I made it through the xeloda, again. It was quite uncomfortable and generally yucky, but no gastrointestinal struggles, which is the main worry. I’m grateful that Dr. Kaplan has ordered a scan after only 2 rounds of chemo this time so that I do not have to take xeloda again unless there is clear evidence that it is doing something miraculous. In that case I’d take it happily and endure the discomfort. Otherwise, I don’t know that I could make myself swallow those things again. 

I have the crud. It started last weekend, just a little rumble in my chest. I’d cough now and then and think, “What is that? Where did that come from?” Since Sunday this crud has just taken giant steps each day into being a horrible cold! In my chest, throat and head…such a bummer. Just when I’m ready to be “good to go” after chemo I’m chopped down again with this cold. Next week I have something planned everyday. Not big things, necessarily, but things I’d really like to do. I hope this cold takes giant steps out of me over the weekend.

Yesterday Mike was worried about my lungs and possible pneumonia. He wanted me to go to the doc. I did not want to go (remember, I’m a toughie girl)…it’s just a cold. He and Carrie persuaded me to call Dr. Kaplan’s office and talk to them. When they heard my voice, they were like…oh yeah, you need to come in. So in we went. I had a blood draw and then we had a visit with Dr. Kaplan. My blood was good, no fever, my lungs were clear, too.  Dr. Kaplan said I had the dreaded G7. He’s my oncologist….I have to take the bait…”G7?”

Great green globs of greasy grimy gopher guts! What a goof! He told me to go home and drink tea with honey and have some Tillamook Mudslide ice cream (his favorite). I’ve had lots of tea with lemon and honey. But no ice cream…not very appealing while I’m coughing up all that G7!

I’m hunkered down completely letting myself into my current addiction of the BBC series Call the Midwife (it’s on netflix). I was keeping it to one episode a day, but with this cold and all, I’m not going to count! 

I have my scan next Thursday and I’ll let you all know how it goes. Until then…

Lots of love to you all

Janet

A pattern is emerging with me and cancer and chemo. It is really tricky to do things that I’ve done before that are fun, full of family, friends and life. I felt it very heavy on New Year’s Eve and New Year’s Day, my birthday. On these days, during these events I just felt like I had to bolt from the scene. It happened again up on Orcas Island. We went out for lunch in East Sound and I just couldn’t handle it. I love the San Juan Islands and I so wanted to have a great time and I just had to escape. We ordered our lunch and I couldn’t do it. I felt claustrophobic and had to leave. Luckily, we had two cars and Mike of course came with me and my friends brought my yummy soup home to me. I immediately took an Ativan for anxiety and now I’ll try to remember to Ativan up whenever I’m in such a situation. What would you call that, a situation that should be extra fun and celebratory? A situation with happy baggage? I don’t even know….Damn, Cancer really does suck!

I realized after yesterday’s post that I left off some other important things I do at home, and as long as I am documenting my daily habits, I may as well be comprehensive.

So in addition to all of that…

Each day prior to breakfast I take a probiotic that was suggested to me by Dr. Standish. We’re all hoping that is part of what will protect my gut through this xeloda.

Also prior to breakfast and dinner I take 2 or 3 Turkey Tail mushroom capsules. These were also suggested by Dr. Standish and she says there is evidence that it actually helps my chemo do its job! My chemo has been quite effective…so yea for Turkey Tail mushrooms.

Also, nearly every day I have a diffuser running (thanks to my sister) with some combination of essential oils. Today I am diffusing eucalyptus and lavender…a lovely combination.

I also read and love, not daily, but frequently, The Book of Awakening by Mark Nepo. I know I’ve quoted from this book before. I find a great deal of inspiration from this book.

Finallly, I try, try to keep up my exercising. I have been off the wagon for a few weeks after that last chemo, the Xeloda kept me down a bit, then I was hit with a cold. I continued to walk Wilson once a day through that, but not our long power walks, just a poop and lets get back to the couch walk.  Now I’m back on Xeloda but I’m going to give it a college try today. Maggie has been taking my place at pilates these last 6 weeks and next week I’m going to make an attempt at going with her. It will be a big step, I have not been there since I was diagnosed. All my pilates friends much have thought I just stayed in Ireland! Time to get strong! I know that it is essential to beating cancer so exercise I must!

