In the meantime...

Hi Peeps!

So, still no surgery date. Sigh. New proposed surgery date is mostly likely going to fall at the end of August, early September.

Apparently, the best plastic surgeons are on vacation in July, and since my surgery requires a plastic surgeon on the team, I'll have to wait. The UCLA team doesn't seem to be concerned by the fact that I have a large monstrous and aggressive tumor capable of invading other nerve roots that would lead to further incapacitation. It also doesn't help that the administrative assistant to Dr. H resigned and a new one stepped in.

For the last couple weeks I thought it was Kaiser's authorization that was holding the whole thing up. But no. Dr. H didn't even send his request for authorization until 10 days after our consult. Then, it was authorized by Kaiser within 3 days. Then, there's no admin assistant to speak to at UCLA because one resigned and another had to be replaced. And then, that's when I found out that the plastic surgeon who Dr. H wants to work with is on vacation for another two weeks.

So, I've asked if there's another plastic surgeon that could fill in to hurry the surgery along, and she'll get back to me on that. In the meantime, I've decided to remain calm and try to focus on what I can do instead of trying to force an outcome that may or may not be favorable. I'm assuming that a surgery date asap would be better, but could getting a less experienced plastic surgeon with an earlier surgery date hurt me??? Would it be better in the end to wait and get the plastic surgeon specifically assigned to my case? I don't know...

In the meantime, while my surgical team is sipping Mai Tai's on some beach, I've been keeping busy trying to do everything in my power to halt, inhibit, slow down the tumor growth. First and foremost, I started going back to the naturopathic clinic to see an integrative oncologist who has convinced me to cut out all sugar and carbs, going on a clean ketogenic diet. No fruit, no chocolate, no bread, no brown rice. Sugar and glucose feed cancer cells. I am trying to get in as many greens and vegetables in as possible. Second, I'm taking Vitamin C IV's three times a week at the clinic. I've also added a few more supplements to the 20+ supplements that I'm already taking at the request of the naturopathic doctor (cur cumin, melatonin, fish oil, medicinal mushrooms, etc.) I'm doing reiki, massage, acupuncture, infra-red saunas, meditation, CBD, journaling. I'm trying to stay stress-free as much as possible.

One great thing is that I've been sleeping better, sleeping through the night most nights, and not waking up at 3am in pain reaching for my pain meds. I have had a couple bad days that have kept me in bed, but for the part, my pain has been subsiding. I notice that I have a bad day with pain when I get off schedule from my pain meds. I also have times when I am just feeling really good, so good that I convince myself to skip the pain meds, or to start taking less. That usually results in a flare-up. So, I've learned I've got to stick to a schedule. Also, I've learned that to avoid pain, I need to avoid sitting too much, esp. driving too much. That means staying active through the day, skipping restaurants that tend to take longer, and laying down to relax instead of sitting.

That's the latest...

My Story at a Glance

My Story:

• Nov. 2017: Started having moderate lower back pain. Pain went away after 2 weeks with a chiropractor. 
• Feb. 2018: Back pain returned, but more severe 
• April: 2018: I got an MRI and was told there was a "mass" of 2-3 inches on my sacrum. The size of an egg. 
• April 2018: Got a Biopsy 
• May 7, 2018: Found out the "mass" is cancer. Was diagnosed with "Chordoma" (a super rare bone sarcoma). Surgery date set for July 2. 
• June 20, 2018: I requested my doc at Kaiser for a referral to see a Chordoma specialist at UCLA, but my request was denied.  
• June 26: Got pelvic MRI to prepare for surgery. 
• June 28: MRI came in. Tumor had grown to be the size of a grapefruit. Local surgeon from Kaiser throws in the towel (saying surgery is going to be more extensive now) and approves my referral to see a specialist at UCLA. July 2nd surgery is cancelled. 
• July 9: I visit Dr. H at UCLA  
• Aug. 5th: Checked into Oasis of Hope (cancer treatment hospital) 

UCLA Visit

Hello peeps!

*Exact surgery date is not known at this time, but they are thinking at the end of July, early August.

 First and foremost, a little background on the UCLA doctor. Dr. Hornicek and his nurse, Al, have been working together strictly on Chordoma for over 20 years. They were at Mass. General hospital for many many years, and then came together to UCLA to start the Chordoma program less than a year ago. Let me just say that these two, Al and Dr. H, are a Chordoma-surgery-dream team. This is all they do. Not just surgery. Not just bone cancer surgery. But Chordoma surgery only. That is and has been their entire focus for the last 20+ years. So they, along with other specialists, have fine-tuned this surgical procedure to avoid any type of complications that come up. Dr. Hornicek (let's call him Dr. H) mentioned performing at least 300 of these surgeries, and he has performed more than any other surgeon in the U.S.! Worldwide, only doctors in China (because of their population) have performed more of these surgeries. So, not only am I in expert hands, I am in the hands of a foremost internationally recognized Chordoma expert. People fly from all over the world to see him, and I just had to drive for two hours. That is amazing!

During the visit, which lasted 2.5 hours, Al and Dr. H went over the details of my surgery, which is quite extensive. It's actually going to be two surgeries. This is the gist of what I gathered from my visit. Some of the tiny details may be a little off, but it was hard to write everything down.

