Posted by: mettapanda | August 2, 2012

Lots of new stuff – all good

Hi all!

It’s been a while, so I thought I’d do a quick catch-up.

First of all, my health has been great (*knock on wood*).  After my week or so in the hospital in January / February (with zero neutrophils causing a fever), I’ve been happy and fine and wonderful.   I’ve been able to travel all over the place; Tim and I took a road trip to NC to see friends and drive the Mini at the 10th anniversary of Minis on the Dragon.  We also managed to visit with cousins I haven’t seen since 1995 and visit some of the old haunts of Tim’s relatives.  In June we went with various combinations of family out to Matinicus Island, ME, for a week.  (bliss 🙂 )  And in July I went with a friend on a spur-of-the-moment (~48 hrs notice) trip to Disney in FL.  So nice to be able to just pick up and go when we want to!!

The biggest news from transplant-land is that I received a response from my donor family in the form of a 4-page letter.  My donor’s name is/was Suki; she was originally from Korea but moved to the US after marrying an American serviceman.  She was 65 years old when she died from a stroke.  Her son (her only child) is the one who wrote the letter.  I plan to respond soon and hope that we will be able to exchange identifying information (including pictures and email addresses) sometime in the next few months.

The other biggest news is that, thanks to much encouragement, I’m now sharing my original songs through performance.  My debut was July 27 at an open mic, and I hope it will just grow from here.  If you are interested, you can watch the videos and find out about upcoming performances at The Spiritual Songstress.

That’s it for now!  I hope everyone’s enjoying their summer.

Love,

me 🙂

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Posted by: mettapanda | March 5, 2012

The Sun is Shining

It is an amazing feeling to be healthy.

Okay – so I’m on a nebulized antibiotic for the first time since the transplant (14 months ago), which is annoying.  I’ll even admit that I had some down moments about it.  But then, I’ve been feeling fine.  And yesterday –

Yesterday, I walked/ran a 5k.   Yes, I walked a 5k – slowly – back in May, 4 months after transplant.  But I’ve never run in a “race” in my life.  Other than dance, the last time I was in any organized sports activity was in fourth grade, when I was on a basketball team for one year.  (I got one basket the whole year.)  A friend of mine organizes a laid-back 5k each month – no fee, no t-shirts, no snacks or water – www.nobananasraceseries.blogspot.com.  She sent out a note at the beginning of January encouraging people to come out and walk it, with the goal of running the full 5k by next January.  I’ve been looking for a goal.  I’ve been going to the gym, vaguely thinking of jogging a little, but not really knowing what to do with it.  So I decided to try this 5k thing.   In February, I was just getting out of the hospital.   But this month – yesterday – I went for it.

The organizer, Ruth, was so excited to have me there.  And my “coach” John – a friend who runs marathons and has been encouraging me in my exercise – came to run with me and “pace” me.   And I did my intervals the whole time – 5 min walk, 1 min run – and I finished in 59 min 58 seconds. 😀

😀

I kick ass.   Thanks, Donor.   These are great lungs. 🙂

Posted by: mettapanda | July 18, 2011

Thank you for an amazing 6 months!!

July 7, 2011

Dear Family and Friends,

As I celebrate my 6-month anniversary with my new lungs, I wanted to take this opportunity to share with you how much your support and encouragement have kept me going, as well as some of the highlights of this amazing journey thus far.

First of all, there are many of you who sent gifts, gift cards, checks, food or even “just” cards who I never properly thanked. Please know that your gift was much appreciated – and still is – and that my delinquency was due to, well, learning how to live again!

The support I received from all of you – including some friends of friends, or even friends of friends of friends – was astonishing. I expected to hear from my church – though was still overwhelmed by the love and generosity. I didn’t expect to be on prayer lists of many different faiths, all over the country and world – including a mass at Lourdes. I didn’t anticipate weekly cards from my mom’s church (which I’d never attended), blankets, games, a big box of frozen soups, a beautiful origami card with origami boxes and cranes, as well as the cranes sent from my church – and this is just a small sample.

Even prior to the transplant, the love I received was palpable, culminating with the prayer shawl. I still feel that shawl has serious energy and connection to the Universe / Divine: I received it on Wednesday and received my call for new lungs on Thursday evening. In the hospital in Cleveland post-transplant, I had a (pain med-induced/encouraged) vision which included many women from my church, some whom I barely know, doing a Native American dance with shawls. I felt they were visiting me through the energy of the prayer shawl. Powerful stuff – and not just the meds. 😉 This is the energy of love, the connections between people and the Divine, across hundreds of miles or more.

It seems almost foolish to even try to thank those closest to me. They dropped their lives at a phone call, traveled hundreds of miles, kept vigil in the ICU, listened to me rave and rant about hallucinations, sat with me through training sessions when my brain threatened to explode, drew me pictures and decorated my wall, encouraged me to walk and exercise when I really didn’t want to, learned to empty drains and change dressings, comforted me through the sobfests and post-bronch puking, set me up in my temporary home away from home, joined me as my radius of exploration slowly – then quickly – expanded, and generally – possibly most importantly – were present with me through this whole process. Thank you. I love you, too.

To fully appreciate where I am now, let me remind us all of where I was before transplant, in December: I could walk only 4 stairs before needing a break; I was on oxygen 24/7; I was no longer in the church choir, no longer acting, and rarely attended church; I was able to plan on one activity a day (lunch with a friend OR rehab OR the post office) with the understanding that my daily nap would have to immediately follow; I couldn’t go to the grocery store at all. I couldn’t drive myself to a doctor’s appointment in Boston or even walk around the hospital when I was there – it was simply too exhausting.

The last week of December I was set up on a bi-pap machine for overnight use, but that was discontinued due to the lung collapse. The lung wouldn’t stay re-inflated on its own, so I was on a chest tube with suction, and the ‘weaning me off’ wasn’t working. I couldn’t exercise and got only partial CPT (both of which normally would keep my lungs healthier) because of the collapse / tube / suction. We celebrated New Year’s in the hospital, and I believed I would either get a transplant or die there; I might have given myself 1-3 months, at best.

Then The Call came at 8pm on Thursday, January 6th, and I received my new lungs on the 7th. It was a whirlwind, but the stars lined up and God and the Angels and all the devas and boddhisattvas were on our side. I still knock on wood and say Thank You: my surgery and recovery thus far have gone as smoothly as they could possibly go.

