Words for me to live by!

                                                                              From my sister, Kathy.

Happy Birthday Betty!

Sunday was Betty's birthday and we had a great weekend. Saturday morning Michael and Eva came up from Portland. That night Mike and Michael went to the Husky game and Betty, Gillian, Eva and Maggie and I went to the movie, Dear White Person. It was quite hilarious and clever. There was a group of about 7 or 8 young men right behind us, maybe late 20's, early 30's and they were laughing so hard at times it was difficult to hear the movie... I think they made us laugh almost as much as the movie.

Sunday night we had 12 people here for a birthday dinner! 12 people! We had a lovely dinner, cake and ice cream and a good time! Luckily I had good energy that day and lots of help! At one point in the kitchen we had the 4 available counter spaces occupied by Michael, Maggie, Eva and me! Cutting, chopping, mixing....it was a very busy and very good day. I was so happy to have that kind of energy to celebrate Betty's day! Happy Birthday, Betty!

BOOKS

I've been lucky to have a series of good books to read. I've already told you about Boys in the Boat and All the Light We Cannot See...both so great! Next I read a mystery: No. 1 Ladies Detective Agency. I really enjoyed that more than I thought I would as I normally do not read mysteries.

Now I'm deep in the next great novel: The Tale of Edgar Sawtelle, I love this story and am staying up too late reading!

FOOD

I talk with the dietician weekly and continue to take baby steps to a full menu. Yesterday we added a grain...brown rice and veggies, cooked greens! Yippee! The only green I've had are canned green beans, and really, does that count as a vegetable? I started right away with wilted spinach last night for dinner. That made me so happy!! I also get to add canned or cooked tomatoes and any herb/spice other than chilies and peppers.

So, cancer sucks.

Gastric cancer really sucks. It's starting to sink in how terrible this cancer is. It's a fine line to have information, to be informed, to be prepared AND to focus on the positive and BE positive. I know it is ok to be sad and have my down times...and I do, but I sure don't want to stay there!  I've found survivor stories on line and I try to keep those in mind every time I read some terrible statistic. I've been looking at discussion groups and blogs and there is not a lot of us out there. I do have one connection in Seattle, Gaby, we email but have not yet met. She works with Jodi, from my last years Salmon Clan, and is friends with Eddie, from Salmon long ago and with Glenda who was my student teacher! Small world! Anyway, it is nice to have someone I "know" to email with. She is having a fund raiser for gastric cancer research in November and I'll let you all know about that when I know more.

But, right now, I'm feeling pretty good. I'm building energy and stamina everyday. Working out in the morning, errands or projects for a bit each afternoon. I am 2 weeks from my last chemo and one week until the next. I know that the first week after chemo is tricky, so I'm double enjoying my good energy right now.  I'm hoping Dr. Kaplan will schedule a scan as I am more than a little curious about what is going on in there!

You all continue to pour on the support. I was telling Lisa D how frustrated I was that I could not paint my bathroom this summer, then I planned to do so in September...well, September disappeared and the bathroom remained unpainted. So guess what is happening right now??? Lisa's husband Matt is in there painting...right now. Really! That is so very kind and generous! Thank you, thank you!

All the spots on the meal train are filled up and we've been spoiled with delicious food from  you all. After my next scan we'll decide if we need to continue the meal train into December or if we can put that on hold for now.

Thank you all for every bit of this love and support!

Janet

A good day!

Today was a good day! I had a 9:00 appointment with my naturopath,  Dr. Leanna Standish at Bastyr. I love her. She is so full of optimistic healthy charm and energy! I think I heal a little more just being around her.

When I was in the hospital Mike talked to her directly on the phone and she gave us her personal phone number. When I was in week three and we just could not stop the diarrhea I texted back and forth with her a number of times…she was in Hawaii at the time at a botanical garden. She was like a life line and gave me great encouragement and support. 

Today she was so pleased and impressed with how I’m doing and looking. She said I’d been through hell and just did not expect me to be doing as well as I am. She poked at me a bit and they could tell there is still some inflammation in my lower intestines. She did not add anything to my list of meds/supplements and wants to see me after my next scan.