And now for a correction…I said we were leaving for Ireland this year the same day we were scheduled to leave last year. I was off by one day…we were scheduled to leave June 30 and arrive on July 1. This year we leave July and arrive on July 2

A thank you to my wee Pathfinder friends who sent me my yearly valentine bag of goodies! What a sweet thing to arrive home to last Friday…broth from Jenni and Valentines from kids and families…thank you!

Two blog posts two days in a row...I've got to get busy finishing up the details for our Ireland plans...suppose I'll need some Ativan for that trip!

love you all

Happy Friday

Janet

A  Morning at Pathfinder~Chemo #10~ and a list of all my drugs! 

Yesterday we were scheduled for chemo #10 for 11:15 am.   There are pros and cons to having chemo scheduled in the middle or late in the day; CONS~ all the appointments are usually running a little late, we typically get out of there at evening rush hour, I’m just pooped that late in the day and am literally good for nothing (ok, I was hungry and was good for stuffing my face with chicken and potatoes, and I was good for watching part 1 of the SNL 40 year special…I was a freshman in college when SNL started and I remember watching it in Erica Berman’s room. She was from upstate New York and was one of the rare  girls with a TV and she was my friend!). I digressed…Pros~ you get a morning to do with as you please, after my blood draw there is plenty of time for the results to make  it upstairs to Dr. Kaplan so he can see the most current info (though my blood work has been pretty stable). I prefer an earlier appointment, missing rush hour and getting home with a little time to adjust. Oh well, it doesn’t always work out that way.

The upside of yesterday was the morning. Maggie works on Saturday mornings with a little boy from “my” classroom and since she is on spring break and Pathfinder is not, she planned to spend a little time with the Salmon Clan during Writer’s Workshop. Did I want to join her…well, yes! WW is my favorite part of the day. I would call it magical but it is not…We have had a good deal of professional development and support from Teacher’s College at Columbia University. There has been lots and lots of focused hard work by our staff and kids and administrators. The results sometimes seem magical. Prior to WW I had such low expectations for the writing of a kindergartener. From the first year we implemented the program we all saw amazing results. Again, I digress, but being a part of a 5 or 6 year old as they are discovering writing feels very magical. So I had to go along with Maggie. I waited for Jessica to finish her mini-lesson (do not need to freak out or intimidate a great 1st year teacher) and hung out in the Turtle Clan for a while. I love the Turtle Clan! Jennifer is one of my best friends and she is such an amazing teacher. Her teaching and transitions are amazing. And our friend Conor is in her class so I get to be a special part of his day! I got to chat with the kids about what they are writing these days…These are 1st graders and they are writing reviews. There are reviews of movies and books and restaurants. They are leaning the terms positive and negative and could tell me about their review using those terms…delightful. Other’s reviewed their pets, our school but my favorite was someone reviewed Teacher Jennifer! She assured me it was a positive review~so adorable!

By the time I got back to the Salmon Clan they were transitioning to the tables for writing workshop. I got to do the dream job. I went from table to table checking in with as many kids as I could…I was able to finally meet some kids I’d never met. I got to check in with kids i already know and love. I got to ask the important question: What are you working on as a writer? I asked them to read their stories to me and commented on how many sight words were spelled correctly and how their writing matched their pictures and how that helps friends to read their stories! I was able to coach a few kids on what to say or how to stretch out their words to hear the individual letters. Oh, my! I was so happy…do you think I miss teaching…yes I do!! I had a particularly lovely session with a little boy I really did not know. He had a round face, a buzz cut and sweet, sweet blue eyes! He was quite capable, just needed some strategies, help with focus and some encouragement. Oh I fell in love with him! I am making plans to go back and visit classrooms towards the end of my three week chemo cycles. The nurse said my immune system is good enough to be around people but I will avoid classes where there has been an especially juicy, germy out break. But that time with the kids made me so happy and I know that has to be an immune booster.

I missed the Bat Clan, each time I went by they were in large group and I’m just not going to interrupt! I found the Seal Clan in transition and was able to hang out at recess for a while with all the Kindergarteners and their teachers. What fun!

Ok, enough with the I miss teaching babble…on to my job this year.