And now I have a whole new life. I get to choose how I want to live in the world, how I want to manifest my identity, how I want to share and give back. I can run up flights of stairs – even stadium stairs – or do wind sprints on the beach or in my backyard. I can walk with my team for the whole 5k (3.1mi) CF walk-a-thon for the first time in years. I can dance for 2 hours straight at a wedding reception. I can make a spur-of-the moment trip to my parents’ house – my first trip there in probably 3 years. I can travel out to Matinicus Island, ME – off-limits for the past 4 years. I can walk laps around a mall or around Downtown Lowell. I can go to big concerts (NKOTBSB) and be on my feet and dancing for most of 2 hours. I can host a 3-day Thank You party for all of my family and friends and not get exhausted or sick from it.

Most exciting, I think, is that I have a future again – one I barely could dream of when I was well (as well as I was). I’ll be going to school in the fall in a part-time Interfaith Ordination (ministry) program, and adding to that a Spiritual Directing program the following fall. Because you all have been generous enough to cover a large amount of my (considerable) non-insurance-covered medical expenses, we have the flexibility to “live my new life,” as someone put it. So we’re going to fulfill a high school dream of mine by celebrating our 9th anniversary and 9 months of new lungs with a trip to France in October (departing on the 9th) . We have many more ideas and dreams, but nothing concrete – it’s wonderful what a certified-pre-used pair of lungs will do! 🙂

There is no way to express the excitement I have for life right now. I know I have received an amazing blessing and gift – from the donor and his/her family; from the doctors and medical staff that kept me going up to the transplant and the team that took me through it and beyond; from all of you, my fantabulous support system; and from the Divine, who goes by many names and appears in many forms. I can only do my best to live up to the love and faith that has been literally placed inside my chest.

Thank you, Everyone, for these past six months. I look forward to many many similar update letters in the future.

With overwhelming love,

Carrie

PS After my 6-month check-up in Cleveland (on the 12th) , I’m pleased to report that I’m (still) showing no signs of rejection and my lung function is around 80%! Yippee!! :):)

Posted by: mettapanda | July 3, 2011

7 WEEK update (sorry!!!) – but there are pictures!

I’m baaaack!!

I came on here to catch you all up, since I’m getting ready to write my 6-month update / thank you to everyone letter.  And what do I find, but it’s been since MAY 12th since I last wrote!!!   So much has happened! 🙂   This is definitely a bullet-point time.  I’ll even put in bold the most exciting things. 🙂  And because you’ve waited so patiently, I’ll even put pictures in this post!!!  (so, yeah, this is going to be long…. settle in… )

  • May 13-22 Tim went on retreat, his first in over a year.
    • I spent some time at Fishers’,
    • had an overly long pre-op appointment at BWH which caused me to miss a funeral,
    • had a good conversation about potential school stuff with a friend who is in one of the programs I’m considering,
    • had a great (long-overdue) visit with Lauren,
    • met with Rev Ellen to discuss school stuff, (see more on school stuff later!!)
    • my Mom came down for the (2nd) weekend,
    • we went to NH to have lunch with my Aunt Joanne,
    • we had a fun visit with my Seann, Dawn and Sebastian in Ayer – which ended in a trip to the ER for the little man (no worries, just superglued his forehead back together)
  • Look! I actually walked it!


    we (that includes me) walked the full 5k (3.1 miles) of the Great Strides to Cure CF walk-a-thon with our team Panda Power!!  Our team raised $1995 (I’ll have to check that figure – I think we did more than that) , the Billerica site raised $84,452 and the MA/RI CFF district raised $1.78 million!!!

    Team Panda Power

  • after our grand performance

    I sang at the church evening service, accompanied on piano and vocal by the wonderful Will Reiter, who helped me get my voice back in shape and my confidence back up to par.  We did “The Lone Wild Bird” (a fairly traditional hymn), “Love Can Build A Bridge” by the Judds, and “Lean On Me.”  I had the congregation join in on the choruses of the latter two songs, and people seemed to really enjoy it.  The theme for the evening was the connections that we have with each other within our congregation and community, and how they encourage and benefit each other.  Rev Ellen even mentioned me as part of her homily. 🙂   I think it wasn’t fair to Tim though; as he had barely returned from retreat a few hours prior, it was all extra emotional for him! 🙂

  • May 24 I got my port-a-catch removed.  I’m very happy to have a flat chest (at least in that part). 🙂   I always thought I’d be bothered by the transplant scar(s), but their appearance didn’t bother me as much as the outline of the port showing under my skin near my shoulder, like an odd growth.  One friend said I should tell people it’s a scarab… It came out with no complications.
  • May 26-27 We finally got our bathroom floor and kitchen / dining room floors done.   They were worth the wait – they’re beautiful! :):)  And just in time, because…
  • Old bathroom floor

      

    New bathroom floor

    Dining room floor, after the shag carpet was pulled out.

    Finished kitchen / dining room floor. Ahhhh!

  • May 28-30 We had our New Lungs Celebration Weekend.
    • Me by the tree

      Tim at the end of the evening

    • On Saturday we had folks who had been with us in Cleveland for the surgery and any out-of-state friends that could join us (a total of 26 people) for an “Alice in Wonderland” themed tea party, with scones, tea sandwiches (cut into fun shapes), cookies and cakes, and, of course, teas of various sorts.   We played silly games [I don’t recommend playing ‘Duck Duck Goose’ while wearing wedge sandals] and danced and played t-ball / wiffle ball and watched the little kids color and do crafts.

      Some of the kids playing t-ball

      • Such a happy weekend!

        Sunday and Monday were open houses for those same people and anyone local who wanted to come by, and we had again probably 22-25 guests each day.   Since people were spread out, and the weather all weekend was nice enough to be in the backyard, it never felt crowded, and we always felt able to spend a little time talking with everyone who had come.   We didn’t play the games as much, but there was some bean-bag tossing and some dancing going on.

    • June 1 I had my post-port-removal check-up with Dr Camp (5 second appointment) along with an X-ray, and I got to visit with a number of folks from the BWH transplant team, including my ‘primary’ pre-transplant pulmonologist.  Good to see them!
    • NKOTB on the end of the runway in front of us

      NKOTB in Bruins jerseys for the finale!

