Bonnie Recovery

Our new normal ....

Our Bone Marrow Transplant doctor and nurse, who have been dealing with patients with Graft vs. Host Disease for more than 20 years between them, remind us that Bonnie is a miracle:  15 months ago she was a "slip of herself" - coming to her weekly visits in an ambulance, strapped to a gurney.  They point out that Bonnie looks great in comparison to a year ago.  We all observe that Bonnie's rosy cheeks are a symptom of her Graft vs. Host Disease and the 6 bloody bandaids on her skin are a result of the Prednisone thinning her skin etc. 

We are left to simply trying another (very expensive) drug to supplement the steroid she is taking, which more or less controls her Graft vs. Host Disease - BUT which reduces her muscle and bone mass and thins her skin. The new drug, is the most widely prescribed anti-GvHD supplement to Prednisone, though it is not yet proven effective.  The side effect is to cause diarrhea in some people. 

I keep challenging the doctors to tells us of a trial or some treatment regimen that will eliminate GvHD, just as Bonnie's Bone Marrow Transplant eliminated her Leukemia.  They smile.  We were told we can flip a coin as to which immune suppressant to take.  Today it is simply trial and error we are told by one of the best and brightest research doctors in the field.  We have reached the end of the path of Western allopathic medicine as practiced at Dana Farber Cancer Institute. 

So while we filled the prescription, we are redoubling our efforts to reduce stress and being present to the many blessings of life and attending to our prayers.   

It is time to turn our attention to packing and moving and creating a new normal.

/Daniel for BanD

More on the New Normal

Life in Cambridge (surrounded by boxes) is a bit better than one might surmise from Daniel’s posting. Yes, my current round of graft vs. host disease is painful. It’s been hot here and the heat bothers the patches on my arms and back.  My mouth is mealy and sore so that I can only eat the mildest of foods. And I am keenly aware of what the doctors observed: that I am a miracle to be here. We knew from the beginning that a transplant was trading one problem for another; since we were rolling the dice with my life, the transplant seemed like a good bet and I continue to know that it is. Looking around at others who attended the surviving transplant conference, I’d estimate (with no scientific basis) that I’m about in the middle.  There were people who’ve not experienced any GVHD at all and then there were some that were oh so much worse off than me. And all of this is just on the physiological/medical level. I met no one there who has been as spiritually uplifted as Daniel and I have been through this process. And certainly no one had a caregiver as wonderful as mine. Some were truly exhausted by all they had gone through, though most were coping well. Being grateful every day is a sure way to focus on what is good and to keep moving along to health.

I’ve mentioned that I had contact with my 37 year old male donor whose name is Jay. I feel so especially privileged to have Jay’s cells and not just because they are young and strong. Jay’s father got leukemia in 1984; I think that he was 42 at the time. He would be about the same age as I am. He had a transplant from a brother (the best match you can get short of an identical twin), but the technology for the transplant itself and the post transplant treatments were crude by today’s standards. Jay was just a boy when he lost his dad to infections resulting from the immune suppression associated with a transplant. When my transplant was delayed from the original date in May to the following August, Jay wondered if I had died of infection. Recall that my first chemo did no good and the docs prescribed another round of chemo trying (in vain) to reduce my leukemia blast levels. It is only Jay’s stem cells and the marrow that they produce that has cured my leukemia.

Jay registered a few years earlier when there was a donor drive at a local college. I am so fortunate that he knew about that drive and was willing to sign up. Although he is not an exact match, he is by far the closest they found in more than six months of searching.  I feel privileged to be able to live in memory of Jay’s father. Jay’s mother is now a reader of the blog: WELCOME and thank you. Moreover, Jay is a Christian. He is the editor of a Roman Catholic newsletter in the diocese that contains St. Louis, MO. Daniel and I will be seeing him on a way through St. Louis. We are very excited about that possibility.

I also hope to see my cousin on my father’s side in St. Louis. My cousin H.B. looks very much like my dad. The McDaniel genes are strong for those family members who have them (like my sister, but not me). It was positively scary to see my cousin who was the last time I saw him the same age as Dad the last time I saw him. It was like seeing my Dad come to life. Wow !

