Moving quickly

It seems like things are moving more quickly - time (how is it almost October already), the days (mostly because of so much to do for work), how quick I can walk (yay).  Things are moving more quickly, and yet it still seems like sometimes the days are really long. 

We have settled into a bit of a pattern.  Peter wakes up before I do, but around 7:30 he checks to see if I'm going on a walk with him.  The vast majority of days I say yes, and I get up sometime within 10-60 minutes, take my morning pills, and get ready for the walk.  We take Stella, and our normal route is about half a mile.  We've noticed that it doesn't take quite as long any more.  Then we get home, Peter gets to work, and I make myself tea and grab something for breakfast, then finish gettting ready for the day and get started working.  

We have incorporated the farmers market into our schedule, and its nice to be able to go out Saturday mornings.  Because of covid, many of the vendors are offering pre-orders during the week.  We tried it this week, and it was nice to get things without them being sold out.  Planning to make beef stroganoff this week, and do something with the lovely patty pan squash I found last week.  That same vendor had small pickling cucumbers, and I got about 3lbs last week.  I was able to sterlize 6 jars on Wed and make the pickles on Friday.  I still have a few sweet dill jars, and one hot dill jar, from last year, so I decided to do savory.  I made 2 jars each of dill and garlic, dill, garlic, and shallot, and dill, garlic, shallot, and basil.  Last year I tested a bunch of flavors with quick pickles, and if I remember correctly these were my favorites.  Either way, it will be nice to have savory pickles too. 

We've been getting more information about our siblings weddings, and I finally got up the courage to ask my team if there's anyway they feel like it could be safe for me to attend.  I was shocked when they responded that they think it could be possible, if I wear a respirator with face shield, the other guests are masked, and we stay distanced.  I have clinic tuesday and will get more information, but I'm hopeful.  The nurse who is assigned to me said that, basically, the whole point of getting the transplant was to be at family events like weddings, so they want to see if there is a safe way.  Of course, theres still some doubt on my part because it is a risk, but I also do trust the science.  Obviously things could change as it gets closer to the weddings, but at this point I'm hopeful that we can make it work. 

Peter and I decided to sign up for Stitchfix after talking to our friend, and we both got our boxes this past week.  It was kind of fun seeing what someone picked for us, and we each decided to keep two items.  I'm not sure that we will stay with this long term, but we are both going to give it another month.  Both Peter and I tend to be clearance/bargain shoppers, so its weird to pay full price for something.  

We got our absentee ballots and the plan is to drop them off at the Durham county board of elections in person on Tuesday.  I felt pretty emotional voting for Biden/Harris, and hope that they get elected so that a plan to get covid under control can happen (among other things).  I'm saddened by the news of the passing of Ruth Bader Ginsburg, and feel a strange mix of emotions overall.  

I was finally able to focus long enough to edit Grandma Neukirch's Storyworth (Storyworth is a company founded by one of my Dartmouth classmates.  You pay a fee, and then pick questions to be sent to a loved one every month.  At the end, it gets turned into a hardcover book.  I highly recommend it - we did one for my grandpa last year).  One more round of editing, and then we can send to print.  The plan was to do that in February, but it got sidetracked with everything going on.  

I completely get that covid fatigue is settling in.  But please stay safe.  Wear masks around other, especially indoors.  Be wary of going to restaurants indoors or big family gatherings - that is where a lot of cases are coming from now.  We are doing socially distanced, mask wearing, outdoor meetups with a few friends in our yard.  Our setup for that seems pretty good.  

This coming tuesday I have a clinic biopsy, and wednesday marks 6 months post transplant, which is incredible.  I'll keep you all updated as to how things go.  Assuming the appt goes ok, from there I go to every other month appointments.  That seems crazy to me! But also nice to not have some much time related to medical things. 

What a week

 This last week has been really good.  I got in morning walks 4 days last week, with one day missed being because I didn't sleep well, one because I was going to have a long work day so was conserving energy, and the third the day after the long work day and I was tired.  

