Family Photo
Follow our adventures as our JOURNEY CONTINUES... in California.
Saturday, November 17, 2012
Thursday, November 8, 2012
Day +51
I am "home" in the rental apartment living with my parents. They have been the best therapy ever! Mom's cooking and Dad's jokes. It's rare that one would find such time to spend with their parents as an adult. It's been a one of those gifts that could not have been possible without this horrible disease. I guess it's where I found lemonade among these many lemons. Another wonderful plus has been my love to craft. I taught myself how to knit and I am making a scarf. And preparing some Pinterest inspired Holiday Crafts.
My mornings start out with a trip to the Infusion Treatment Area (ITA) at the Stanford Cancer Clinics. I am receiving steroids to treat my GVHD and a an antibiotic in my IV Picc Line. Then they draw about 10 vials of blood each day, then we wait for the numbers to come back. We are always watching my white blood, red blood and platelet counts. They go up and down like a roller coaster. Then we review all of my drugs...what a list! I am happy to report I am no longer on the IV nutrition, but I have to eat by introducing "new" foods each day in small portions. My insides are not yet fully healed yet...and I hope to introduce fruit and veggies by the end of the week.
There it's cool to where your mask. There it's cool to be bald. There it's cool to have tubing coming out of your body as you walk around that amazing place. By the way, BMT patients are always cool. Really, I'm freezing all of the time! I have taken a fashion cue from Zuckerberg, and wear hooded sweatshirts everywhere (with my ski hat, gloves, fleece, fur-lined crocs and mask). Scary!
Saturday, October 27, 2012
Day +39
Thirty-nine days ago I had my BMT (Bone Marrow Transplant). It's been a horrific journey. I feel for the children that have to go through this process to heal. I have been in this great hospital for 49 days and absolutely love my nurses. I have made some great friends here. They have become my family. They care so diligently for me and hold my hand when I am throwing up in the middle of the night or needing to get an injection.
Since my last entry, a lot has happened.
I used to have a catheter that was stitched into the right side of my chest. It was tunneled under my skin to my jugular vein. This is the line in which I received my chemo and marrow. I ended up getting an infection in that line and they had to pull it. And I mean, literally PULL it out. It was very traumatic for me. Then they had to put in an IV line, which ended up burning every time they put meds through it. Then the vein ended up hardening. Three days after that, they put in a picc line into my left arm. (Yes, I am bald too!)
After that my hands began to show signs of a rash and swell like crazy. It turns out that I have GVHD (Graft vs. Host Disease). This is where my new immune system begins to regenerate and decided that it's in the wrong body. My insides swelled up with ulcers and sores, bathrooming becomes an issue, and my hands were a mess...peeling and itching. They had to put me on steroids to suppress my system. I had my first colonoscopy and was taken off food. All of my nutrition comes to me via my IV so my insides could heal. The steroids made me hungry and blew up my sugars. So insulin shots are every few hours. I'm a little bruised on my arms.
Because I have GVHD, I will never be able to sit in the sun. I guess that vacation to Hawaii is out. Good thing I love Seattle!
Three days ago they ok'd me for clear liquids and I can eat popscicles and clear broths. (Boring!) Then yesterday they ok'd me for full clear liquids, which means I can add cream of wheat and cream of rice to my diet (even more boring!).
But for the good news! They are discharging me on Monday (Day +41). Hooray. I will still be on a very limited diet and hauling a wheeling suit case full of my IV nutrition with my where ever I go, but at least I can sit on a couch in our rental apartment! I have to wear a mask when ever I leave the apartment or hospital room. So people stare, but at least I'm alive!
I still can't go home until after day +100 which (I haven't counted) will be close to Christmas Time. That seems like forever...
Since my last entry, a lot has happened.
I used to have a catheter that was stitched into the right side of my chest. It was tunneled under my skin to my jugular vein. This is the line in which I received my chemo and marrow. I ended up getting an infection in that line and they had to pull it. And I mean, literally PULL it out. It was very traumatic for me. Then they had to put in an IV line, which ended up burning every time they put meds through it. Then the vein ended up hardening. Three days after that, they put in a picc line into my left arm. (Yes, I am bald too!)
After that my hands began to show signs of a rash and swell like crazy. It turns out that I have GVHD (Graft vs. Host Disease). This is where my new immune system begins to regenerate and decided that it's in the wrong body. My insides swelled up with ulcers and sores, bathrooming becomes an issue, and my hands were a mess...peeling and itching. They had to put me on steroids to suppress my system. I had my first colonoscopy and was taken off food. All of my nutrition comes to me via my IV so my insides could heal. The steroids made me hungry and blew up my sugars. So insulin shots are every few hours. I'm a little bruised on my arms.
