The Hips Don’t Lie

It’s been a year and a half since Bex’ bone marrow transplant, and things are going pretty well. First and foremost, all of the follow up PET scans she’s had in the last 18 months are showing up completely clear, with no evidence of any “metabolic activity” to indicate any issues in her recovery from treatment for Hodgkin’s Lymphoma.

Now that the treatment appears to be successful, we’ve moved on to recovery from the treatment itself. One issue that did pop up earlier this year was the detection of avascular necrosis in her hip joints. This is a condition due to the high-dose steroid treatments she had to take during her earlier battle with graft vs. host disease (GVHD), and resulted in a reduction in blood flow to the bones in the hip joint. After some time without blood flow, the bones suffer “cell death” and are at risk of collapsing under the weight of everyday movement.

After an initial consultation with a surgeon near San Diego, Bex ultimately decided to head back to Rhode Island for a second opinion before going through with any surgery.

After originally thinking she would need two full blown hip replacements, she was able to undergo a less invasive alternative known as core decompression.  Here’s her status in her own words from an email she wrote last week:

When I met with the surgeon before the surgery date, he took some additional X-rays and MRI films and found that since my hip joints were both still in tact (as opposed to already crumbling, which is how the surgeon in SD had read the films) I qualified for a less invasive type surgery called Core Decompression.  There are positives and negatives for this surgery as with everything else but in the end it seemed the better way to go for now.  There’s a possibility the surgery won’t work and I will end up needing a hip replacement after all but for now, I will just wait and see if it takes.

During a core decompression, the surgeon makes a small (about an inch long) incision on the side of my upper thigh and drills a small hole through the bone and into the joint.  They go in and scrape out all the dead bone and tissue then sew it back up.  They leave the hole there so that normal blood flow can return to the area and regrow bone where it previously died.  In theory, the bone will regrow itself and a hip replacement won’t be necessary.  I started off with the right side on Dec 12th.  Now, I have to be on crutches and bear NO weight on the right side for 4-6 weeks.  Once the 4-6 weeks is up, if the bone has healed properly, I can return to normal activity.

With this last minute change and the extensive recovery period needed, I’ve decided to put off the left hip surgery until this summer.  So far it’s been a pretty rough recovery for many reasons.  I have to admit, these last two weeks have been harder than the last four years being sick put together!!  For one, I came here expecting a hip replacement where they get you up and moving after day 2 and encourage as much exercise as possible.  What I got was a prescription not to move for 4 weeks.  You can’t imagine how difficult life is on crutches.  Especially when you have zero upper body strength from being bed ridden for the last 2 years.  On top of the physical limitations, I don’t think my body was ready for surgery just yet.  Since the surgery, I’ve been feeling pretty weak and nauseous almost all the time.  Other than that though, the real important issues have been pretty minimal.  No infections so far, which is the most important thing and the pain has been bearable.

So my plan is to stay here in RI for the 4-6 weeks that I’ll be on crutches. Once the doc gives me the ok to ditch the crutches, I’ll be coming back to San Diego.

Since the surgery I’ve been able to join her for the holidays, and her recovery is going very well.  We had a check-up with the surgeon yesterday including a follow-up x-ray, and it looks like everything is healing just as it should. Bex is even allowed to start putting a little weight on the right leg at her discretion, which should make getting around a little easier.

As Bex said above, she’s going to take a break in between the surgery for the right and left hips, hopefully using the time to build some upper body strength and make her next time on crutches a little easier.

That’s all the news for now. Hopefully everyone is having a great holiday season in 2011, and is looking forward to 2012 as much as we are.

Back On The Mend

Just a quick update to let everyone know Bex is home from the hospital and recovering well from her detour with RSV.  She’s still having a hard time with shortness of breath and being extremely tired during the recovery, but that’s to be expected with such a nasty bug.

Happy Birthday from the Universe, It Got You RSV…

Another pause in the postings here meant that, for the most part since last September, things have been going well.  For sure there have been little complications.  There was a quick hospitalization that started New Year’s Day and lasted about a week for a flare up of Graft vs. Host Disease (GVHD), there was a late night emergency room run when her medical team thought she might have a pulmonary embolism (she didn’t), but for the really important stuff we still have scan after scan showing absolutely no evidence of Hodgkin’s Lymphoma, which is exactly what we want at this stage.

Earlier this month Bex developed a cold, which is a normal part of the healing process and is expected to happen from time to time as her immune system rebuilds itself.  Anyone with school age children can identify with the joys of those first several years, sending your kids off to the petri dish we call a classroom, and just waiting to see what kind of infection they’re going to bring home each week.  The next several years will be similar for Bex as well.  With a brand new immune system taking root in her body, she’ll have to catch everything she’s caught before, get re-vaccinated as if she were a newborn, and slowly build up all her immunities again.

