Wednesday, December 29, 2010

all Ds are not alike

as many of you know, Monday was Andrew's restaging PET/CT scan and yesterday was Andrew's last scheduled chemo. we have very much been looking forward to starting the new year right - cancer-free!

Andrew has officically completed 6 chemo cycles (2 treatments = 1 cycle). standard treatment duration is 4 cycles. in cases with more extensive disease, 2 additional cycles are added on 'just to make sure'. what that means is that there should not be one single itty-bitty little Reed-Sternberg cell left at this point to foment havoc or disaster.

although things went very smoothly yesterday, it was not the day of crazy rejoicing we hoped for. prior to chemo, nurse practitioner extraordinaire Shanda gave us our copy of the PET CT report:

as you can see, unfortunately we will not be starting the new year cancer-free. 2 cm = a whole passel of little R-S devils. as bad news goes, though, it is good because there is only the one spot. hopefully this means 'just' adding on a course of involved field radiation (vs having to move on to myeloablative chemo and stem cell transplant). we will be told the recommended plan in two weeks when we see the oncologist. in the interim, we are simply going to focus on all that is good and right in the world.

we know we are so very lucky in so many ways. we have each other and continue to find ways to move closer together through, instead of being shredded apart by, the enormous strain.
we also have so many wonderful, loving, amazing friends and family to help buoy us up. every day we are blessed anew with loving cards (special shout-out to Judi for always managing one more inspiring message and joyful card), thoughtful actions, and little joys.

finally, we are very aware that Disappointed is not the same as Defeated! as Andrew said shortly after we got the news, apparently his cells are just a little slow in processing the truth of his new cancer-free status. Andrew's body has taken its own path every step this far - why would things be different now?

in the end, we remain steady in our resolve and faith... but today, today is still just plain hard. today is a day of melancholy.

tomorrow we will set it aside and refill our souls with joy, wonder and laughter. we will drive to Nashville to be with my parents. together we will enjoy the lighting of our family's live Christmas tree for the first time since he was planted in the yard over two decades ago. not to be outdone, New Year's Eve offers an amazing concert to welcome another year.

for now, that must be - and is - enough.

Sunday, July 18, 2010

Ansel Adams ain't got nuthin on us!

the photos from Glacier are UP!!!

(FYI: there are a LOT so the slideshow will probably be a little sluggy to load.)

Thursday, July 15, 2010

we have a new houseguest

chemo fatigue is upon us.

unfortunately, so is hyporexia (inadequate appetite). waking Andrew to eat and drink feels cruel but must be done - within limits of course - if he is to avoid the worst of the GI effects...

Friday, July 02, 2010

the final verdict, well almost

it has been quite some time since last i updated the blog... a lot has been happening here. the biggest change is that Andrew has developed cancer. the lymph nodes on his neck enlarged while i was at ACVIM and we have been crashing through the medical machine at relative speed to be able to the name 'the monster' for knowing its name will give us power over it and allow us to make a plan.

yesterday was the summative meeting with the oncologist. it went better than expected with a couple surprises.

we knew going in that Andrew most likely has Hodgkins lymphoma, given his age and clinical signs. the hematopathologist was kind enough to review Andrew's slide with us and point out a number of probable Reed-Sternberg cells. we are trying to get hold of the pathologist to see if we can get digital photos of Andrew's RS cells. we would like to create prints to put up around the house, sort of like Wanted Posters! Andrew can then use his eyes to teach his immune system which cells need help dying. (cancer, after all, reflects an inability of the cell to die a normal death, eg apoptosis, due to mutation.) in the meantime, here a great photo i found on Flickr of a RS cell surrounded by visually normal lymphocytes:

the Reed-Sternberg cell is the bizarre large cell in the center of the photo that looks something like an owl. most of the little purple blobs around it are normal lymphocytes. because they are so whacked in appearance, it took a long time for scientists to determine that the RS cell is of lymphocyte origin. this is why the disease historically has been called Hodgkin's Disease. with the semi-recent determination that RS cells are lymphocytic, it has officially been renamed Hodgkin lymphoma. for those interested, the Leukemia and Lymphoma Society has some wonderful layperson oriented materials on this disease. i highly recommend the downloadable detailed informational booklet.