Labor day weekend, when we had our pizza party, Brody, a friend of Michael’s (and a friend to all of us!) brought me a tincture of mushrooms. He said something like, this is for you, ask your doctor, take it or don’t but here, it’s for you. And then he told me a bit about it.  It is a tincture from chaga mushrooms. This was the first time I’d seen Dr. Standish since that party so I took it to check it out with her today. (We know Dr. Kaplan’s opinion about mushrooms!) She was very impressed and said Yes, take them and then told me to ask Brody if it was from the body of the mushroom or the mycelium? Brody???  Do you know? Anyway, she was supportive and I’ll add chaga to my turkey tail mushroom supplement. They are both “shelf mushrooms” and many of these mushrooms are excellent for fighting cancer. So, thank you Brody!

After our visit at Bastyr we went to see Maggie at work! What a treat, being in a classroom. Mike and I were both very impressed, of course with Maggie as a teacher, but with the classroom all the way around. There are about 16 kids, about 1/2 of them are on the autism spectrum and a few of those kids are pretty severally impacted by their autism. The other half are typically developing kids. We got there at the end of recess and they transitioned in well for read aloud and then for nearly an hour they were, almost all of them, very academically focused in their literacy block. There were a few small groups of 3 or 4 and some one on one activities as well. There was guided reading, independent leveled reading following that, phonics, spelling and writing workshop. This is a K/1 classroom so kids are 5,6 & 7, and it is only October. We were very impressed with the whole thing. Maggie of course is a rock star, but that should just go without saying!! And of course the children were adorable! 

Mike grabbed a bite after that at Chaco Canyon while I ate my  packed lunch from home (Chaco Canyon has got to be the opposite of low fiber…right?). Then Mike went to a group at Swedish and I decided “my” group was not the group for me at all! So he dropped me up on Broadway on Capitol Hill. I browsed some shops and did a good deal of walking up and down and then all the way South to Swedish and met him at a coffee shop when he was done. I was so happy to be out in the weather wandering aimlessly and anonymously! It was great therapy, good for the soul!

Now I’m pooped out…after being home most of last week and this week,  today was a big day! It felt good!

Love to you all!

Janet

Chemo Week…yuk…

It’s been nearly a week since I had my infusion and everyday I feel a little more normal, a little more OK, but underneath there is this weird buzz, a weird feeling throughout my system. I suppose it must be the chemo coursing through my body. I feel weak and weary and shaky. The cold reaction has mostly worn off now, that is a relief, but definitely need to get my stamina up. I have an appetite, and eat small meals throughout the day. I continue on a pretty limited diet. This week I added some gluten free oatmeal to my list of fiber and 1/2 of an unpeeled fresh apple…pretty exciting food life we’re living here!!

After chemo they gave me a shot to boost my white blood cells. It causes pain in the big bones as the white blood cells push out through the bone marrow (at least that is how I understand it). She warned me it would feel achy, like when you get the flu, as that is just what your white cells are doing when they start fighting the flu.  It made for some uncomfortable days and lost sleep, but who can argue with a few extra white blood cells at this point in the game! 

I’m doing ok, in fact I’m doing ok enough to feel very impatient (that is my nice word for pissed off) about this whole thing. I’m so ready for cancer to be over and I just have no idea how long it will take. I’ll take it as a good sign that I’m well enough to feel this way.

Thursday I went to a support group at the hospital; a living with cancer support group. Not so sure I’m going to be able to go back. I don’t think I’ve lived long enough with cancer to run with that group. Some have been living with cancer 5 years, 8 years, 12 years…They have such a mixed bag of issues; physical, personal, financial. It was a little overwhelming and quite depressing. I left counting all of my blessings, among them everyone of you reading this blog. I might need a ‘newly’ living with cancer support group…this one was just too intense, like tough love.

I have a whole 2 weeks to feel a little better each day until my next infusion. Feeling as I do now I am quite confident that it was the daily oral zeloda that kicked me so hard and sent me to the hospital. I’m not having nearly the kinds of reactions I had after that last round of infusion and all those weeks of zeloda. That is a relief…to feel better, but it’s a little scary to think that maybe it was the zeloda that was also killing most of the cancer. It’s a waiting game now. 

I’m so grateful to feel as good as I do though, and to get this bonus summer day this late in October! Mike and I spent a good hour planted on a bench at  Alki watching all the people and boats go by. Beautiful day, glad I was well enough to spend some of it outside.

Thank you to my visitors, my regular flower delivery folk, my food train, my friends…thank you to you all! I hope you were able to enjoy this beautiful day!

