More to that story

If I may, I'd like to add a little more color and contrast to the MD Anderson experience (from the last blog post). Since this new addition to the story was not my story to tell (yet), David has since said, "Yes, let's blog about my MD Anderson story now". And so, I shall. 

Let's rewind

It was back in August 2020 that I was diagnosed with a blood cancer called polycythemia vera. I had never heard of it, knew nothing about it and was quite surprised to know I had it. While at MD Anderson this past week, I saw an amazing hematologist oncologist that specializes in PV, by the name of Dr Verstovsek. He's the King of PV as many doctors and health care workers seek his knowledge regarding polycythemia vera. 

My intention was to talk to him about joining a clinical trial - and that I did. Dr V reviewed my medical history, asked many questions, and decided joining a study is best, as he said he's not ready for me to join a clinical trial (at this time) as he feels like the medications given during the trials (that are happening now) are not intended for me at this stage of my cancer. He said with time, they will be. But not right now. He said he feels like I still have other treatment options still available to me that might better serve me. 

What does the study mean? Well, essentially, I had 1001 vials of blood draw, a million lab values tested, my medical information loaded into their database, and a follow up to be completed every 3 months (for a while) and then maybe every 6 months eventually. If MD Anderson can find a cure, I really want to be a small part of it, if at all possible. And if anybody can do it - it's MD Anderson. I've seen their magic now. They are the DisneyWorld of cancer centers. The best. The bomb.com. They are the epitome of what it means to "make things happen". Their well-oiled machine allows them to operate at a high level to help cancer patients see doctors who are the best of the best. Heck, I wanted to just stay and work there. Instead, I'll visit here and there. Who doesn't want to go to DisneyWorld every 3-6 months!

But what about David?

Yes, well David had sinus surgery back in mid-November. He actually saw a ENT doctor at the ENT practice I work for. He had had a sinus infection which did not respond to antibiotics and steroids. He eventually had a sinus CT scan showing a blockage in his left upper sinuses, likely a polyp. While not everyone who has sinus surgery has polyps, some people do. Most people have sinus surgery for various reasons.....turbinate reduction, septum repair, sinus ballooning, among many other things going on in people's noses. Good news? Surgery went great! David's recovery went well, and he was able to breathe through both nostrils again and he bounced along loving his new open sinuses. 

So what's the dealio then

Protocol states that tissue (polyps, any resection inside the nose, etc) that's been taken out of the nose is sent as a specimen to pathology, if indicated by the surgeon. Often times, it's simply benign tissue and many people do not even know their sinus tissue was looked at by pathology. That's the person you want to be.

Fast forward to David living his best life, breathing well from both nostrils, sinus rinsing to encourage healing and doing all the things to give his nose a wonderful recovery. Not so bad after all, he thought. Lauren had a sinus surgery about 2 years ago now (minus the polyp and include a deviated septum repair for her) by the very same doctor - and still to this day, raves about the results. David joined that fan club. All was well.

Here's where the record scratch happens - it's loud and screeching. Remember listening to your 45's on the record player, singing along, dancing like no one is watching OR dancing like your on Soul Train and it's your turn to dance down the middle of the lines. I feel like dancing, yeah and then the big scratch happens, oh and add in a repeating skip in the record. Dang it, and I was so happy listening to that song. It's my favorite song.....the one called Beautiful Sunday by Daniel Boone. Hey, Hey, Hey, It's a beautiful day! 

You might as well change the record completely and don't start that same record over, because the news David received was quite the surprise. He would find out he has SNUC. That polyp turned out to be a tumor that was cancerous. It's called Sinonasal Undifferentiated Carcinoma. Wait, what? I've never heard of that, and I work in the ENT field. It's rare, we are told. And if you google it, you might feel like you need to sell all your belongings, check your Will, and go do those things you said you were always going to do. 

Panic sets in, no doubt. Confusion and sadness along with lots of googling that's never good for anyone. After he's given the doctor's recommendations of going to either Baylor or UTSW or MD Anderson, David picks MD Anderson. And in no time, we are there.