During this time there are a few things in particular her medical team wants to watch out for.  They perform tests for various strains of the flu, pneumonia, and virus’ that could cause it.  When Bex’ cold was hanging on longer than expected, the usual battery of tests was run to ensure it was nothing worse.  Back on February 10th, all of the tests came back negative and we continued with our weekly routine.  Her cold seemed to improve for a little while, but came back last week and seemed to settle in her chest.  Just to be on the safe side we ran all the tests again, only this time the results weren’t quite as expected.

At about 10pm Friday night we received a phone call from Bex’ oncologist, and sure enough Bex had tested positive for Respiratory Syncytial Virus (RSV).  While RSV is pretty common throughout the general population (almost every child will get it before their 2nd or 3rd birthday), it’s important to get it under control quickly in patients with a reduced immune system.  Just before midnight we received another phone call that a bed was ready at the hospital, and we started packing up to head in.  By the time we got into the hospital and settled into her room it was around 1am on Saturday, and officially Bex’ birthday.

Bex’ medical team decided to try a relatively new (but very promising) treatment involving an inhaled powder form of ribavirin to combat the RSV.  The treatment occurs from midnight to 6am, for six nights in a row, but requires a 24 hour notice before it starts so the pharmacy can make up the special preparation and get the right people in place to monitor each administration of the drug.  Bex had her first treatment early this morning and everything went as planned.  During treatment she wears a hair net and goggles for protection, and the medication flows in through a mask that covers her mouth and nose.  Since the powdered medicine is fairly messy and sticky, she has to sit inside a special plastic “tent” for the six hours she’s receiving the medicine to keep it from spreading throughout her room.  After each treatment is over, she immediately takes a shower and changes her clothes while a team comes in and wipes down everything in her room.

After the first treatment Bex says she’s feeling a little better, so with any luck the trend will continue over the next five treatments, and we can start planning for next year’s birthday to be way better than this one…

OurBex Blog 2.0

After two months of inactivity on the blog, I’m certainly overdue to get the posting rhythm going again here and get everyone caught up.  Although you might think that meant all was quiet with Bex and her recovery from the allogeneic bone marrow transplant, it was actually due to just the opposite.  Between work ramping up quite a bit in the last several months, and Bex’ treatment continuing at a frantic pace, something had to give.  Now that we’re settling into our new (still crazy) rhythm, it’s time to get everyone caught up and get back into the blogging habit.

Last time I posted Bex was coming home from the hospital and the bone marrow transplant about a week earlier than expected, and everything was going smoothly.  Over the next several days Bex developed a severe stomach ache (and some other symptoms we’ll try to delicately get into later), and after five days her medical team was too concerned to let her stay home any longer.  She was re-admited to the hospital for pain control and for a variety of tests, and after an endoscopy procedure to check out her GI tract, she was diagnosed with Graft vs Host Disease (GVHD).

We had been warned about the possibility for GVHD before leaving the hospital for the first time, and the three main forms it can take.  Essentially GHVD is a situation where the donor immune system “wakes up” in the new host’s body (Bex in this case) and starts to attack what it think is a foreign body.  One of the easiest forms of GVHD to see is a skin rash that develops over the patient’s body.  By itself the rash isn’t that much of a concern, although it can certainly be uncomfortable.  Another form of GHVD is where the new immune system starts to attack the patient’s liver.  This isn’t something the patient can typically detect, but shows up in tests performed during the frequent blood work appointments that each patient attends.  Luckily Bex didn’t have either of these two forms of GVHD, but she did have the third.

The third form of GVHD typically seen is one that attacks the digestive system.  This results in inflammation throughout the entire digestive system, which also means her body has trouble absorbing any food or medicine that she would normally be able to take by mouth.  The main purpose of being admitted to the hospital was to make sure she was getting nutrition and medicine through her bloodstream (in an IV) since her stomach wasn’t able to process it with all the inflammation going on.

Overall, Bex was in the hospital another five weeks after being re-admitted for GVHD.  We would eventually learn that GHVD of the digestive tract is measured as one of four different stages, and that she had “stage four” GVHD in one area, and “stage three” GVHD everywhere else.  I must admit I thought about all of the symptoms of digestive GHVD over the weeks because I knew I would eventually try to describe it here, and this is the best way I could come up with to put it delicately: imagine the worst case of food poisoning you’ve ever heard of, now imagine it’s twice as bad, and now imagine it lasts five weeks instead of 24-72 hours.  Yes.  It’s no fun at all.

Bex was able to come home again in the beginning of September, and so far so good, she’s been able to stay home ever since.  We still head over to the infusion center three times per week for blood work (and most days we end up staying extra time for an infusion of potassium or magnesium since she hasn’t been able to absorb much from her food), but overall it’s great to have her home again and on the mend.

