Thursday, April 26, 2018

Boarding a Speeding Train

A friend at church who had breast cancer a few years ago described it as getting on a fast moving train she didn't want to be on, and couldn't get off. What a great analogy!

After being in a holding pattern for so long, these last two weeks have felt like I was caught napping and then had to run hard to catch the last car of the train as it sped out of the station. I made it -- barely -- gasping for air and my side hurting. No seats left in the car so I stood, clinging to an overhead strap as my legs adjusted to the sway of the train, before I started edging my way up to find an empty seat.

Right now, in this moment, it doesn't feel like I've been able to find that seat where I can finally rest and catch my breath. We're just hurtling down the tracks and I'm clinging on for dear life, one strap forward at a time.

I had already scheduled an appointment with an oncology surgeon in Ft. Wayne before we decided to for sure move, so I kept that, and am so glad I did. After a pretty rough experience with an oncologist in town, who didn't look at the PET scan and didn't read the whole report, I still wasn't exactly sure what was going on with my body. For this control freak, that freaked me out! Dr. Rachel Hayes, on the other hand, spent an hour and a half with us, going over the reports, answering all our questions, and doing both an ultrasound and breast biopsy right then and there. She was puzzled as to why the mammo and two ultrasounds I'd had done here in February showed clear, when obviously something was going on. She found the mass immediately during the physical exam, confirmed it with the ultrasound, and followed up with  a biopsy.

Because I'd gone from having undetectable swollen lymph nodes (found only by accident when I had a CT scan to check for blood clots in February) to having hard, fixed and palpable nodes 2-1/2 months later, Dr. Hayes wanted me to see a medical oncologist asap. So a few days later I met with Dr. Dolly Quispe, who also went over my records and then slowly and methodically laid out what their recommendation was for overall treatment: 6 rounds of chemo because I'm HER2+; two of the chemo drugs are targeted specifically at the HER2+ cancer cells and should reduce it by 40-70%, the other two drugs are more free ranging so I can expect to lose my hair among other things. But chemo first means less surgery down the road. After surgery I'll receive radiation. For a year I'll be on Herceptin, with time out for surgery, and then an anti-hormonal pill. Both Dr. Hayes and Dr. Quispe strongly urged me to go ahead and start treatment before moving because this is an aggressive cancer.

I communicated with my oncologist in Nevada who said to do what I needed to do, and after seeing some physical changes plus the pain was getting worse, I decided to follow the recommendations and begin treatment here. I had my port put in last Friday and my first chemo this Tuesday.

Moving things up like that -- since I hadn't planned to start treatment until after we moved to Nevada -- put me on the fast track to getting all the dental work done so that was even more intense the last two weeks. Six crowns and a difficult root canal later and I was all done, just in time for them to put the port in. Ivan was worried about the procedure to put the port in and I told him it was a breeze compared to all the dental work I'd had done! My mouth (well, gums I should say) are still a little ouchy after having so much done so quickly. My port area is tender to the touch but doesn't hurt.

I was kind of a wreck leading up to Tuesday, over-thinking and over-planning -- and I still missed something. Isn't that the way it usually happens? Both of us misunderstood the parting information when I left the hospital last Friday, thinking the envelope we carried home had some of the cream I was supposed to put on the port area one hour before treatment. On the way over to Ft. Wayne on Tuesday morning, I went to find the cream and instead pulled out a prescription for the cream :( Oh well, es lo que hay. At the hospital they gave me an ice pack to put over the port which helped with the numbing just fine.

I'd been told to expect to be there 6-7 hours, but it was more like 9 by the time I was checked in, saw Dr. Quispe one last time, got labs done, and then finally began the round of chemo. I understand future treatments won't take as long, but the first time they really hit you with it. At least the two drugs targeting HER2+ cancer; one was an hour long, then an hour observation (it will be 30 minutes each next time) and the other was 90 minutes and will be 30 minutes from here on out.

I hate to be bored and idle, so I'd gone (ahem) maybe a little too over-prepared. I'm still working on Eisley's quilt, and had managed to get the binding machine sewn onto the front, so I took it and worked on hand sewing the binding down on the back. Would have gotten it finished too, if they hadn't given me an injection of Benedryl half-way through to counteract possible side effects. It didn't make me go to sleep, but it did render me incapable of doing anything other than lying back with my eyes closed and reminding Ivan of things that needed to be done. Hahaha! Poor guy didn't even get a break during my most drug induced state. [I was able to finish the binding the next morning, and would have been done but have decided it needs a wee bit more quilting in the border.] I also took my Kindle loaded with three new books, and my iPad and earbuds, none of which even made it out of my bag. I was happy I'd added a fleece throw because it was cold in there! I had the baby quilt over my legs and the throw snuggled up around my arms and neck. Ivan sat next to me, working on his computer and making phone calls -- except when I reminded him of something he had to do, that is ;)

