Good day my friends.

Today is day 3 of my cycle and I’ve been pancaked in Maggie’s bed listening to podcasts, meditating or just being. It is really about the most I was able to do all afternoon. But I missed my high energy day, yesterday, to post and I want to let you know why I was too busy to sit at this machine.

We had a turn of events here, I call this episode:

Mike’s Left Foot

Mike has had foot trouble for years. I will spare you the details and let him lay them out in his upcoming blog, or maybe he’ll do a podcast, not sure. But Saturday his second toe on his left foot (a really long toe, as long as my pinky finger, actually, I’ve compared them) was really heating up and bothering him. Red, puffy, sore, angry and sure enough at one point up crept that little red line of infection. OK, time to go. We called the doctor in our family, Carrie, who is not really a doctor but a medic for the Seattle Fire Department and told her he was going to urgent care. As Carrie is known to do she said, wait, let me see it. She came over quickly (she is conveniently living a block or so from us at this time) and said skip urgent care, go to the ER. So Mike took a solo trip to Swedish ER on Saturday evening, maybe 6 or 7 pm. It was not busy and for an ER visit not too bad. They gave him antibiotics and said if it gets worse come back and go see your doc on Monday.

It seemed to get better, the line was receding, that’s good. But on Monday Seattle got slammed with snow, 6-8 inches in our hilly West Seattle and when Mike called the doc in the morning, no docs had shown up! We hemmed and hawed and then suddenly it was clear to Mike that it was getting worse. Carrie came down again and off they went to the ER. She would make sure they did it right this time! So the ER was not so busy and they got into a room pretty quickly. They decided they needed to do a culture (Carrie was frustrated they had not done that Saturday) and start IV antibiotics. Over the course of the day they decided he needed to be admitted to continue the IV and the podiatrist that came in thought he might need some tissue removed. 

The ER was not busy but the hospital was slammed. There was no room in the inn. Mike was in the little ER room from maybe 10 or 11 in the morning until 8 at night! He felt lucky to have a room, he said there were others lined up in the hall! Luckily??? he had an unknown infection that makes him a bit of a biohazard so he needed to be isolated. 

Everyone agreed that the ER, the hospital in general was no place for me with my blood counts fluctuating. So we called and texted, a lot! The kids showed up around 5 or 6 and stuck with him until they finally had a room for him at Swedish Orthopedics Hospital, just a few elevators and sky bridges away. He got into his room about 9 I think…finally! All day stuck in those tiny ER rooms! Yikes! Then he found himself in one of the newer wings of the Swedish massive maze with a big room, a nice TV, a good view! Worth the wait, I’d say.

They’d taken an x-ray in the ER but in the middle of the night Mike got swooped back through those sky bridges and mazes for an MRI. On Tuesday the podiatrist, with new information and a little probing of the toe (gonna spare you the details here…you are welcome!), determined the infection had crept into the bone, but just the tip of the bone and they would need to amputate down to at least the knuckle. Dang! And I’m stuck at home in chemo land! 

On Tuesday morning Betty came up and gave me my booster shot. She watched a youtube video and Carrie gave her some tips (Carrie was working or would have happily given me my shot) and Betty did it like a champ! Yay for Nurse Betty! (And Terri, thank you for your offer, but we decided we could do it in house, but I so appreciate your offer!)

So on Wednesday, my blood count was good, I had an early appointment and all went quickly and smoothly and Dr. K cleared me to go see Mike. So after chemo I walked what seemed like 1/2 mile through the maze that is Swedish and found him with his mom and sister Lisa. It was great to be able to visit. Surgery was scheduled for 6:00 pm. I had to go home to take care of some business and so I left about 2:00. Michael came to pick me up, I was not quite ready and it took me awhile. We were really hoping to see him in pre-op but I’ll tell you, traffic Wednesday evening, in the dark, in the rain, it was just awful! But, it seems traffic from Ballard, where the surgeon was coming from was even worse! So we made it in time and got to visit with Mike in pre-op. He was in good spirits. We met podiatrist/surgeon 1, and the anesthesiologist. They were friendly, easy to talk to and eased our worries. Podiatrist/surgeon 2 was seriously stuck in traffic. 