Our meeting with Dr. Kaplan went well. There are a couple things he checked on…one of my infusion chemos, epirubicin, potentially causes heart problems. They keep good track of the data and what it says about how much one can/should be given. I’m at 5000 somethings (and this is after 9 sessions) and things start looking bad at 9000, so I’m not that close, but he says he does not want to take me much further along that track. After talking about how I am handling Xeloda:ok (just extra weird feelings and many extra precautions) and getting close to the limit with my the epirubicin, he is calling for an early scan and an echocardiogram. So March 5th, three weeks sooner than  expected I get to get another CT scan and an echocardiogram. We are delighted to get a scan sooner than expected. It is difficult to wait 9 weeks to know how things are/are not working.

Yesterday I had the typical cocktail, here are the details if you are interested:

D5W IV solution 500ml

dexamethasone 12mg (steroid)

epirubicin 84.5mg given as a push through a syringe for 10 minutes (this is the time Mike plugs into his iPhone or my iPad and I get to better know the daily nurse) (chemotherapy)

fosaprepitant (aka EMEND) 150mg in NS IV solution 250ml (to prevent nausea)

oxaliplatin 219.7 mg in D5W IV solution 150 ml a 2 hoiur drip (chemotherapy)

palonosetron HCI (aka ALOXI) 0.25 mg (to prevent nausea)

pegfilgrastim (aka NEULASTA) injection 6 mg (to boost my white blood cells)

injection is in my belly…not my favorite part!

Then starting today I take capecitabine (aka XELODA) 500 mg 2 tabs 2x a day for 5 days. (oral chemo)

For chemo day and 3 days after I take dexamethasone (aka DECADRON) 4mg (steroid)

The neulastad shot can cause muscle ache, like you have the flu as the white blood cells are literally pushing through the big bones (back, pelvis, femur) so for 5 days I take one claritan a day, they randomly found that this helps alleviate some of the muscle ache.

Also at home, every day I take:

 2x a day pantoprazole (aka protonix) everyday (for the stomach lining)...I like to pronounce pantoprazole with an Italian accent, just for fun!

Glutamine (mixed with hot water and a little juice) (2 x a day for neuropathy)

iron

b6

b12

when needed:

lorazepam (aka ativan) for anxiety and nausea

Ambien for sleep

melatonin for sleep

I have various other meds for nausea but the ativan and keeping a little bit of food in my belly when I feel it coming on has worked well. I’ve tried medical marijuana and it is not what I prefer. The ativan is much better for me! And every doctor and nurse has said to take it liberally. I don’t know if I do that, but I don’t hesitate if I think I need it.

That was a long blog post! wow! I got on a tangent and I dd not get to tell you about our 2 nights on orcas with Mike, Betty, Mike, Gillian and Conor  (loved it...such a great get away).

Or my museum day with Bridget and Shannon...always a treat!

Or my time babysitting little June bug on Friday. What a treat to pretend to be a grandma and move in 16 month old time with this very bright and mellow baby! She is a treat!

Maybe next time...but right now it is nap o'clock after all this writing.

love to you all

Janet

Feeling Much Better, Thank You!

I am feeling much better. I slept well Monday night and woke up Tuesday a different person. One really cannot overestimate the power of a good night’s sleep. My sinuses have a bit of a different story to tell, but mostly, I’m good!

I’m not sure when/if I mentioned this before but the Pathfinder staff has been super generous in donating sick leave to me. On my own, my sick leave would have been used up as of yesterday and I would be going on long term medical disability with a cut in pay and a need to pay for more health care (that’s right, you get sick and you get paid less but have to pay more….I get it!). But, because of the generosity of my teacher friends, I am now covered through the rest of the school year (or just a few day shy, i’m not sure). That means my deferred pay and full benefits will carry through September! Isn’t that amazing. I feel super lucky, super blessed, super relieved that full benefits  and a full pay check are continuing. Less stress means more energy for healing. So a deep and heartfelt thank you to my teacher friends, you are most generous!! Today, as a tiny way to thank them, I made a trip to Starbucks, picked up 3 boxes of coffee, brought along the 3 boxes of cookies from Trader Joe’s I’d purchased last week, and took it all up to the Pathfinder staff room. It was great to have a few minutes to see staff I love, then I made my way down to the Sky Hall while the K/1 kids were trickling in. I spent a little time in each room there and it felt like a perfect baby step back into that world. If I stay healthy I’d like to do that more often. I miss my community!