So far no really bad side effects. Yesterday I had a splitting headache most of the day. What finally helped was an hour and a half in a dark room with a cool gel eye mask on. That brought it down to a dull ache, which I can live with. Some nausea, not too bad. At least not bad enough to open the box of anti-nausea meds which have a big yellow warning label on front "MAY CAUSE HEADACHES". Thanks, but I don't need any help with that! And they were right about the fatigue. I honestly didn't think I'd notice being even more tired than I already was, but I do. I made one short trip out yesterday to get some things at Walmart. I've had a really dry mouth, and they recommend Biotene mouth wash, plus I picked up some "just in case" meds because I know there are side effects that don't manifest until 24-48 hours after chemo. Other than that quick trip, I stayed home and worked on handling some business stuff. If this is as bad as it gets, I'll be super happy!

We have a place to live in Nevada!!! Tina spent so much time on our behalf, traipsing through apartment after condo after apartment... We put our application in on a 2 bedroom (which I never thought we could afford on our budget) but they got multiple applications and we were not chosen. So Tina was back on the hunt again and this time we got it! It's a one bedroom, one bath, but more than twice as big as our casita. I'm pretty excited because it ticks all my boxes: washer and dryer in unit, ground floor, no carpet (which messes with my asthma and allergies) and just under our budget. Plus it's got a gas stove which makes me very happy, as do all the built-ins in the living room and bath plus a large walk-in closet. Looks like we'll have plenty of storage. Big bonus points for Tina finding a place close to the clinic where I'll be getting my treatments: only a 12 minute drive! 

We aren't taking much in the way of furniture at all, so Ivan has organized a Upack pod to be delivered this afternoon and our small group buddies are coming to help load the heavier items. I think we'll get most of the stuff loaded tonight, and then throw in the last minute things Sunday morning. They'll be picking the pod up after we're gone. They leave it for three business days at either end, for loading and unloading. We won't see our pod until the 9th through 11th (dates flexible) so Ivan will take some bare necessities in the car. Our sleep number mattresses break way down without the air in them (but we'll send the bases in the pod), and I'm putting together a bin of kitchen must haves, plus summer clothes. Otherwise we'll be "glamping" for a week :) We did that back in 2012 when we moved into our casita, but this will be a definite step up, with running water, electricity and gas. And since we aren't taking much furniture anyway, we knew we'd have to do some shopping when we get out there. I've already been checking craigslist, IKEA and Tina sent me the link to a nice furniture consignment store. We really won't need much for that small space so I think we'll get it furnished fairly easily.

Ivan's driving the car out, and our pastor is going with him. What an incredible blessing! I was worried about him having to drive out alone. God is so good! And He is really using our church family to bless us in tremendous ways. Our landlords are friends from church and they told us not to worry about the furniture we don't want to take (95% of it); we can just leave it here and they'll rent it out furnished to the next tenants. It felt like a huge weight rolled off once we knew we didn't have to deal with hauling a lot of furniture out. Others have brought in meals, done our laundry this week, and just been encouraging in so many ways. A VSF tradition is to ask the departing family to choose a song for the congregation to sing their last Sunday and we picked "Be Thou My Vision", a long time favorite. Not sure I'll be able to sing it, though, since I'll probably cry through the entire service. We have loved this church so much; it's been a place of healing when we most needed it. And even though we've only been there a little over a year, we've developed deep relationships that I know will be life-long.

I waited too long to book my ticket and couldn't get a straight through flight until Thursday, May 3rd, so that gives me a few days to catch my breath -- maybe find that seat to rest on in the train? -- and be with dear friends from church. Hopefully that break will energize me and I'll be ready to unpack on that end and set up house keeping. On this end we've pushed hard the past three weekends, cleaning out closets and finally starting to pack in the past week (between various doctor and dental appointments). I wanted to get as much done as possible before Tuesday since we had no idea how I'd react to chemo. It's pretty exciting to think that by this time tomorrow our pod will be (mostly) packed and we'll have the time and space to deal with last minute things.

Other happy news: Kyle and Tina found a house this past weekend too! They've been looking since Tina got out there; knowing they'd sold their house here gave them the freedom to go ahead and buy rather than having to rent for a while. And they'll only be about 15 minutes from us! I think we'll be fairly close to our nieces and sisters-in-law too. Things are coming together, piece by piece.

If you pray, please continue to pray for us. It's just the beginning of this journey. We don't know what to expect and can only take step at a time, one day at a time. We've been here before, this launching off into the unexpected, and I know God will give us the strength to get through it, but it just feels like it gets harder, the older we get. I could move with one hand tied behind my back 40 years ago :) It takes a lot of work these days to do just the basics. And to be honest, I still haven't recovered from the big move back to the states. That was such a HUGE job that took months, and cured me of my collecting tendencies. I've not gone entirely minimalist (love books and fabric too much for that to ever happen) but I don't feel the need for a lot of things any more. They weigh you down, tie you down, in ways that seem burdensome.

