrie and Pam both lived with us at different times, and so did Tommy. Many of our friends would show up at Dolbeer St when we weren't home, to spend time with mom. When she moved to San Clemente, she joined the Women's Club and the Friends of the library. Soon she knew everyone in town, had scores of friends, and was running the used bookstore that was helping to fund the library. She started the hugely successful buck-a-bag sale on Sundays during the Farmer's Market. After dad had the stroke, she ran his office for about a year. She was his main secretary already, and there were lawyer friends of theirs who helped when something involved an appearance. Dad was a workman's comp lawyer so much of the work involved getting people into see doctors and into retraining programs. Anyway, dad was always more interested in fly-fishing than anything else, and he never pressed clients for payment. The year mom took over she made a lot more money than he ever had.

The heat was in pipes of hot water than ran underneath the floor on Dolbeer St. At night when mom would cook dinner, I would lie on the warm kitchen floor and talk to her. She would have to step over me as she moved from the sink to the stove. It must have been annoying, but she never told me to get lost or complained. She patiently talked to me as she cooked around me. Now I feel rather guilty that I didn't get off my backside and help her. The kitchen floor and early mornings at the ranch are my favorite memories of her. Mom and I always got up earlier than David and Joyce and usually dad, or else he would be gone fishing. When we were at the ranch we would walk out onto the bridge, mom with a steaming cup of coffee. We'd stand while, looking down into the crystal clear water at the fish swimming below. Then we'd walk across the bridge and sit on the rocks above the river on the other side, still watching the fish and talking quietly. I loved having her to myself, before the day began and everyone else was up.

She gave me my love of reading, and it was something we always shared. She introduced me to Shakespeare long before I encountered him in School. She took me to plays at College of the Redwoods often. She loved poetry and wrote her own as well as reading it. Many of her favorite things became mine and shaped my life. I never rebelled against her or went through a period when I thought I knew more than she did like most teenage girls do. I always knew she was special, she was wise, and she was wonderful. When I looked around I realized that everyone loved her. She kept friends for life and she was constantly making new ones.

When mom was still living in California, I called her every day. If I had a question about something, I tended to go to her first. I went to her first to celebrate my accomplishments and to read her my poetry. I went to see her monthly and we spent every Mother's Day together from the time she moved to San Clemente until she moved to Hawaii, and later Tahiti, with Joyce. Joyce was even in town one Mother's Day and all three of us went to brunch at the Country Club in San Clemente.

By the end of her life mom was tiny. She was shorter than me and I could wrap my arms around her almost twice. I was able to go see her three times during her last year. David, Cate and I went in August of 2009. David and I went back during my spring break 2010 and I went back alone after school got out and stayed a month. Although she was suffering from vascular dementia, her eyes still sparkled a bright, beautiful blue and she was lucid during the daytime and still wickedly funny.

I don't claim to know exactly what happens to us after we die, but I know it isn't the end. I have felt both of my parents with me since they passed, at various times. I talk to them both and I feel that they know this. It's not the same, of course, but it comforts me.

I started this yesterday, for Mother's Day, but felt bad and ended up sleeping most of the day and night. So, Mom, this is for you. Happy Mother's Day. I hope you spent it fly-fishing with dad in a heavenly stream.

I love you.



Namaste,
Jill

Saturday, May 7, 2011

Good Things Come in Threes!

Yesterday was a very special day. Casey say if he had known how wonderful and rewarding it is to be a teacher he would have chosen that path. He says this because of my students and how they reach out to me, and that's what made yesterday special.

First, I checked the mail and there was an envelope from AJHS. Inside was a letter from Allise Jeffries, one of my current students that I am missing out on. She wrote me a lovely letter, telling me her grandmother's cancer is in remission and she hopes mine is, too. Then she said "You changed the way I look at people, in a good way." That means the world to me. We spent the first two weeks of school (and the only time I was there) doing Challenge Day activities. This is to break down barriers, stop the bullying, and teach them tolerance for others. It's good to know that Allise got the message. I've been wondering if I want to do it again next year. I took it further this past year than I ever have before, and it was intense. There were lots of tears, and I spent break, lunch and after school with various kids who had heavy hearts. Allise validated that for me and now I know it's important that I continue this work with my kids. If you're reading, Allise, thank you so much and I love you, girl!

Second, my wonderful AVID kids and my sub, Heather Wolcott, all sent me texts on Terri Mylan's phone. Each of them sent me a sweet message, and at the end they sent me a group picture. Heather, thanks so much for letting them do this. It meant so much to me, and made me feel so loved. I love you, AVID kids!!

Third, last night I heard a knock on the door and I opened it to discover Jake and Hannah Cuen on my doorstep. Jake is in college and Hannah is in high school now, but they were both my students. They came by with their mom to bring me a gift certificate for a massage at the Spa of the Central Coast. It was so very sweet of her to think of me and purchase this for me, and it was so wonderful to see her awesome kids. I love hearing that my kids, especially smart ones like Jake, are in college. I love it when I have all of the kids in a family, too. I tend to know the parents better when this happens, and the kids also. I love Jake and Hannah, and seeing them on my doorstep made me happy.

