I’ve started and stopped this update a few times. I think it is finally time to get it done. My procrastination is exhausting. 😂

I’m sitting on the front porch swing at my parents’ home in the country about 2 hours from my house. It couldn’t be any prettier. The sun is about an hour from setting, the humidity is low, the sky is blue and there’s a gentle breeze now and then. I’m living at a country inn – or at least it feels like it. Mom has wrapped the swing chains in pretty silk flowers, her day lillies are blossoming along the porch railing and she’s made me cozy with lemonade, a fleece blanket and a pillow perfectly placed behind my back.  Dad has made a rare trip out to pick up some Mexican steak fajitas. Aaaahhh. Not a care in the world . . .

Okay. Maybe that’s not true. 😂 It sure sounds nice though, and it truly is. But as you’ve anticipated, there’s more to this story. I’ve been holed up here since March 12th because of the pandemic, I’m being told to seriously start thinking about a double lung transplant, I’m separated from my family, and my body has suffered from malabsorption since acquiring the Norovirus last fall leaving me with atrophied muscles and weight loss.

With chronic Graft versus Host Disease of my lungs, I’m always on guard for infection. When you come to my house there is a sign at each door that reminds family and friends to remove shoes and wash hands. Whenever we have a sickness in the family, we immediately separate; me to the bedroom and the other person to their room, and if warranted, I’ll leave for my parents’ or that child will leave for my parents’.

We were quick to get me out of town in March – as soon as we heard of the first diagnosis of the Corona Virus in our county. Soon after, the kids were out of school and the new pandemic life began for all of us. So, I’ve been at my parents’ for 14 weeks now.  My family and I were separated for 3-4 weeks as I self-quarantined and then they joined me here for 2 weeks. The girls returned to our home with Jonathan’s parents for one week and then the four of them went to Ohio for a week. Later, Jonathan and our son joined them for a week in Ohio and then Jonathan and the kids returned to our home in Tennessee. That’s where they are now. I’m confused by all of that and you are probably too. Bottom line is that there has been a lot of shifting around.

I’m still extremely careful here at my parents’ home and Jonathan and the kids are “reopening” with everyone else for the most part, including Amber returning to working outside the home. The separation from friends was the hardest thing for our teens. Our 9-year-old isn’t at that point, but the girls almost felt like they were missing oxygen. They really held out for a long long time, but boy were they thrilled to see a friend or two when they returned from Ohio. The sacrifice now is me being here and them being home. Jonathan has his hands full! He’s doing a phenomenal job working his own business, taking care of the home and caring for the kids. I do what I can from here, but there’s no replacing being hands-on. I think they are getting into a routine, so that’s making it easier. I miss them so much. Thank God for texting and FaceTime/Zoom!

So, starting last November I started having G.I. problems. I won’t say much about that because I wouldn’t want to know your gross symptoms, so I’m imagining you don’t want to hear mine either. Anyway, it was pretty bad. Normal people get the virus and it goes away pretty quickly – we are talking days, but for me we are talking weeks/maybe months. It’s really unknown exactly what’s going on now. (Update: Friday’s (6/19/20) test shows I still have the Norovirus from last fall.) I continue to have problems and it could be something new, could be the Norovirus is still active (there is no treatment) or maybe it’s aftereffects from the virus. The results of the malabsorption is about a 20 pound weight loss since January. My muscles are atrophied and my strength is pitiful.

At my Stem Cell doctor’s appointment last month, my doctor brought up the possibility of a double lung transplant again. Right before the pandemic, my cardiologist called me out-of-the-blue. I only see him every 6-12 months and I have a very strong heart (thank God for that!), so hearing from him was a little surprising. He said he’d been thinking about me, said I am “young and vital” and that Vanderbilt has a wonderful new transplant physician. He wanted to see if he could pursue the idea with my team. The pandemic hit and I didn’t hear back – a little to my relief. We did the whole transplant work-up 2 years ago, and I was rejected because I needed to be 5 years in cancer remission. That took a great deal of pressure off of me and I was happy to have it behind me.