We have our tickets for Ireland! Staring fate right in the face we are leaving the exact same date we were supposed to leave last year, July 1. We have tickets for Maggie, Mike and me and I’ll be working on saving up sky miles in hopes to nab Michael and have him join us, too, if he is available. We’ll see. We are spending most of the time on the West coast, a number of days with Maggie’s family in Limerick and then again on the coast in Kilkee. We hope to spend a night on Grandpa’s Island, if that works out. Then we’ll end up in Dublin where we will overlap with Mike, Gillian, and Conor for a few days. I am both cautious and confident in my excitement for this vacation! Cancer sure has me walking many fine lines!

Thank you all for your support and best wishes after my last very depressing and tragic post. I appreciate your emails, comments, texts. I’m checking in with my mom and they are getting through this, of course.

It feels a little like spring out there, hope you get a chance to enjoy.

More love and less stress to all of you

Janet

First of all, we think Wilson is fine. The “lump” on his leg kind of comes and goes. It seems like a muscle thing, it doesn’t bother him, so we are leaving well enough alone. 

I have another cold…

I tried last week to shake it; stayed home, lots of immune boosting herbs, thyme and eucalyptus in my diffuser, enough water to drown a salmon, hot tea with lemon, ginger and honey, laying low and taking care. I felt like I was holding it at bay. But then Saturday night we went out.

It was Maggie’s school auction. APL (Academy for  Precision Learning) is a private school that provides individualized programs for all students. It is an integrated program that includes kids on the autism spectrum and typically developing kids. In Maggie’s K/1 classroom there are 16 kids, 8 of them are typically developing and 8 of them have special needs of varying degrees. Some of the kids with autism need 1:1 assistance at all times and some of them require much less assistance. There are 8 adults in Maggie’s classroom providing this highly individualized instruction. It is a fabulous program where the goals are very data driven and there is a great deal of success. The tuition is quite steep and the people at the auction were people who can afford that school, if you catch my drift…we were rubbing elbows!!

The auction was at Bell Harbor on the waterfront. There was a good selection of silent auction items (including a gorgeous set of 3 nesting bowls crafted and donated by Mike Oliver) and we bid on a few items that quickly got bid up and we let them go. There was a full bar and I saw a couple of martinis and lemon drops and so badly wanted to imbibe…oh well, maybe next year! Appetizers were yummy and the dinner quite impressive. I had a generous portion of halibut with crab meat on top. I did have a little wine with dinner and could eat the berries and custard off the top of my tart, yum! The keynote speaker was the father of a 5 year old in Maggie’s classroom. She is a darling little girl who is highly impacted by her autism. This dad had us all in tears. It is so hard to hear someone tell a tale of a baby and toddler developing typically and then at some point around the age of 2 losing so many of those skills and becoming so very different and challenging. He was a brave man to get up there and share his feelings so openly.

It turns out at the table next to us were many of the families from Maggie’s classroom. The woman sitting closest to me is the mom of the little guy Maggie is working with right now. She was singing Maggie’s praises and we were telling her how much Maggie loves their son. It was great to see Maggie in this role, as teacher and co-worker. We are just so proud of her. She is a natural teacher and she is honing the fine art of this profession.

We stayed too long at the auction, for sure, and I’m still paying the price. My cold seems to have kicked in a little stronger, moved into my sinuses and set up camp. Back to the couch for me! Back to the diffuser and the herbs and cuddling up with Wilson. Oh well!

The auction was awesome and I’m glad I didn’t have to miss out.

I have two great brothers and a very sad story. I can’t stop thinking about this and so I am going to write it down here.

Paul is about 4 years older than me. He lives not far from my mom, in Kansas City and does a great deal to help her out. My little brother, Matthew is 17 years younger than me, has Down’s syndrome and lives with my mom. Matthew is hilarious. He knows just how to make all of us laugh. He is very loving and truly, on most days, a joy to my mom. Matthew, I believe, is one of the factors that keeps my mom so young and vital. And Paul is there to help her.

