Don’t you love summer? Man, I sure do. It’s one of my favorite seasons, in second place just after spring.
Tomorrow is Tuesday and I will have my weekly support group meeting and outpatient physical therapy strengthening program. These activities keep me busy! Especially Tuesdays; my Tuesdays always feel over scheduled.
Gosh, it’s been a couple weeks now but I did have a CAT scan and I have more good news. Yay! One of the liver tumors remained unchanged and the other shrank! My oncologist consulted with a radiologist and they determined that the tumors actually may have been smaller than initially measured. Apparently there could be a difference in the size of the tumor mass depending on if the tumor is measured from the outside wall or from the inside line. One of the tumors is between the left and right lobes of the liver, so it’s against a ligament or tendon or something that makes it difficult to measure. My oncologist was explaining all this to me and all I could think of was “it’s working, it’s working! It’s working! I’m beating the cancer. I’m going to make it!” This was my mantra last summer and I think I’ll keep it, for now.
I’ve started a memoir writing class through The Loft and I’m finding it to be very fruitful. Tell your friends, at some point in the future there will be a memoir or essay sharing a story from a survivor (that’s me) designed to help others dealing with freaking cancer.
I wish I could say I did something wild and amazing for the summer solstice celebration. I think it was an ordinary Saturday at home but I did go up to the top floor to watch the sunset. It was beautiful! There are windows facing west in the elevator lobbies of each floor and I decided to take advantage of that and enjoy the view. I’ll admit that it was my first time going up to the top floor to watch the sunset. But it won’t be my last!
Life is starting up at its new normal. We are fully vaccinated and have had our re-entry into socialization. I’m looking for a zoom class, if you hear of one, about how to talk to people in person and make eye contact. Bad joke? Forgive me. I have to say it is really nice to not need to wear a mask. Especially now that it’s summer and it’s been hot! Not as hot as Canada, though. Now those are some words I never thought I’d say.
Well that’s it for now but stay tuned and feel free to reach out, as I’d love to hear what’s going on in your world. Phone conversations or face-to-face meetings are now being accepted. Talk to my scheduler, that’s me.
May you be happy healthy and well. Blessings,
Sitting in a waiting room
People are coming and going
And I am not alone
My own spoken friends wait with me
Hunger – breakfast
A small container of nuts
Becomes my delight.
I eat each nut
One by one
Sneaking it under my mask
Into my mouth
And delight in the saltiness
Of each nut.
I haven’t “dined” with others in 14 months
And now I am living it up!
I was just checking out my blog and realize that April got away from me and I did not write a blog post! Its certainly not for lack of writing; I am in a writing group that meets weekly and have a small writing group that meets every other week.
Monday, May 3 was scan day. I had a CT scan of the chest, abdomen and pelvis with contrast. CT scan showed some growth on the two liver tumors that we have been watching. It’s minor, it grew 5 mm to 7 mm but it’s still concerning. My oncologist advised that we will now do another CT scan six weeks from now instead of in three months. I was a bit shaken by the news but I am trying to be a little less shaken and I’m planning to stay the course with my fitness regimen.
MRI of the brain was unremarkable, yay! Yes, there is still a brain in my head! I did get the doctor to admit that it is quite possible that because my cancer is HER2 positive it could spread to the brain even though I am currently receiving treatment. I don’t know that I realized this. I don’t think I fully understood how this cancer could work, nor do I fully understand it now. Anyway, repeat of the brain MRI could be in six months or in a year or if I develop headaches that are new. Something to watch for. It’s good to be informed.
I think I have now had 40 chemo treatment infusions. It’s not a number I thought I would be proud of but I’m glad to still be here.
Spring is upon us, and driving around toast week I noticed that the tulips were not quite open but appeared to be opening soon.
It has now been a month since Freddy and I got our second vaccination shot. Yay! I finally got to see my mom two weeks ago along with my sister and her beautiful family. Each visit was an absolute delight. I sat on the couch and said to Jenn and Gabe, “It is so nice to see you!” At least a few times. It was such a delight to finally see my mom too!