Now that 5 years cancer-free has come and gone,  they are reopening my transplant possibility. My stem cell doctor and pulmonologist agree it is necessary to consider this again. The main concern is that I’m extremely susceptible to getting a life-threatening infection at anytime. But, of course, getting new lungs is not easy and does not come with any guarantees. Of all transplants, it appears to have a lower prognosis in regards to longevity and I will likely end up with bronchiolitis obliterans (which I have now).

So, we are in prayer about this huge decision. I plan to seek out all the information I can from my many doctors, get evaluated by the lung transplant team and research what I can myself/my family too. Of course, I continue to pray for God to heal me. That would be the best option! To have my chronic Graft vs. Host Disease stop, and any lung damage to be healed or compensated for would be a true answer to prayer. Although, I do pray for God’s will above all things.

I’m honestly tired. Please pray for our decision-making abilities, our strength/endurance in all things and that we will ultimately trust God in the process.

I know this update is a little confusing and the photos are a bit random. It has been a long time! So, just trying to give you a feel for what’s been going on.

Here are a few pictures from 2019 too:

I will keep you posted as things progress. Please pray for physical healing, mental/spiritual well-being and for God’s goodness to be seen in all of this. Ultimately, it is all about Him.

I never posted this. Oh well. It’s only been 6 months . . . It’s Christmastime! Can you believe it? I never do. Ever since I became a mom – 17 years ago – Christmas seems to come around on a faster pace. As soon as we pack up Christmas, it’s time to unpack and vice versa. As soon as little painted faces and costumed creatures come around in search for treats, I know that the starting gun is about to be sounded, and it frustratingly stirs up my anxiety. Isn’t that a shame? I truly hate how the celebration of Jesus’s birth is taken over by the onslaught of perfectionism for the ideal family celebration – basically well meaning but each area overdone; gifts, decorating, parties, traditions, etc. Each good on its own in a measured amount, but they all get hyped-up and completely distorted which leads to a complete distraction of the holiness of the season.  Maybe many disagree with me, but I sure wish we could turn the pace and the volume down a bit. I feel sad that I often feel relieved when Christmas Day is over, and then we can kick up our feet and breathe and hopefully remember to give God the glory he deserves.

I’m at my parents’ home right now. It snowed last night and it is so beautiful on their pond with a couple of snow covered mountains in the distance. My bedroom looks out to the snow through a plantation shuttered window with a Christmas wreath and big red bow framing the scene. Beautiful and peaceful.

I’m here recuperating. My parents home is just a couple hours away from ours and it’s our escape plan when someone gets sick or I get sick.  A few weeks ago it was our son, who escaped here to get over a sore throat and cough. Now it’s my turn. A couple of days after Thanksgiving, I ended up in bed for a week with a stomach bug, while also fighting a cold and experiencing extreme eye dryness with tenderness and occasional pain that was severe.

My stomach is clear now – thank goodness! Now I just have eye dryness and the cough from my lingering cold. It’s good to try to keep this at bay so that there’s no need to go to the hospital or let the situation worsen (which can scar my lungs – making my disease worse).

It’s been kind of a confusing year with my health, but overall I’d say I’ve improved. The last time I wrote, I had had an excellent improvement in some of my lung function testing. Then, the latest test in November showed that same area of testing was back to my original number – and my pulmonologist wonders how real the spring result was even though we retested it time and again bc of the great improvement.

I’ve been all over the map with the practical use of my lungs. At the beginning of the year I had times that I had to use my wheelchair and then at my peak in October I walked on the beach for 30 minutes while Jonathan carried a tank of oxygen on full blast. It was heavenly! If I can crank up the O2, I can do a lot more physical exertion. The practicality of hauling tanks and replacing them frequently is a logistical issue, but at least I can do it with pre-planning! I even walked in my neighborhood a few times this fall which has been years. Its really a canundrum since I can do those 30 minute jaunts when I plan it out, but then I get winded do the simplest task around the house b/c I can consistently bump the oygen up and down depending on every movement I make, so I usually try to consolidate my more physical times where I turn up the oxygen for a while and otherwise try to keep it at my baseline.

Despite the last pulmonary function test in November not looking as encouraging, I’m still praying