Mystery Pain Returns

What a week! No word on treatment and I’m trying to do this and that, taking care of business, having some fun, trying to get it all in before I start back on treatment, not knowing what that treatment will bring me. It reminded me just a tiny bit of nesting, but without the joy, the cute little baby clothes and books and toys. But I’m getting everything ready so I’ll be ready for the unknown. Something is going to happen, it is going to be intense and I want to be ready.

Unfortunately, as the week progressed so did my pain. Most days I have been pain free (and I am ever so grateful for that!). But like clock work, about 2 hours after I fall asleep I wake with terrible pain, I have to get up and wander the house, try different positions, surfaces, meditation apps, until I wear myself out and can get control of myself, my breathing and then I fall asleep. I wake at 3 or 4 or even 5 am, without the pain, and get to go back into bed. By today, it had just taken its toll on me. I lost it this morning. Lost in worry and despair and pain. Mike held me and comforted me until I could get a grip. We went on a marijuana pain without high shopping mission, but honestly, I think if I want marijuana for pain management, I’m gonna have to get high. And I don’t want that. And I don’t feel like I have the luxury of time to figure out the right cbd/thc ratio for me. I need this pain to be gone today. I need a break.

This afternoon, I had about an hour of pain as bad as it’s been. I finally broke down and opened up the ole doctor bag o’tricks and took a tramadol. It’s a slippery slope. But I cannot cope with this level of pain, and I don’t want to be high, so, I’ll take a few pain pills to get through until I can see someone this week.

I’m feeling better already and I’m going to go out and join the pizza party. June has a friend over, another neighborhood little cutie pie, so they will be the real medicine that will make me feel better!

Again, thank you all for your texts and emails.

Jamie, Mike gave me your message and I will call you soon.

Love to you all

Janet

This morning, walking Wilson, thinking about hope and realizing how heavy it felt; how much energy it takes to keep hope up off the ground. But, I have to hold hope. Putting it down comes at a cost much bigger than not holding onto hope. I’m not sure of the entire cost, because every time I set it down for a minute it hurts. A physical emotional spiritual pain. So I am holding hope. Hope for the right treatment. Hope that I can start treatment soon. Hope that the treatment doesn’t cut me down too far. Hope that the treatment works. That is just the beginning of my hope list; no wonder it is so heavy.

I am hoping for the JC immunotherapy drug, but only if that is the right drug for me. When I was a little girl and I would pray to Mary and the Saints to intercede for me I always had to put a caveat in my prayers. I would pray hard and long for this or that, but only if it did not do damage to others; only if it was the way things were supposed to turn out. I would not want my outcome at too great of an expense to others or if it was not supposed to BE that way.

So here, I hope and pray, ironically for a drug I’ve labeled the JC drug, but only if it is the right drug for me. 

My pain from the spring is coming back. It comes and goes, lightly or with a heavy hand; sometimes in the morning or during the day, mostly at night. My anxiety around the pain, after all I experienced in the spring, may be as bad as the pain itself. I think my body wants the cancer to go away. 

I know the fine folks at Dr. Kaplans are working on getting approval for Keytruda (JC’s meds) through my insurance and directly from the drug company. I guess it is just a matter of time until I hear from them. Is the waiting the hardest part? I don’t know

Thank you all for your kind comments and texts and emails and visits. I know I don’t have to hold up all this hope by myself. I know you are here with me.

With love and hope

Janet

Time to dust off the boxing gloves…here we go again.

As much as I would love to be writing and telling you all about our lovely trip back east, all the great friends we saw, food we ate, monuments we visited and steps we walked I had a scan today and in my news cycle, it takes precedent. I hope to give you a glimpse into our vacation maybe sometime next week. 

But in the mean time…I had a scan today and it was not the news we hoped and prayed for. It was not what we visualized and meditated on. It was not great news.

On the good side…the radiation did a good job to the tumors that were targeted. They are gone or smaller. However, there are 3 or 4 new tumors on the left lobe of the liver. And through the blood, the cancer spread to my lungs. There are at least 6 small (he said small many times) spots on my lungs. When he said lungs I kinda freaked out but he said not to make a big deal about the lungs. He said it didn’t matter if it was the lungs or the big toe, it’s the same gastric cancer and it is spreading through the blood like cancer does.