What's burdening you right now? Do you find yourself on a speeding train too? Or are you tired of waiting at the station for the train to arrive? I love to hear what this community is up to, what's happening in your lives.

Friday, April 13, 2018

Research and Momentum

Does anybody else research things to death?

I spent the weekend googling every oncologist that will be in our network, checking out their profile on Healthgrades and any other place I could find reviews. Narrowed it down to two, which I then cross checked on the company website where they're both on staff. I was particularly impressed with one doctor from all the research, so reached out this week to see if he'd be willing to take me on as a patient. And Wednesday I found out he will! I'm so relieved. 

My first appointment with him will be May 8th, which gives us time to get moved.

Yes, you read that right. We're moving! TO NEVADA!

Nevada, where the air is dry and warm. Ahhhhhhh.

We started talking about moving when I was so sick in January and February. I told Ivan I didn't think I could survive another winter in Indiana. But then the whole cancer thing came up, and we thought we'd have to stay here for treatment.

Something I haven't even mentioned on here is that our son-in-law got a job in Nevada two months ago. Tina and the kids remained here in Indiana while she got the house ready to put on the market, and she did such an amazing job that the house sold in less than 48 hours! Seriously, click on this link to see photos of their home, and you'll see why it sold so quickly! For over list price! I'm so proud of her.

The thought of having both our kids and all our grandbabies on the west coast while we were stuck here in the Midwest was almost more than I could bear. It was downright depressing. Also depressing was the thought of being here through the end of the year, having my immune system (even more) compromised by the cancer treatments, and then trying to deal with another cold, damp Indiana winter. Ugh!

So my wonderful husband jumped into action and started making phone calls. Pretty sure they shuffle you from place to place to discourage people from actually following through on their quest with the behemoth that is our health care system. They wear you down until your arm and hand go numb from holding the phone, your mind shuts down from listening to endless elevator music while on hold, and you fall prostrate to the ground in defeat. Ivan is persistent by nature, though, and since 90% of his job is done on the phone, he was not deterred. And his persistence paid off! He finally found a human actually willing and able to tell him just how to go about getting our insurance coverage shifted from Indiana to Nevada. That was a week ago.

Since then the momentum has really picked up speed!

Getting my doctor lined up was the first thing on my list, but there's a lot more that needs to be done. The purging and the packing have begun, plus I still have some appointments coming up, and Ivan has a whole lot on his plate too.  It's going to be a pretty intense couple of weeks!

This move is more than just moving across country; Ivan will be looking for a new job, I'll be starting treatment for the cancer (looks like chemo will come first), and there will be all that goes along with living in a new place. So if you've been praying, keep doing it! We need strength and wisdom as we move forward.

And about that research...

I also learned that it's a good idea to get any dental work done before you start treatment; having bad teeth, and all the bacteria that goes with them, makes chemo tougher. Did you know that? I had no idea. See what I mean about researching things to death? But I'm glad to have found this out, because I want to do what I can to (hopefully) make treatments a little easier to handle. What that means in practical terms is that I have one to two dental appointments each week this month, to take care of multiple crowns, some fillings and a root canal. My mouth is a hot mess of failed crowns and fillings done back in the 80s and early 90s. Before we came back to the states, I'd been getting dental work done in Argentina, poco a poco as we had the money, but it's a slower process there. Here I've found a dentist with all the latest equipment who is capable of making crowns on site, so he does a whole section of my mouth at a time. Isn't technology wonderful?!

Nevada wasn't even on our list of potential places to move when we started talking about it, but with Kyle's new job there, it moved to the top of our list. Aside from the climate (a definite plus for my health), there are also other benefits to moving to Nevada. We already have family in the area, including a sister-in-law, two nieces and their husbands. In fact, one of our nieces opened her home to Tina and family until they can find a place of their own. Plus there are always cheap tickets in and out of Las Vegas, meaning it will be much easier to visit our son and his family in California (double score!).

I can't understate what a huge benefit it is, finding a doctor I feel is a good fit for my needs. During my research, I was especially impressed with what a particular oncologist had written for his bio page. Y'all know how I feel about going to extreme measures. When I read this, I knew he was exactly the doctor I wanted treating me: "In my field, outcome is generally judged by what we call 'overall survival'. In trying to achieve this goal, we often forget what the patient is going through to buy him or her a few extra weeks. This is why 'quality of life' is equally being addressed along side the survival benefit in today's clinical trials."

Yes and Yes!

Y'all, the next few weeks are going to be inSaNe! We appreciate your prayers soooooo much!