I find myself in very good moods these days. Daniel drove me to NH last weekend to see our friend Susan Langle who is now the rector of a wonderful little church in Claremont, NH. The church has wonderful stained glass windows that remind me of the church I attended as a girl in Texas. Some of the windows are more modern in orientation. Here is a picture of Susan’s favorite showing stained glass Sophia standing over and protecting a woman with Susan right beside, gathering the gifts of Sophia. And also here a big welcome with her name on it. It was wonderful to see that in just a few weeks the congregation has begun to love her as we do. Also I’ve heard that Sue Crommelin has accepted an interim assist rector at a church near her home in Virginia. Wife of the interim rector has cancer and he is not able to give both his wife and the congregation the care they need. Sue will be a perfect fit to take care of the pastoral needs of the congregation on a daily basis. I’m so happy that she will be doing this.

Daniel and I are cooking along on our plans to drive from here on July 21 heading to Chicago and seeing my friends Tom and Margaret Benson in State College PA along the way. We will make a side trip from Chicago to Madison to see Margaret and Paul Irwin. We’ll be about a week in Chicago and then head to Texas through St. Louis. We’ll see friends in Austin then head south to Wharton to see Mary Newman and on through Houston seeing Melanie Bradford before going to Baytown to see my cousins there. Sound like a trip? I haven’t mentioned all the BBQ places we’ll be seeing on the way there and back through the south. I’ve also made our plane reservations to go to CA in September with side trips to Portland to see Eric and Ashley Dishman and also to LA to see our son Ron. We’ll be in CA for two weeks (!) and should get to see many friends there as well as go to the Interval Reunion (how many people still get together once or twice a year eight years after their company was closed? We Intervalians are a family.)  After moving to NC we’ll be doing a lot of travel including a trip back here to Cambridge to visit my FOUR (4) doctors. We plan to drive up here every quarter for doctor’s visits in addition to seeing a doc in Chapel Hill or Durham monthly. I do get a bit exhausted just thinking about it even though I’m so excited about seeing friends and even checking in with doctors.

I’m also celebrating that the library I’m donating to the Southport church was picked up by the Postal Service today. Eight boxes of media mail and one parcel post with library supplies. YEAH. Sending the books is a great way to inaugurate my concentration on getting packed!

Finally, we continue to enjoy the grandchildren. I had so much fun in NC. Here is a recent picture of Ms Abigail Jean. Note what a glamor girl she is becoming in her baby bikini. Note also her dolly who is also wearing a hat. Jackson will be visiting us on Sunday, Yeah.

In pretty darned good spirits,

Bonnie for BanD

 

 

 

 

 

 

Analogic Anxiety

Here is my Independence Day firecracker. Abigail Jean is VERY independent these days and 100% fire cracker. If I’d been with her at the parade in Southport, NC, I’d probably have been registering voters for Obama. There were six such Obama events around Wilmington over the holiday. Pretty impressive. How was it in your neighborhood?

Hope you had a good 4^th of July holiday. Daniel and I had a quiet 4^th. Margi and Peter came over Friday night. We had massive amounts of BBQ with Daniel coaching Peter on the art of Q.  Daniel also made a fresh corn salad based on what he had eaten at Armadillo Willies in Los Altos. 

Margi and Peter have sold their MA house and today are moving half their things to Australia and half to a condo near their house. By comparison, our move looks  easy and fool-proof. I’ve spent most of the day getting pictures and text for Daniel to advertise stuff we are selling on Craig’s List and also planning the itinerary for our Chicago-Texas BBQ tour. Daniel is doing a great job of looking up descriptions of things we are selling along with pictures and getting them on Craig’s list.