there are two big things in determining treatment and prognosis. the first is determining the Stage, e.g. how far the cancer has spread. the Stages are:
Stage 1: cancer is located in a single region, usually one lymph node and the surrounding area.
Stage 2: cancer is located in two separate regions, an affected lymph node or organ and a second affected area, but both affected areas are on the same side of the diaphragm.
Stage 3: cancer has crossed the diaphragm, but remains confined to lymphatic organs.
Stage 4: the cancer has spread to one or more extralymphatic organs, such as liver, bone marrow, or lungs

there are also SubStages:
A: No clinical signs
B: Clinical signs including unexplained weight loss, night sweats or unexplained fever

based on his PET CT scan, Andrew has two foci of activity in his spleen in addition to the big dog activity in his neck and chest. he does not appear to have activity in the liver or other non-lymphatic organs. provided his bone marrow is not involved, this would make him a Stage 3. unfortunately, bone marrow activity cannot be seen on PET scan so biopsy is required to rule out marrow involvement, which the oncologist did yesterday at the end of the appointment. (surprise!) Andrew was a real trooper. my hero, as ever.

now to substage... after a detailed discussion of our sleep habits, the oncologist ruled that Andrew's only cancer-related clinical signs were night sweats were the 5 days when the nodes 'bloomed' in his neck. this is HUGE because it means that Andrew officially is a substage A (which is associated with a better outcome). YAY!

for those of you paying attention, we need one other puzzle piece to determine treatment... that is the Type of Hodgkins Lymphoma. yes - there are different types of Hodgkins. here is the list:
Nodular Sclerosing: the most common type of HL. this type is associated with deposition of secondary scar tissue in the cancer areas, which means that tissues may not return to pre-cancer size even if the cancer disappears. this is why PET scans are used over CT scans to monitor resolution of therapy - they measure activity in addition to size.
Mixed celluarity: similar to above but without scar tissue.
Lymphocyte rich: quite rare.
Lymphocyte depleted: quite bad.
Nodular lymphoctye predominant: rare. very slow growing. often responds to wimpier chemo.

Monday, Andrew had a surgical biopsy taken to determine Type. they went ahead and placed a jugular port for chemo at the same time. this is a wonderful invention that means Andrew will not have to have repeated IV catheterizations for chemo and decreases the risk of chemo extravasation.

so, the bottom line... provided the bone marrow is clean, Andrew will be classified as having Nodular Sclerosing Hodgkins, Stage 3-A. the treatment standard is ABVD given once every 2 weeks, but it will be 12 2-week cycles instead of the 3-4 cycles used for Stage 2. [we are bracing for a long six months!] on the flip, because the disease is so widespread, involved-field radiation is generally no longer in the picture. so instead of two therapy types with differing side effects, we will only be facing one but it will go much much longer.

the goal is still cure - thank the Lord for large mercies. McCachren is estimating overall 90-95% 5-year survival with 80% chance of cure with this treatment plan. (McCachren really thinks ABVD should make Andrew better, though he promises we will end up hating him first.) if this does not work, we may be looking at less fun treatment protocols (myeloablative therapy and stem cell transplant etc) but still with the end goal of Andrew and me getting old and defective together. YAY!

there are still a few tests to go. because of the potential for long-term heart and lung damage from the chemo, Andrew needs to have an echo and pulmonary function testing. also, since he is a fine, young buck, sperm banking. frustratingly, the sperm banking may delay starting chemo for a whole week. :( there is only one place in town and the woman who books appointments won't be in till Tuesday. if we can get that done in time, Andrew can get his first round of chemo Thursday the 7th. otherwise we are looking at the following week. we would obviously prefer not to wait, especially since Andrew's fatigue is worsening rather quickly and his appetite is now come and go. frustrating.