    • June 4 I went with Cathy C to the NKOTBSB  (New Kids 0n the Block / Back Street Boys) concert in Boston.  AMAZING!!!  Good seats in the cushy section and  a great view of the main stage – FANTASTIC view of the end of the runway section!
        • Jun 6 I had an appointment at the Children’s Hospital Boston CF Clinic.  It was the first time visiting them when I wasn’t following up from IVs in the hospital, so we had a good discussion about whether I should be followed there or with the BWH doctor(s), in coordination with Cleveland.  My thought was that Cleveland would prefer the CF Clinic, since they had specified they wanted me to have CF care; but the Children’s doc said that many of their post-transplant patients (who started with the Children’s CF Clinic, then got their tx at BWH) just got their CF care through the transplant docs at BWH, and didn’t come back to Children’s.  That said, I’m concerned about the potential ‘conflict of interest’ if I went to BWH for CF care, since it’s the transplant doctor(s), and all my transplant care needs to be through Cleveland…  Ah well, it’ll all work out….
          • Of course they wanted me to cough up a sputum sample – which I can’t do now!! :):)  So they did a throat culture (which wasn’t as icky as I’d expected).  The doctor called me later in the week to say that I had grown some  interesting bacteria and that he’d confer with with the Cleveland folks to see about whether to do any treatment; his guess was that the bacteria was probably from my sinuses rather than lungs.
          • I’ve been dealing with allergies this spring, which didn’t seem to be going away.  Early that week I had one non-clear moment from my nose; that weekend I had a number of them, at least once a day.  Definitely a sinus infection, if much lesser than many I’ve had in the past.  So the following week I got in touch with Cleveland (who hadn’t heard from Children’s) and filled them in; they gave permission for Children’s to treat it; the doc at Children’s ordered a couple of antibiotics for me to take for 2 weeks; and I’m all better now. :):):)
        • Kathleen

          June 11-13 I made a spur-of-the-moment trip up to Cherryfield to visit with Mom and Dad, but honestly more to spend some time with Kathleen.  She’s my 3rd cousin once removed, she’s 84, and she has terminal cancer at this point.  Not knowing when else I might be able to see her, I felt that I should take the time that I had.  And, thanks to the miracle of my new lungs, I was able to decide on Friday night to drive up – just with the doggie – on Saturday morning and stay until Monday morning.  I was able to visit with and help care for Kathleen, spend some time (though not enough) with my folks, and – importantly – take some of the pressure off my parents for the weekend.  I also went with Mom to church on Sunday morning, which was lovely.  The folks there have been incredibly supportive of Mom and me through the transplant process and recovery; it was good to be able to meet some of them!

        • June 16 I headed down to the Spiritual Life Center in W Hartford, CT to check out their spiritual direction program.  It was a great visit.   But to prevent myself from digressing toooooo much (I suppose I could write the whole ‘why and how did you decide to go back to school?’ story for another post), I’ll just have you read the next post (which is already written, thank goodness!) about what I’ve decided to do for school!
        • View from Matinicus Island

          June 18-25 We went out to Matinicus Island, my favorite place.  It’s 22 miles off the coast of Rockland, ME, and I haven’t been able to go for the past 4 years, after going almost every other summer of my life.  This was a sweet homecoming with lots of family and friends – enough that we rented both cottages.  Among the highlights (and there were many!), I’ll tell you that I ran on the beach (wind sprints, even!), walked ~4 miles in one day,generally walked a bunch every day, ate well and had a positively wonderful time.

          Markey's Beach

          The fact that Kathleen wasn’t there in her house was a constant reminder of her situation; we were pleased at the end of the week to hear that a hospice bed had opened up for her in Rockland, so she’ll be close to Island folk for them to (hopefully) visit.  As I always say about Matinicus trips, we had to come home too soon (so you get lots of pictures!).

          The best place anywhere

          Happy dog

          A cave!

        • Don't you want to be here?


          RUNNING ON THE BEACH!

          Southern Sand Beach

           

        • Getting ready to do some work - or Matinicus Gothic

        • The harbor

    On top of Prudential

    • Running and playing on the last day

    • Spray on Prudential
      Spray on Prudential
    • June 25 We came home and barely had time to clean up before heading out to the fundraiser that Lynne L organized for NTAF to help with my uninsured medical expenses.  It was great fun, with great vendors and music – well, the music was great until I butchered my song in Carrie-oke (kareoke – yeah, the naming was Lynne’s idea)!  Some of the little kids were quite impressive.  And there was a fantastic silent auction.   The event raised around $1300 onsite, with more (dunno how much, I need to call to find out) raised online.  THANK YOU!!  If you weren’t there and are interested in checking out which vendors are still giving a portion of their proceeds to my cause, please visit Lynne’s fundraiser page.  We’re hoping to get the T-shirt that Frances designed available online, as well.  It’s gorgeous: it says “Breathe Easy” with scrolly-ness, and the very end of the bottom scroll has a tiny “CL.”  So cool!  I wanted to get one for everyone… then I realized that would be defeating the point of raising money for my own expenses.
    • June 26-July 1 This week I’ve been working on a few major projects.  I finally got all the backlog of receipts, invoices, etc, compiled so I could send off a request to NTAF for some of that money you all have been so generous with.  That packet got mailed today.  Also today I made my decision about what I’m doing for school, after about 6 weeks of thinking about it, talking with people, researching, talking with more people, etc.  As I said, that’ll be the next post.  And, obviously, I’m working on updating this, with an eye toward writing a 6-month update letter.  FEW!! 🙂
    Much love to all of you, and thanks for coming along on this journey with me!  I know I’m not the most timely reporter, but you do eventually get the story…. 😉
    -Carrie 🙂
    Posted by: mettapanda | May 12, 2011

    In balance – the good things [Post 2 of 2]

    The second half, or response to, my previous post.  Also (mostly) written last night, May 11.