Lots of Love 

Janet

Yesterday was a long day! But, I’ve got the chemo back in there doing it’s work. There is no word on when the scan might be so we just have to make up our own visualizations of what cancer is there and how it’s being wiped out. Yesterday we picked up a copy of the latest scan they did while in the hospital. The focus of that scan was on what was causing the D. not so much on the cancer. It did say the pancreas was unremarkable which makes me think that cancer is gone completely. But I don’t really know for sure. I still think that I have never been sick from the cancer itself…just the original internal bleeding and then the side effects of the chemo.

So, much of my regimen stays the same: the same infusion once every three weeks (you cannot have it more frequently, even if you are not taking oral chemo in between), Pantaprozole for my stomach 2x a day, B6, Iron, steroids for the first 3 days following chemo, Glutamine 2x a day, and when I asked him about the turkey tail mushrooms prescribed by my naturopath, he said to take them but he couldn’t tell me how many…a handful, a bushel, a basket??? He is a funny man! I’ll take what Dr. Standish told me to take. Then I have an appointment with her later this month.

Side effects so far are the predictable reaction to touching cold with my fingers or toes. I have 4 kinds of gloves I use for different situations and lots of cozy socks with my slippers. So, I am well taken care of for this set of side effects! I am vigilant watching out for any other side effects that might come my way and I have Dr. Kaplan on speed dial. I’ll not be sucking it up, playing martyr or waiting around this time! I learned my lesson the hard way!

Mike and I talked with the dietician during our chemo appointment and she is moving me up to 5 grams a day of soluble fiber…baby steps! This means once a day I could have 5 grams of gluten free oatmeal,  or 5 grams of legumes (though I must say the legumes make me a little nervous…might wait a bit longer for that). I can have ground flax or chia seeds. Since I’m staying away from wheat and gluten that is really about it. Watch out gluten free oatmeal with a little ground flax…here I come!!

The dietician, Mary, said that it would take 1-2 months to be back on track. After what I went through I am very patient, there is no hurry!

Over the weekend, when Kathy was here we tried to have a pizza oven dinner but it never worked out. Betty had made the dough and we had acquired the ingredients, but it just didn’t work out (next time Kathy, and a good reason to make it sooner, not later!!). Anyway, last night the troops rallied to make pizza. Lizzy and June made the sauce, I held the baby, they made me a yukon gold pizza oven roasted “pizza” with oil, salt and some manchego cheese…it was yum! I don’t think I got off the couch once and there was a flurry in and out and a good time was had by all! A good way to end a chemo day.

I have to add that at the end of the night Mike and Maggie and I were watching a tonight show and I was looking through a random box of photos looking for a picture to post for Kathy’s birthday yesterday. I found this little flip book of mostly Michael’s baby pictures and there is one from our PEPS group where we lined up 8 babies on a couch, mostly just scrunched up, not really strong enough to sit on there own. And our little Michael had such a big head that Maggie was weeping through her tears. She made me laugh so hard! And that my friends is the best way to end a chemo day! Sorry Michael, that it was at your cute little baby picture expense…it is hilarious! 

I’m taking it easy today. This blog is my biggest task and now I’m done. I’m going to finish that book today for sure!

love to you all

stay healthy!

Janet

I learned my lesson, actually I’ve learned many lessons recently. The one I am speaking of here was pointed out to me by Lisa D. She said, and rightly so, that her mother would have made me bite my tongue and take back the words I wrote here over a month ago after we got the results of the scan…I said, “I laugh at the side effects! Bring ‘em on!!” 

I officially take those words back… Side effects are not funny and I do not want them to be brought on!! There, I hope that takes care of that! Please take that as my official stance on side effects.

Last week was a lovely oasis and very much a vacation in the midst of my time with cancer. I did get a little exercise (more than none), we ran some errands and even had a little play time in the Junction, but mostly we sat around and talked and read and watched Moone Boy and movies. 

Missa, thank you for Moone Boy. I started watching it in the hospital with Michael and Maggie and then watched those a second time when Kathy arrived. It’s very helpful to watch it twice as the Irish accent is a little tricky to pick up. We just finished the second season the day before she left. So enjoyable!!

Kathy, to say the least, is a lover of movies, we watched many movies in between episodes of Moone Boy. My favorite, I think, was The Station Agent. I just loved the Big Idea or the Lesson of the movie. Two thumbs up, for that one.

While I was in the hospital Maggie was drawn to the puzzles in the “family room” on the 12th floor. That might be putting it lightly…some where between drawn to and slightly obsessed might be where her interest fell. Anyway, we’ve started doing puzzles at home. So my vacation included a bit of puzzling as well.