They shooed Michael and me out to get Mike into surgery. Later we found out he came back out from the surgery room, cause of, you guessed it, traffic! Mike finally went under for his surgery about 7:00 and he said he woke in recovery at 7:25. Now that is some good, efficient surgery! He was up in his room with Michael, Maggie and I waiting by 8:00, and he was looking great! They used some kind of block to keep his foot pain free and gave him propofol which in my experience, and with Mike, too, you go out quick and come back quickly. Perfect. His foot was wrapped up well and he was able to use a walker with about 75% weight bearing. That’s pretty good! We stayed a bit too late (I was on my steroid high) and finally went home by 10:00.

Thursday morning, yesterday, is my day 2 when I have all that energy and get so much done. I started doing a few things around here with plans to go up to Mike around lunch time. About 9:30 he called and said he would be released in an hour or two! Yikes! I did what I had to do to get ready to go and headed up as soon as I could. When I got there the nurse was going over the last  of the paper work with him. I asked if we took the walker home and he held up his cute little shoe/boot and he is allowed to walk with as much weight bearing as he feels comfortable with. Wow! They don’t mess around! 

Mike is doing great now! He is spending most of the time on the couch with his foot raised, and that is what he should be doing. He just took his first pain pill of the day. So, he is clearly healing. He is going to a follow-up visit and even though it is day 4 for me, I’m going to bundle up somehow and go along. We’re a team, for better or worse.

This will be a lay low weekend for sure. A sick game of survival really, The kids will be around to support us and we have some friends lined up next week to bring us food.  So, survive, we will because of all the love and support we get from family and friends.

Sending love and peace to you all.
Janet

Today's Steroid Induced Babble

I really wanted to rock the bald this time. I see those women and they just look so powerful. Well, first of all, it’s just too damn cold for that, and I run cold anyway! But what else is true is that it is pretty patchy right now. IT (my head) is completely bald right now in the spots where hair fell out. So there are patches of bald but mostly nubs. Those little boy, irresistible shaved head nubs that I used to rub right up! Those faces popped out so beautifully when their heads were shaved. I hope their little heads were not as sensitive as mine. It feels like the tough side of the velcro and is very sensitive. Shirts on and off, hats on and off, I have to brace myself each time. It’s getting a little better everyday and I’m hoping at some point the nubs and the spots evens out. But until then…hats for me! Plus, most of those girls who rock the bald, well, let me just say, they are younger than me! I’ll leave it at that.

I went in to Swedish on Wednesday for my shot of Granix to boost my white blood count. It worked! So Thursday I had Treatment 1, Round 2. I had a later appointment than I like to have, starting at 11:15. By then you can count on a back up. I had taxol and cyramza which cannot be given simultaneously and each take an hour. So between the 3 stops we have to make (blood draw, the good doctor, then treatment) with back ups all around, we had a 6 1/2 hour day! Yikes! I was planning on going solo but Mike insisted and I am grateful! It was a long day. Once again, the nurses there…I cannot say enough good about them. When we were walking out, Mike commented to me, and this is after 6 1/2 hours, he said, “The prerequisite to work here is to be a nice person.” He is right. They are positive and just the right amount of chatty and easily available and knowledgeable and so very, very kind.

I got 50 mg infused Benadryl which helped me relax a while during chemo. It was lovely. I closed my eyes and visualized the healing going on inside of me. I listened to a Tara Brach guided meditation and it was perfect. But I had a few more hours to go. Mike caught up on Vikings and I like to read all the New Yorker magazines I can find. I found a recent one and read an article about Wall Street that just pissed me off! Then I had a political rampage on Facebook. Couldn’t stop myself. I’m getting chemo, I can say whatever the hell I want…right!

Before the Benadryl I get an infused steroid. Puppy uppers and doggie downers I call the combo, remember the old SNL sketch? On treatment day, I know the steroids keep me up late so I just take my whole game into Maggie’s room. I have my diffuser, my kindle (new for me…loving it), my iPad, my phone and just go with it. Last night I planned to watch a movie but ended up breaking my hard and fast no FB in bed rule and continued my political reading and sharing until maybe midnight! Yikes! Then I was awake at 5:00am.  After trying to go back to sleep and failing I listened to a great podcast, "On Being" with Krista Tippett. This one was an interview with John Lewis. It was fabulous and I learned details about him that I really didn’t know. I finally got up at 7:00 starving and had a little breakfast went back to bed and back to FB! Dang, I binged in the last 24 hours!! But this time I also made phone calls. Called 3 Senators including John McCain. It’s kinda cool to call Senators. I like this. I emailed him too, and told him about the magic that happens when all different kinds of kids with differing abilities are in the same classroom…thinking of course of Ian and Mason and Aliza and Aiden, especially.  But there are many, many examples of magic in my public school career. After I pulled myself off FB I haven’t checked politics again today, so I have no idea if I was too late. I hope not!

