The Wall

A few weeks past I wrote about something my naturopath, Dr. Standish said. She described having cancer as like being on one side of a wall and people without cancer are on the other. And sometimes, we just can’t relate to or feel “normal” like people on the opposite side of the wall. It makes a lot of sense to me and helps me understand my anxieties especially around happy social situations that are overwhelming.

I’ve had a few people comment to me about this post and how they have felt the same way but for different reasons. It seems so clear now that just about everyone you meet has a wall and I think it is related to grief. I think anyone who is grieving something has a wall built up to some degree. I’ve been grieving for my health and my “normal” life but there are many kinds of loss and many kinds of grief. On Facebook the other day a friend mentioned having such a difficult time with Mother’s day as her mother has passed and she has no children of her own. Many of us have lost parents and I know too many who have lost children; I can’t even imagine their grief and how they have coped on their side of the wall. 

I guess, this is where peer support comes in. I have my two friends with stomach cancer, Gaby and Charlene. We email most weeks and hook up every month or so for coffee. We three are on the same side of my wall. It really helps to know they are here with me. This metaphor is helping me when I’m feeling overwhelmed and I hope it helps me be more sensitive to other people’s grief and loss.

Hope your day, where you are, is as sunny and beautiful as it is here, today.

love to you all

Janet

Why I love my wigs…

The other day I was at Trader Joe’s checking out. I’d bought beer to have on hand, because it is nice to have beer on hand. The checker asked me if I’d tried that beer…

(me) No, I don’t drink it much I’ve just learned from my husband, these 3 letters “IPA”.

(checker) Well, this is a good one. I bet he’ll like it. If you ever want to surprise him you can mix and match bottles for one six pack and try different kinds.

(me) Awesome, I didn’t know that, I’ll try that sometime! Thanks!

(lady behind me) Oh I love those old kind of Levis!

(me) Button fly, they are my favorites!

(lady) Right! Button fly. They are so cute!

(me) Thanks, you can get them at Fred Meyer, men’s department.

(lady) They still make those?

(me) Yes!

Now neither of these are epic conversations, in fact, quite the opposite…just little interactions, but I love those kinds of little interactions! I didn’t even start either of these, which I frequently do, cause I like to chat with strangers.

But, I can tell you from my experience this last year these would not have occurred if I’d not been wearing my wig. I really believe that. My wig lets me have normal everyday interactions with people and I’ve really, really missed that! I don’t think I even realized I missed that. My wig lets me be a person first, not a “cancer person” (ha ha! right, Nancy???).

I love my wigs! Both of them; Peggy Sue, the red head with the little sassy flip and Janet, the blonde!

Have a lovely weekend!

Love to you all

Janet

PS I'm feeling pretty good, still well, no colds,  crossing fingers and knocking on wood!! Self quarantine seemed to be the trick. More than ready to go hug some babies, though....soon....soon...fair warning, June!

I am very lousy at taking my own advice. I knew this weekend I needed to chill out, I had planned on just hanging out and laying low, but NO…how can life go on without me up and at ‘em and doing all kinds of stupid things. The lovely weather didn’t help me out one bit. The ants are making their annual spring march into our home so of course I had to empty and clean every single dang drawer and cabinet in our kitchen. I had to find all the crumbs before the ants did…that was exhausting and ridiculous! But, please, come open my kitchen drawers and just look at them!

Then Monday, such a beautiful day, I had to clean the deck and deck stuff in the 90 degree heat (I’m sure it was not that hot, but if you add deck reflection and hot flashes, I’m sure I am underestimating!). Now I can go out on the deck without being completely grossed out with the winter scum. I did not pace myself or use common sense, that does not come naturally to me when I’m hell bent on getting a job done. I way overdid it and by Monday night I was less than useless and felt like shit.

Oh well, I made up for it yesterday. The most strenuous thing I did yesterday was take down a light load of laundry and sort it…not do laundry mind you…just sort a bit. Yesterday was my down day and I felt so good at days end. I was able to have a great visit with Genya yesterday afternoon, cook a decent healthy meal and feel a little human. Aaaaahhhh…

I have put myself into quarantine away from any children in the hopes of staying healthy and free of colds this time round. I have resisted multiple opportunities to go and squeeze our little June bug next door, missed having Ian or Noa with Genya yesterday, missed an invitation to 7 year olds playing softball just down the street. Hopefully this quarantine will pay off! Last night I felt a bit of a scratchy throat and ran to the remedies. Today my throat is just a little tight…but I’m clearly not ill. I am so ready to feel better, I am so ready to feel well! And if that was really my last chemo, then hell, I’m ready to BE WELL!!

