Another cold :-(

It just seems like a pattern…chemo and a week later I get a cold. I felt so great last Tuesday and luckily I enjoyed that; didn’t take it for granted! Wednesday it started to creep in and then it just got worse. Mike got it this time, he’s dodged every other cold I’ve carried around. So we had a lay low weekend just trying to get through it, get over it and be done with it. Well, we’re not quite done with it…but fingers crossed this one doesn’t last as long!

This weekend Michael and Eva are coming to visit. We’re hoping to spend some time in Fremont with Maggie. Maggie is adjusting quite easily, I think, to her new world. She rides her bike to work on nice days, just a 20 minute ride. That is a far cry better than the hour each way on the bus she had from home. We see her on Thursday night, when we do Pilates together and on Saturday she comes to West Seattle to do her laundry here and her Saturday morning work with Ian. She is happy…momma is happy!

And more good news; Michael and Eva are planning to move up here together this summer, July or August. We are super excited to have them here! Now that Maggie and cousin Lillie live in Fremont, that is where they will be looking, and who can blame them! Michael is staying with his job for a while, but planning to move on. It has been a fabulous job for him but he realizes he really does want to be a firefighter and is moving up here to start putting those pieces in place. To become a firefighter in Seattle is  very competitive. It is a long process with many stages and with many, many more applicants than positions. He is planning to work a couple of jobs next year, go to North Seattle Community College for his EMT training and begin the application process. I’ll keep you posted.

Eva will also be looking for work. Michael says her current place will not want to see her go, so she may end up staying down there an extra month or so. I’m not sure what she is going to be looking for, she has mentioned working for unions, her internship was with the NLRB and she liked that work.  When I know more I’ll post it here and maybe there is someone out there with some ideas for her.

The nest is empty (except for Wilson, of course) but they are all going to be nearby! That makes my heart sing!

Betty is doing well and is taking steps to reduce stress and get lower her blood pressure.

She is taking walks on her lunch break, doing a little meditation, NOT working on the weekends, taking some vacation days this week…it’s all good and getting better!

Next week Mike is on Spring Break. We are heading up to the tulips and staying one night in LaConner. We are taking our bikes, of course, and hoping for sunshine and enough good health and energy to get in a little bike ride. It’s nice and flat up there, so if the weather is good, I should be able to ride! Haven’t been on my bike since our ride in July before I started chemo. I love bike riding in the Skagit Valley and can’t wait!

A day after we get back from that overnight all four of us head to KC for 4 nights. A quick trip but with Mike and Maggie’s spring breaks on different weeks we had to compromise and make the trip compact and efficient. We have a pizza party planned at Minsky's for Friday night, all relatives invited (I have a lot of cousins and they have a lot of kids! Hope you all can make it!!). Then Saturday morning it is bowling with Matthew and then BBQ lunch at BB’s Lawnside. We’ll be packing in as much BBQ and family time that is possible in 4 days! 

Because this trip was planned I get an extra week between chemo so I should be healthy and feeling good in KC! The day after we get back I go to chemo…potentially my last one! Amen to that…

So, other then colds and in spite of cancer, we are doing well.

Love to you all, 

Happy Spring!

Janet

Coming out of chemo fog

Sure enough, the evening after that last post I started fading. Carrie reminded me that during chemo they bolster you with steroids and that helps you feel better…for a while!

I was feeling so positive and feeling so good about being off Xeloda that I really didn’t remember to factor in the cumulative effects of so many chemo sessions! I’ve lost count, Mike says it’s been 11. So this past weekend I was really down for the count, good for nothing. I went out on a few short errands with Mike on Saturday morning, but that was it. I think it made it a little more difficult emotionally that I was thinking I was going to be so OK, and then I wasn’t. Oh well, it’s all part of the cancer package…lessons learned daily!!

Yesterday, luckily I was out of the fog enough to drive myself to Northgate in that downpour to go see Dr. Standish (ain’t no mountain high enough…ain’t no rainstorm hard enough….).