No vacation is complete without good novels. I finished up Boys in the Boat (thank you Kathleen and Simon). I loved how that book was written. It is the true story of the UW crew team who went to the 1936 Olympics in Germany during the rise of Hitler. I highly recommend it! Now I’m reading in record time another WW2 related book. This one is set in France and Germany in the early 1940’s; All the Light We Cannot See. I am enjoying this book equally. I’m staying up too late reading it as I cannot put it down! I know I already thanked Peggy for this, but now that I know how good it is I have to thank you again, Peggy!

With Kathy here that gave Mike an opportunity for a little break. He spent the weekend up in the San Juan Islands fishing with our friends Mike and Conor and their family. They had a highly successful weekend of fishing and he came home with his limit of crab and salmon! Yum…going to eat some of that before I loose my appetite!

All in all, a very good week! Thank you Kathy for coming up, leaving all those cute babies in Boulder, to stay with me. I hope I don’t NEED you to come back soon, but I hope you do!

I am feeling quite good today. Over a month of no chemo and I’m gaining stamina and energy every day. I’m getting a few things done around here that I usually get done in the summer and it feels like quite an accomplishment and a relief. Tomorrow I head in to Swedish and I’m going to tell Dr. Kaplan that I am ready for chemo. I imagine he’ll agree and we’ll get back to fighting cancer.

No more talk of poo here (you’ll have to find another website for that kind of thing!). All is well in that department. The focus and obsession now is on food. I’m trying to broaden my diet a little bit every day or so. I’m still low fiber/low residue and trying to eat a variety of foods in that category. Tomorrow I’ll ask the doctor about adding a bit of fiber a little at a time. I’m dreaming of the day that I can enjoy eating a salad! 

I’m thinking of you and thanking you all. 

Lots of Love

Janet

Getting Stronger Everyday!

Good report from the doc today. He is very happy with how well I'm doing. Unbeknownst to me, I had a scan during the first week of my hospital stay, so I'll not be having another one just yet.  The plan is to start with an infusion of chemo next Tuesday if I'm up for it. I think he'll use the same infusion as before but to leave off the daily oral Zeloda. He's still not convinced that is the culprit, but it seems the most likely. So, I'll keep trying to eat a little more food and a little more variety a bit at a time and get strong enough to start back at it next week.

In the meantime, I'm enjoying my week off. Kathy and I watched 2 movies this nice, cool, grey afternoon. We watched The Trip and The Station Agent. A great relaxing afternoon. I started a new book this week, too, All The Light We Cannot See. This book was a gift from Peggy Brentlinger that I received right after diagnosis, very early this summer. Thanks Peggy, it is beautiful! Love it!

So this is vacation week. I'm getting stronger and having more energy each day, so hopefully by the end of the week Kathy and I might get to venture out of the house for a few adventures, at least in West Seattle.

I'll sign off for the week and pick back up over the weekend or early next week.
Thanks to you all for all the support that has come to us so generously and in so many ways.
Love to you all!
Janet

Happy at home...sitting here watching the Seahawks...life is good!
We had a full weekend. Michael and Eva came up for the weekend, Kathy flew in Sunday. There was lots of cooking in the kitchen, lots of laughing. Maggie made a cake for Eva and we celebrated her birthday. It is so, so good to be home!

Kathy and I are laying low, watching Moone Boy (thanks, Missa!), reading, napping, going for walks. Since I'm not on chemo and I'm feeling better every day it feels a bit like a vacation! I need this!

I AM feeling better everyday.  I continue to be super cautious about what I eat, mostly white food: white rice, chicken, broth, yogurt. I have added a bit of orange: well cooked carrots for a couple days, now some yams. Today I added a few bites of banana! Baby steps...

Tomorrow we go see Dr. Kaplan and perhaps make a timeline or a gameplan. I really have no idea what to expect. Chemo? Scan? Wait a while?

But for now all is so much better.
I'll keep you posted.
Love you all!
Janet

Well Happy, Happy Friday!
I am just so happy to be home! Wow! It was a little fast and somewhat overwhelming when I finally got released.

I had a really great day yesterday, being untethered. When Betty came for her morning visit and we were doing our laps around the 12th floor I noticed the stairs and we went up and down a flight. My glutes definitely need some work! But it just felt great to move a little more than usual.

Around 4:00, Nicole, my nurse put in a call up to Dr. Kaplan's office, said I was doing well and that we all thought I should head home. She asked for him to check in on his evening rounds.  Dr. Kaplan's evening rounds are anywhere from 6:30 -8:30 and he had not been round to see me in the evenings for a while since I was doing so much better.