We have a few "couple" friends down here.  The ones we see most, Colleen and Matt are going to be moving.  Its both happy and sad.  Happy,  Colleen got a job up in Boston!  She finished her PhD this spring, and her job offers went away with universities closing down, so this is great.  It's sad because we won't see them as often, and also because we are in the midst of playing pandemic legacy season 2.  They came over on Friday night, and using our outdoor setup where we have a canopy over the deck, our outdoor table, and fan set up so the air is blowing away from me, we played while masked and enjoyed a dim sum dinner.  We actually won our game after having lost the last 4 times (the game is legitimately hard).  So now we have 4 more 'months' to play to finish (the game is broken up into 12 months, and you can play each twice).  While Colleen will be moving next week, Matt will be here at least another month.  So we are planning to try to play the rest of the board game with Colleen video chatted in.  It is a cooperative game, so it won't totally be the same, but will be much easier to video in one person versus 2.  We are really hoping to finish the game, as we've put in a lot of hours on it so far.  Initially, my surgery got in the way as I was hospitalized, and due to the actual pandemic we haven't been able to have Colleen and Matt in the house, so that has made it so there have been big chunks of time between games.  Either way, it was nice to hang out with them.  Since we know we will be going to Maine again for years come (just not this one), its good to know that we can stay in touch with them. 

We were up late Friday night playing, so I slept in a bit on Saturday.  AT&T came in the early afternoon to hook up fiber internet, as we've been having issues with ours from Spectrum.  When they were done, for some reason I had a hankering for an Italian sub.  The issue being that I can't have cold lunchmeat.  Peter needed to run an errand, so i tagged along.  I looked at some menus along the way, and we decided to try Jersey Mikes, since they have both hot and cold subs.  We went to the one closest to where Peter's errand was, and as Peter was going to go in and order, we noticed that despite a sign saying masks are required, there was someone in the store without one. This was a complete no go.  Luckily, there are a bunch of these around, so we went to one that is close to a park with a pond.  Peter went in, and the staff was really nice about grilling up my meat & cheese, then putting it on the bun.  We went to the park in Cary, which was TEEMING with people, so there was no way we were getting out of the car to eat.  I was quite hungry at that point, so we ate in the car with a view of the pond.  The sub was good and hit the spot.  It's nice to know that is an option for the few times I feel like a sub.  We decided to try another park that has a smaller pond with a walking trail arouond it on the way home.  This one was surprisingly not too busy except for the basketball court.  We did two laps around the pond, which is about a quarter mile each lap.  The day was beautiful, and we are thinking we should do this more often!  We headed home then, and invited our across the street neighbors over for a board game.  We did the same set up in the back, and it was nice.

This morning I actually woke up and was somewhat functional before 8!  We did a morning walk with Stella. After that, I put in our Instacart order (I've started to just add things throughout the week so it does not take as long in the moment) and had a cup a tea. My childhood friend Tabatha sent me a subscription box that has 4 loose leaf teas in it.  I was suprised and excited, and the first one I tried, an Oolong from Thailand, was delicious.  All the teas are locally sourced from small farmers, and it comes with cute little cotton bags for steeping made in Kansas of NC cotton.  I'm looking forward to trying the other three - a lady grey, a green tea with toasted rice, and an herbal with a blood orange flavor.  I also love the idea of a washable steeping back - I got four with this months.  I don't know if they send the bags every month but if they do that will be nice in the long run. The instacart order was ready sooner than expected, so Peter is off to go get it.  It is now not quite 10am, and I am feeling pretty darn productive so far.  We have plans for our next door neighbors to come for a game in the early evening, and to do a virtual game with my cousin Liz and her husband Brad sometime this weekend.  

In terms of work, I had a few just about, or over 8 hour days this week.  We also launched our new online coaching training, which has been what I've been putting in a lot of hours for the last three weeks.  It's been adapating the material we already have from a 4 day in person to a 6 week online setting, and learning to use Sakai, which is an online system Duke uses for course.  It was a bit of a learning curve, but I'm really happy with how the site looks and I'm hoping that the new coaches find it easy to do.  We have our first online training session next saturday.  

Hope you are enjoying your long weekend, that you're finding a new normal where you can socialize safely, and that you're productive when you want to be.   