still - all in all - better news than we had dare hope!

we marvel daily at all our gifts - having one another to buoy, comfort, tease and caretake in turn; our amazing medical team who have all been great at their jobs, expedited the work-up so we could still take our trip to Glacier National Park, and have by turns been tender and funny and patient and just the right amount of chiding; our remarkable and loving circle of friends and family, who every day surprise us with new resources, 'normal' attitudes and thoughtful offers; and a wonderful God made manifest in the striking and monumental vistas of Glacier, the presence of a new bird at our feeder, the kindness of strangers, and the strength that fills us when we had been certain we were empty.

we look forward to learning and growing throughout this amazing and harrowing adventure. we hope you will join us!

ps. Andrew has started a blog, for those who wish to play along at home. i know he would love your comments.

pps. for those artistically inclined (or not), we would love to fill the house with words of encouragement and love and images of all the wonders in nature that will await us when we complete this odyssey and get to embark on the next. shout at me if you need our address.

Sunday, January 17, 2010

Sevier Heights: the remodel, days 2 & 3

day 2 actually began with great conviviality on night 1 when Mom and Roland rolled into town. we had a marvelous time dining on fish and chips at the Crown and Goose as you can see here:

Day 2

our assignments for the weekend were to order tile for the second bathroom floor and to buy paint for the entire house. if we could get some painting in, that would be bonus points.

our first stop on day 2 was Stover's Tile and Liquidation where we met Mike:
Day 2

Mike was truly not the retiring sort but some folks just don't care for the camera... Stover's is rather inconveniently located so we had hoped to accomplish our mission in one trip (hear the merry peals of laughter from remodelling elves yet?) but 1 inch floor tile is just not that popular. turned out it was going to have to be shipped in as a special order, which often takes 10 days.

Mike just couldn't understand how two days overlap from move-in could be too close until i laid out The List in front of him, highlighting all the items that had to come after the floor. we came up with a compromise. i picked out four tile colors, two of which are shown here:
Day 2

Mike agreed to personally call the central distributor and determine the relative shipping distances of the tile colors. i told him he could surprise me on final color as long as we had the shipment by day 8. Mike found that a pretty funny and semi-insane attitude for a homeowner embarking on such an epic remodel...
Day 2

he just had no idea how hilarious. after we left Stovers, it was on to Sherwin-Williams where we met Matt:
Day 2

who tried to help us pick paint. our first color choices were, shall we say, sour. homework, however, is homework and we are all teachers so we armed ourselves with study guides:
Day 3 Day 3

and by the end of day 3 we had the Audi loaded to the gills with paint and managed to even get our first ceiling painted (and carpet torn up):
Day 3 Day 3

we also managed a wonderful breakfast at the Round Up Restaurant & Ice Cream Parlor:
Day 3

where we met the famous and famously sweet MaryLu:
Day 3

with as many times as she was about to save my heiny (in one way or another), MaryLu really belongs in the A-Team and maybe should have gotten a medal, but that will come later...

Sevier Heights: the remodel, day 1

when i bought the house, i resolved that i would share the remodel progress on the blog. after all, it isn't often in one's life that a person attempts to do 4 months of remodel work in 2 weeks with a few very good friends.

between working on the house full-time for those weeks, continuing with my day job (some deadlines could not be moved), and getting The Influenza - there was no time left at the end of the day to upload photos or write. The Influenza dragged on for weeks after the remodel, slowing me down dramatically, and it is only now that i have been able to carve out time to edit the photos and start the reporting. we certainly worked our tails off, but we also had a wonderful time.

