Blood Suga' Suga'

Hooray! No more steroids, fat moon face starting to shrink....no more high blood sugar, no more insulin...no more diabetes! Things are starting to go my way...finally. (MY FACE BEFORE}

{MY FACE PRESENTLY)

Getting Stronger Each Day...

My last day of radiation was January 30th. I completed 10 rounds of full spine radiation. It was the most difficult round so far. Thank goodness that it is my last radiation treatment FOREVER. The nerve damage pain in my entire body, especially in my legs was terrible. I have lost the ability to walk or stand on my own. With each radiation dose, my spine became swollen and full of pain. Sometimes the the nerves would blow up that something similar to 'being frozen' would set it, with shooting pain, similar to sciatica. We ended up renting a wheel chair accessible van so that I didn't have to be transferred from the bed, chair, car, back to the chair and then onto the radiation table. Then do the entire thing in reverse...and feel like crap. So now I have been done with radiation for 21 days, and I have gotten stronger and some use of my left hand. Before I only usage of my right hand/arm and my brain. Today, my left arm works from the elbow to fingertip. Both arms have neuropathy (nerve numbness) from the elbow down, and from my pelvis down to my toes. I have been working to strengthen my left arm and rising to stand by myself. I'm not there yet but working on it everyday. So on another note, yesterday was our 11th anniversary. Geoff surprised me with a massage therapist who came to the house and understands how to massage someone with bad neuropathy. Then he was able to get me in the car and take me to a fine dining restaurant. It was amazing...but today my spine is not too happy about it. I did not take any pictures because of the shape of my face. The steroids have strange side effects...giving me a large appetite, bloating my belly, raising my sugars to give me diabetes, and making my face very swollen (called moon face). Thank goodness this is my last week of steroids.

Picture of us when we started dating in 1997.

Thank you to Carrie for helping out. YOUCARING.com And thanks to Misty and Tymeka for organizing the LLS Light the Night.

Some days really suck... Wait that's everyday!

Today I didn't feel well enough to put in the rad in radiation. So still eight more visits to go. Still no working parts. And the pain killers are making me all itchy or no longer working.  But let's be positive... My right arm and brain are working perfectly (so blog when you can), I slept three straight nights in a row, and people sent me some funny jokes. It was 71 degrees today and I got to rest all day and hang with my parents. And it's Friday, so geoff is off this weekend. And I get a break from radiation bc of MLK day. Ok. I feel better now (not really) so I'll smile. Thanks for checking in.

I put the RAD in radiation!

Here we go again. Fourth and last possible round of radiation. I have already radiated my entire body for my bone marrow transplant, my full brain, and the top of my spine.  Today they radiated my entire spine.  We are hoping that this round will shrink the new tumors and they will release the nerves that have taken my ability to walk, balance, stand, or sit up alone.

Today was so painful. One of the techs swiveled my right hip that all the nerves lit up and froze. It feels like you've bumped a thousand funny bones and it won't stop burning. The only thing that is helping me is morphine.....which I am so happy about because where do I go from here?

Radiation is an hour long. Today was the first of ten treatments... I hoping it begins to work quickly.  It is sooooo difficult to get in and out of the car. Wish Mr. Marks lived here cause he would totally deliver me in his ambulance. So far I'm getting worse everyday. I am so thankful for my mom and dad and husband and Kathryn! A day doesn't go by that they have me giggling....which is better than morphine anyday!

Btw, thanks for checking in. Feel free to send me a funny joke, per suggestion from my daughter. Love that idea.

Cancer. Yeah, it sucks!

Today we went to the doctors.... And we went over the MRI.....Only to find out that there are more tumors further down on my spine. This explains the paralyzation in my right leg and left arm and all the joint and nerve damage issues I'm having. The Dr. said that this may be a permanent issue with the lame leg and arm and the inability to walk. He has no more treatment for me except to make me comfortable (by sending me a nurse, a hospital bed and more painkillers) until the end. (I'd hate to tell him that the end is nowhere near). I asked about radiation and he said if you want to...so we are thinking about it.....hmmmmm?

Dear Dr.,
I disagree with your prognosis. I promise you that I will be here for my 40th birthday (april) and my daughter's 11th birthday (may) and the Fourth of July 2014. I promise you that my left arm will be in working condition and  I promise you I will be walking again.  You'll see. I have stuff to do and too many friends keeping me here. You must not realize that I have no other choice but to fight this unfair crap. I'm sorry you don't agree.

Monica

Smile.... It's been a long, crappy year!

Happy 2014! It's gotta get better, right? Well, here's the latest. During the week of Halloween, I had some issues. I lost my sight,  a terrible headache and my speech was slurred. They thought it was a stroke.  Turns out I had two tumors on my brain. So we started radiation on my brain . Full brain radiation took 13 visits and I was feeling great. I was discharged on Halloween and started to get better. Then about a month after that, I had another scare. Slurred speech, and terrible headaches and neck pain. I thought that meningitis was back (I have already survived this three times in a row) or that I had another tumor or a stroke for real. Turns out it was a super bad case of sinusitis and more tumors on my spine. Then I was discharged in time for thanksgiving. With another five more days of radiation, my hands and feet started to tingle.

Here we are today and I am wheelchair bound. My left arm and right leg are totally dead. If moved the wrong way, the nerves all light up at once and I'm cringing in pain. I can't go from lying to sitting, or sitting to standing on my own. I can not use the bathroom alone. Or eat alone. Coffee mugs and forks are too heavy for me to lift. I have fallen at least four times. My other leg is not cooperating either now.  I can not lay flat.

Because of this, I had the worst MRI today. They scanned my entire spine to help explain the paralyzation. And bc I can't lay flat , my nerves were going crazy. I cried the entire MRI. No results yet, but I wonder if I'll ever be back to "normal".

 I'm dreading what they're going to find and that I will have to endure another round of radiation and lay flat.....

Favorite Photos

Kathryn showing us how strong she is.  I like that she wrote on her "banana tuxedo".

 

 Family Photo

 

Day +51

Today is day 51 post my transplant. I'm half way there.  I'm on the other side!

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!

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...
 

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.