June 7, in the morning (not to interrupt any possible afternoon plans one might have) there is a walk sponsored by Fred Hutchison Cancer Research Center. It is called the Shore Run/Walk. My friend Gaby’s family is creating a team to call attention to stomach cancer in particular and Mike and I are planning to join them for the event. If you are interested in joining us, mark your calendar and I’ll keep you posted here when I know a bit more about joining Gaby’s team to fight stomach cancer.

Be well my friends!

Love to you all,

Janet

Long time no blog…

In this blog…travelogues and chemo #12 & photos!

We have had a full calendar during Mike’s and now Maggie’s spring break. Last week was my 4th week since chemo…my bonus week and I think I used it up!

Tuesday Mike and I headed up to LaConner. I had bought a Living Social Coupon at Hotel Planter in a great part of the small town of LaConner, just 2 doors down from the pier that has the best view of the Rainbow Bridge. We lucked out with a parking spot directly across from the hotel, with no time limit and never used the car until it was time to head back to Seattle.

We were able to check in early, got on our bike gear and headed to the tulips. I was behind Mike and he kept checking on me, but I have to say riding my bike in the country with the sun and farms and birds and flowers…I was screaming out loud happy! Freedom, that is what it felt like, freedom. On bike rides like this I always start singing the same songs…some Linda Ronstadt, some old kid songs that are forever stuck in my head, Bob Dylan of course and even some Bruce Springsteen. It is one of my favorite feelings…flat, warm enough, not too fast… perfect bike riding. We made it to the tulip fields and took our time taking photos, then headed back to LaConner. About 9 miles altogether, not too far at all, but a good first ride of the year for me. I convinced Mike to let me go back to the hotel and sent him on a fast ride, so he could get in a real bike ride. I showered, changed and went shopping while he rode. A win-win!

That night we had a great dinner, quite the splurge, at Nell Thorn. I had steak and fritz, the steak was from the Skagit River Ranch. A number of years ago I was addicted to their bacon and would buy it at the West Seattle Farmers Market. I know they do a good job with their cows and their beef. I even had a glass of wine! Mike had a cocktail (yum, I had a sip) and then a lovely seafood pasta dish. 

At the next table we were entertained by a very adorable 6 or 7 year old boy and what looked to be his dad and his grandma. They ordered a couple of desserts and when the little boy looked at the hazelnut brownie topped with ice cream and other bits of lovely items his eyes flew open and he exclaimed, “Holy what-the what-the!” So, of course, we had to order the same thing. Yummy and totally holy what-the what-the! 

The next morning after breakfast we put our bike clothes back on, checked out of the hotel and headed out for another ride. This time we went over the bridge where we had never ventured before. The land on the other side of the bridge belongs to the Swinomish Tribe, it is their reservation. We had hills today, the long gradual kinds, not to be confused with the vertical limit kinds. I did ok. We rode to a spot right across the water from LaConner. There are 3 round open venues with roofs like woven cedar hats. Inside each one is a display with information about the tribe, the history, the area. It was very informative and a beautiful spot.

We rode on two different directions but each of them had narrow shoulders, curves and gravel…not ideal biking conditions, so we headed back to LaConner.

A shorter ride today, but that is ok. I sent Mike on his way again and found a decent bathroom to change and don my wig. Then more shopping, I had a mission. I am finally ready to find a big bag, a real grown up lady bag, and leave my backpack behind (most of the time…). And I found it, another splurge, but it is made by artisans in Turkey using recycled fabric for part of it and lovely canvas for the rest. It has leather handles and it is beautiful. Mission accomplished. Mike met up with me, we had some lunch and headed home.

We had Thursday to do laundry, run errands and pack up for our 10 am flight to KC. The kids both came over Thursday and stayed all night which made it easier to gather up for the airport. Betty dropped us off and our family vacation started.

Thank goodness for Alaska Air and their non-stop to KC, rather painless. Upon landing we rented a car then headed to our condo a couple of blocks from the Plaza that I found on Airbnb. It was adequate for this trip where it was used really just for sleeping. Too much family time to get in to hang out in any rented rooms!

We quickly settled into the condo and then headed to moms. We had a great reunion with Mom, Matt, Kathy, Amy, and Paul. Then headed to Minsky’s Pizza for a bigger reunion. Jennifer and Bart and Kai were there. My Aunt Joann was there as well as all my girl cousins with the exception of Susan (we knew she was out of town and we sure missed her). These cousins include: Linda, Cathy, Julie, Jackie, Jill, Jean, Laurie, Nancy plus some spouses and kids, plus some friends of theirs, plus my niece Erica and her husband and daughter. I wore my blonde wig and a few of my cousins thought it was my real hair. Awesome! We had a great evening trying to catch up with all. Mike, Michael and Maggie were a little overwhelmed, rightly so, but hung in there and had a good time!