Friday Night Into Saturday Morning Musings

 Its the end of a work week.  I would say that this week is the first that I have put in 5 full days worth of work.  6+ days each day, and super productive.  That is exciting for me, as just a few weeks ago that was not possible.  My intern from last year started back for her last term, and its both been good to have her back, and also has been motivating to get more done.

I have a few big projects I'm working on that are exciting, and need to be done within the next few weeks, so that is also good, as once that happens then things will start to settle into more of a new normal.  

Tonight after work Peter and I did an online board game night with a friend, which was nice.  I also got to talk to my younger brother Shaun for a bit to hear about his engagement to Melanie and how he proposed.  It was good to hear him so happy.  The wedding is mid December this year, and again I am really hoping that coivd calms down significantly by then so there is a chance that I can be there.  All of this is so hard with being immunocompromised.  I haven't asked my medical team yet what they think, in part because I'm not sure I want to hear the answer just yet. 

I will probably be putting in a few hours of work this weekend as one project is so close to being done.  Otherwise, I have a baby quilt I should work on, and am in the middle of two books that are really good. 

I think my biggest issue right now if figuring out how to work exercise into my schedule.  Part of this is because with med changes, my bp is not as good as it was before, so I'm nervous to make it too high.  The other part is that I'm at the point where I actually am getting things done, an it feels a little like I missed my 'window of opportunity' where putting in the exercise would have been easy (which was when I started cardiac rehab).  I have found out that I don't need extra calories for healing anymore, and I definitely would like to lose some of the excess weight I've gained since transplant as that would help my lower back, my bp, and me just feel better. Weight gain after transplant is normal, in one study an average of anywhere from 7 to 18lbs.  I came home at least 20lbs more than pre-transplant, and its not super comfortable.  So that is my big thing that I'm thinking about now.  Since I know it is safe not be on more of a "normal" eating plan, and that I don't have to snack every time I think I'm hungry, I think that will help.  I do know that movement is going to be important, and the truth is that since I'm at home for work and everything else, there just isn't as much movement as I would like.  If anyone has ideas of good completely contact free "errands" or things I can do to get out and moving (now that the weather is better), I'm up for ideas. 

*******

I had meant to post last night and forgot.  This morning Peter got me up a little early, and we went for a walk at 8am with Stella around the neighborhood. He has been doing this daily around 7am for two or three months, and its been too early for me.  It felt really good to get up and moving so early.  Then we got home and I had my yogurt and tea for breakfast.  Peter realized that, being Saturday, the farmers market was happening just up the road.  I got excited, as that is one thing that I can safely do!  We grabbed our masks and headed over.  

The market was set up with the tents having 6 feet between them sideways, and much more space inbetween the fronts than usual.  They even had painted dots on the ground 6 feet apart for people to stand on.  Everyone had a mask on, and everyone was safely distanced.  Finally a slice of normalcy!  I got pretty excited.  We got some great finds - husk/ground cherries (its like a tomatillo with the husk, but is sweeter.  Still tart though.  They are delicious) a spaghetti squash and 3 small summer squashes from the first vendor, fresh made chorizo and bangers and smoked jowl bacon from another place, fresh monkfish and wahoo from another vendor.  We also got some spinach gnocchi and potato, romesary, and asiago pierogis.  I am beyond excited about cooking this week.  There weren't many veggies other than peppers at the market, and no leafy greens, but thats ok.  As much as I love farm fresh greens, it may be better to do store bought ones because of the extra level of washing involved. 

When we lived in RI and there was a year-round market (winter went inside), Peter and I would go every Saturday morning to do the bulk of our shopping, and then go to the grocery store later in the week for whatever else we needed.  I think we may revert back to that model.  We can get chicken, pork, lamb, sausuage, fish (first time I've seen them at this market) at the market with all the vendors there today, and there have been vendors with beef other times.  Since Peter and I both want to eat a little healthier, and we felt great when we used to get all our meat from the farmers market, it may be a good time to get that back into our rotation.  Plus it is one outing a week that I can actually do!

We will see what the rest of the day holds, but as of right now its only 10am and I feel quite productive.  We got everything put away, cleaned the veggies, and husked and cleaned the ground cherrites so they are easy to eat.  I even made some limeade to have in the fridge.  

