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