I have a case of “analogic anxiety,” meaning that I’m worried about losing my teeth because I lost eyesight in one eye. I know it isn’t rational. Still, I keep thinking about how quickly my eyesight went. And now these ten cavities … what if the dentist can’t save my teeth. I’ve always had wonderful teeth, especially since I invested in gold crowns for all my molars. My Mom had pretty good teeth but she thought that false teeth would be better because Daddy never complained about his. She finally found dentist willing to pull teeth that were too good to pull and make her false teeth; it was a decision she regretted all the rest of her life. At the end of her life she developed cancers of the mouth from having dentures that never really fit regardless of how many times she had new ones made. My last visual members of Mom are with those horrible bumps in her face where the bulging cancers were filling her mouth. Well, that’s my anxiety story. Thanks for letting me get it out; it helps to confront these anxieties whether rational or not.

These anxieties seem to have me a bit high strung recently. Night before last I didn’t sleep at all. I am overcome with zeal to plan our three week Midwest (aka Barbecue Tour). Some of you have gotten my messages about when we expect to see you. I’ve been calculating routes with Google maps, figuring out how long we can drive, what will make a good visit with people along the way, and really absurdly looking a reviews of BBQ places to decide where we should eat. This last task is absurd for ME to do because BBQ is DANIEL’S thing and I know that he will want to do that research and make those decisions. So, why am I so obsessed with itinerary planning? Partly it is a creative outlet. I forgot some bread I had in the over the other night; Daniel took the charred remains of a loaf to the garbage center. That event discouraged me from doing much cooking for creativity. Also I think I’m planning our trip out of here to get myself involved with ACTUALLY MOVING OUT. I can project being gone in a very concrete way to soothe myself about leaving a place we have come to love.

One person we REALLY love in Cambridge is our grandson Jack. He is 3 ½ and learning all the time. He has become quite the builder these days.  We will miss that boy.  I'm being happy about our decision to drive up here for a week or so every quarter (a plan the eye doc insisted on). 

I’ve also been spending some time in the little park at Harvard Square. When we first moved here I imagined that I would be spending time there, but of course I haven’t until now. Now I go to Staples to buy moving boxes then sit and drink ice tea and watch people in the park while I wait for Daniel to pick up me and my packages.

In this picture you can see that I’m pretty happy despite this anxiety stuff… and also that I have naturally VERY curly hair. Since I haven’t had any chemo in well over a year I have no idea how I got this or how long it will last, but it is cute, don’t you think? 

Bonnie for BanD

 

So far it looks like we are still moving

Daniel took me to Dana Farber for an impromptu meeting with the nurse practitioners who supervise transplant patients. The boys (docs) were out of town and it was time for us to get some straight stuff from the women who really run the place and see hundreds of patients of several doctors.

My GVHD (Graft vs. Host Disease) continues to turn me red and leave my mouth especially sore. We learned of a couple of alternatives to predisone though neither is a fast “bang for the buck” as one NP put it. The direction for now is that I double my predisone to 40 mg a day and “just stay” that way for a couple of months, no going up and down on it. We will be in conversation with the docs there about our coming back here for a month or two in the fall for an intensive regiment of one of the other approaches. One involves Interluken 2 and the other is where they would draw my blood and treat it and put it back in my body. The second has shown good results with patients like me who have mouth and skin problems. We are still looking forward (well, not gleefully looking forward) to seeing docs at UNC and Duke. Who knows what a different set of eyes on my condition might see and what other possibilities might open up. And rest assured, the GVHD is something to be contended with, but it is just pain and not life threatening. Please do worry and do pray. 

I am thrilled that at least for now, and barring a serious turn for the worst, we are leaving here for our Midwest vacation and we still have California-in-September plans. I truly believe that the best medicine will be to GET OUT OF HERE and on to see friends, family, and ocean.

Bonnie for BanD

Being a patient advocate - getting clear on our options

The last few weeks have been rocky for reasons I can not articulate with exactitude.  Yes, we are in the middle of a move.  Yes, we have issues with my daughter here. Yes, several dear friends have been recently been diagnosed with serious medical conditions.  And one of our dearest friends' marriage is coming undone.  So much for my heavy heart.   

But I literally wince when I watch my Bonnie having to be upbeat, for her own good, in the face of painful body conditions and our very vague outlook.  Bonnie's weeks continue to be consumed with lengthy visits to doctors and dentists, with no end of her symptoms in sight. 