For someone who rarely drives anymore and if I do it is usually on our sweet little peninsula, that was an attention heightening experience. I had to tell my senses “all hands on deck!” With the help of great music from KEXP I made it!

Dr. Standish and Camille of course were more than pleased with my scan results. Dr. Standish looked simply delighted! She reminded me of how far I’d come…to someone who could not get off the floor, whose internal bleeding demanded 3 bags of blood, and now I’ve got a bit of cancer left on my liver and I’m strong and healing! That has been a long road in a relatively short time. 

She says she gives the Turkey Tail mushrooms a good deal of credit. As do I! I’ve been buying them and taking 3 pills 2x a day since I first say Dr. Standish. She told me they had been shown to help the chemo do its job. I think they did their job!

We talked about possible radiation, if that is necessary. She says radiation is our friend, they have come a long way in that field and I will most likely have little to no side effects. 

If I do radiation she will have me taking high doses of turmeric (curcumin) as it has been shown to help the radiation do its job. Ok, no problem!

She also recommended crying and letting it all out. Hey, no problem! I told her I was a cryer and she said I was lucky! I love  her!

Then we talked about my favorite part…when I’m done with treatment and how to keep me in remission. She wants me to do IV therapy of Vitamin C and artemisia (wormwood) one time a week to start. The IV treatments take 30-45 minutes. I’m really looking forward to remission  (God willing, or Inshallah, as I learned from Maggie in Dakar).

not out of the woods

not counting my chickens

but hopeful!

Love to you all on this grey spring day.

Janet

Every day further from Xeloda is a better day!

I just can’t get over how much better I feel everyday without Xeloda. This is usually the day I feel the lowest from chemo…2 days out…and I know the day is young, but I’m feeling good. I’m sure the wall coming down a bit and the weight just a little lighter is helping also…but I just want to feel good while I feel good!

Last Saturday Mike and I celebrated 29 years of our first fix-up. We were both working at the EEU and a couple of our friends, Jennifer Annable and Debbie Sherwood thought we would be a good match. Jennifer would talk to Mike about me and Debbie would talk to me about Mike. Then at happy hour they crowded us into a booth and we couldn’t get out…the rest is history! So I braved the world Saturday, practicing my new hat with fringe. We walked up to Westy’s on 35th for dinner. Here is a selfie of Mike and me with my new “hat”.

On Monday I went out to run errands like I often do the day before chemo. I went to great harvest and they have a bulletin board I glanced at. Below the bulletin board was a poster that caught my eye. Sure enough, a classic thank you poster from the Salmon Clan. I had to tack up a few items that were hanging down covering it up so I could take this photo. I’m having a hard time pining this group down. I do believe they are sophomores in high school this year. A lot of these kids moved on from Pathfinder and didn’t stay through elementary school or middle school, so I’m not positive. If any of you positively ID these signatures and know for a fact what grade they are in let me know.

Late Monday night we got a text from Betty. She called 911 scared of a possible heart event (this story has a good ending, so no worries!). She had some wicked high blood pressure and pain in her left arm off and on all day. When she tried to go to bed the pain got worse and would not let up. Firefighters and Paramedics showed up. They decided she was safe for us to transport. We took her to the ER at Swedish Cherry Hill and she ended up getting admitted. Like the good doctor said, it takes just one or two tests to show there is a heart problem, but it could take a number of tests to prove there is not. Some of the tests just aren't available at 1 or 2 in the morning. We left her there, got to bed about 3 and up at 6 for chemo. 

Betty was going to go to chemo with me so Mike had to miss out on some meetings in order to go with me. I told him I was quite ok to go on my own, he could drop me off then I’d take a cab or shuttle up to Cherry Hill…but he’d have none of that. We were first in line for chemo and when I told them of our ER story they offered us a room with a bed. I asked if they might have a room with 2 beds, they gave us a room with a bed and a recliner. It was a relaxing quiet time with a few short naps for each of us. 