Now that most of the complications from the GHVD are getting under control, we can start to focus on evaluating the effect of Bex’ transplant on her Hodgkin’s Lymphoma.  One of the positive aspects of GVHD is that we should also expect some Graft vs Disease response as well.  Just like the new immune system is seeing Bex’ digestive tract as a threat and trying to fight it, we’re hopeful that it’s finding and eliminating all of the cancer cells in Bex’ body as well.  Within the next several weeks, Bex will receive another PET Scan so we can do a comparison to her pre-transplant scans, and see what her new immune system has been busy doing for the past several months.

So that’s the quick tour through the past two months.  :)  It’s been quite an adventure, and I’ll do my best not to let it go so long next time.  As we cover new ground I’ll do my best to go back and fill in a few of the blanks in the style you’ve become accustomed to, but I wanted to get everyone caught up with the major twists and turns.

Home Again, Home Again, Jiggity Jig

Just wanted to make sure everyone got the official word that Bex returned home from the hospital yesterday, almost one week earlier than planned.  We’re getting settled into our new rhythm and back into the swing of things but everything is going great.  Bex is stronger than expected (currently sitting across the dining room table from me updating Quicken and paying bills) but concentrating on resting up as much as possible and getting plenty of rest.

More news as it happens!

Ready Or Not, Here She Comes

Yesterday when the doctor’s made their daily rounds Bex got quite a surprise.  After having many days of white blood cell counts at “zero” we got the news that she has engrafted and her white counts had climbed to 1.9 (still low, but quite a difference).  After last night’s blood work they climbed again to 7.0+ which is well within the normal range of 4.5 to 10.0.  The even bigger surprise was that she’ll likely be discharged from the hospital this Friday, a full week ahead of schedule.  Last night she received her last dose of methotrexate, which should be her last chemotherapy ever, and her medical team is concentrating on transitioning her from IV drugs to pill form in preparation for her discharge.  We’d been planning her arrival about a week later so there was some re-shuffling of tasks like carpet cleaning, purchasing new water filters, air filters, etc… but it’s all fallen into place and we’re ready for the big day!

It’s all still a little surreal, but the final phase of Bex’ recovery is about to begin.

Maralee & Me

On Thursday July 8th Bex’ allogeneic bone marrow transplant was completed successfully (and as an added bonus, it was administered by one of Bex’ favorite nurses, Maralee).  Although we originally expected the transplant to occur in the late-morning timeframe, it ended up being a fairly long wait until the late afternoon before the lab had finished processing the cells and they were ready for the big event.  By 3pm Bex was getting her pre-meds for the transplant process, and by 4pm the cells had arrived in room.

As I’ve said before the “transplant” process itself is very anti-climatic.  Essentially the cells arrive in an IV bag that looks like almost any other blood product, and it’s administered the same way.  The bag goes up on the IV pole and is infused in Bex’ bloodstream just like the IV hydration, blood products, or medication that she’s received throughout her stay in the hospital so far.  After 30 minutes or so, the transplant was complete and we were officially in “recovery” mode.

The day after the transplant we discovered Bex wasn’t quite done with chemotherapy after all.  If you count the transplant date as “day zero”, Bex learned she’ll also receive methotrexate on days 1, 3, 6, and 11. Although the purpose of the first rounds of chemotherapy was to make room in the bone marrow for the donor’s new system, this new chemotherapy is administered at a lower dose and is used to suppress her immune system long enough for the donor’s cells to find their way into her marrow and start multiplying before being attacked.

Although this is a long and tough process, Bex is tolerating it all very well.  She has periods of nausea and pain (mostly from laying in bed all day, every day) but so far it’s been controlled well with medication.  From here we just settle into the business of taking one day at a time and know that eventually this will all be a distant memory.

Rebirth.

It’s here.

Tomorrow is the day we’ve all been waiting for.  In this most recent struggle, Bex has endured through two cycles of bendamustine and the tense wait to hear if she’d find a bone marrow donor.  After receiving the awesome news that a donor was found, she soldiered through four rounds of high-dose fludarabine, followed by one round of high-dose melphalan (a mustard gas derivative). All of these drugs have been used to destroy her existing bone marrow and make room for a donor’s bone marrow to take hold and create a new immune system for her.

Somewhere tonight, the donor’s marrow is in transport, making it’s way to Bex’ medical team and a special laboratory at the transplant facility preparing to process the received cells. Tomorrow morning Bex will receive the cells like any other blood transfusion, and they will go to work navigating into the bone marrow of their new host.