    Here are all the good things that happened today:

    1. I had a lovely visit with Abhaya (my first Buddhist meditation teacher) as we drove to and from Boston.
    2. Although I had a long wait for my appointment, I enjoyed reading my Guideposts magazine (always highly recommended).
    3. I relished being able to park in a non-handicap space in the garage across from the hospital and walk briskly to my appointment.
    4. I had a very brief and positive appointment with the surgeon who placed my port, catching up on how I’m doing post-transplant, and I have an appointment for pre-op testing and an appointment to actually get the port taken out.
    5. I enjoyed walking all around the Museum of Fine Arts, including seeing some lovely Buddhas and seeing just a tease of the Chihuly exhibit, which looks AMAZING.  The walking DID NOT tire me out! 🙂
    6. Abhaya and I had a nice snack inside, a nice meandering stroll to leave, and a nice short sit in the Zen garden before leaving the MFA.
    7. For a day that was supposed to be rainy we saw very little rain. [Extra bonus: my extra-pretty umbrella fits into my purse!]
    8. Our drive home via Rts 225 and 4 was lovely; my appreciation was strengthened by Abhaya’s wonder and joy.
    9. I had a great chat with Cathy C, who seems like she’s doing as well as can be expected.
    10. I had a good, if not happy, chat with my mom.
    11. Seann, Dawn and Sebastian (my brother, sis-in-law and nephew) are going to walk in the CF walk with me, so we’re starting to get a good number for our team, Panda Power!  [If you want to walk or donate, I’d greatly appreciate it!]
    12. Writing out all the negative feelings from the day has helped to allieviate them a bit, and writing the positive bits helps to send me to bed feeling a bit more peaceful.
    Bonus from today:
    1. Mike from Cleveland called to say that my blood test results from Monday are PERFECT.  No medication dose adjustments necessary. 🙂
    2. I had a great session at rehab today, with 30 minutes on the treadmill (3.2 mph, 2.0 incline), 20 minutes on the bike (32 watts, 60 RPM), and some weights (2 lbs, 18 reps, 2 sets; bicep, tricep, outer-whatever).  I was kept company for the first 45 minutes by a woman who is just completing her ‘work-up’ for transplant listing; she asked me all sorts of questions and I basically told her the story of my transplant.  I think it was helpful for her, and it was fun for me. 🙂
    3. Although going to a funeral service is never fun, the service for Kathy D’s mom was very well-done.  The priest made me cry (which is impressive, for a priest), and we had a good contingent from First Parish there to support Kathy and Ron.  And the luncheon spread afterward was yummy and fancy enough to make me have to remind myself to stop looking for a wedding cake (which of course led to all sorts of thoughts of what one might put on a cake for a Celebration of Life reception….).
    4. Martha accompanied me to the services and then did a bunch of work on our gardens – and the yard is actually shaping up well enough to say that we have gardens!   I can’t say it would make it into any magazines or onto tv shows (more for lack of resources and priority on our part than any talent on Martha’s!), but it should be looking quite nice for the Memorial Day festivities.  (You’re coming, right?)
    Okay… that’s enough for tonight.   What have your highs and lows been recently?  Deaths and sicknesses?  Joys and wonderfulness?  Some of each?    I spilled my guts — your turn! 😀
    Posted by: mettapanda | May 12, 2011

    Too much sickness and death (not my own) [Post 1 of 2]

    This was a journal / diary / what-have-you venting that I (mostly) wrote last night, May 11.  You won’t get the typical happy, laughing Carrie in this one; it’s not even completely linear.   I’ll make up for it with my next post (also written in long-hand last night), which will be Post 2 of 2.

    So many deaths.

    I called Cathy C to check in on her tonight, to see how she’s coping after Jonathan (her husband)’s death, just three weeks ago.

    I found out that another friend Lynda, who I only recently learned has been battling cancer for a year, died today.

    The service details for Lynda and for my friend Kathy D’s mother were both in my email this evening.

    I get to go to three funerals / services in three weeks; two services in five days.

    Also this week I read a blog post by Ana Stenzel about a post-transplant friend of hers who recently died; again, one of a string of deaths.

    And Book Club discussed (on Monday) “Where Men Win Glory,” a biography of Pat Tillman.  (I was very proud that I actually read the whole thing.)  I was very hesitant to read it.  He was an NFL player who gave up his contract in order to enlist as an Army Special Ops Ranger after 9/11, and then died in Afghanistan by friendly fire.

    [Slight tangent]  The discussion of that book really hit me hard emotionally, and the only reason that makes sense is the connection to Fred.  He was a high school friend of mine (not particularly close, at the time, though…).  He became an Army Special Ops Ranger Sniper something-something.  We wrote letters while I was in college and for a short while afterwards.  At one point he (half-jokingly?) proposed to me; I believe my response was something like “we probably should date first.”  The last time I spoke to him, I was rushing off when he called — I never had a phone number for him, and when I once tried to call, I wasn’t able to reach him.  I don’t think I had any idea — regardless of how often I’d been through the “I’ll call you / see you / visit you at X time”, which then never happened — no idea how fragile the communication was.  He said he’d call in 3 days, when I returned home from Scotland.  (Yes, he called me in Scotland.)  That was in February 2000.  In the subsequent years, I’ve looked a little for him online, with no success.  Of course I’ve moved on – I’ve dated, gotten married, gotten new lungs, etc.   But I have no idea whether he’s alive or dead; whether he’s happily married with a nice normal-stress job teaching high school history or going on covert operations.  And obviously, on occasion, he comes to mind.  According to the Pat Tillman book, Special Ops forces from the different branches of the military work together — so, at least in my mind, it’s at least possible that Fred was somehow involved with bringing down bin Laden.  Maybe that’s incredibly far-fetched, but it brings the stories and the blood-shed and the friendly fire and the lies told to the families all much much closer to me and my heart than they otherwise would be.   And, other than me just being open-hearted with empathy and not wanting anyone to die, why else would this particular book hit me quite so hard?

    Anyway, it’s hard.  It’s hard, as I’m experiencing so much joy in my own life, my own rebirth (see Post 2 of 2, coming up next), to also hold the sorrow of the the deaths – expected or not, “merciful” after a long illness (if I dare use the word) or not.  I know it’s the balance and cycle of life, so perhaps it feels less like “someone isn’t playing fair.”  But that doesn’t mitigate the grief, nor the compassion for those closer to the dead.

    And it can’t mitigate the sense of betrayal by the laws of probability.  Of course people are going to die, but how come we can go months or even years without a death coming close to us, and then we get slammed – in this case, three deaths in three weeks.  Why does this cluster (f*&%) effect happen?  I’ve always heard death comes in threes, but does that make any statistical sense? [Note: I’ve been told that there is some ‘cluster’ something that goes along with probability theory, or something similar.  I am genuinely interested in learning about this… even if it all will still be a big mystery of the Divine / Universe as to how or why certain people go when they do.]