Also, good to know that Peter and I got new phones, which don't work with Verizon.  We started with t-mobile and both have new NC numbers now.  If you haven't gotten the new number from us yet, reach out and we are happy give it to you.

Here's hoping you have a good weekend, productive if you so wish it be, but good either way. 

5 months post transplant

 It's the 23rd.  Funny how that day of the month didn't used to mean anything, and now it always will.  Today is 5 months post transplant.  It's funny - in some ways I can tell, and in others, things almost seem like nothing ever happened.  Today was a day like any other.  I woke up late (I've been having trouble falling asleep and am not sure why).  Took my meds, etc.  Peter was out in the shed working on his latest franken-mower (he is making one of our lawnmowers remote-controlled using parts from a non-working old wheelchair he got off craigslist), and I realized that it has been a LONG time since I've really be outside.  

I but on shorts and a short sleeve top since it was still in the mid 80's, and had a stroll thorugh the yard.  Lots of rotten pears on the grass beneath the pear tree, and my garden is completely overgrown.  I had such an urge to weed, but I'm not allowed for another 7 months.  Peter agreed to go on a walk with me, so we got Stella and walked around the neighborhood for a bit.  It was hot out, but not super humid, and I'm hoping this means that I can start to actually get outside again.  

Otherwise, I did some reading (I'm onto book 7 of the outlander series now), and it was an easy day.  The type of weekend day we often had before tansplant.  Some things are different - mostly that I have more energy, more pill alarms, and that I'm holding onto more water weight.  Getting comfortable is a little harder, and I think I need to start to working out my abs more to counteract my sore back.  I'm starting to think that some of my "water weight" is actual weight from having to eat so much more since surgery.  I keep thinking that my increased caloric intake will go away, and some days it does, but others I'm just ravenous. 

I think in some ways, the most interesting thing today was that I was just bored.  I read, we watched a little tv, I putzed on my phone, but I didn't really have anything to do.  I'm recognizing that this is just somewhat my state of being while the we are living in the times of covid, and funny enough am looking forward to tomorrow and needing to work.  

I have some creative projects that I could be working on/starting on, but none of them really were making me excited today.  It was only really towards the end of the day that I realized it is 5 months later, although if I had really thought about it I would have realized because my prednisone dose went down today. 

I'm still waiting to hear from the new coordinator about my biopsy results, but I'm assuming if it was bad they would have reached out already. 

So its a big day in some ways, but just a day.  Another day of figuring out this new normal being in quarantine.  I see less people walking around the neighborhood - I wonder if that is because people have started going more back to their normals.  Someone once said to me that things are close to normal 6 months post transplant - given covid, I don't see how that is possible.  But I guess I just do what I've been doing- taking it a day at a time.  Make progress in my movement/exercise so I feel better than before transplant.  We will see what the next month brings. 

Clinic and Convention

Today was a clinic day.  Peter and I arrived at a quarter to 8, and got to clinic early.  After a short wait, I got my labs done, and was taken back to a room.  One of my favorite doctors was on today.  I met with her, and we reviewed how things have been going.  I had a short wait, then I had my clinic biopsy.  They used a TON of lidocaine in my neck, and I barely felt it, which was great. 

I got home, and took a long nap.  After I got up, it was a lazy day.  Overall though, I felt better than I usually do on a clinic day, which is encouraging. Peter and I decided to have lobster bique for dinner again today, and it was delicious. 

Tonight, I decided to watch the Democratic National Convention.  I won't lie, I was really excited in the primary, but my first few picks didn't get through.  I like Biden, but haven't been excited before now.  I was really impressed with how they did the roll call, and found myself with tears in my eyes a few times.  Then there was a bit about healthcare and the ACA - something that could one day literally save my life (as before it, I was uninsurable, and I would be again without it).  Due to Biden and Obama, transplants are no longer considered "elective procedures", and you can't be denied health care insurance coverage. 