Somewhere tonight, an anonymous donor is recovering from an incredibly selfless act. Several months ago he received a phone call asking him if he was willing to save a stranger’s life. He was an incredibly motivated donor and sprung into action quickly getting all of his initial tests completed within a day or two.  Since then he has suffered at least quite a bit of inconvenience, and likely some physical pain, all for someone he has never met and can’t know anything about. Were I given the opportunity to meet him now I’m not sure I could coax any words out of my mouth, likely instead standing silently in awe of the gift we have been given.

When Bex and I were married last year we used this Celtic Blessing as our final reading for the ceremony. I fell in love with it immediately and have thought of it many times since.

To Bex’ donor, wherever he may be tonight:

May God be with you and bless you.
May you see your children’s children.
May you be poor in misfortune and rich in blessings.
May you know nothing but happiness
From this day forward.

May you have walls for the wind
And a roof for the rain,
And drinks beside the fire,
Laughter to cheer you
And those you love near you
And all that your heart may desire.

May the road rise up to meet you.
May the wind be always at your back.
May the sun shine warm upon your face,
The rains fall softly upon your fields,
And, until we meet again,
May God hold you in the palm of his hand.

Let the Wild Rumpus Start!

Things have been moving fairly quickly lately but I wanted to bring everyone up to speed on Bex’ progress.  After getting a chance to visit her family on the East Coast last week Bex returned to San Diego on Friday June 25th.  Over the weekend we had the chance to relax and get ready for all of the challenges ahead, but as soon as Monday came it was time to get down to business.

On Monday Bex had a very long day going through all of the tests required before the doctors could make the final go/no-go decision on the transplant.  She had another PET Scan, an echocardiogram, a pulmonary function test, and a series of blood tests.  By Tuesday we learned all the results looked good, with the best news of all being the PET Scan results.  Compared to previous scans, this one only showed metabolic activity in Bex’ shoulder and lymph node on the right side of her neck, and were much smaller in size (and intensity) than before.  The better news was that the spots in her liver and lung has resolved completely, and were no longer showing up on the scan at all.  Overall it sounds like she was very responsive to the bendamustine treatment, which is great news.

After getting the chance to rest on Tuesday, Bex had to go to the dentist on Wednesday to get the last of some precautionary dental work performed before heading into the hospital on the following day.  All of the dental work went smoothly and by Wednesday night we were ready to get some rest before the hospital admission on the following day.

Thursday July 1st finally rolled around, and it was time for Bex to be admitted to the transplant unit at the hospital (this time in San Diego, CA).  After a few phone calls to find out if there was a bed available, we were told to check-in at around 6pm.  After a day of relaxing and packing, we celebrated Bex’ last meal without food restrictions by picking up one of her favorite sandwiches from Quizno’s and eating at home before setting off for our next adventure together.

After getting settled into her room (which is actually pretty nice, I’d say roughly the size of an average hotel room) we met some of the staff and went over the plans for the transplant in general.  If everything goes according to plan, it will all go something like this:

• Chemotherapy infusions of fludarabine over a two-hour period on Friday, Saturday, Sunday, Monday.
• Chemotherapy infusion of melphalan over 30 minutes on Tuesday.
• They could add another drug Sunday, Monday, and Tuesday depending on how well the first chemo is tolerated.
• On Thursday July 8th, Bex will receive the actual “transplant” of new stem cells.
• After 10-14 days, the new bone marrow should begin to engraft in Bex’ body and her blood counts will start to climb.

At some point after her blood counts start to climb and show stable improvement over several days, Bex will be allowed to go home and continue her recovery.  Based on when she was admitted, the best guess for now is that this will happen some time around July 29th so there’s still a way to go.  After being cleared to return home is when the real challenge starts, since the full recovery process is highly variable and could take anywhere from 8 to 22 months.  At least initially she’ll need to go into the infusion center three times a week for blood work to make sure everything looks ok, adjust her various medicines, and receive platelet or blood transfusions whenever necessary.  Over time the appointments will get further and further apart as she makes progress, until eventually she no longer needs the majority of the post-transplant medicines.

So there’s the schedule and process from a high level.  As we progress through each phase I’ll do my best to keep everyone up to date with the latest news here and explain each step in a little more detail, but as I quickly found out during Bex’ previous autologous transplant, sometimes things get moving too fast to keep up with full blog posts.  To keep up with the quick updates throughout the process, I’ll continue to tweet about Bex over at http://twitter.com/ourbex and follow-up here as soon as I can.

Here we go!

A Very, Very Quick Update

Bex was admitted to the hospital today to start her allogeneic bone marrow transplant.  Her treatment will begin with very strong chemotherapy over the next five days in order to condition her body and get it ready for the actual transplant itself, which is currently scheduled to occur next Thursday 7/8/2010.  I’ll post more of the details soon, but wanted to make sure everyone knew we’re off and away!