    And then, of course, there are the sicknesses…

    The woman I saw today, while sitting in the lung transplant clinic waiting room, was a pretty close representation of where I was, health-wise, in December.  She was emaciated – skinnier than I was, at my worst.  Probably in her 20’s and on oxygen.  (Based on just that, I would guess she has CF, though I didn’t ask.)  And she was exhausted, napping on her boyfriend / husband’s shoulder.  He was napping as well, head resting on her head, which made me immediately jump to the conclusion (accurate or not) that she’s been coughing so much at night that it’s been keeping them both up.  Not that Tim and I would know what that’s like.

    Her family was there with her, and I wanted to say to her or to them, ‘hey – look at me – there’s at least some hope!’

    And then it became apparent that they are JUST NOW looking into transplant.  I won’t judge her – there are many many factors in the decision and the timing.  But, WOW.  I hope and  pray and send good vibes that transplant will be the right choice for her, that she will get the transplant soon enough, and that she will recover and regain new life as I have.

    I did get just a moment to speak to her mother, though it appeared that perhaps that relationship isn’t the best (at least, it wasn’t today).  I think perhaps I gave some hope to her, whether or not she was able to pass it on to her daughter.

    And then, there’s the dear extended cousin who has lost 23 lbs since December and is undergoing testing to see if her colon cancer has returned.  For what it’s worth, it’s been in remission for probably 30 years at least – but that doesn’t make the new symptoms or potential prognoses any less scary.  I don’t remember her really sick, other than bad arthritis in her knees.  She outlived my Gram, who tended out on her, so she (the caring for her) was “passed down” to my folks.  We’ve joked for years that she’ll outlive all of us.  So – to hear how fragile she’s become in such a short time… it’s just a bit mind-blowing.

    She’s been adamant for years that she won’t move off Matinicus (obviously her home, less obviously a small island 20 miles off the Maine coast), regardless of how many people try to point out to her that getting around is becoming more difficult for her, getting oil is hard, etc, etc.  She’s now volunteering to my mother that she can’t do it all on her own anymore and needs some assistance – even while realizing that might mean an assisted living facility on the mainland.  It’s like Santa admitting to being too old to deliver toys and then actually retiring.

    I guess since both of my grandmothers died, this cousin has been my closeset grandmother-type figure; the closest family to me of that generation. And, certainly, she’s my closest and firmest link (in terms of a person) to Matinicus, which is really where my soul feels most at home.

    She’s an ornery, sharp-as-a-tack, particular, slightly crazy old lady – and I really don’t want to see her get sick or die.  Yes, I know sickness and death come for all of us — but I’ve had quite enough of it for a while!!  Is it too much to ask for a clean bill of health, possibly with the addition of a supplement or two, and a “sorry for the scare?” I want to visit her on Matinicus this summer; I don’t want to walk past (or help do work on) an empty house.

    And what about her horrible, almost feral, size of a small dog, “attack any human that’s not Mommy” cat? What will happen to her?

    ….

    My heart is just aching – and after an otherwise nice day, too!

    Posted by: mettapanda | May 5, 2011

    A great day

    Hey there!

    Today was great, so I’m motivated to share it with all of you. Tim’s respectfully requested me to come to bed by 10 (it’s now 9:19), so we’ll see how far I get! 🙂

    Wonderful things that happened today:

    * The carpet got installed on our stairs!! And the guy was nice and courteous and clean, and he did a great job, and it looks awesome!!! (I’ll work on the whole ‘posting pictures’ concept.)

    * I had leftover steak for lunch. Yumm. 🙂

    * Cleared off the chaise next to me, which is the first time in a few days, so I’ve had a sweet cuddly dog snoring next to me for most of the time that I’ve been home.

    * I’ve been having some great conversations in person and over FB about various aspects of Buddhism as well as religion and spirituality in general, which I really love discussing. It reinforces that my latest idea of “what to do with my life” actually makes sense. Maybe at some point I’ll share it with all of you! {tease!}

    * I called the Cleveland Clinic billing people and yet again “talked down” my bill. It would be more impressive if I were actually negotiating it, but really I’m just pointing out that charges, for some reason, stopped being submitted to insurance after 2/15/11. That makes no sense to the billing agent I’m talking with, either (who is very nice), so she fixes it. So I went from ostensibly owing $15k and change to owing $6395 or so, though that amount is also expected to be paid by insurance (though why other parts of that charge have been, and that bit hasn’t, we don’t know).

    * I finished the paperwork for another submission to another insurance company. This is the hospital indemnity insurance policy. If there are any of you readers who have a chronic illness that puts you in the hospital once a year or more, especially if it’s for a few days at a time, look into an indemnity policy! It’s like Aflac (though that’s through one’s employer); it pays you for “lost wages” for any time you’re in the hospital, often with a higher pay-out if you’re in the ICU. In my case, I have Physician’s Mutual, and I get money for each day I’m in the hospital, extra for each day in the ICU, and then a smaller amount for each day I’m “home-bound” recouperating afterwards. (There are also amounts for going into a rehab facility or such.) So, I’d already put in the claim for the time in-patient in Cleveland, but at that time I didn’t know how long I’d have to stay there in the area. When the doc signed that sheet, he said to bring it back again and they would consider me “house-bound” until they cleared me to leave the Cleveland area to return to Lowell. So I had that second sheet signed at this last visit, and finally finished filling it out today, and Tim can fax it in tomorrow. Which should mean a check in 10 days or so. Sweet! 🙂 [The policies are too expensive if you aren’t in the hospital often, but if you’re in annually or so, enough that you’ll receive in claims at least as much as the premium, then it’s a great plan! And they don’t really care if you’re working or not, they just use the ‘lost wages’ phrase for the masses.]

    * I spent some time working on my first NTAF reimbursement submission, as well. It shouldn’t be so hard, but of course paperwork got “put away somewhere” between locations. I was pretty psyched when I called them to see what my balance is, though. THANK YOU ALL for all your help! I’m submitting for the Marriott lodging and travel (they pay mileage, like the feds) first, and then probably for the floors. (After living with some-pretty-some-ugly non-carpetted floors for a while now, I can’t imagine how much crap must’ve been hiding in that old orange and green shag!!!)

