I’m chairing the inaugural Mission Committee for Blood Cancer United’s Light The Night event in Hartford this autumn. Held in over 100 locations throughout the US, this event celebrates, honors and remembers people affected by blood cancer. Patients and survivors, along with family and friends gather and literally light the night with colored lanterns signifying their role in the community on a short walk.

I’ll be walking with a group of friends at the event in Hartford, which isn’t exactly the easiest location for any of us. Part of what the Mission Committee does is increase community support. I’m helping to build the Connecticut community in person with my friends and hoping you will help me build it online.

Will you join me in making a donation to an organization that helps patients and families as they navigate their diagnosis and treatment along with funding vital research?

If it’s not possible for you to support me, I totally understand. Please keep your fingers crossed that we will have good weather on the night.

Best —

Jennifer xx

I’ve travelled, I’ve gone to theatre, I’ve attended concerts, I’ve spent time with family and friends, I’ve obtained a part-time job, I’ve had my port removed.  I really am living again.

Sure, I need to have one more set of vaccinations because the antibody test revealed that my last set didn’t take.  But my bone marrow biopsy in May was excellent and in all likelihood this was the last one I will ever need.  What a giant relief.

Surprised to hear I’m working?  Me too!  Remember The Cancer Collection, the needlepoint pillows I stitched in the hospital and while recovering?  Well, I’ve used my hobby to help me gain employment.  I now spend about 20 hours a week in a needlepoint showroom, selecting canvases and threads that have been ordered by stitchers online.  I pack them up to ship throughout the country.  It’s enjoyable and creative.

I’ve also taken on some serious volunteer commitments with both the Leukemia & Lymphoma Society (LLS) and NMDP.  I started by speaking to patients preparing for transplant, which is connecting and satisfying.  I can tell others what I went through to help them get ready for their own journey.

In July, I had an opportunity to do a community outreach meeting with LLS and Yale hematology nurses to talk about patient communications.  How amazing it felt to be able to contribute as a person with significant patient experience, helping me offer unique insights. 

Next month, I will begin serving my term on the Patient and Family Advisory Council at Yale for which I applied and was selected.

I will be traveling to Minneapolis, the headquarters of NMDP, for a 3-day training on advocacy in September.  I was invited to be part of the Advocacy Volunteer group for NMDP.  I’m thrilled to put my communications background to use with a new stakeholder group: government.  I’ve had a gentle introduction to this work earlier this week, speaking with the healthcare policy advisor for my senator about co-sponsoring a bill that would offer critical job protection for stem cell donors as well as funding for the national marrow registry. 

While I’m in Minneapolis, I will be participating in a fundraiser with NMDP to support World Bone Marrow Donor Day.  I didn't know it was a thing either, until recently.  And I thought I knew a lot about bone marrow donation.

Will you help me reach my fundraising goal of $5,000?

Your tax-deductible contribution will help NMDP bring new potential life-saving donors to the NMDP registry, remove financial barriers to transplant for patients in need and fund groundbreaking research to help patients live longer, healthier lives.

I’m saving lives and so can you—join me by making a donation to NMDP.

Thank you for any donation you can make.

Click here to support me.

While my immune system is still recovering, he said since the shingles shot is a dead vaccine rather than a live one, it’s safe for me to have it now.  He instructed me to go off my meds for 3 days and then get the jab.  This was very exciting news!  I strolled in to my local pharmacy one morning and proudly rolled up my sleeve. 

As with any vaccine, people experience a variety of reactions and I’m delighted to say that I was reaction free.  It’s also worth noting that this is the second time I’m being vaccinated for shingles.  I followed the original guidance to have it over the age of 50, however my pre-transplant chemo wiped out my protection which is why I needed to be revaccinated. One of the transplant nurses wisely said, you do not want to get shingles!

Dr Cheese and I made other plans when I saw him.  Final childhood vaccinations, including MMR, to be administered in April.  Hurrah!  This means I’ll finally be able to stop masking.  I’ll also do two-year biopsy in the spring and after an interim check-up, my appointments are likely to drop to twice a year. 

I see Dr Oz at the end of March and we’ll be talking about when I can have my port removed.  With chemotherapy well in my rear view mirror and blood tests dropping to six-monthly, there’s no good reason to keep my port.

My gallbladder recovery is going well, even if my digestive system is still adjusting to the lack of organ.  And my visits to the gynecologist have slowed down after some intense time together from November to January.  She’s insisted on me returning a couple more times this year for routine tests, but we’re hopeful that everything stays stable and there will be no changes necessitating a new specialist.

So excited to be closing in on my two-year anniversary!

So instead of the organized tour and luncheon today, I spent time on the phone with the insurance company.  What a deep joy.  Seriously, it wasn’t too bad, however, let me highlight that these are follow-up calls to those I made last week.  At the start of last week, I learned that my insurance was ending in the middle of December rather than at the end of the month.  I applied some hustle to getting new coverage for 2024 and also coverage that would be available for the last two weeks of December.  Not exactly what I needed to add to my plate last week, but I’m happy to say, everything seems to be moving in the right direction and I’m anticipating that I will receive my new card soon.

Last week was also an interesting experience when thinking about my theme for the year, Being Alive.  After 14+ months of treatment and recovery, I was feeling significantly better when 2023 began and yet still a bit nervous to live.  I created opportunities outside of my home to remind myself that living happens out there.  Some highlights include seeing Mandy Patinkin perform live, meeting up with long-time friends and getting on a plane.  These were all activities that I missed during the end of 2021 and much of 2022.  To feel well enough to do more each day was an amazing achievement.