I am hopeful.  Many of you know I'm very liberal, and I would ask, that even if you aren't, what is important to you?  Biden/Harris have plans on how to get this pandemic under control, on making sure that people have access to health care, and Biden has experience getting this country out of a recession.  I truly, truly am hopeful that the vote goes to Biden in November, as I worry how things will go in terms of controlling covid and so many other things otherwise.  We need REAL leadership for the USA, for a President and Vice President, in order to get things moving in a direction that will help the majority of people in this country, not just the top 1%.  

I'm not sure how I will support Biden/Harris in the election outside of my vote, but I'm looking into options.  I have never felt called to volunteer for a campaign, but I truly feel like right now it is a life and death issue for me, so I must do something more. 

Please stay safe everyone.  Its scary here in NC - UNC Chapel Hill has outbreak of covid in the 2 weeks since they opened up campus, so they are going to fully online courses.  In one week, there was more than a 10%  increase in positive cases on campus.  I really hope that they get this under control, that all the students and staff who tested positive have mild cases and get better quickly, and that this does not spill over into the greater community. 

Busy Weekend

 I've been feeling a LOT better since I've been home.  I need to get back into my cardiac rehab routine, but otherwise things are going well.  I got in the longest days of work I've done in a while on Thursday and Friday, which was great.  

Peter's birthday is tomorrow, Monday.  More than half of his birthdays since I've known him we have spent in Deer Isle, Maine.  Due to Covid, that wasn't an option this year.  We have both been missing Maine, so I decided to bring some to him.  I was able to ship lobsters overnight from Stonington, Maine and they arrived Saturday morning.  We were really excited.  I had gotten corn on the cob and potatoes that we boiled.  Due to the cost of shipping, I decided to get 4 lobsters for us, and make lobster bisque on Monday (his actual birthday).  The box arrived Saturday mid-morning, and the lobsters seemed pretty happy.  We did some things around the house, and decided to do an early dinner.  We boiled the corn and potatoes, and in a separate pot decided to boil the lobster.  We even took out our fancy plates (really small serving platters) to eat on.  I had ordered a ceramic butter warmer that stays warm with a tea light, and a set of crackers and lobster forks.  The butter warmers arrived on time, the crackers later in the day.  We managed though. It was not quite as good as in Maine, but by far the best lobster I've had outside of being in Maine, and worlds better tasting than what I've gotten at the grocery store in the past. After we ate we made the other two lobsters, and once they cooled I used the crackers (which had arrived) and harvested the meat for lobster bisque and shells to use for stock. 

As we made the lobsters, I got to thinking about Maine.  Peter's family usually puts some water from the ocean into their huge kettle, brings it to a boil over a campfire or propane burner, puts in the lobsters, gets it to second boil, then lets it finish cooking.  When they are done, the whole pot is poured out onto the rocky beach.  Then, to eat it on the beach, you find two good size flat rocks and use those to smash the shells open.  It is a very enjoyable experience, and yet I realize that I won't be able to do it like that anymore.  I might be able to eat the lobster on the beach, but we may have to make me one in the house and bring it down.  I definitely can't use the rocks to crack it anymore.  I think before the food poisoning episode, I was thinking that it wouldn't be a big deal.  Now, all the potential areas that bacteria could get into me from this are standing out.  It's ok that it will have to be different, but it's also a reminder that things are different and I'll really have to put a lot of effort into things.  I already knew I'd need to get bottled water for when we are there, as I can't drink well water, but it's another thing.  Don't get me wrong, I'm very thankful that I'm alive to be having this issue, but there are some days that it just is easy to be frustrated at the changes and the energy it will take in the future to stay safe. 

Today, as I made the lobster stock in the pressure cooker, I cut up the veggies for tomorrow (since its best to throw in the trimmings of those into the stock pot).  I started with two leeks, and when I checked the recipe for how much I needed, realized I did not need any.  So I had two extra leeks to use up.  We did not really eat more than a few of the potatoes from last night, and they were in the fridge.  We also had a large package of chicken drumsticks from our Instacart order Friday.  I have been reading the Outlander Series, part of which is set in Scotland, and in it they mention cock-a-leekie soup.  I had wondered what it was, and it is a Scottish soup with chicken, leeks, onion, and barley (and/or potatoes).  It also needs thyme, which we bought for the bisque.  I decided that since we had all the ingredients, and Peter was willing, we would try it.  I boiled the drumsticks, onion, leek, water, bay leaf, barley, salt and pepper for an hour.  I removed the chicken and bay leaf, then used the immersion blender to mix together everything.  The broth was nice and thick and smooth, and had a very subtle flavor.  I took the meat off the bone of the chickens, chopped it up, and added that and the leftover potatoes (in chunks) to the broth, and we heated it all together for dinner.  It was really, really good and very filling.  We even have 4 jars of leftovers.  Peter and I both agreed that we should add this to our recipe list, and I was excited as Peter is often more discerning about soups than I am (I like them all). 