    * I went to pulmonary rehab for the first time since December. It was really sweet that when I first arrived, there were only staff there, so I kept my mask off and gave lots and lots of hugs. They even called down staffers that were working in other departments this afternoon so they could see me. And they couldn’t stop staring at me. :):) When they *finally* let me get to my work-out 😉 , I kicked serious butt!!
    —— Treadmill: 3.0 mph, 2.0 incline, 33 minutes (including warm-up and cool-down) in order to make an even 1.5 miles. :):) (uphill both ways, kids 🙂 )
    —— Bike: Level 4.0, ~60 RPM, ~25 watts, 20 minutes, 0.6+ miles.
    ——Weights (yay weights!!!): 2 lb dumbbells, 15 reps, 2 sets, biceps, triceps, and whatever muscle you work when you bring your arms straight out to the side.
    ** Oxygen saturation throughout the workout = 99%!!!!!!!!
    ** Low point: Watching the end of the Red Sox game. Ouch!!!
    ** Finished up the visit with socializing with one of the other attendees (clients? patients?) and eating birthday cake (thanks to Martha for having a birthday today!)
    ** Left with assurances that there are a number of pre-transplant folks, either currently getting worked-up to be listed or already waiting on the list, who would very much like to chat with me. So when I go in on Tuesday at 1 pm (which will be my regularly scheduled time) I might have a ready-made fan club. 🙂

    Alright, it’s 10 pm! I guess all the fun from my previous days (weeks?) will have to wait for another time.

    Have a good night! 🙂

    Posted by: mettapanda | April 15, 2011

    How the Dharma… (if you’re interested)

    I have a new post up on my more spiritual / philosophical blog, in which some of you might be interested.

    Here’s the first paragraph, to whet your appetite:

    I am often asked or complimented on how I get through all that I’ve gone through – the progression of the CF, the transplant, the immediate recovery, and the still-ongoing long-term maintenance of these new lungs. My spirituality has been life-saving, particularly my Buddhist practice and learning. I’d like to share with you how that’s happened, how the Dharma (the teachings of the Buddha) have helped me to deal with dharma (the way life is).

    If you’re interested in reading more, please feel free to visit (and explore) MettaPanda’s Ramblings.

    Love!

    Posted by: mettapanda | April 14, 2011

    Another two -no, three- weeks… Mar 27-Apr 15 (update #3)

    Hi all!

    So, what happened the past few weeks?  I’m going to mix it up and give you stories in no particular order.  Have fun!!

    Thursday, April 7, was the THREE MONTH ANNIVERSARY of my new lungs. Congratulations, Lungs!  Good job! :):)  Keep up the good work!   My idea of a “spontaneous” party to celebrate was thwarted by people, oh, having non-spontaneous plans already set up or being sick.  :p to you all and your plans!!!  (Really, I understand.  Really I do. 😉 ) But we did have a good time!  Tim and I were joined by Peggy (a church / book-club / all-around friend), Lynne and Chris (originally politico friends, but now all-around friends), and Vic (Tim’s bf since hs, best man at our wedding, owner of the best waffle house in the area EVER, etc).

    We were planning to meet… well… here’s the story.   Tim and I thought the (Lowell) Brewery Exchange was bought out when BeerWorks came in.  So we were *trying* to go to BeerWorks.  Instead, we went in the door marked ‘entrance’ right next to the big BeerWorks sign (which was over another, unmarked door), under the old antiquated Brewery Exchange sign.  (Figured that sign was kept because it was historical or something.)  Had a good time and decent food, but we were a bit surprised that they didn’t brew their own beer.  Doesn’t BeerWorks generally have their own beer?  Fun visit with everyone, good appetizers, a couple of decent entrees. Unfortunately, they don’t have any desserts. 😦  (For those  out there who are concerned:  I’m only allowed to drink alcohol in very small quantities on special occasions – like Caitie’s wedding :).  So I had pineapple juice and seltzer, which was pretty good.  And I encouraged Tim to have beer, cuz he really likes it, and I was all set to drive us home.)  After Lynne, Chris and Peggy headed out – when it became too loud to hear each other speak -Vic, Tim and I went to the back (at Vic’s suggestion) to shoot some hoops.  The second machine didn’t seem to be working, so Vic and I took turns on the first.  And, in all modesty, I beat his score.  Ooooh yeaaah. :):):)  (For what it’s worth, that *doesn’t* mean that I did particularly well!)  We also noticed that they have pool tables.  I haven’t played pool in forever, but I enjoy it, in the right mood; Tim said we *really* needed to be getting home to Shelby, but said that we could come back another day – since it appears to be a non-skeezy place to be able to play! 🙂  They also have a mechanical bull, for which they pumped up the big surrounding air cushion for falling-upon while we were there.  I’m not allowed to ride – with the jerking and the falling – until at least a year out, and then only if I don’t get hurt and don’t tell the doctors. 😉  But I would LOVE to see someone else ride!  There were no takers from our little group, and no one else stepped up while we were there.  Perhaps it’s a “later in the evening, when people are more drunk” activity. 😉  So we’ll go back at some point to play pool and watch people on the bull. :):)

    The three of us left together with a vague notion to get dessert somewhere, though it honestly seemed unlikely we’d go to the trouble to find another location.  As we left the building, it occurred to us that the downstairs portion, which had been pretty empty when we came in, was now decently busy.  And, looking in the window, they had a Specials sign that included desserts.  By the time I said “I think we need to check it out,” Vic was already opening the door. 🙂  And, guess what?  We found BeerWorks.  (Yes, right under the BeerWorks sign.  Not my proudest moment, but with the backstory, I hope you’ll forgive me.  None of the others questioned which door to use, so it wasn’t just me making that mistake!!)   We found that they brewed A BUNCH of their own beers.  Tim got a beer float with one of their beers and coffee ice cream; Vic got a sampler of 4 different beers and some chowder/soup of some sort; and I got a blueberry-apple-pear-something crumble.  Yum!   And it was much quieter than upstairs, so we had a nice visit among the three of us, which we haven’t had in a while.  I’m sorry that we weren’t downstairs for the whole visit with everyone (though I would have missed seeing the bull and pool tables and shooting hoops), but I am very pleased that A) we found what we were expecting in BeerWorks, and B) that we had such a nice visit to cap off the evening.