The good news is that Bonnie is ALIVE to see her grandchildren and to write our book.  Statistically speaking, it was virtually impossible for Bonnie to make it this far.  She looks forward to doing spiritual direction work, what Bonnie calls "spiritual companionship" with folks in NC. 

But Bonnie's beautiful skin is reddened, and mottled: her cheeks are too full and red.  The skin on her back is getting thick and discolored from the Graft versus Host Disease, while the skin on her shins and arms has become paper thin from the Prednisone, which she has to continue to take to prevent the GvHD from killing her.   If the thunder don't get you, the lightening will. 

Last week I could watch no more.  I got busy trying to find a clear cut path forward.  Or at least to get a current diagnosis and referrals to our next set of doctors in North Carolina. 

I guess what I have learned as a patient advocate in the last 6 years is that when conditions are not improving and no one is doing anything, DO SOMETHING.  Here is one of the e-mails we sent to our docs and nurses and the new actions that opened as a result....

98% packed into 2 PODS and the Odyssey... Road Trip.

We are 98% packed into 2 PODS (8'x16'x8') and the Honda Odyssey. 

It took us three weeks to pack up our books and electronics and kitchen and clothes and artwork into boxes.  It took two full days to pack the boxes and furniture and beds etc. into the PODS.  It took 4 able-bodied men 16 hours, Saturday and Sunday to accomplish the feat. 

Bonnie worked from 6 AM to 6 PM today, basically non-stop.  Since there were no beds, couches and or chairs upon which to rest, it was a very hard day for her.  I can hardly believe that she was able to do so much.  I could not have done the move without her.  I need her for companionship and from a pure logistics point of view.

Speaking of companionship, on Thursday noon I called my friend Hugh Pyle at work at Microsoft in Beverly MA, and told him I was overwhelmed by the move and depressed, and I asked him if he would come and help me pack.  Hugh left work early and was to the apartment in Cambridge by 4PM. 

I felt better the moment I saw his smiling face.  He came in and helped me pack up my Gallo Reference 3.1 speakers as they are awkward to lift alone.  But it was worse than that.  It turned out  that one speaker needed to have three bolt holes re-tapped to allow the allen-head bolts to hold the covers on properly.  Arrrrggghhh.  It took two trips to the local hardware store to accomplish what should have been a simple task.  I was not in condition to have persevered alone. 

We chatted about this and that, mostly stereo stuff, but also Microsoft Mesh and Google Health etc.  By the time Hugh left that evening I was back to my optimistic,  can-do self and was able to work all day Friday, Saturday and Sunday.  It is great to have a friend like Hugh.

Oh my, we have collected a lot of household gear.  Having lost everything we owned in the moving van fire 4 years ago, we certainly have not lost our willingness to acquire some nice "stuff".  The move allowed us to find jackets and various parts we thought were lost forever.  We were also able to see what we can thin out.  We did sell some stuff on Craigslist.  What a bore that was: Can you spell Chutzpa?  We will sell more of our winter goods on E-Bay when we get to Carolina.

We have some final boxes to pack, like the rolling tool chest.  My BBQ smoker will gets shipped via UPS ground tomorrow.  I cleaned the refrigerator tonight with Simple Green.  The crew cleaned the floors and I patched every nail hole left from the pictures and the Murphy bed.  Tomorrow, I will touch up the paint and clean the stove.  Then we will close the door, turn in our keys and bid our lovely apartment in Cambridge Good-Bye!  It has been the scene of the best of times and the worst of times.

By 11 AM, we are OFF onto our next adventure --- Road Trip !!  Family, friends and the great BBQ joint tour of Central Texas.  I never completely lost hope that this day would come, which is not to say that my faith was not stretched thin.

/Daniel for BanD

Disappearing like the smile of a Cheshire cat

   

Last  week was packing, packing, and still we did not do enough before the weekend. While four guys loaded our furniture and the boxes we had packed into the PODS, I continued to pack. Daniel had a lot of disassembly and reassembly to do, things like taking his cosmic power connection off the wall and putting the regular outlet back. (Don’t ask me for details, I just know that something was attached to the wall that he had to take off to take with us.)