I am so glad that I decided to become a teacher. I decided this when I was very young, and I'm not even sure exactly why. I suspect I knew, even in elementary school, that I didn't want to give up summers off and all of those other vacation days. I used to play school in my play room, teaching my stuffed animals. I wasn't a kid who loved school, except for Mr. Cloer's class 5th grade class and every English class I ever took, so it wasn't that. Whatever the reason, I'm very grateful. Being a part of the teaching community has enabled me to stay home to focus on fighting this disease, thanks to the generosity of the teachers of A-town. My insurance has covered everything but co-pays. Add to that all of the love I receive from both the teachers and my students, past and present, and I am one blessed English teacher. Loving your job makes you love your life, and I highly recommend finding something to do that you love and makes you happy. If you can make a living doing what you love to do, your life will be happy.

My life is very, very, very happy. Big love and big thanks to the wonderful teachers and kids of A-town. I love you all and you make my life complete.

Namaste,
Jill

Friday, May 6, 2011

Writer's Block and detoxing

I seem to be suffering from writer's block. All of the company associated with the benefit altered my schedule. I usually write first thing, as I'm having my milky coffee. Cancer thrives in an acidic environment, so I buy low acid coffee from Trader Joe's and lace it liberally with rice milk. One large cappuccino cup full a day and then I switch to the cancer healing benefits of green tea or green juice. I find if I don't write at the usual time I tend not to write at all. I need to write for my sanity, so I am making it a priority. Now the problem is thinking of something to say!

You would be surprised, if you aren't a juicer, how many greens and/or veggies it takes to make a glass of juice. I mix it with water because otherwise it's too strong and it makes me nauseous. It also really detoxes, especially beet juice, so if you drink it on an empty stomach and it pulls all the toxins out it will make you sick. There are many people who have kept their cancer at bay with a plant based, organic diet and juicing.

Obviously I want to do everything I can to make sure this is my last recurrence. The two fund raisers and all of the support help me to keep this a priority. Cathy and the yoga flirt girls worked very hard on the Kicking Cancer Carnival. Chris, Sue, Lori, Johnna, Debbie, Carol...and all of the other teachers (forgive me for not naming you all. You know who you are and so do I!) also worked very hard on the benefit last weekend. I must honor their hard work and their support by doing everything in my power to get well and to stay well. It's not always easy. When we go to restaurants, there is often nothing on the menu that is vegan, especially at breakfast. If there is a vegan or vegetarian option, it's probably not going to be organic. This would be much easier if we lived in Arcata, or probably anywhere San Francisco or north of there. I will eat dairy occasionally, and meat if I'm at someone's home and they serve it to me, but it's not my preference. It's also challenging to stay away from processed sugar because it's everywhere and in everything. We don't eat processed food, so I'm doing better with this. The food from the Wellness Kitchen and our baskets of organic fruits and veggies from Nature's Harvest helps a great deal.

So, when I can't think of anything to write, if I just get going something happens! This is exactly what I tell my students - don't fear the blank page, just jump in and get started! You can always go back and fix it later.

Hope everyone is having a lovely, warm spring day. I'm off the dry brush my skin and soak in a lovely detoxing bath with baking soda and Moroccan Rose Oil by REN, a British company that makes toxin free beauty products. It makes the bath water soft and fragrant and my skin soft!

Check out these photos from last Saturday night, taken by Christine Sedley, another talented local photographer: (Sorry - you have to cut and paste. Or go to my Facebook page to see the photos!)

https://www.facebook.com/photo.php?fbid=1680918344894&set=a.1089284434416.2014506.1295622854&type=1#!/media/set/?set=a.1642790962432.235227.1616600776

Namaste, Jill

Thursday, May 5, 2011

Movies and Radiation

When you have cancer, everyone in your life reaches out to you, if you let them. People who don't even know me have reached out to me. Most people, unfortunately, have someone close to them who has battled cancer, or they have battled it themselves. There is way too much cancer. I was asked about my dog Bella quite a few times last Saturday night. We assume the doctor got all of the cancer, and that she is going to be fine. I still can't believe my black, very hairy dog got skin cancer.

I heard from the radiation oncologist today and I will be starting radiation treatment Monday the 9th at 3:15. I thought about waiting to see what my CA125 is, but I decided I should have the treatment regardless. It will be worth it if it works and I never have to have surgery or chemo again. I'd rather do it now than wait and start it later if the CA125 continues to rise. The most important thing to me right now, other than kicking cancer's butt for good, is going back to work in August. The next time I don't work for a school year I want it to be because I'm retiring!

Casey's mom is still here visiting and we just took her to our brand new movie theater to see Water for Elephants. Loved it! They should make more movies out of good novels, in my opinion. We saw a preview for a remake of
Conan the Barbarian...I'm sorry but, it's been done already! There's so much good literature out there, I see no need to keep remaking the same movies. I'm happy about a new version of Jane Eyre that's coming out, though, so I guess it depends on the movie! Or maybe it's OK with me if they keep remaking movies based on classic literature. Anyway, our new movie theater is beautiful and we're so happy to have movies in our town again!

I am gearing up for what feels like Battle Number Three. Fortunately I have yoga and lots of love to keep me strong.

Namaste,

Jill