The A Team: Starting Line-up

Day 8
Don - a Habitat buddy and professional contractor. Don was finishing two new houses early and volunteered two weeks labor on my remodel. Don's most used phrase - "You're the homeowner. What do you want?"

Day 12
Dora - a Habitat buddy. married to Don. crack construction skills of her own. amazing pumpkin cookie baker as well. Don didn't want to activate Dora unless we had to, probably because Dora's most used phrase was - "I don't care how much work it is. She's the homeowner; she can have whatever she wants."

Day 14
Chris - a Habitat buddy. works for Don now. Chris is from Texas and used to be a professional bull rider. because he is an American, Chris will only eat 'American' and Mexican food. Chris' most used phrase - "But this is jacqui's house. I want it to be perfect."

Day 8
me - happy and (perhaps delusionally) full of faith. my most used phrase - "That is hilarious... Okay. How are we going to fix it?"

The List 1.0

  • Remove aluminum awnings
  • Install shutters
  • Tear out concrete drainpipes and rebuild
  • Tear out 2nd driveway and fix grade/slope so water no longer pools against foundation
  • Tear out shrubs in front of house and fix slope (so water no longer pools against foundation)
  • Install window wells
  • Replant front of house
  • Apply sealant to cracks in brick mortar around house
  • Install mailbox
  • Replace garage doors and install openers
  • Fix gutter by office
  • Replace and seal boots on roof
  • Add stepping stones or walkway from driveway to front of house
  • Fix floodlights over driveway
  • Repair screens in screen doors
  • Install post in basement to shore up alcove next to stairs
  • Fix leaks under basement sink
  • Correct double-tapped circuits
  • Turn off power to Ceil heat
  • Tear out counters in main kitchen
  • Rearrange kitchen to install dishwasher
  • Replace/install garbage disposal
  • Add shut-off valves to kitchen water lines
  • Install new kitchen counters
Second kitchen
  • Remove stove and frig from second kitchen
  • Install dryer vent from second kitchen
  • Move cabinets in second kitchen to accommodate stacked W/D unit
  • Rewire for W/D
  • Install W/D in second kitchen
Small bathroom
  • Tear out bad vinyl in small bathroom
  • Tear out bad shelving unit
  • Fix subfloor
  • Replace with tile floor
  • Replace vanity with new sink unit
Main bathroom
  • Fix missing tile
  • Fix light fixture
House at large
  • Cut big-a** hole in wall between kitchen and living room
  • Remove 5 unnecessary doors and patch doorjams
  • Remove carpet
  • Patch cracks in walls, ceiling, stairwell
  • Remove second thermostat
  • Paint whole house including closets and stairwell
  • Replace questionable light fixtures
  • Replace outlets with 3-prong
  • Clean or replace drapes
  • Replace water pipes? (this was very contentious initially with most of the team opposed)

Onto Day 1's progress...

Day 0, Don and i met at the house to review the basics of The List and so i could give Don a set of keys. you see, sadly for me, i had to work Day 1. that did not in any way stop Don and Chris from launching the first assault...

i received my first voicemail from Don at 9:18am:
Hey Jax. This is Don. i just wondered... if you have any time between classes and you wanna call the recycling people, there is a pile of aluminum sitting in the driving and you can tell them they can come take a look at it. see ya.

whoa. the awnings


are down!

Day 1

by noon the living room wall went from this:


to this:

Day 1

Day 1

... discovering in process that the electrical for two outlets ran right there and that a light switch in the living room controlled that outlet visible in the kitchen photo as well as an outlet in the living room. this amused me no end and so, instead of removing the switch and replacing with a blank outlet cover, i asked that we leave it.

other progress on day 1: they patched the boots on the roof, took off all the extraneous doors and moved to the basement, and figured out how we could patch the jams.

unfortunately, they also discovered that the wall tile in the main bathroom wasn't, well, tile...

Day 1

it was Econ-O-Tile. fake plastic tiles not seen since the 50s.

hmm. this could be interesting...