Colby & Zoe were there too... but apparently I didn't get many photos of them!
Saturday, March 10, 2018
Children's Museum
A few weeks back on February vacation we got out and went to the Children's Museum with Grammy and Grampy.
The Water Room is definitely the favorite!
The Water Room is definitely the favorite!
 |
| Baby Girl's first time in a big girl stroller. |
Hunter loved the dominos. He got bummed when it got knocked down on him, but he got back to it. :)
They loved the "Pirate" Ship. (It's not a pirate ship, but rather a ship that is supposed to resemble one that colonists would have taken when they came to settle in Rhode Island.
Hunter the builder.
I love this crazy crew.
And with me and my trusty gray hat.
The big kiddos and Grampy on the creepy lady.
Wednesday, March 7, 2018
Remission
Remission is a funny thing. It's the goal for cancer, right? You hear you have cancer and you look for the light at the end of the tunnel- that moment when you're free and clear and you're in remission. I know that was what we always looked forward to. The point when the cancer was gone and life could go on.
Only it's not really that easy I'm learning.
On January 11, 2018 I finished cancer treatments. I received my last dose of chemo and I was in remission. (Honestly though, Dr. Nathenson never used that word... I was told I had clear scans but I assume it's the same thing?)
Anyways, I expected things to get better quickly, but really, I'm in a holding pattern. I still feel exhausted and achey and I still have a feeding tube. I'm still waiting for the better. And I hate that I still feel so... sick. I still need help. I'm still not who I was before. (Will I ever be?)
When you're going through cancer treatments you expect to feel awful. Sleeping for days at a time is okay- sleep fights cancer. You're expected to lose weight. You're expected to be in pain. You're allowed that. Chemo is not only killing the cancer cells, but it's poisoning your body. The drugs effect everything. My fingertips and toes were constantly numb. My fingernails became brittle. My back constantly ached. I had awful heartburn. In the course of 10.5 months I took 6 different highly-toxic chemotherapy drugs. (Vincristine, doxorubicin, cyclophosphamide, irinotecan, ifosfamide, and eutopiside) I took drugs to combat the side effects of the chemo. And then I took drugs to combat the side effect of the side effect drugs. On top of all this, I spent 6 weeks receiving daily radiation treatments. I couldn't eat. I couldn't swallow. I had blisters on top of blisters in my mouth. I was on multiple narcotics to ease the pain. I was admitted inpatient 5 times in as many months to treat infections I developed due to my weakened state. This is when I had my "9s" and found myself unable to talk because of the pain. But it was all expected. It was okay that I spent 10 days in the hospital and hardly talked during any of it to avoid the pain. It was okay that I took narcotics every two hours and went through 24 ice packs a day to ease the pain. Because that's what happens when you have cancer. But it was okay because I was doing something to fight the cancer. It all had a purpose and it was killing the cancer cells.
But back to remission. After a year of doing something I find myself doing nothing- except not feeling great. It's hard to sit here each day and not receive chemo or radiation. I hated them, but they were doing something. What if as I sit here typing, those pesky cancer cells are multiplying in my lungs? Or on my liver? Remission is a chance to relax, but I'm not sure you ever can really relax. It's the end goal sure, but there's no guarantee that it's the end. I could go back to Dana in 2 weeks and learn that I have another tumor growing. And then I'd be three months behind because remission caused me to do nothing.
I googled alveolar rhabdomyosarcoma for the first time today. I waited over a year. Finally I decided that the numbers on the screen weren't going to change anything so I googled. I wanted to see how common it is. I already knew that sarcomas in general are rare. Rhabdomyosarcoma? About 250 cases a year. The majority of them children 1-10 years old. There is no real info about adult rhabdomyosarcoma because it is that rare. One in a million kids get it. The number is even smaller for adults. When we met with the OB who took me on when I was diagnosed she told me that I was probably the only pregnant person ever to be diagnosed with alveolar rhabdomyosarcoma. (I never wanted cancer to be my claim to fame!)
The point of all of this? Though remission is the goal, the uncertainty is so much harder than I thought it would be.
Only it's not really that easy I'm learning.
On January 11, 2018 I finished cancer treatments. I received my last dose of chemo and I was in remission. (Honestly though, Dr. Nathenson never used that word... I was told I had clear scans but I assume it's the same thing?)
Anyways, I expected things to get better quickly, but really, I'm in a holding pattern. I still feel exhausted and achey and I still have a feeding tube. I'm still waiting for the better. And I hate that I still feel so... sick. I still need help. I'm still not who I was before. (Will I ever be?)
When you're going through cancer treatments you expect to feel awful. Sleeping for days at a time is okay- sleep fights cancer. You're expected to lose weight. You're expected to be in pain. You're allowed that. Chemo is not only killing the cancer cells, but it's poisoning your body. The drugs effect everything. My fingertips and toes were constantly numb. My fingernails became brittle. My back constantly ached. I had awful heartburn. In the course of 10.5 months I took 6 different highly-toxic chemotherapy drugs. (Vincristine, doxorubicin, cyclophosphamide, irinotecan, ifosfamide, and eutopiside) I took drugs to combat the side effects of the chemo. And then I took drugs to combat the side effect of the side effect drugs. On top of all this, I spent 6 weeks receiving daily radiation treatments. I couldn't eat. I couldn't swallow. I had blisters on top of blisters in my mouth. I was on multiple narcotics to ease the pain. I was admitted inpatient 5 times in as many months to treat infections I developed due to my weakened state. This is when I had my "9s" and found myself unable to talk because of the pain. But it was all expected. It was okay that I spent 10 days in the hospital and hardly talked during any of it to avoid the pain. It was okay that I took narcotics every two hours and went through 24 ice packs a day to ease the pain. Because that's what happens when you have cancer. But it was okay because I was doing something to fight the cancer. It all had a purpose and it was killing the cancer cells.
But back to remission. After a year of doing something I find myself doing nothing- except not feeling great. It's hard to sit here each day and not receive chemo or radiation. I hated them, but they were doing something. What if as I sit here typing, those pesky cancer cells are multiplying in my lungs? Or on my liver? Remission is a chance to relax, but I'm not sure you ever can really relax. It's the end goal sure, but there's no guarantee that it's the end. I could go back to Dana in 2 weeks and learn that I have another tumor growing. And then I'd be three months behind because remission caused me to do nothing.
I googled alveolar rhabdomyosarcoma for the first time today. I waited over a year. Finally I decided that the numbers on the screen weren't going to change anything so I googled. I wanted to see how common it is. I already knew that sarcomas in general are rare. Rhabdomyosarcoma? About 250 cases a year. The majority of them children 1-10 years old. There is no real info about adult rhabdomyosarcoma because it is that rare. One in a million kids get it. The number is even smaller for adults. When we met with the OB who took me on when I was diagnosed she told me that I was probably the only pregnant person ever to be diagnosed with alveolar rhabdomyosarcoma. (I never wanted cancer to be my claim to fame!)
The point of all of this? Though remission is the goal, the uncertainty is so much harder than I thought it would be.
Subscribe to:
Posts (Atom)
Playing Outside
Back when we had that one beautiful day on February vacation... Colby & Zoe were there too... b...
-
Back when we had that one beautiful day on February vacation... Colby & Zoe were there too... b... -
Miss Harper was born on June 23rd at 34 weeks 1 day. She's perfect and doing well in the NICU and we can't wait to have her home! ...