I’m trying every day to get in some exercise. Something. Everyday. Move. Breathe. Stretch. Yesterday with a beautiful morning and a late chemo Wilson and I got in a 45 minute walk. I saw an eagle fly overhead toward the end of our walk. Always a good omen!  Today with the rain and steroids I did a long stretch on the treadmill and to break my political obsession I listened to a fabulous This American Life all about coincidences. It was completely compelling and enjoyable and made my treadmill time fly by. I came upstairs and did my weights and pilates and then a 20 minute yoga session with youtube. Steroids. I get it! Tomorrow I get to see Dr. Standish but other than that this weekend I will crash. I will try to at least to not lay in the same place all day long. I will stretch at least a bit. But I’ve learned this cycle well! Day 3 and 4 are my down days, and that is what I’ll be doing…I’ll be down, physically at least. And I don’t really mind having a blue day. Its like a good rainy day, part of the balance.

From Tara Brach I will share this mindfulness message:

“Rest your mind in what is.”

That is one of my goals. Reflecting what is real, not letting my mind get ahead of today, now. Now I feel good. The rain is peaceful. I am healing.

Sending you love 

Thankful for your love and support

Always and Now

Janet

Head and Feet

I can no longer brush this off as coincidence! Clearly, Sock Angels are real! It started out slowly, a couple pair in a cute bag, a couple more pair a few days later. One pair, one day. Three pair another day. Hmmmmm, socks? Well, people want to reach out and do something. Socks are great, comforting. But then they kept coming. Most of them were with a signed card and a few of them were anonymous. For the longest time I thought it was a funny coincidence, and I would say to a friend…Have I told you about my socks? Then, duh, I realized all the ones that were signed are showing up from my last little group of Salmon families, now big ole 2nd graders! Now I know for certain, that Sock Angels are real! I love the thought of one of my Sock Angels getting ahold of the other Sock Angels and hatching this plan. I have a big smile on my face thinking about this whole thing. These supportive families, their connections to each other and their care for me. Every pair of socks is an expression of love and I feel it! All the way down to my toes!! And for the record, I think there are 16-19 pair…I’m wearing them so they are not all clean at the same time to count! Thank you, my Sock Angels! I love you, too!

Socks, to hats…the hats are coming back out. This time it happened literally overnight and is so very intense. If I remember correctly in 2014 my hair started falling out slowly. I think I got away with wearing hats to hold my hair in for at least a week or so. Not this time. My hair is falling out at a ridiculous rate. I picture a cartoon character with hair that puffs up and then shoots out. That is how this feels. On Wednesday I had a hair or two fall, unusual for me. On Thursday I ran my hand through my hair and about 10 strands came along. I repeated this a few times on Thursday and kept hats on my head just to save our house from being covered with hair. Friday was awful. Since then there is no limit to the number of hairs I can manage to collect as I run my fingers, even gently through my hair. I feel like, if given enough time, I could easily get all the hair off my head, and I had a lot of hair!! When I change hats I use a sticky roller hair collector to try and empty out the one hat, then put on a new hat and I have to collect the hair off my clothes as so much falls out just in that simple process. Tomorrow Betty is going to take me to the Cancer Care Alliance in South Lake Union. They have a lovely shop next door, Shine. They sell a variety of things that might help support people fighting cancer and they also have a hair salon run by volunteers to shave heads. No cost, they are kind and generous people. I really don’t want to pull out all of my hair. I need to get it shaved. I was in a deep dark funk the better part of yesterday. There is something about the hair that is just plain sad. I have such an arc of emotions about the cancer itself, a huge range and strategies for being with and holding and handling those emotions. But when it comes to my hair, it just makes me sad and it makes me cry and I think that is a really good thing because I do not think I cry enough these days. I might be catching up on that deficit during these final days with hair.