OK, what do we do? I gave up my job so I would not have to say, what do we do so I can go back to work in a month (that would not be possible…I’m so glad I  made that decision and have that part of my grief behind me and not colliding with this part of my grief).

Right now it looks like there are 2 possible treatment plans. One that is newer, in the immunotherapy set of drugs and the other is more typical chemo.

The one we are hoping to be able to have access to is what I’ll call the Jimmy Carter drug. As you know, cancer disguises itself as a typical cell so your immune system does not know to attack it. This newer kind of drug “unmasks” the cancer cells for what they are and it allows your own immune system to go to work. It has shown to be very effective on some cancers. The side effects are much more minimal, much less intense, much more tolerable than typical chemotherapy. The problem: it has not been approved for gastric cancer. It is approved for some cancers. It is showing signs of working on gastric cancer, but it is not yet easily available for my cancer. But, it is possible the insurance company will say yes, it might be possible to hook me up with a study and he said sometimes the drug companies will give out the drug for free (I imagine, when they work with a doc like him with so many patients, and so much experience, and they really want to get their drug out there…it makes sense. I’ll take free samples!). And I really, really like Jimmy Carter, so, there, I want what he had!

If none of those paths open for us, I’ll be on the more traditional chemo regiment again, with 2 drugs: taxol and one more I cannot remember. There will be nausea, fatigue, possible hair loss…the usual.

So, we wait and see what kind of strings he can pull, what kind of rabbit he can pull out of his hat and then we do it. We just do it and fight it again. Cuz that is what you do. That is what I do.That is what we do.

We’re off to Yakima this weekend to sip wine, walk through vineyards and wineries with some of our oldest and dearest teacher friends. It will be a great group to be with.  We've all had variations of grief; none of us have been spared. They will all have their own kind of salve to help me with my current wounds. I’m looking forward to time with these guys.

Next week, I’ll try to figure out how to post some east coast pictures and let you know when I hear from the good doctor.

Have a great weekend.

Enjoy this beautiful weather (if you are in Seattle) the rest of you may need to stay inside air conditioning! Stay cool.

Love from us to you

Janet

A Gut-wrenching Decision

My Last Day

Lots and Lots of Hard Work

2nd Cancerversary

Now It Is Time To Play!

That is the summary of my life since my last post…

The last week of school I went into work a number of days, after the kids had left for the day to help clean up and pack up the classroom. I spoke with David about next year; we talked about the timing and the hiring process if I were to let the job go and many variables around this decision. It was clear to me that if I decided not to go back next year, the sooner I let the job go the better for them to be able to hire the right person for the job. There is a lot to this, I’ll spare you the details. I did not feel pressure from David but just asked myself…if my scan comes back looking good, what will I do?

I cried for hours and days and nights trying to make this decision. If my scan looks bad and I have to have treatment…that’s a no brainer, I’ll not go back. But if my scan looks good…what would I do? There was a part of me that wanted to dig in my heels, I’ve been at Pathfinder for 20 years and they can just wait until July. But really… could I make the decision now? If my scan looks good is going back to Kindergarten the best path for me as I continue to fight cancer and heal? There is just no way the answer to that can be yes. How could anyone, knowing all that Kindergarten and Pathfinder demand, think that going back to work full time in the fall would be my healing path? No one thinks that. No one thinks that. Not even me. I’m fortunate (to say the least) to have Mike’s insurance that I can jump onto. So, I decided I had to let the job go. I cried buckets making this decision. I still cry, but not as much, as I really have come to peace with this decision.

I made my final decision on Thursday, the day before the last day of school. Earlier in the week I had talked with my sub Anna and we agreed that I would come in the last day of school and teach along with her (well actually, if you know me, you know I had to take over…I’m very alpha in the classroom, and Anna was A-ok with that!). I didn’t tell anyone at school that day that I had decided to let my job go (except Anna, wanting her to apply for my job). You just don’t drop that bomb when there is so much else going on.