Now, there's lots going on in-between finding this news out and pulling up to MD Anderson. Let's see, there's talking about it, more talking about it, crying, being happy we found out now, deciding who to tell, deciding to tell no one, downsizing the farm, thinking of all the things we need to wrap up in life, making the calls for appointments at MDA, travel logistics, who will care for the farm as he'd need to be at MDA all week for PET scan, MRI, seeing this doctor and seeing that doctor, and I could go on and on. We had no idea what this diagnosis meant for sure, as only time would tell. But you can't help but think the worst. Yet, what do you realize the most? This isn't happening to someone else, it's happening to you. To David. To your own family. You see, it's always someone else getting the cancer. Someone else having chemo and radiation. Someone else trying to figure it all out. Now, it's your turn. Your turn to feel what this really feels like and go through the 1,001 steps to be seen by doctors who can help, to prepare yourself for treatment, and figure it all out. It's the holidays, how does that play into it? We were supposed to help Lauren with Brooks while she went back to work. It was like tossing your life in the air, and seeing where it would all land. We landed at the door step of MDA with us BOTH having appts that week. I was on the 8th floor while David was on floor 10. It was an adventure that we will never forget. We were both seeing amazing doctors, we were both being covid tested to get through the door, and although no family (only patients) can get inside the buildings at MDA, we walked through the doors together. What a blessing it was. What a gift to be there. There's no better Christmas gift for a cancer patient. MDA is the present you want to unwrap. 

Why MDA?

So when you're diagnosed with cancer, it's time to get an oncologist (unless you have one already). It's time to have labs, a PET scan, maybe other imaging, a medical oncologist, other types of oncologist, a oral surgeon/dentist to check your teeth if you are having radiation, and other providers depending on your circumstances. Like a radiation oncologist and a chemo oncologist, plus a few other appts that have probably slipped my mind. So if you go to UTSW or Baylor, you'll likely see 3 different oncologist on three different days, head to Lab Corp for labs, go to an imaging center for scans, and find a DDS in your insurance plan that can help with pre-clearance for radiation. In other words, you are your own Care Coordinator, and that's fine - don't get me wrong. There are MANY wonderful places to be treated for cancer that do a amazing job. Or, another option is you can go to MDA and it's all under one roof, whereby all the providers talk to each other as a collaborative health care team making decisions about your care - together. MDA has what they call a tumor conference on Thursday nights where the pathologist, radiologist, all the oncologists involved, the pathologist, etc all sit in one room and watch as the slides of your medical records are presented on a large screen for all to see and review (by the Fellows at MDA). The Fellows do ALOT there. They know ALOT. After your case is presented to the board, they make their recommendations. Pretty sweet, huh. Easy peasy. You check your portal, MyChart for updates, your appts, your results, etc. Yes, it's in Houston. No, you won't be at home for treatment. But what we have learned is that the FIRST time you have treatment is the most important and imperative time to be at a facility that knows what they are doing. Now, UTSW, Baylor, Texas Oncology ALL know what they are doing and are here in town. They are great! Yet, we picked MD Anderson as David feels like his best chance is with them. And that's what it's all about. It's about the patient picking what works best for them and serves them well. After all, it's their body, their decisions and ultimately, their consequences. 

How did it go?

Smooth as butter. They make the appts. You show up. They schedule all the imaging, labs and things. You show up. They all talk about it together. You find out. They do this every day and know what they are doing. And not only that, it's a health care team who day in and day out know cancer. They work as a team, and communication is their staple. It's all under one roof. There's parking. There's also apartments to rent all around the area. And most importantly, when it comes to your life, you want to see the people who see it every day. They know what to do, how your feeling, and never once do you get an idea they don't know what their doing. It's peace, pure peace at a time when your soul is in complete chaos.  

What's next, my friend?