I’m off for my marathon day. I have pelvic floor therapy at 11 AM, my weekly support group that meets at 1:00 PM and I’m starting an outpatient physical therapy rehab program Tuesdays and Thursdays at 4:00 PM. Man, this is going to keep me busy! So much for languishing, I guess it’s time to start thriving.
Hope you are happy healthy and well (and vaccinated)!
Sent from my iPhone
When I went in for chemotherapy on March 4, 2021, the oncologist confirmed my suspicions about continuing treatment for (ahem!) three weeks ongoing for the rest of my life. Medical advances are still be made, so this is subject to change. This information was disheartening (I sunk back into depression) but it has also helped me to manage my expectations. Does anyone want to do this for me? I’m now taking volunteers. I laugh at this question knowing full well this is my “cross to bear” if you will. But I’m still hopeful. The medical advancements made this far are quite amazing and I’m grateful to still be here, sans breast cancer mass and lymph node mass. The liver tumors are still shrinking and now there are only two of the three liver tumors remaining.
A couple weeks ago I connected with a new “Firefly Guide” (Firefly Sisterhood is a local nonprofit that connects women going through this with another woman going through a similar scenario who is further down the path of survivorship and living with cancer). She gave me some information that helped me to keep this bag of shit in perspective. In describing to her the results I’m getting from the treatment and the side effects currently maintaining their position in my life, she suggested that it sounded like I am getting the immunotherapy drug and not the placebo. For one thing, the breast mass that was the size of a grapefruit disappeared after five months of weekly chemotherapy and the lymph node mass wasn’t far behind. The immunotherapy drug may also cause any “itis” imaginable. Yay! (Not). That would explain the arthritis I’m dealing with. Sometimes every joint hurts in an almost debilitating way. I’m currently 45! I didn’t expect to start falling apart for at least another 20-30 years. My darling husband likes to remind me that I’m at the age where things start to fall apart. Gee, thanks, honey!
So what’s the point in all of this? Well, once I reach 24 months of this clinic trial the immunotherapy drug will be stopped. My Firefly guide described the side effects she’s managing on Herceptin and Perjeta and it sounded like a walk in the park compared to what I’m dealing with. Currently I’m at month 13 of the 24 month trial. I’ve made it this far and the information given to me by my Guide has given me renewed hope that I will someday have a somewhat normal life. I cannot tell you how much I needed this information. It truly was a breath of fresh air.
I will say this about cancer, it can be a blessing. It has made me realize how much I appreciate the things that aren’t actually “things,” like friendships, family and keeping the fire of relationships glowing even when now longer residing in the same city. And I’ll go one step further and say this about COVID-19, it has also been a blessing (only in some ways). For one thing, it leveled the playing field for support groups, classes, and talking with friends and family by moving everything online. And if I could work, that would be from home. I’m currently looking for a program on “resocialization” once this thing has been managed with adequate vaccinations. Let me know if you find one, please.
Oh, and speaking of vaccinations, last week Freddy & I received our first vaccination shot, so cancer was good for something. It moved us up the line. I can start planning again! It will be so nice to see my family & friends face to face again. My sister gave birth to twins last week and I can hardly wait to snuggle them and smell that new baby smell. I’ve missed seeing my nieces and nephew! They are growing up so fast and I don’t want to miss any of it.
Spring has sprung. It’s official! Walking by the Children’s Museum yesterday here in downtown Saint Paul I saw shoots! Tulips or something is coming up in my neighborhood. Chemo brain will not let me recall any other names at this time. I’ll have to check on them in a few days to monitor their progress. Last week I saw buds on some trees when I was walking in a nearby park. I recall exclaiming out loud “Hello buds!” They didn’t answer me back except with a slight wave.