We went back to the condo after that and crashed. The other nights I ended staying with my mom and didn’t make it back to the condo until the morning we left. Mike, Maggie and Michael stayed there every night but showed up at Grandmas early and left from grandmas late every night.

Saturday morning we went bowling with Matt and his league. Well, some of us bowled and some of us who think sticking your fingers in those bowling ball holes is about as disgusting as it gets, well we just watched! It was a great competition among my family and it is always great to see Matthews bowling buddies, they are each so unique and lovely in their own ways. Mary Pat came to visit with us. She is the mom whose daughter, Rachel,  died not so very long ago at this very bowling alley; what a brave and strong woman she is . She and my mom are good friends and support to each other and she shows up at bowling periodically to visit. She came with us to lunch as well, our first KC BBQ of the vacation! BB’s Lawnside. Great BBQ, live blues/swing music, long communal tables, it doesn’t get more KC than that! There were 18 or 20 of us, quite a posse.

This trip included 2 more BBQ events: Jack Stack's Smokestack and Bryants, we also hit our favorite burger place 2 times, Winsteads. I had a chance to visit my Aunt Rose Evelyn who has been ill but thankfully is on the mend and recovering. I got to visit my high school friend Mig and catch up a bit. We spent time at Jennifer and Barts for game day. There was an epic game of capture the flag with humongous nerf guns,  Bart has about 7 pinball machines that quickly filled, the Masters was on the projector and those of us who prefer a movie watched Date Night in their movie room…something for everyone! There was also shopping, drinking coffee and general hanging out on the Plaza. We had lovely weather by day and epic thunder and lighting with torrential rain a couple of nights. The redbuds and dogwoods were blooming as well as the tulips and a various other blooming trees.

It was a great trip. We packed a lot of food and fun and family into a very tiny bit of time. I felt good, had good energy and looked healthy and that is what my mom needs to see in person. It is always hard to say goodbye to my momma, but we did after our final trip to Winsteads and a visit to the most beautiful fountain in KC that had been closed for cleaning all winter and was just turned on the day we left! Gorgeous!

I plan to return sooner rather than later, most likely by myself again, or maybe with Mike. But having all 4 of us there was very special and gave me the support I needed to do all that we did. A great spring break!

We arrived home 6:30 Tuesday and I went to chemo at 9:45 Wednesday morning. Maggie stayed all night and had a 9:00 dentist appointment and Mike had to return to work, so Lisa dropped me off at chemo and then Maggie came after her dentist appointment. She got there after my blood draw and port access and in time for my appointment with Dr. Kaplan. We brought him 3 bottles of BBQ sauce (as he had informed us of how much he likes BBQ) and he was thrilled. “You brought me sauce!” he exclaimed. Such a cutie! We discussed how it was going in general and he told us that I would get a PET scan not a CT scan as the last CT just couldn’t give us the details. One has to wait 63 days between PET scans, now I’m not sure if that is all your body can take or all your insurance can take or some combo of the two. He said, not to ask him, it’s just the rule. My last PET was March 12 and 63 days from that, by my calculations, is May 14. So, about one month from now I’ll be hearing whether or not I have any more cancer…I’m looking forward to that day! We did not talk possible scenarios depending on the scan results. Best just to wait and take it from there. I’ll be down 5-7 days now for what could be (and hopefully will be) my last time taking the big chemo hit. Then I’ll have 3 weeks until the scan. My sister and her husband are driving up for a visit early May, I have plenty of things to do around here and appointments to be kept…so time will fly…

I always feel ok the first day or so after chemo, while the steroids are in my system. It will be the weekend when I really crash. I’m ready, lots of things to watch on the DVR and the iPad, lots of tissue ready for the tears, I’ve got the diffuser running and I’m obsessed with not getting a cold this time round!

Until the scan Hope prevails!

I know many of you are on spring break and I hope you are enjoying yourselves immensely. 

Love, love, love to you all!

How bike riding makes me feel!

Holy What-The What-The

Jack Stack...the best!

Michael and Matt

Maggie, Amy, Matt, Erica

  

yum-o!

pinball wizards, Maggie, Matt, Amy, Bart and Michael

Maggie with a complimentary super-drink....super yucky that is!