Pain and Love

I’m not sure if I’ve mentioned that over the course of a couple of weeks, having not had any acid reflux for months, I finally got the go ahead from Dr. Kaplan to stop taking the Zantac one week and then I was able to stop the sucralfate the next week. It always feels like a small victory to go off any of the meds. I have not had “the pain” since before the hospital visit in September. So it made sense to let those meds go. Unfortunately in less than a week some pain started showing up. It started out in my ribs or along the side of my trunk and I did not associate it to the ulcer or the acid reflux. But within a couple of days it was spot on where my old pain was, right along my esophagus. I was so disappointed. So Wednesday morning, waking with some of the pain, I took a Zantac to see if it helped. Yes, it did. That afternoon the pain was pretty intense, I called the doc and got back on sucralfate as well. The pains have subsided. Here are just a few of the unanswerable questions: Is it the coil? Is it the old ulcer where the coil was living? Is it a new ulcer? Is it the taxol or the cyramza causing my gut some trouble? Was I on those meds too long and have an imbalance in my gut that needed support transitioning off the meds (a question for Dr. Standish!).  Right now I have to just leave those questions unanswered. The fact is the meds are treating it, relieving the pain, letting the gut heal…again…I see Dr. Standish this Saturday and I know she’ll have some opinions about the next time I get to try and go off those meds.

This week, I go in for my shot on Wednesday to boost my white blood count. I go in for my infusion on Thursday, this will be my third taxol and 2nd cyramza. Then I’ll lay my bald head down to rest!

Recently there has been a great deal of illness at Michael and Maggie’s school, so they have been staying  away from us for a while. On Friday the neighbors were having their goodbye pizza party and the kids wanted to see them to say goodbye. Neither of them were feeling sick, so they washed their hands a lot and wore masks when they were in the house. We had a great evening. I stayed away from the party, and hunkered down in our house, but you know I managed to get a little pizza out of the deal! We had time to just hang out and have a great visit with the kids.

Thank you Sock Angels and everyone else who is sending us your prayers and positive energy. We are soaking it up.

Love,

Janet

Change of Schedule

When I saw Dr. Kaplan this morning, after my blood draw, I learned that my white blood count was just a little too low for me to have chemo today. SURPRISE! Now this becomes my week off. We just skip this infusion and next week start with Week 2 Round 1.

My new insurance won’t cover the better, longer lasting blood boosting shot, Neulasta, that I used to get. (I’m seeing Neulasta adds on TV and just have to wonder how much they jacked the price to cover those adds???? Just sayin’) As I was fuming, my nurse, Angie, who is absolutely lovely, assured me that overall she is happy with Premera, this is one item that is tricky. OK, one tricky item, I’m not gonna get all huffy and go ballistic; there are other options.

That started with a shot of Grantix right into the wibbly bits of my belly. I’ll go in a day before treatment next week to get another shot so that I’ll be nice and strong to take on the chemo. I’m hoping to avoid having to give myself a daily shot at home, I really, really do not want to do that!  I asked my comedian doctor about guidelines for my health, he advised me not to visit any leprosy centers. But, seriously, I’m taking it easy, keeping my diffuser running, drinking fluids and sending anyone who walks into the house directly to wash their hands. I’ve sent out a container of wipes to the car with Mike so he can wipe down the steering wheel and phone every day. Poor Mike, I’m watching The Crown on Netflix and trying not to pick up any habits from Her Majesty! Also, now I want to stop using the word lovely, they use it so much in the 1960’s in England. I am aware I used it in the last paragraph.  An old habit, bother!

So I was set free a little early today on my week off and “celebrated” by visiting two of the yummiest places in West Seattle. First I picked up a pear danish at Bakery Nouveau. The twice baked chocolate croissant is my usual favorite, but I’m off chocolate, not to my liking these days. I took it to go and will make it last at least 2 or 3 days. Then, in broad daylight, just about noon, ordered a peppermint malt at Husky Deli.  Their Chocolate Orange is my usual Husky choice, but again…chocolate. I got a little ice cream for my good neighbor Lizzie, too! I’ll make this malt last days, as well. Just a few sips did me in today.

Food has been tricky. My tummy is grumbly, I’m eating soup and well cooked food. I make myself have a salad on good days for many reasons but many whole grain foods are just too tricky for my tummy. I eat bits across the day with the goal of good protein and healthy food. And, yes, some treats as well!

Lots of unnecessary babble, but I have to take steroids the morning of my chemo, at home, so I did, and I think I have just a little extra energy. Thanks for hanging in there with me!

With Love and Strength

Janet

Chemo is a brutal slog.