We finished up about 12:30, grabbed lunch for us and Betty and went up to Cherry Hill. When we arrived her room was empty as she was finishing up some tests. We started eating and she arrived shortly after. Gillian also showed up. Mike had to leave for a meeting in Renton and Gillian had to go to work so Betty and I were left with my activities planned for chemo. 

In cleaning out some crap in the basement I had found a shoe box (kind of a big shoe box) full of letters and notes from my college days and even a pile from notes passed in high school. Who moves a box like that to Seattle from Kansas City…oh that would be me!!

We were laughing so hard trying to figure out what we were talking about back in the day! We didn’t make it far into the pile what with the nurses and doctors, so we have plenty of laughing left to do soon!

The doctor showed up and proclaimed her to have a young and healthy heart!! Good news! So what was it…he couldn’t tell us. Probably stress related and possibly muscle or nerve stuff, too. But the good news, time to go home and find ways to reduce stress. We’ve been talking lately about how Betty works too much! We’d just talked about it the night before when Lizzy and June were over for dinner. I told Betty that was an angel talking to her and it was time to listen. She has some ideas for strategies to balance it all out. The good news…her heart is strong. But I knew that!! Every health care professional praised Betty for going to the ER because it is so difficult to diagnose heart events in women. So way to go Betty and let this be a wake up call to us all!

Another layer to this story is that Carrie had informed me that “my” firefighters, who had been my heroes on June 28 were on duty Monday. She knew I’d been wanting to make them cookies to thank them. On Sunday I had the energy to follow through. I made 2 batches of chocolate chip cookies…the real deal…and packed most of them up for the firefighters. On Monday as I was heading out on my errands my first stop was at the firehouse. I had  big box of cookies, a bag of little cutie oranges and a thank you note. I was hoping just to drop them off but the lovely paramedic lured me in and started asking me about my story. Well, you know I had to cry first. I can never quite keep from crying when I start my story. I don’t cry long, but I cry. Then another paramedic looked me up on the computer and found 2 of the officers that had come to my house were there on duty. They totally remembered me. One is a friend of Carrie’s so she new more information, but the other one just remembered me. He remembered we were talking about our trip to Ireland and he was planning a trip to Scandinavia. We had a nice chat and I thanked them for taking charge and helping Mike and Michael feel so much better in that scary situation. They were all so lovely!

Then about 11:30 pm there they were at Betty’s! So weird! The one guy said, I thought this address sounded familiar and then they mentioned how full their bellies were from the cookies! Later, while Betty was in the ER the 2 paramedics showed up after bringing another patient and came into her room for a visit.

“These are the people in your neighborhood!” and they are lovely.

So, I’m feeling pretty good this week after chemo and quite grateful for it as well.

Lots of love to you.

Janet

PS I do see all your comments, texts and emails. Please excuse if I do not respond…I am taking it all in and it is making me strong!

It feels like a weight has been lifted, it feels like a wall is coming down.

I am finally getting over the final side effects of the Xeloda, though I took my last pill on February, 23. This time instead of burning my gut it burnt the inside of my mouth and tongue. As Dr. Standish and her assistant Camille reminded me, the tongue and mouth are an extension of the gut. It is all part of the same system. I think that must be why as soon as I told Dr. Kaplan that my mouth was on fire, he said I was done with the Xeloda. Dr. Kaplan prescribed a cortisone rinse for my mouth. Dr. Standish prescribed a glutamine rinse. I’ve been rinsing with both, 3 times a day each. Finally in the last 2 days I feel like my tongue is calming down. I am quite sure if I’d continued with Xeloda it would have continued to burn my system. Tata forever Xeloda!!

I saw Dr. Standish and Camille last Monday. I love seeing them. They are the doctors of hope and understanding.  Dr. Standish gets it, she just gets cancer. She asked how I was doing (a sure way to get me to start crying!!) and then she described it so perfectly. She said people with cancer want to feel normal but they can’t. They want to act normal but they don’t feel it. There is a wall. People with cancer on one side and people without cancer on the other side. That is precisely how I feel. When I’ve described in the past the feelings of panic and how I just want to flee…this is why. I’m trying to act and feel normal and it isn’t working.