And of course the professional latte machine had to be de-plumbed and the plumbing connections secured. He only had a bit of a flood.

Speaking of floods, we had one on Sunday. The PODS were mostly packed by the end of the day when (as my mother would have said) “it fell a flood.” We had a hatch door to the basement open so that the guys could take stuff right from the basement to the parking lot. The water poured down the hatch stairs and flooded the basement. Thankfully most of our stuff was out by then; the basement was almost dry by the time we left on Monday.

We had hoped to be on our way before noon on Monday, but the mover who promised to come in the morning didn’t show up. We called Artie from Buildings & Grounds; he did come and give us some help. When the PODS guy came to pick up the second POD, he ended up directing the last of the POD packing.

In a fit of genius, Daniel and I had realized that we could segregate what went into each of the two PODS and have one delivered in August and the other delivered in October after our California and NE trips. All through the weekend we were directing stuff to go in either the “early” or “late” POD. We will get most of the furniture and the kitchen stuff in August.

We already have beds in the beach house that we will need to sell. We’ll do that before the second POD comes with beds and all the rest of our valuable “stuff.” Honestly, I don’t know how two people could accumulate so much in only four years. Everything did fit into the two PODS we had ordered, though every hour we questioned whether we would have too much.

We showered and got into our fully packed van about 2:30 on Monday afternoon, happy to be on our way before the afternoon rush hour. We stopped at Daniel’s usual turnpike station to check the tire pressure as we always do when we start a trip out Interstate 90. Then we discovered that the front right tire had a huge bulge from hitting a curb a couple of weeks ago. The tire was obviously ruined and dangerous. Back we went to Newton to get it replaced. Three hours later we were back on Interstate 90, right in the middle of rush hour. We were an hour on the road getting back to the place where we’d discovered the bad tire.

I’d arranged a “couples retreat” with a spa in State College. We were supposed to be there in the evening for massages. That didn’t happen. I was able to cancel the hotel and rearrange the massages for the next day. Everything worked out better than it might have had we been on time. Daniel somehow found the energy to drive as far as Scranton Monday night.

The next day we drove on to State College and saw Tom and Margaret Benson at noon before our 90 minute massages. Wow did we need those massages. We went back to the Benson’s and had a grand time for the next twenty four hours. Tom was a professor of mine at Buffalo before becoming my colleague in the speech communication dept at Penn State for ten years. Margaret, Tom, and I have been friends for so long.

Daniel fit right in to the conversation and we talked and talked for hours. It is so great to have long time friends with whom we can share new ideas and excitements. The Bensons have a seven month old cat that entertained us all the time. He looks so much like our beloved Trout who disappeared shortly after we got to Boston. It was like going full circle in the cat world with this kitten channeling Trout and telling us that he would be OK in Boston without us (as he has been for four years). If we’d been “on time” (aka Bonnie’s schedule) we wouldn’t have had so much time with the Bensons and we would have been less for that.

On Wednesday we left for Ann Arbor, arriving here about six last night. We indulged ourselves in a fine Japanese dinner. It is a fitting beginning to a BBQ tour. I resisted the temptation to eat raw fish (not OK for immune compromised folks like me) and pretended the avocado sushi was really tuna. My noodle dish with tempura was fantastic and gentle on my very sore mouth. Saki and beer helped make the whole meal a lively treat.

Today we will tour a little on the UM campus before going to see the Wadia factory and meeting with the president. Daniel will tell you all about that.

This afternoon we leave for Chicago and the Shurman/Lavitt family visit.

Daniel and I continue to have disagreements about what is the best time to get up (7am for me; 11am for him). We are still speaking; I’m being tolerant and he is being somewhat accommodating. 

 

[Daniel's edit -  Of course it is easy for Bonnie to get up at 7am when she has slept in the back seat for 5 hours the night before, while I drive on to our destination :-)  ]

Bonnie for BanD