This is very different than a couple years ago when I was on EOX or even when I was just on EO. Different side effects completely. But there is something that is the same. There is this underlying mechanical feeling I get, like I have some sort of machinery operating inside of me. On the EO it sometimes felt very jarring. It effected my joints, my jaw, my head and they felt cramped and creaky. I also felt an intermittent buzzing in my body, like waves of electricity. There are times when I’m cold that I can still feel the feeling inside my face and jaw. It’s so weird.

This time it’s different and I feel it in my trunk mostly. Sometimes it is buzzing, sometimes it is jabbing, it is definitely grumbly, but there is something about it that feels mechanical. Weird. Certain days I’m definitely nauseous but it is quite manageable with mild soup or broth and saltines. I also find myself sucking on hard candies or chewing gum. It’s manageable. 

Our first nurse spoke the truth when she said that day 3 and day 4 would be the worst days in the cycle. That has been true after each of the two treatments I’ve had. Day 3 was Sunday and I don’t really remember if I did anything that day but I know that on Monday I did not. I made my way around the house finding different cozy spots for variety. I listened to Tara Brach. I started watching The Crown on Netflix (love it!!). I’m listening to chapters from an audiobook I’ve already heard, so I don’t have to really listen, I can just relax and let my brain rest.

Now it is day 6 and I feel so much better. Took the pup for a 40 minute stroll on the flat lands of our neighborhood and we were both quite satisfied with that walk. It felt good to feel good enough to enjoy that time. My blood count is low so I am staying away from most people. The kids classroom has a terrible flu going around, so we did not get together Monday.  I would not have been good for anything even if they didn’t have all those germs. I find myself texting them randomly with more and more things to “wipe down” on a daily basis, how to sanitize the little bits and pieces in their classroom, and what supplements they should take to stay healthy! I remember how awful it was to be sick during chemo last time and I have no intention or repeating that chapter! And, of course, I just don’t want them to get sick for their own sakes!

I did get a visit in with Lizzie and June for a bit this afternoon. It was like a salve to do a few puzzles and play with June and visit with Lizzie. They are getting ready to leave for an extended period of time, renting their house out, even! So, I'm wanting to spend parts of my good days with a little 3 year old energy. But, I have to admit, she wore me out, even after just a short visit with her momma here the whole time. I'm not myself, that is proof!

I head back in for the third infusion tomorrow, a day early because I hope to make it to a semi-private  MELT class with my friend Roz on Friday…fingers crossed…day 2 isn’t usually too bad. The description of the class sounds lovely, though I’ve reserved the right to nap! That will put Monday on day 5, a day I can cook for the family, which really feeds my soul. 

Tomorrow I get the taxol and ceramza. I can’t yet tell the differences in how I feel when I have just the taxol and when I have both. I’ll probably notice it more this time round. 

I have to be just a little political here. I am in the camp that will not stay quiet and legitimize this man. If he had selected good people for his cabinet, if he was truth telling, if he was working to unite,  if he was signing actions to help the people of this country, well I would try to give the guy a chance. But his selfish agenda is quite clear to anyone willing to look. I want to look away and hope for the best and most of my life that has been my political strategy. But this is so blatant and so wrong and there is so much damage he can inflict. I will not turn this into a political blog but I’m using my cancer card here in hopes if you are on the fence or if you have been ignoring the vitriolic politics you will read this and think about it a little more. My goal is to make calls, send letters and if I’m well enough to join in the action rather than just share and like on FB. I’ll continue to do that a bit, but that is not the action needed to move this mountain. Thank you. And thank you for the pics from Saturday. It really was an amazing day. It really is a powerful movement. 

We are all hanging in here; hoping for the best possible outcome, or at least a really good outcome. 

Again, I have to thank you all for your help in holding up this boat, as I’ve said before, hope is heavy, messy and cumbersome at times. You all help ease that burden.

Love and Light

Janet

This Rain Is Perfect
I needed this rain.
It is a nice steady hard rain.

Just a quick note to let you all know I am feeling so much better already. I have more room in my chest to take a bigger breath. My liver still feels enlarged, but maybe just a little less. I am low energy, tired, but okay. I feel funky, punky and weird, but that is okay, too!

To feel better just 5 days into my first cycle is enough to fill me with a good deal of hope. And hope is like a really good drug, only better!

Thank you for your outpouring of support.
With love from all of us.
Janet

Greetings my friends.

We have been up and down and down and down and up again over the last week or so.