Because I have GVHD, I will never be able to sit in the sun. I guess that vacation to Hawaii is out. Good thing I love Seattle!
Three days ago they ok'd me for clear liquids and I can eat popscicles and clear broths. (Boring!) Then yesterday they ok'd me for full clear liquids, which means I can add cream of wheat and cream of rice to my diet (even more boring!).
But for the good news! They are discharging me on Monday (Day +41). Hooray. I will still be on a very limited diet and hauling a wheeling suit case full of my IV nutrition with my where ever I go, but at least I can sit on a couch in our rental apartment! I have to wear a mask when ever I leave the apartment or hospital room. So people stare, but at least I'm alive!
I still can't go home until after day +100 which (I haven't counted) will be close to Christmas Time. That seems like forever...
Tuesday, October 2, 2012
Day +14
I finally feel up to posting an update. Scraping up the energy is close to impossible.
Pre-Transplant:
On Sept. 10th, I started a full week of total body radiation. Each round of radiation, lasted 8 minutes...slowly sapping my energy. There were a total of 11 rounds. I could feel the changes in my skin and taste buds.
On Saturday, Sept. 15th, I was admitted to Standford Hospitals E1 Cancer floor. After settling in, round one of of intense chemotherapy began. Sunday was the same.
Monday was a welcomed break...also known as the day that all of the chemo and radiation catch up to you.
Tuesday, Sept. 18 was transplant day! My second birthday. It was actually quite uneventful. It similar to a blood transfusion. It's called Day Zero. It was amazing and I cried. I felt so overwhelmingly thankful to be here,
Wednesday, Sept. 19 (AKA Day +1)
I don't really remember much. But here is what has happened between then and today.
I haven't swallowed anything in at least 8 days. No food. No Drink. I'm on IV Nutrition.
My mouth, throat, and entire digestive system is incredibly full of ulcers and sores. (making me look like a chipmunk with swollen cheeks!) My body has no way to heal them or fight them off...we are waiting for my new immune system begin to grow. They say any day now. I average about 2 blood or platelet transfusions a day.....so thank you to those that donate blood! I've been in isolation, there's been a lot of throwing up, and going to the bathroom. It's ALOT of IV liquids. At least I know my kidney and bladder are working. My hair has officially fallen out and I am exhausted everyday.
But today is Oct. 2. I excited to have made it to October. Today is Day +14.
Pre-Transplant:
On Sept. 10th, I started a full week of total body radiation. Each round of radiation, lasted 8 minutes...slowly sapping my energy. There were a total of 11 rounds. I could feel the changes in my skin and taste buds.
On Saturday, Sept. 15th, I was admitted to Standford Hospitals E1 Cancer floor. After settling in, round one of of intense chemotherapy began. Sunday was the same.
Monday was a welcomed break...also known as the day that all of the chemo and radiation catch up to you.
Tuesday, Sept. 18 was transplant day! My second birthday. It was actually quite uneventful. It similar to a blood transfusion. It's called Day Zero. It was amazing and I cried. I felt so overwhelmingly thankful to be here,
Wednesday, Sept. 19 (AKA Day +1)
I don't really remember much. But here is what has happened between then and today.
I haven't swallowed anything in at least 8 days. No food. No Drink. I'm on IV Nutrition.
My mouth, throat, and entire digestive system is incredibly full of ulcers and sores. (making me look like a chipmunk with swollen cheeks!) My body has no way to heal them or fight them off...we are waiting for my new immune system begin to grow. They say any day now. I average about 2 blood or platelet transfusions a day.....so thank you to those that donate blood! I've been in isolation, there's been a lot of throwing up, and going to the bathroom. It's ALOT of IV liquids. At least I know my kidney and bladder are working. My hair has officially fallen out and I am exhausted everyday.
But today is Oct. 2. I excited to have made it to October. Today is Day +14.
Wednesday, September 12, 2012
Help and generosity.....
https://www.everribbon.com/ribbon/view/8399
Two of the greatest teacher/friends came up with a great idea. They have started a fundraising page for us. If you are interested, check it out.
Two of the greatest teacher/friends came up with a great idea. They have started a fundraising page for us. If you are interested, check it out.
Tee Shirt Order
Friday, August 31, 2012
Team Monica Tee
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