Oh goodie! David went back to MDA this week and was fitted for his mouthpiece, mask and had his practice radiation. The fun never stops. I never knew you had to practice the radiation. I'm learning so much! And then, it'll really fire up on Jan 11, 2021 when (we) go back for his treatment to actually begin. It's going to look like this: Every week day, radiation. Side effects, yes. Once a week, chemo is given. Side effects, yes. This will happen for 7 weeks. We'll rent an apartment again, and live there until they tell us we can go back home. DisneyWorld will unfortunately turn into a Haunted House for awhile. This is the unknown. And as humans, we are generally scared of the unknown. We, like millions of people around the world, will move through this. We are not the first in the line for this ride, nor will be the last. We are merely experiencing what so many people have already. We are just like the others, trying to figure out how to do this. How to make it all work. How to live life and try to rid yourself of cancer. David gets that chance, and has the privilege of going to MDA for that chance. No one gets the guarantee, nor do we expect it. Okay, we do expect it. And we will give it our best shot. Or better yet, the best radiation/chemo shot. 

What are the chances?

I can't even begin to answer the question of how David and I were both diagnosed with cancer within a 3-4 month period of each other. Different cancers, different diagnosis. and different treatments. Both considered rare cancers, to boot. Even though it doesn't make sense, that's just it. These things that happen to us in life don't have explanations. It's the story written for us. God will see us through as our trust and faith is strong. We each have an uninvited guest visiting us, and how we handle our new visitor(s) is key. Please, come on in. Make yourself at home. How may we assist you? We will continue to pray, ask for grace, try and give grace as much as we are able, and lean on our family and friends. It's not a good time to disappear into life, it's a good time to rejoice, celebrate life and share our experiences. Thanks for coming to DisneyWorld with us. I hope you like Haunted Houses, too.

With love,

Cyndi

I'm accepting questions at this time. First up, what about the farm? 

We have decided to downsize the farm a little bit while we figure things out. Coinciding with all this action, is that the guard dog pup's batteries on their underground fence collars went out, and the pups kept getting out of the pasture. The sheep decided to push through a part of the fence and mayhem ensued. This is exactly what happens on a farm. Weird and unusual things at unexpected times. David and I made the decision to place the guard dogs, Marley and Lucy on CraigsList to find a new place to guard sheep/goats. Within 24 hours, I had people requesting already-trained guard dogs for their sheep/goats, and so they left us pretty quick. I may need to start a business doing that, as people love guard dogs who are already trained for sheep and goats. Anyway, that leaves the sheep who decide to become escape artist. It's not the first time, mind you. Sheep are puzzle solvers and a fence is their puzzle. We can't have this while we are out of town for a couple of months, so we reached out to some friends with a farm and they kindly agreed to take our sweet sheep. They let us know we can have them back, if we so desire, after we are back home and settled. But for now, the 5 ewes are now taking residence in Anna. We drove them out there and saw their barn. Wow, the sheep are in sheep haven there. That's one nice barn they have. So the downsizing has begun so that we can handle our business at hand. At this time, no one else is on the blocks to leave the property. All the farm animals are on high alert to make sure they do not leave their assigned areas.......or else. Aint' got time for that when I'm not here to chase you down. 

But what about Sugar and Maybe, your house dogs?

They are coming with. We took them both with us to the apartment that we rented the first week we went to MDA. They did very well and make a great team. Maybe and Sugar both adapt well to wherever we are.

Where are we

Okay, we're all good in this warm sun

And will y'all work?

I'll be working, and take my computer with me. David will work for a week or two, and then from what we understand, he'll down for the count until after his treatment is done. It's really hard to say, as it'll depend on how he's feeling. Since we are first-timers at radiation/chemo, I'll think we'll both see how it goes as far as work is concerned. TBD. But we are going to try to work, as much as each of us can, and plan on staying at an apartment close to MD Anderson. 

Who will care for the farm?

I've secured a young lady who has cared for our farm animals on previous vacations and such. She does an amazing job. We've had multiple friends say they will do this, but in the grand scheme of life, it's hard to make time to come over morning and night, plus keep the barn clean. Therefore, we would rather pay to have this task completed, and not burden friends with chicken poop and egg collection. It's not as glamorous as it sounds. 

In summary, we are in the initial stages of this excitement. What to do, where to go, who will care for the farm, will David blog? So many questions. I have a feeling there's more Q&A sections to come in the upcoming blog posts. Buckle up, the rollercoaster is ticking up the first ramp.