The short story; I was in despair, now I feel better. Here’s the longer version…

I received the scan report on my computer on Thursday morning. I had so much to do on Thursday that I just ignored it for the course of the day. I could not get derailed, I was on a mission. Mike was not going to be home until close to 8pm but by 5 or so, with my projects wrapped up, I opened the scan. I’m sure I blanched. I went absolutely numb. It was not good.

More and bigger tumors in my lungs and liver.

A tumor on one kidney.

Some growth on my pancreas.

Enlarging lymph nodes.

This was way more than I was ready to read.

The truth is I could feel all of this in my body. Over the last three weeks I have felt a swift decline in my health and energy. I could feel my lungs and liver expanding. I had increasing shortness of breath. I wanted all of that to be caused by anxiety and not cancer, but it was the cancer, seeming to have switched to turbo growth mode. I swear, the week before Christmas I felt as strong and healthy as I have in years. I’d been sprinting up our basement stairs, because I could, now I couldn’t walk them without being winded. It happened that fast. I have no idea how that happened. 

Thursday night was about as low as I’ve gotten. Betty was the first one up to bat. We cried and I told her things I needed to say. It was cathartic and loving but we were so sad. By the time Mike got home I was back to numb. I couldn’t even let myself feel my feelings. I felt like a reporter, removed from the emotion. That didn’t last long.

I’m so glad I did not get that report any sooner because we were off to see Dr. Kaplan Friday morning. And we really needed to talk to the doctor. I told him all the things I just told you, about the swift change in my vitality and energy, the turbo growth, how I thought I could literally feel my tumors on my liver. He poked around and said he could not feel individual tumors, but yes, everything was inflamed and angry. My back has been sore lately and that is from the tumors in my lungs and liver causing pressure against the nerves in my back. But he had a mantra going, “Let’s go after it. Let’s get to it. Let’s get it out of there.” He also said, sometimes the fastest growing tumors respond the quickest to the chemo. I was so grateful and relieved when he said we would do just 2 three week sessions, then get a scan. This stuff grew fast and I want him to keep an eye on it. In the middle of the night I thought he was going to see how much the tumors had grown within just a week and throw me in the hospital for…well I don’t know what! But I packed a hospital bag just in case. No hospital for me this time (thank all that is good).

We headed to the infusion center and Lindsay, our nurse was so very, very kind, thoughtful and instructional. They always start with some sodium to get the line ready, then I had a good dose of steroids, followed by a lovely dose of benadryl which made me feel nice and loopy for about 5 minutes. Next came the cyramza and finally the taxol. Early in the process Lindsay brought us a printout on each drug and talked us through in a detailed way, how they work, what I need to do to take care of myself and what symptoms to watch for and which ones need what action. She was very thorough and detailed. So helpful!

Cyramza is somewhat new. It is a biotherapy. It is a monoclonal antibody, Vascular Endothelial Growth Factor Receptor 2 Inhibitor. Well, that clears that up, right?

This is how she explained it to us. If you considered your own immune system native, maybe Americans, calling in cyramza is like calling in foreign troops to help. I called it the French Foreign Legion. She said, sure! Where the keytruda went around showing my immune system where the cancer was hiding (or in my case did not do this????) cyramza is bringing in more troops for the fight. It does more than that, though. I think it also blocks blood flow to the cancer cells and knows to go after cancer cells (at least that is what my notes say, not sure I entirely understand this one yet).

Taxol, like I said before, has been around for awhile. It’s chemo. They watch you very carefully on your first go at taxol, not because of the taxol but because of the base that it is mixed in. Some people have allergic reactions to the base and they need to stop the infusion immediately. If that is the case, the docs then go grovel to the insurance companies to get the more expensive version of the drug in a different base. I did fine. No reaction. Taxol can cause mouth sores and one strategy is to eat chipped ice or popsicles during the infusion to keep those pores closed off and less vulnerable to the chemo. I am not a fan of ice chips or popsicles, but they had yummy coconut and lime, I had 2 lime and one coconut during the infusion. More popsicles than I’ve had in the last 20 years!!

Lindsay talked to us about my immune system which will be more vulnerable. She said day 3 and day 4 of my week will be my most vulnerable points. If I go out those days I should wear a mask. I should be avoiding sick people. That is really difficult this time of year! I think I’m just going to hunker down for a while. It’s cold. I’m okay with that plan.