    Monday, April 4, I had a blood draw in the morning.  It went smoothly for me, at least for the transplant labs.  The computer system was down in the lab, so they couldn’t access which tests people were supposed to have.  So people would come in and they’d know which doctor ordered it (which is usually all you need to tell them), but then the lab folks would ask “do you know what test you’re getting, or why you’re getting testing done?” Of course the majority of the patients did not.  I was supposed to get labs done for my primary care doctor, and all I knew was that it was supposed to be fasting – so I’d guess cholesterol – but there might have been other things.  So patients could either come back another day, or they could get a random amount of tubes drawn and leave a urine sample, and the lab techs would figure out when the computers came back online if they had enough samples or would have to call the patient back in.  Frustrating for them!  My PCP appointment is 4/27, so I decided to not do anything for her at the time, but just do the Cleveland stuff — which is all written on a hard-copy that I have with me, so it wasn’t affected at all.    I will add in here, though it wasn’t from that day — I just now received a call from Mike at the Cleveland Clinic  that all my blood levels (Prograf, etc) are GOOD, so no changes to the medication dosages for now.  We’ll re-check them at my appointment out there on 4/19.  Yay!

    The other highlight of Monday was that I had a nice visit with Sally.   We were supposed to take Shelby for a walk down by the river, but the rain seemed to make that less desirable.  So Sally came over and had tea and kept me company while I walked on the treadmill!   Having the treadmill in the guest room rather than the front room is nicer in general for having company over, if we’re all just staying downstairs.  But the guest room isn’t very inviting at the moment for someone to keep me company while I’m walking.  We’ll have to work on that.

    Sunday, March 27, Tim and I went to see “Two Jews Walk Into A War” at Merrimack Reperatory Theatre.  Much laughter!

    Tuesday, March 29, I lead meditation, speaking about how the Dharma (the teachings of the Buddha) have helped me in dealing with Dharma (how life is) – particularly in terms of being sick, going through transplant, and the uncertainty that comes with this new stage.  If you think I’ve been behind in terms of *this* blog, my plan was to write up that talk to post on mettapanda.wordpress.org… but that hasn’t happened yet.

    The House: Ah, such a story.  Well, we got our heating ducts cleaned. That’s a good thing.   Our plumbing decided to be problematic, so we ended up having a 24-hour drain service come out on a Saturday night to clear the sewer drain from our house to the city sewer pipes in the street.  Not fun additional stress.  And, of course, the floors….  As you know, the refinished wood floors are gorgeous.  Maybe if we keep repeating that, it will overshadow the delays with the rest of it all.   The carpet for the stairs was ordered April 6. 7-10 days for the carpet to arrive, then the installers will call us to arrange an install date.  So hopefully they’ll call early next week (when, of course, we’re in Cleveland), and we can get it done by the end of the week.  We thought we had enough of the bathroom flooring to do that this week, but a re-measure determined that wasn’t going to happen.  So we’re hoping for the second box of that material to arrive mid-week (4/20ish) and the work to be done the following week.  And then for the dining room and kitchen… The order sheet said it would arrive April 2.  On April 4, they told us it was backordered – until May 24.  UGH.   We looked at alternatives, but really like the one we picked out.  And if we’re going to live with it for however many years, we might as well not compromise for the difference of two weeks or so (which is what it would be, if we order something new).  So… slow progress.   It seems unlikely that I’ll really want to *show off* our house over Memorial Day weekend, but, whatever.

    Speaking of which, did I mention before?:  May 29-30, Sunday and Monday of Memorial Day Weekend, are going to be an Open House — or maybe better labelled as “At Home, Receiving Visitors.”   We want to thank and celebrate all of you who have been so good and supportive and wonderful to us throughout this process.  You are all invited, with any children.  Bringing a potluck dish (appropriate for whatever time you arrive) would be appreciated.  I wrote down the times somewhere; it’s something like 2-6 on Sunday and 10am-6pm on Monday.  Hopefully the weather will be nice enough to have it in our backyard, though we do have a potential off-site inside location for Sunday if necessary. 🙂

    We’ve had nice visits with both of my parents, on subsequent weekends.  Dad came down on Saturday, April 2, on his way to Seann and Dawn’s.  And Mom came down and stayed with us Friday – Monday, April 8-11.  It was wonderful to see them both, and for them to see me post-Cleveland and to see the new floors.

    We had a nice visit on April 1 with Seann, Dawn and Sebastian.  We had a great time; I think Sebastian adapted to Aunt Carrie having energy faster than the grown-ups did. 🙂  Of course, it seems I’ve now been put into the potential babysitter pool…. I’m really horribly upset by this — NOT! 😉  The biggest trick is working out how to “pick up” a toddler who expects to be picked up without actually picking him up (since he is significantly heavier than my “maximum” 5 lbs).

    We’ve had good visits with friends; finally, I think, starting to catch up post-Cleveland.  We went to a scrumptous chocolate buffet with Sarah and Brian Smetana and their boys on Saturday, April 9.  One word:  YUMM.  I know I need to be careful of buffets – and I was – but it worked out quite nicely that we were basically the first to arrive for the first seating.  So, you know, if no one’s been wandering by the food other than the servers, than it’s no different than being served from the kitchen — right? 🙂  Or if the cotton candy is made just for you… :):)  Luckily, we all went for a little walk afterward, and then Tim and I took a LONG walk around downtown Boston.  The *freedom* to be able to wander around is AMAZING.  What a way to enjoy spring — I’ve missed it. :):):)

    Some small fun things this week: I went to Book Club on Monday, April 11, to discuss “One Thousand White Women.”  I was the *only* one that really enjoyed it.  We think partly because I was reading it quite quickly?  Ah well.  So much for my “sophisticated reader” identification. 😉  Yesterday, Wednesday, April 13, Tim and I went to Wat Buddhabhavana Temple, the Buddhist temple in Westford, for meditation with Ajahn David Chutiko.  He comes to our meditation group at church on the first Tuesday of each month, but this is the first time Tim and I have gone to the temple to sit with him (and his Wednesday night students).  It was really lovely, particularly because it was Ajahn’s 74th Birthday 😀 , and because we were surrounded by a dozen Westford Academy students.  How wonderful that they are learning so young how to help themselves center their minds and cultivate mindfulness through their daily life.  Such a valuable skill!!  Today, Thursday, April 14, I had (another) lovely, wonderful, fantastic massage by Tiffany.  Of course, I only remember about half of it, since I fell asleep. 🙂  But the remaining numbness in my left shoulder and upper arm (from the surgery) is probably about half as much as it was before my session this morning.  I noticed a similar improvement after my last session.  For something that the doctors said would resolve on its own, but hasn’t changed at all other than through these sessions, that’s pretty impressive to me.  [I’m very pleased to report that Tiffany’s massage and bodywork business is booming, so that she’s now working 6 days a week from her space in Chelmsford Center.   Yay Tiffy!!]