I asked Dr. Standish if she’d had cancer, because it was such an accurate description. She has not, but many in her family have died of cancer and she works with cancer patients everyday. I am sure these feelings are not true for everyone with cancer. But it has been true for me.

When Dr. Kaplan said that he was looking for remission I started to feel the wall come down.

Tomorrow I have chemo. Mike is going to work and missing chemo for the first time. Betty is coming with me and we’ll have a grand time. I have some entertaining activities planned for her…I’ll tell you all about it later this week.

I hope you all enjoyed the rain yesterday as much as I did. I knew Seattle needed some rain (and if you say that in March in Seattle you know it’s been a dry winter!!) but I didn’t really know how badly I needed that rain! Nothing like a good deluge to wash away the smog.

Have a lovely week.

Love to you all!

Janet

Such Good News!

It’s been a long day but I want to share our good news. We checked in at 10 this morning for the PET scan. The whole routine took until 12:30. Then Mike and I headed to S. Lake Union for lunch and to spend some time in the sunshine waiting for our appointment at 3:20. We, of course, arrived back at Swedish early and eager to hear the results.

It’s good news! The PET scan shows no active cancer on my stomach or pancreas…that is no cancer on my stomach or pancreas! I really can’t believe it! There is one spot on the liver that has active cancer. He could not tell me the size because he had not yet received the written report (I’ll call tomorrow for a copy). All the little satellite spots show no active cancer!! It is quite unbelievable. It is surreal in such a good way versus how surreal the initial diagnosis felt.

The plan is 2 more rounds of chemo (Epirubican and oxylaplatin…NO XELODA!) and then if it is not yet in remission (first time he ever said the R word!!!), then he wants to explore the possibility of radiation. I’ll get 4 weeks in-between these rounds of chemo because our trip to Kansas City gets right in the way of my 3 week schedule. So, I’ll get to go to Kansas City on the extra 4th week and hopefully be feeling pretty good!

Now the down side…Gastric cancer is one of the kinds of cancer that can come back. There is no specific way to keep it away, no drugs, no magic. I will go through some naturopathic IV treatments with Dr. Standish. But Dr. Kaplan says the best you can do is be healthy; eat healthy, exercise, limit alcohol and keep your weight down. So tonight, to celebrate our good news, Maggie and I are headed to pilates!

Thank you all for your love and support. I just can’t imagine going through all this without you and I know I would not be strong enough to beat this mother f-er on my own!! (pardon my french :-)

Enjoy this beautiful evening, take some deep breaths and be thankful for your health!

love to you all!

Janet

The day before the big PET scan…

Other than this incessant cough I’ve been feeling pretty good this week. Good energy, and pretty happy and hopeful. Yesterday I told Roz, “It feels great to feel good!” and it’s true. But then of course I over do it…shocking! So today I’m taking it easy. That is what I said in a text to Mike this morning. But this is what me taking it easy looks like the day before I have the biggest test since July to find out the most information about this cancer…I’m working on 3 loads of laundry, including sheets. While I was feeling the worst last week I slept in Michael’s room and referred to it as “sick bay”. He’s heading up tomorrow so I must wash the sick bay sheets. I may as well go through another one of his drawers finding more t-shirts he can get rid of. Oh and while I’m washing his sheets I’ll wash ours, and clean our room…dust, sweep, swiffer. And wash the blankets in the dog crate. And then there is emptying the dishwasher and general kitchen tidying and the day is young! I’m not done yet. But this is my therapy. It feels good to do these normal things and it feels even better to have them done. Tomorrow I can come home and celebrate in a clean house! Off to walk the doggie in a few minutes and a little more work in the kitchen…then I’ll take it easy…oh after I switch and fold the laundry!