I hope you are finding ways to practice gratitude. It really can be a soothing balm in these raw and frazzled times. Earlier this week I noticed that my smile was broken. Has this ever happened to you? My posture was terribly slumped and I was just sad and couldn’t stop frowning. Sad about everything. Cancer, COVID-19, crimes against people of color going about their business, the latest 300+ young girls taken from their school in Africa, global warming, garbage everywhere, especially in the ocean, you name it. And then I remembered gratitude. So I got ready for bed and laid down, soaking in the good that brought my husband and me together, soaking in the intervention the universe performed to bring us to Saint Paul and downsize and simplify our life (and moved me 5 minutes away by car from the treatment center or 15 minutes by foot). Really soaking it in. Just letting my heart immerse in all the goodness that surrounds life. Letting myself go to that place where everything is alright. Have you been there? I highly recommend it. I can send you a meditation to help you get there if you need me to.
We’ve all gone through some really crumby stuff, but doesn’t it make you a better person and help you to grow (gain perspective and appreciate the life you have)? After a few minutes of this I was able to start smiling again. Freddy even noticed the change. Despite everything, there really is a lot to be grateful for. If I listed everything I wouldn’t get anything else done and the cat wouldn’t be happy about not being fed!
Here’s to hoping this update finds you happy, healthy and well (and vaccinated soon). I’m still praying for peace and healing. Will you join me?
Blessings to you and yours,
Freddy will be featured on March 5th as part of the Shine The Light Campaign brought to you by Jacks Caregivers. Their goal is to “Improve the way guys think, feel, and act through every phase of their caregiving journey.”
Lately I feel like the universe is playing a trick on me, or at the very least having a very good laugh at my expense. When going to the various medical appointments like the chemo, physical therapy, aquatic therapy, I feel like I’ve been to all these places before. I guess I have! I find it ironic to think about my career and work in the healthcare system, having worked in medical imaging, a pain clinic and at a home medical store. Now I am on the other side of that experience. I still haven’t decided how I feel about that. I guess it is what it is.
February marks my 13th month of treatment and I have been doing physical therapy and aquatic therapy since October. Oh and let’s not forget the home exercise program which now takes an hour! Physical therapy and aquatic therapy are finally starting to pay off, after five months. I can tell I’m getting stronger and when I do have a good day I seem to have more endurance or stamina that I had before when my body deconditioned.
I am pleased to report that my positive results continue. The CAT scan done two weeks ago revealed that the tumors on the liver continue to shrink! There were a total of three tumors that were being monitored and we are now down to two tumors! In the very beginning, 13 months ago, these tumors were measured in centimeters and are now being measured in millimeters. Yay!!! This positive news gives me a little nudge down the path, keeping me going. The next scan will be in the middle of May. That feels like a long long time away! Also, the whole body bone scan confirmed that there has not been any metastasis to the bones. Double yay! I will stay the course. Next bone scan will be August. Monitoring my heart with the echocardiogram will continue on the every 12 week cycle. So far so good with my dear heart but I am keeping an eye on that ejection fraction number.
Shall we talk about the fatigue? Just thinking about it makes me tired. Seriously. I’m noticing that the fatigue is getting to be more and more unpredictable. For instance, sometimes following treatment it will take me about three days to feel like I am bouncing back. The last treatment two weeks ago took about 10 days out of me, and I was extremely fatigued and did not have much energy at all. Monday this week I did a lot and yesterday I was slightly tired but today I feel like I could just fall over from fatigue. So no, I didn’t take that walk today even though it was 40° out! Perhaps tomorrow the walk will happen.
I have been doing a writing workshop through the loft.org and I am really enjoying it! I’m getting a lot of ideas and ways to start the writing process and feel myself falling into the tunnel of where this is going to take me ( of which I do not know ).
Honestly I cannot believe that it’s been 13 months! The time has flown by. The appointments and workshops keep me busy, along with phone calls with friends and family. I have another year on the trial that I am on, which means that chemo every three weeks continues for the next year. UGG. I can’t think about it, I can only take it day by day. January was hard. I’m not gonna lie. That one year mark was supposed to be joyful, or at least that’s what I thought it would be. It was not joyful but when February 1st came around I felt better. I’m noticing this interesting psychology around the changing of the month. After all, time is a construct that we humans have created.
I want to share some of my writing but wanted to get this update out there first. Please stay safe, hang in there, get vaccinated when it’s your turn. Wear a mask. The world needs you on the other side of this thing. I plan to be there. Hope you are well!
Blessings to you and yours,