    Ah, and April 5 I saw my endocrinologist for a fairly clean bill of diabetes-related health.  My HgA1C is 7.1, which is lovely (for me); but my numbers were having quite a few highs and lows, so we adjusted some settings on my insulin pump.  Things seem to be more stable now.

    I think that’s a pretty good summary for now.  We leave Saturday or Sunday for Cleveland; my 3-month follow-up appointments and bronchoscopy are on Tuesday, April 19.  We’ll be staying at the Marriott, where we were before; they are so sweet to be able to give us the Clev Clinic Transplant rates since we were there for so long before, even though we’ll just be there for 3 nights this time. 🙂  They’re good people.  We’re hoping to be able to visit with the Colbys on our way out, if they are all feeling well.  That would be good.  Of course, I’m psyched to be able to visit with Cathy Colby the weekend of June 4; we made plans and bought tickets to go see the NKOTBSB (New Kids on the Block / Back Street Boys) concert in Boston that Saturday night!   It’ll bring me right back to 7th grade —- but only in a good way!

    And one more neat thing to share…. Since getting back from Cleveland, it’s been wonderful to see how much the Spirit / Divine / Inspiration has been moving in me.  I have a tentative idea / plan for going back to school and starting a career (not just a job!), which will be very Spirit-based.  And my writing – both poetry and song lyrics – has been more prolific than ever, including some situations where a full song will come into my head already formed, or a lyric will take off in its own direction, somewhere that I never could have taken it on my own.   It’s wonderful and beautiful, and I hope I can serve the Spirit well.

    Okay — enough for now, even though there’s been a long hiatus to make up for.   Much love to all of you who keep asking “what’s going on with Carrie?!”.

    Big hugs,

    Carrie 🙂

    Posted by: mettapanda | April 4, 2011

    Two weeks later… (Part 1: 3/20-26) – update #2

    Okay, so I didn’t do so well with the “I’ll post weekly – really I will” concept.  I’ll try to get better at it. 🙂

    The last post here was on March 19, so here are the highlights of the week of March 20-26.  I’ll do this past week in a separate post:

    • Sunday, March 20, was a lovely bridal shower for a lovely bride-to-be friend, Caitie.  Drove there with Tiffany; we managed to get lost even while using the GPS unit.  That takes TALENT. 🙂  Had a great time seeing some friends I haven’t seen in a while.  Caitie was *glowing*. :):)   After the shower Tiffany and I drove Caitie and Zoe back to their / their mom’s house in Billerica – enjoying some singing along the way! – and then went on to the evening service at church.  During that weekend, Tim and his parents worked on putting our Lowell bedroom back together and getting the kitchen liveable.  We spent that night at the Fishers’ house again, in preparation / ease for my blood draw the following day.
    • Monday, March 21, I had a blood draw. 🙂  All looked fine (got the results at the end of the week, of course); Prograf level was a little high, so I’m now down to 1.0 mg in the morning and 0.5 mg in the evening.  Hung out with Tiffany for the day.
    • Tuesday, March 22, I got to sing. 🙂  I met up with Will at the church, and we went through some breathing and vocal exercises.  Then we sang “Love Can Build A Bridge” a number of times.  You wouldn’t have wanted to heard the first go-through, but it wasn’t too bad by the end.  (Of course, that’s all on me; his piano playing and harmonizing was great from the start, and he was sight-reading!!)  We also got a chance to talk to Kathy about playing / singing with us; after consideration she decided to decline.  But I think it’ll sound great on 5/22! 😀
    • Thursday, March 24, Tim and I went to Atlantis Playmakers to see “L.O.V.E. and Other 4-Letter Words.”  Awesome show, lots of fun!  It runs on (most) Thursday nights through the end of May, and I HIGHLY recommend it.  In fact, we’ll probably go back to see the second casting of it; it sounds like the script might be adjusted a bit, so it will be fun to see what’s been added / subtracted.
    • Friday, March 25, Happy Wedding to Caitie and Milan!!!   It was lovely!  Tim was gorgeous in his kilt.  I was looking pretty decent myself in a purple dress (from Savers) with a purple bag (from Savers) and my favorite black heels and a black wrap (from MY CLOSET – newly accessible!).  The ceremony was beautiful, including an Indian wedding tradition that reminded Tim and I quite a bit of the handfasting that we had as part of our wedding ceremony, and including Caitie playing piano while her sisters, Zoe and Erin, sang a song that Caitie composed.  Wonderful!!  The reception was equally fantastic – particularly that I was able to dance for *hours*!! :D:D  (It was probably just about 2 hours – but that counts as ‘hours,’ right?)  Tim and I capped the day by sleeping for the first time in months in OUR OWN HOUSE.  Yippee!   It’s the first time I’d slept in my own bed since Christmas Eve.  Boy, did it feel good!!! :D:D  Although the house still is/was not put together, we consider ourselves moved in from this point on.
    • Saturday, March 26, Happy Birthday to my brother Seann! :):)  We weren’t able to spend time with him or his family, but had plans in the work for the following week.  We spent the morning unpacking and moving furniture around with John’s and Forbes’s help.  (Okay, I mostly kept Shelby and myself out of their way.)  All the men left between 12:30 and 1:30 for various homes, and Tim to a massage appointment with Tiffany (well-“kneaded” after the morning’s work!).   After Tim’s massage (wonderful, as always!), we went to Home Depot…. that seems to be our new Saturday hang-out.

    I’m pretty pooped, so I’ll finish here for tonight and hope / aim to get this past week written up in the next couple of days — before another week has gone by!    I will say that my health is holding steady and the house project is … progressing…  More on that in the next update!

    Hugs to all, and to all a good night!

    🙂

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