On the Plaza
Erica, Maggie, Me, Amy Kathy and Jennifer

JC Nichols Fountain

Mom and us, last day in KC.

We had a fabulous weekend here. Michael and Eva drove up Friday night, Maggie came over to spend the night, and Betty was up. We had a delicious dinner with Halibut, Salmon, brussel sprouts, green beans and salad. We had a full house with everyone home and lots of good food! Just how I like it!

I have 2 wigs now. The one that you already saw a few posts ago and a new one that was gifted to me by the American Cancer Society. This 2nd one is a little more red and had a lot more hair; quite long and wavy, a little much for me. Along with the free wig, The American Cancer Society gives out a list of salons that will provide free shaves for people and free cuts and styling for the wigs. I made an appointment with Gary Manuel Salon downtown for Saturday. Betty, Maggie and Eva joined me and we had a nice girls afternoon out. We had lunch at the Macrina Bakery and Cafe on first avenue (yum!). We wandered around for a bit in Bell Town until it was time for the appointment.

My stylist name was Derek, what a generous soul. He welcomed all four of us. I was afraid there wouldn’t be room for 3 additional people, but there was and he made us feel comfortable right away. He looked at my scraggly, curly, patchy fluff on my head and asked what I wanted to do with “that” (in a very nice way). And I said I was just going to let it grow and he gave me a thoughtful “hmmmmmm?” which clearly meant “not a good idea!”. So I inquired what he thought I should do…just what I feared…shave it off. He gave us the rational, which made sense, even offered a private room and double checked when I started tearing up. I didn’t need a private room, I was OK,  I’d brought my people, my support with me and they were all nodding in agreement with Derek. Good bye fluffy scary puffy hair that looked like a demented old clown head! Let’s see what grows in this time!

After the shave (another buzz, not a slick shave) Derek taught us a lot about wigs: brushing, styling, cleaning and fitting. He was thoughtful, careful, funny and very dear and along with my supportive girls, helped me laugh my way through what could have been a very tough event for me. Derek let me know that anything else I might want to do in the future with my wig or my buzzed head would be free of charge and he would take good care of me. I hope I don't need him for wigs or buzzing,  but I do know I'll be taking my real hair for him to work on someday in the future! Thank You Betty, Maggie and Eva for taking such good care of me!

I’ll post a picture in that wig someday soon.

Love, hope and warm sunshine too you all!

Janet

Hope 

I’ve struggled with the notion of hope. Not knowing how much to hope. Should I be cautious about hoping? I don’t want to jinx things. One day, in tears on the phone, I said to Kathy, my sister, who has been through more than her fair share of tragic and scary things, including cancer,  “I don’t know if getting better or being cancer free is too much to hope for?” She said without hesitation that of course I should hope for the best outcome. Ever since then I’ve tried to do that; hope for no cancer, hope for the best.

I’ve mentioned my two new friends in Seattle who also have stomach cancer. We email somewhat regularly and have met for coffee twice. They are very supportive and of course understanding. We all go to different cancer facilities and we are all in different places in our treatment. But we all have to have hope…

The other day Charlene mentioned hope in her email, I think about the notion of hope frequently and I emailed to both of them a passage I’d just read and marked in a novel the night before.

I’m done with the book now, Beautiful Ruins, by Jess Walters. I loved the story and the writing. It was one of those books I didn’t want to finish. It was not a book full of insight and messages, really more of an enjoyable story, but toward the end of the book there was a gem I could not just pass by, I had to reread it a few times, mark the page and then I write it down. “...true quests aren't measured in time or distance anyway, so much as in hope."   As I said to Gaby and Charlene, if our quest for health is measured in hope, then we are on an epic journey! And as often as I’ve wondered if winning this battle is too much to hope for, I have to fight that feeling and hope for it all.

Last night Mike and I watched the episode of last Sunday’s 60 minutes about “curing” a specific type of a horrible, fatal brain cancer with the polio vaccine. The first two people in the trial are alive and their tumors have shrunk completely, they are cancer free! There are other people who look like they are on this same path. It is in clinical trial and as the doctors changed the dosage there were patients who did not have the same results, patients who died from the cancer. But these first two are cancer free at this point and without this treatment they really most likely would not be alive. That was really too much to hope for, and yet…

So, hope, pray, wish, meditate, dedicate, will it to be so, visualize…do it all! That is how I am filling my time this year.

And now, with this round of cold very nearly gone I shall go downstairs to work out. It is part of the treatment plan I have to do if I want my hopes and wishes to come true!

With love and hope,

Janet