Matthew goes to workshop every day. The bus picks him up and drops him off at home. He goes bowling every Saturday morning with a group of kids with a varying abilities and disabilities and swims with a similar group every Sunday. My brother Paul also bowls. He bowls in a league one night a week but also goes with mom and Matt on Saturday mornings. 

Yesterday morning my mom called me with tragic news about one of Matthew’s friends that he bowls and swims with, Rachel.  Rachel’s mom, Mary Pat and my mom, spend a great deal of time together at a table at the bowling alley and on the bleachers at the pool. They talk and talk and keep one eye, at least, on their “kids” and turn and reprimand, encourage or cheer them on as needed. Matthew and Rachel are very competitive at bowling (and their moms are a little competitive about them, too). When I visit KC I’ve enjoyed my time talking with Mary Pat. She is a single parent, just a little older than me, loves music and BBQ, definitely has a wild streak and has survived a hideous battle with breast cancer. Mary Pat is in the process of having a flower garden tattooed across her chest.

Last week Rachel had been complaining to her mom about a pain in her leg. Saturday before bowling she complained again. Mary Pat asked her is she’d like to stay home from bowling but Rachel wanted to bowl, so they did. Sometime during the second game, Rachel got up to bowl, sent her ball down the lane and then on her way back she dropped to the floor. My brother Paul was right there and immediatly started CPR. It took 10-15 minutes for paramedics to arrive and Paul never gave up on Rachel. They took her to the hospital and my mom drove Mary Pat. After a short time they came out to let them know that Rachel had not made it. 

Rachel was about 10 years of so younger than Matt. She was very fit and worked at staying that way. She was a fabulous swimmer, so sleek and smooth in the water. Her shoulders were broad and strong. She was quite capable and was able to get around Kansas City on the buses and work in the community. She had been living with Mary Pat but hey were in the process of looking for a place for Rachel and her fiancé to live; Rachel was going to get married in July.

Mom and Matt and Paul are all just devastated as you can imagine. Yesterday this story just crawled up into my heart and I couldn’t really shake my sadness all day. I’m crying again as I write this. I’m just so sad for Mary Pat. Fortunately Mary Pat has a large supportive family. Mom also talks about the bowling moms as another family. She is planning to drop Matthew off at bowling next Saturday and take Mary Pat a bottle of Jameson and offer to escort her to her scheduled tattoo appointment.

So, another piece of evidence, as if we need it, to live today.

On Sunday we are headed to Orcas Island for 2 nights with Betty, Mike, Gillian and Conor. We have a big house on the North side of the island, on the water. I am so looking forward to getting away and getting to the San Juan’s. There is not a single time I’ve visited one of those islands and not spent part of my time fantasizing about living there. I don’t really want to live there full time there are too many people here whom I love, but I do so love to visit. I'll let you all know how it goes.

Please add Rachel and Mary Pat to your prayers, however it is that you pray. 

Love to you all,

Janet

Well that was painful!

What a season to become a fan! I enjoyed the highs, I guess I have to sustain the lows. Oh well, there is always next year. Go Hawks!! 

We had a grand time though; full house with lots of good food and energy. Wilson did great. He definitely does not like loud sudden, surprising noises, so the highs of the games were challenging for him. But he handled it ok. He is truly a love and went to snuggle with anyone who had a blanket.  

Another good thing about Wilson…he does not like the rain. He doesn’t want to go for our usual long walk today and that suits me just fine! Thank goodness! We’ll get out a few times to take care of business, but this is a day to curl up and stay out of the weather, for me and the pup.

I’ve Survived the Xeloda! Last Tuesday I had my IV infusion chemos, as usual. Then Wednesday through Sunday, twice a day, with food and lots of water, I had to take 2 pills of Xeloda. Xeloda is one strong chemo drug and I can’t believe I took those things twice a day for 10 weeks. I can’t really describe how it makes me feel, but it is not very pleasant. I’m glad I could tolerate it (with the help of Ativan once or twice a day) and now we are hoping it is doing the cleanup work on the cancer cells. It has affected my usual Monday feel better pattern, though I do feel ok, I can still feel the Xeloda in my system. I’m drinking lots of green tea and water, taking it easy. 

I'm hoping for a little more sunshine and sending love to you all. 

Janet