I had a great day! We wrapped the year up beautifully. I brought in black polished pebbles that I bought at True Value. They decorated little muslin pieces of cloth with sharpies, with calming designs and pictures, then picked out 4 pebbles and wrapped them up and tied them with a piece of yarn. After lunch, we opened up our pebble bags and did our 4 pebble meditations, from Thich Naht Hahn that we had practiced all year. It was truly lovely. I’ve heard back from a number of parents about their children wanting to meditate this summer or finding the pebbles under their pillow. I truly was filled up with them and their little selves and their huge egos. They filled me up that day. I could not have asked for a better last day of school.

On Monday I went in to continue cleaning and sorting, packing and tossing, recycling and recycling and recycling…I told David and my teacher friends that I was done. I was not coming back to the classroom. Guess what, I cried some more! Shocking, I know!

On Tuesday Jennifer came down from Bellingham to help me sort through things and she and Genya and I went to celebrate/commiserate/mourn/drown our sorrows at the new burger place in the junction by having cold pressed coffee shakes. Yes, that is right, cold pressed coffee shakes. Just what the doctor ordered. I spent all day Wednesday and Thursday in the classroom. And then Friday I worked all morning and  at noon Mike came in and loaded up my personal bits and pieces, books that actually belong to me or Michael and Maggie from their childhood, a couple of boxes for good will and off we went. Done and dusted. I had to leave notes here and there for the new teacher….I’ll be back to go through these drawers and Crissy is going to take care of these books and a few other bits like that, but for the most part…done. Then I cried some more. 

I think about the kids I would have had in my class next year. I can name at least 10 I would have hand picked, though I know Genya and I would have done some arm wrestling over a few of those, and it makes me sad to think of missing the chance to be their Kindergarten teacher. But my plan is to sub, primarily at  Pathfinder, but elsewhere in West Seattle, also, so I will get to see them, be with them. I’ll get to sub in the classrooms with some of my previous students, as well. It won’t be the same, not by a long shot, but I’ll get some good kid time, some good teacher time, time to read aloud and sing along and then I’ll get to go home and take care of myself and Mike. That sounds like a good plan. Who could argue?

It just so happened that through all of this decision making and work cleaning and packing my classroom I was also reliving milestones from 2 years back. June 28, 2014, Black Poop of Death Day (see my first blog post if this makes no sense and you want to know more). And Friday, as I’m packing up my last bits at Pathfinder, July 1, two years since the day I got the phone call and the diagnoses…stage 4 gastric cancer. To say it has been an emotional time is putting it mildly. It was brutal. But now, I’m on the other side of the cancerversary, the other side of the decision and I am at peace.

Now it is summer…time for play…oh, not yet…we spent the weekend cleaning up the yard and debris around the house prepping to get the house painted. And our generous and talented neighbor Scott the plumber spent hours working on our plumbing and Betty’s so there was lots of under sink work and clean up to be done! Oh my gosh…I’m not complaining, but I worked my ass off for days straight. Actually, I’m not complaining, I might be bragging…because now I can work hard, I’m off the couch and back at it! It feels good to regain some strength and stamina!

Now it’s summer…yes! On the 4th for July 11 of us went for a hike up near Mt. Index. A great 4 mile round trip, mostly flat with a lovely alpine lake for a picnic, kind of hike. Just my kind of hike! We had 2 and a half year old June-bug, mostly in Lizzie’s back pack, 7 year old Conor keeping up all the way there and back, chatting and entertaining us the whole way, Mike and Gillian, Maggie, Michael, Eva, Betty, Mike and me…11! It was cool and drizzly at times, but wonderful. It felt so good to be strong enough to be out and about in nature, reaping the benefits of the beauty of the Pacific NW. I am grateful and blessed.

Thank you to so many friends who let me cry and listened to me as I agonized over my decision. Thank you Mike for just letting me cry…so much…so often. You knew that was just what I needed. And thanks to all of you for your continued support. Our life was hijacked by cancer 2 years ago but we are still here…we are strong.

Love to you all

Janet