So tomorrow morning I'll order some birthday cupcakes from a local shop, and a baguette from Panera, and Peter will go pick up both (I still can't go in places).  Then for dinner I'll make the lobster bisque, for which almost everything is already chopped up (or partially chopped up), and we will have it with butter bread for dinner, followed by birthday cupcakes. I can't imagine how I would have gotten through all of this without Peter, and I hope that I can make the day as special as possible, because he deserves it.  

As I'm having more energy, I am also feeling more like cooking regularly.  If you have any great quarantine recipes you've found, feel free to share them.  I think we both would be happy to have something a little new. 

Home sweet home

 Yesterday I got up fairly early, wet my hair so it would look ok, and then got up to sit in the chair.  My back was starting to really bug me from sitting and laying down so long.  The NA was great and brought me warm bath wipes, and I got clean again. 

My breakfast came, and the medical team did rounds just before 9.  They told me I could go home later that day, but I needed to do an IV of magnesium and one of blood (as I was anemic).  They went over med changes, and said it would most likely be around 3pm that I could leave. Peter and I were both delighted at the news.  After the doctors left, I got on my weekly therapy via video - As a therapist, obviously I believe in going to therapy myself, and its been helpful to process things with more of a "neutral party" through this journey.  We got about half an hour into the session, and then my nurse for the day and the trainee nurse with them came in to give me meds.  Seeing as there was a trainee, which would require my attention, we cut our session a little short.  It was a good thing, as it took 30 minutes between the beginning and getting all my meds/the IV started. 

I decided to go for a walk on the unit, and did a half mile, figuring that since I was feeling better, I needed to try to get into my normal routine as much as possible.  Then I came back and sat in the chair and read.  Peter arrived around 2pm when the blood was done running, and then it was time to wait.  He had brought me clean clothes, and I changed into them.  Then we waited for the discharge paperwork.  It took a little over an hour, but we were free to go.  And they even let me walk out on my own, although the nurse had to go with us to make sure I didn't fall. 

We got in the car around 4, and then went home.  It was a lazy night at home, and Stella jumped up to cuddle with me on the couch, which she doesn't often do, so I could tell she missed me.  After watching another episode of Great British Baking Show, Peter and I headed to bed early. I think we were both drained from the day. 

Today, I got up around 9, leisurely had breakfast and did my weight/blood pressure.  They gave me so much fluid while inpatient I'm up about 10 lbs, so they restarted my diuretic which is good.  I then went to work, and other than a break for lunch worked 11 to 5:25 without a problem.  I had an unexpected therapy session when I called my Monday patient, who I wasn't able to see, and they were free to meet right then.  I also talked with a colleague who recently saw one of my old long-term patients last week, and we decided to leave it up the them.  I called that patient who decided to come back to me, which is exciting.  So now I have 4 patients I'll be seeing regularly, and 1 who is already back at college.  I can probably see another few starting soon, so I'm slowly getting back to it. 

We had a good ATLAS staff meeting, and it was exciting to have my intern for the fall (who also was with me all last year) join the meeting.  Things are slowly getting more back towards "normal", and things are figuring themselves out as we go. 

We didn't have much in the fridge so ordered takeout, and Peter was pretty horrified at how many people were eating in the restaurant - we will cross that place off our list.  I got in a large Instacart order for Peter to pick up tomorrow, so then we can get back to cooking. Tonight has been quiet and I'll probably go to bed early.  I'm just really grateful to be home. I'm also pleased that my gains from prior to this stint in the hospital seem to have come back already.