The whole process, from blood draw, through the visit with Dr. Kaplan and then the infusion took us 5 hours! But in the end, I really felt ok going home. I don’t have that horrible reaction to anything cold like my old chemo created. I wasn’t feeling buzzed or electric like I used to after chemo. I felt ok. Okay. So far so good. 

Saturday afternoon we had plans for the kids to come over for the Seahawks game. We ended up recording the game and starting it a little late because we had to get them up to speed with my health news. Not my favorite thing to do…tell my kids how much my cancer has grown. I was thorough, honest and up front but did not dance around in the specific numbers. The general story is enough details. It was difficult to say, we were sad, but the truth is by that time, noon on Saturday, less than 24 hours since my infusion, I was already feeling better. I could take a bigger breathe. I felt less pressure in my lungs and liver. I swear. It is working that quickly. On Thursday evening I was in despair. Now Saturday afternoon and I’m already feeling so much better. Breathe in, breathe out. Repeat, probably more slowly.

I have had one of those giant kabocha squashes in the kitchen (the yummiest of the winter squashes in my opinion) for a couple of weeks and I had my mind set on making it into my favorite chili for the game. So on Saturday morning I did! I can’t believe I felt good enough to tackle that squash! Those things are a bear!  I made a large batch of chili starter then divided it in 2 parts: one part vegetarian with beans, one part meat and no beans for the whole 30. Or you could add a little of each to your bowl…all needs met! It worked! One squash with everyone happy, and indeed that kabocha squash is king.

In the middle of chili fixing Lizzie and Vince and June came over to visit. I was really wanting a good dose of June before I got too far into this chemo or she gets sick. So they stayed for a bit and then Lizzie and Vince went home and June stayed and made herself at home. I was making chili, Mike was working on the bathroom sink and she was happy coloring on the chalk wall and playing go to sleep and wake up about 14 times! That girl gets some of the credit for healing my heart! 

 All in all, day one after chemo was a good day. I had small bits of nausea and some general funky feeling, but not bad!  Unfortunately the Seahawks did not pick up their end of the bargain. Oh well, Mariners are just around the corner (I am not a sports fan, I just live among them and know how to fake it and survive!). 

Now it is Sunday morning and I continue to feel better. I’ve been up and down the stairs a couple of times and it’s easier than it was last week. I feel less pressure in my body. I can breathe easier. I'm just going to take it easy today. No June, no cooking projects, today is a breathing day.

I have other health news, good news, that got overshadowed by this cancer. Last Friday I had my annual echocardiogram and appointment with Dr. Mignone. I started with the echo and had a lovely technician named Jonathan. He was quite dear. I’d had my scan by then but not seen the report. I knew there was more cancer but had no details. So I told him I understand that they are restricted in what they can say, but if he saw any tumors and could point them out to me, I’d really appreciate it. He was also going to be looking at blood flow in my liver, so I explained about the coils and said I would love to see those!

When he was scanning my liver he told my what a healthy liver would look like on the screen and showed me the things that told him there was trouble on my liver. He said, of course normally he would notify the doctor for follow up, but he knew he wasn’t telling me anything I didn’t know. I really appreciated that. We did not see the coils…grrr…those coils!!!

When I saw Dr. Mignone after the scan he was able to give me the good news about my heart. When I first had heart failure my ejection fraction (how hard a heart can squeeze) was down to 35% which put me in the advanced heart failure category (everyone agrees heart failure is a terrible label for this condition!!). After my cardio rehab and some time my EF moved up to 45%. Low normal is 50% so 45% is good! Normal is from 50% to maybe 75 or 80, not sure. But the good news is last week my EF was at 50%! My heart has healed! That felt good to hear. He informed me that the taxol is not necessarily hard on the heart and he (like most) are new to cyramza but he’ll be keeping an eye on me. He ordered some kind of test to be added to my blood draw to watch some aspect of my heart. He took me off of one of my BP medications! That feels like progress, people! One less pill to pop each day is a big thing! Having a normal heart squeeze, even low normal, that is amazing!

It is obvious this has been one full week for us. But along the way I have felt you all reaching out to us in different ways, sending love and support. We are receiving it and we thank you.

We are back on the hope-wagon and keep working towards health.

A shout out to anyone going to any of the Women’s Marches on Saturday. We were planning to go and with my immune system and everything else, we’re going to have to miss it. I would love to see pictures from any place in the country. And at some point along your march put me in your heart and carry me with you just a little while. I’ll be sending my heart out to you.

Thank you,

We love you.

We hold you in our hearts.

Janet