Big news in our house! Maggie and a good friend from high school found a little 2 bedroom house to rent in Fremont. She is just 2 blocks away from the troll that terrified her as a little girl. Just 4 blocks from Jennifer. Jennifer said the troll is her protector, I like that! She is also just a few blocks from her cousin Lillie. And instead of an hour bus ride to work and an hour home she can ride her bike or take a short bus ride to work.  Betty and I moved to Seattle when we were 25 and our first Seattle home was in Fremont. Fremont is a great neighborhood and she will love it so much more than being tucked away in the depths of West Seattle. I'll be a little worried and sad for a while, but as sad as I am to see her move out, I’m even happier for her to get to move on!

Thank you all for your texts, emails, good wishes and prayers. I’ll be carrying all of that positive energy with me through tomorrow.

Love to you all

Janet

Scan results….another scan…

Yesterday I had an echocardiogram and a CT scan. Typically, but not every time, Dr. Kaplan will call us the evening of the scan and give us the good news. This has been the case for the last 3 scans. Last night there was no phone call. Dr. Kaplan had told us he doesn’t always get the results in time to make that call, so no call does not mean bad news, but…it was a little tricky last night waiting for the call, not getting it and then remaining positive. But, we did ok.

This morning the first thing he said was that he purposefully didn’t call because the scan was inconclusive. He said there is definitely no growth, so that is the big good news. There is still no detectable cancer in the stomach or pancreas. It’s the liver that is giving them pause. He said there was great debate about my liver. Again, no growth detected but they cannot tell if the tumors have shrunk and they won’t give a definitive number of tumors on the liver. So, he has ordered a PET scan. My insurance will take about 4-5 days to approve this so I am scheduled for a PET scan next Thursday. We’ll meet with Dr. Kaplan later that same day to hear the results.

The down side of this is having to wait. But there are more upsides. First of all I really needed a break from chemo and there is no treatment scheduled until after the results of the PET scan. Yesterday was the first day I started feeling ok since my last chemo almost 3 weeks ago. Yesterday, all of a sudden it was like a curtain lifted and I began to realize just how bad I had been feeling. Last night I was finally able to go to pilates class with Maggie which I’ve been trying to get to for months! Overall I’d been lacking energy and fighting a cold and sore throat. I’ve been struggling with a very sore mouth, a blood blister on the inside of my cheek and my tongue has been on fire. I called Dr. Standish and have been rinsing with glutamine. Today Dr. Kaplan gave me liquid dexamethasone to swish. I do believe the Xeloda targeted my mouth this time instead of my hands, feet and gut. Dr. Kaplan seemed to agree. Specifically, he said, “You and Xeloda will not cross paths again.”  You better believe it!!

Another upside is that the PET scan will give us so much more detail. I think there will be definitive information about cancer (or lack of it) in my stomach and pancreas. I think they’ll be able to tell if  the cancer in the liver has shrunk enough to be removed surgically. It will be worth the wait and in the meantime, if I can kick this cold, I’ll have a week to feel good! Woo Hoo!!

We were so focused on the PET scan and liver that Dr. Kaplan failed to mention and we failed to ask about the echocardiogram. I’m assuming my heart is just fine or he would have mentioned it. We’ll find out for sure next week.

On a different note….

I’m just so very tired of hats and have never been comfortable going out bareheaded. For some unknown reason, I just thought I would not wear and did not need a wig. I think it goes along with me never dying my hair and going without makeup. I just am who I am and there you have it. I decided I should at least go look at wigs, as I am so very tired of hats! Betty set it all up for me and on Wednesday Betty, Lindy and I went to a spot in Greenwood. The very first wig I put on looked a bit like my old hair (and by old hair, I mean young hair) and it made me cry. Have you ever gotten something you didn’t know you needed until you got it?  Well, I needed a wig. Today Mike and I picked it up. Between me finally feeling better and then HAVING HAIR I felt like a million bucks! 

So, I’m going to have a good week and wear my hair when it suits me!

I hope you have a good week, too!

Lots of love and good hair days to you!

Janet