• The surgery consists of a team of Dr. H (orthopedic surgeon), a general surgeon, a spine surgeon, and a plastic surgeon
• First incision in the front to tie up the blood vessels (to avoid blood transfusion and massive blood loss) and start cutting/preparing the sacrum from the back. They will also remove muscle from my abdomen to fill the void of taking out the sacrum (something of that sort) This surgery will last 4-6 hours. 
• 3-5 days later (after the wound in the front heals), they will flip me over and do the second, more extensive surgery in the back. They will remove most of my tumor and anything that is involved including most of my sacrum, any nerve roots that are involved, and leave whatever they can. They need to be sure to remove the entire tumor with wide margins, taking with it whatever's necessary. I asked Dr. H if he could save my S2 nerves. He gave a roundabout answer that mostly seemed to mean "most likely". On whether he could save the S3 nerves, he mostly said no. He reiterated his main objective is to save my life. I then told him that I didn't care about that, I just wanted him to save the nerve roots haha. Everyone laughed. Mostly he was saying that you cannot always depend on the MRI. He'll have to wait until he's in surgery to truly see what he can save. The surgery also involves a bone graft, and hardware that screws into my pelvis, to avoid sacral insufficiency fractures in the future. There's a lot of other mechanical things that they mentioned that I don't understand very well yet. Like why do they need to take muscle from my front and for what? And while plastic surgery is there, can he take out some fat and give my a tummy tuck as well while he's at it?? Lol. This surgery will last 8-10 hours. 
• I will be in the hospital for an estimated two weeks, and another two weeks after that in a rehab center. 
• The most surprising thing to me: I will need to get cleared to sit, and I will not want to sit for 3-6 months following the surgery. I will be able to sit on a toilet they said, but sitting will be painful for me for a while. Basically, Dr. H says, I will feel like a grenade went off down there. Yikes! 
• Another surprise: I will most likely be using a walker for 3 months or so after the surgery. 
• Most patients need their narcotic pain meds for about 6 months following surgery. 
• One of the scariest things about this type of cancer is its high re-occurance rate. The best chance of beating this cancer is to get ALL of the tumor surgically, not leaving even one cell behind to wreak havoc. But Dr. H has a 0% re-occurance rate!! That was incredible to hear. That as long as there are no metastases (in the lymph nodes or lungs) prior to surgery, according to those statistics, I have a 100% chance of being cured, one-and-done. 
• As far as activity level goes, Dr. H says he normally tells patients that they will only be limited in high impact activities. But he recently changed his mind with one patient who after a year was doing high intensity workouts in the gym and sent him videos of his workouts. He also mentioned a Marine who after six months was able to go back into active service. I also spoke online with another guy who had this surgery and told me that he did Crossfit 4-5 times a week. (Wow!) I have hope. Not that I'm into Cross-fit, but just knowing of these cases helps me feel like this surgery will not be the end-all of my athletic interests. 
• My overall thoughts on the experience. 
• I am SO happy to be in good hands. I know that if there is a nerve root that can be saved, he's the guy to do it. If he can't, I won't question it. If I need to have hardware, it's because they have tried it without, and it works better this way to avoid future surgeries and painful fractures, etc. 
• Recovery: It's going to be tough! (Not wanting to sit for 3-6 months? A walker for 3 months?) But I'll get through it. I have my family and my support team who will get me there. 
• I'm sooooo glad I didn't go with the Kaiser Dr. (more on that below) 
• Kaiser Doc vs. UCLA Specialist: 
• Kaiser doc was nice, had great bed-side manner and has a great reputation as a spine surgeon. He had done a few Chordoma surgeries (I'm guessing 5 in a 30 year career-span). 
• Kaiser doc's approach to my surgery: Go in through the back only. Take out the tumor and whatever was necessary. Sow me up. It's easy! It would be him and another spine surgeon. He told me in the pre-op that I would be surfing in a month!! There was no hardware, no bone-grafting..It was so simple, yet when he said "surfing in a month", it felt...so NOT right. 
• I was so close to going with this doctor because he denied my initial referral to be seen by a specialist. I'm glad that he granted my request in the end because otherwise, he would have performed the surgery and I would have had no idea of what was to come in terms of recovery, and I probably would have had to have multiple surgeries after that and it could basically mean the difference between having a re-occurance or not. In other words, the referral to see the specialist probably saved my life. I will probably never know, but my gut knew that this was not the right guy for the job. 

Anyway peeps, the bottom line is: I'm in expert hands and I'm happy about that. It's going to be a long and hard recovery, but I'll do my best. Everything feels RIGHT with Dr. H. There are no doubts. I have full confidence in this guy, and I'm so blessed that he's close, and I have all your support. Because of that, I'm not worried! Like I've said from the get-go, "Everything is gonna be OK, no matter what". 

What is this?

Hello Friends/Family,

I've created this page as a way to give updates and to write about what's going on. I suspect the purpose is two-fold. One, to keep friends and family in the loop. And two, writing is cathartic and a release for me in a way.

I'm not sure how often I will publish updates, but I will try to do it often.

Thanks for being a part of my journey.

Crystal