Starting about 6:00 Nicole would peek in and asked if we'd seen him. She kept an eye out for him but he just wasn't around. Lisa Clayton and Bridget Daly came up for a visit right about 6:00 I think. Then my dinner showed up (chicken soup with rice...again!!). I was just taking my first bites laughing with Lisa and Bridget and Mike followed Nicole into the room. Mike had hands up to the sky and a big smile. Nicole and he had been out looking for Dr. Kaplan and she said, I'm just going to call his back line. So she did and he picked up and he said yes, yes, if she feels ready, let her go! Yeah for Nicole!

So I ate a few bites of dinner, visited for just a  bit longer with Lisa and Bridget while Mike started taking my treasures off the wall and packing up. I was too excited to eat much so a bit later we all started packing. Soon, Lisa and Bridget scooted out. I think I had 6 or 7 bags of stuff. Three and a half weeks is a long time to be in one tiny room. Nicole came out and removed the access in my port and gave me my exit papers. I had asked Mike to pick up some chocolates for my hospital people and I cried (shocking, I know) as I hugged Nicole and gave her the chocolates for her and so many others.
They were all so very lovely!

Henri, a lovely nursing assistant (or something like that) escorted us while Mike pushed a cart full of my stuff all the way to the parking lot. I gave her a big hug (she was always so sweet and lovely to me) and she took off with the cart. And we took off into the real world!

I had to close my eyes when we first got on I-5 it was all moving so fast...I was overwhelmed. But you know it didn't stay fast...ha! Traffic slowed and I enjoyed the ride and the sunset very much. When we got home it was just about dark and the front door was open. Just a few lights were on and the golds and reds from our cozy house were a welcoming beacon to me! Betty and Maggie were cooking in the kitchen. Life is good.

Thanks for all your love and support through that extremely trying detour in the middle of the detour cancer was already causing! On the road to recovery and probably back to chemo and the cancer fight in due time.

Have a fabulous, glorious and beautiful weekend to all.
With love and gratitude
Janet

I'm Home!!!!!!

Details tomorrow! for now...I'm just happy and home!
Love and thanks to you all!!!

Good morning!
I'm headed up the ladder!
Dr. Kaplan took me off the feed bag...I'm free! Plan is to send me home tomorrow. However, my nurse, Nicole and I got to thinking I might be ready sooner. So later today she is going to contact his office and see if I might get dismissed tonight. Not getting my hopes up for that....but I feel so ready! I'm staying on a low residue, low fiber diet for a week or so and trust me, I'll be super cautious with what I eat.
Kathy's plan is to come on Sunday and stay the week. It will be great to have her to help us all! Michael and possibly Eva are coming up this weekend too...so it will be a busy, happy weekend and My plan is to sit on the couch and watch it happen!
I've got some visitors coming today, so I'm going to enjoy this last day here!
Have a great day everyone and I'll see you soon!
Lots of love
Janet

Found the ladder!!
Can't wait to share my good news with you all.
Yesterday, as you know, I was on clear liquids and my gut was quiet and calm and healing all day! This morning Dr. Kaplan came in, he agreed it was just a little set back and wanted to move me up the tiny little ladder to full liquids.  I said I was hoping to move to the next level, low residue, because full liquids really just adds lots of dairy and I really didn't want much dairy. I told him I could make better choices off the low residue menu. He said that sounded smart and a good idea...so low residue it is. I told him I was shooting for Friday, and he said that sounded good too! So...smart food choices (NO wheat, little dairy).  I feel like I found the medium ladder! Not to the top yet, but headed that direction!

Low residue is basically really low fiber. No raw fruits or veggies, no beans, nuts or seeds, few whole grains. What I can have is white rice, mashed potatoes, applesauce, canned peaches, yogurt, scrambled eggs, some meats, ice cream, pudding. Betty brought be some organic applesauce and canned peaches, mashed potatoes from PCC, some rice pudding and yogurt. I'm going to order some rice from the menu and add almond milk that Betty brought. Tonight I may try small bits of cut up chicken, definitly need that protein.  Can you tell I'm hungry!!! I woke at 4:00 to with a hungry headache! I think that's a good sign! My body is trying to work right!

And now for the best news, yes I had a little real poo this morning!

Thank you all for your extra positives yesterday. It was hard to stay focused and positive through that set back! But we did it!!
See you soon and love to you all!
Janet