And yet, when the surgeon insisted I return to the hospital last Wednesday and The Italian Job told me pancreatitis was back, it was easy to revert to a scary diagnosis mindset and wish that I had been more prepared.  Why didn’t I have a go bag packed with me that day with things that would have made a hospital stay easier?  If I really was spending a few nights in the hospital, I needed my iPad and chargers, travel blanket, bathrobe and some jammies.  While I lamented not having these items with me on arrival, Mom was able to find what I needed and bring it to me the next day.  The nurses charged my phone when it got low.

While I thought of the items I needed, I also realized that my hospital survival skills from being in-patient for 100+ days had been pushed from my mind.  I forgot about needing a plastic cover over my port before bathing each day.  On more than one occasion, I was about to get in the shower and realized my shower shield was missing!  I also forgot the best way to thread the IV line while wearing clothes.  One evening, while changing into pajamas, the nurse had to stop the fluid bag in the pump so it could be physically unraveled from my shirt.  I used to be a master at which way the tubing needed to go, but I’ve lost this knowledge along the way.  I’m not sure this is a bad thing, but I remember it being second nature before, so it’s funny when you forget something that was part of a daily routine.

It was also amazing how quickly the hospital malaise set in.  My amazing transplant team was able to help me skip the ER for admission on Wednesday and instead I was processed through the Extended Care Clinic in Smilow Cancer Hospital.  This is a unit with about 10 to 12 reclining chairs where patients wait after an infusion or hospital admission.  After my blood draw on Wednesday night, I was there for about 5.5 hours and literally spent most of it lying on the chair wrapped in a blanket.  I had two books with me to read, but couldn’t focus.  The distraction of my phone wasn’t welcome, so I just tried to lie there calmly, sleep a bit and wait for the next update on when a room would become available.

I felt the same malaise the next morning when I woke up, knowing I should be getting up and walking around, but not really having the motivation to do it.  When the rounding doctors came in, several extra nurses and physicians assistants piled into my room to say hi.  They remembered me from my previous stays at Smilow and took time to come in and greet me.  Knowing how the medical team was looking after me motivated me to get moving as I headed out into the hall to walk the floor.  I turned on a podcast, put in my AirPods and circled the floor on multiple occasions. I even met Mom in the parking garage when she arrived on Thursday with my suitcase.  For whatever I would face over the next few days, I needed to keep moving.  There was no reason to my body slide into any state of deconditioning by spending all day in bed.

Now that I’m home, it’s easier to be motivated, but equally with the gallon of milk lifting rule, I need to be careful.  While I want to supplement my regular work-out routine with longer walks, I’m reminding myself that slow and steady wins the race.  The walks I’ve taken the past two mornings have been slower and shorter that normal, but that’s ok.  As I keep resting my body, it will feel better and I’ll be able to do more.  For now, rest is a top priority.

Which is how I realized New York would be just a bit too much today.  There’s plenty to look forward to when I’m feeling better and no need to push myself resulting in an unnecessary setback.

The halls of Yale as well as the pre-op and post-op areas were eerily quiet and my medical transport, who wheeled me downstairs in my bed, said that is because it’s Sunday.  I was in Operating Room 8, my lucky number, and having a calm and relaxed surgical floor was just fine with me.

My anesthesiologist did confirm that redheads need more anesthesia and pain medication.  This came out during the “do you have any questions?” part of our conversation pre-surgery.  Obviously, I also had to explain that I’m a former redhead since chemo took my locks twice.  But as I feel I’m red deep down inside and I’m still adjusting to the blonde that now sits on my bonnet, I thought this was important to cover.

Meanwhile he said I wouldn’t feel any pain immediately when I came out of surgery and I’ll have to disagree with him there.  Luckily, the post-op nurse was more than happy to give me a few doses before I was rolled back upstairs.

The most intense pain at the moment is in my right shoulder, thanks to my air-filled abdomen.  This is done to help separate the organs for ease of removal.  That said, my abdomen does also hurt.  Bending over is tough and even when I’m lying down, it feels like I completed a very intense ab workout.  Luckily, it doesn’t hurt to laugh.  But finding a comfortable sitting or laying position can take a minute.

Some of you may know that my father had his gallbladder removed in a time well before laparoscopy and had an 8-inch scar that he never tired of showing people.  In contrast, while my surgery required four separate incisions in my abdomen, they are only one to two inches in length. There will be no dramatic scar reveal on my part.

Why so many cuts? Two or three are for the cameras that assist the surgery.  Who knew?  Between endoscopy and surgery, I’ve certainly had a lot of cameras checking out my insides in the past few days. The incisions are all covered with bandages, which will I will remove tomorrow. Underneath there’s steri-strips and dissolving stitches on the inside.

Before I was released this morning, one of the physician’s assistant in the rounding team, who also saw me in transplant, remarked about how well I looked and said that she had been hearing this from the team all week since my arrival. I said I always like to keep surprising people with how ill I am and how well I look.

I did walk the hospital floor a few times before Mom came to collect me. Not with the same speed or number of laps, but I am committed to keep moving during the healing process.

Leaving the hospital today was awkward. You may know that I have reveled in walking out of the building rather than going by wheelchair. And I did walk to the garage as usual. The tough part was not being able to lift my suitcase and having to have a nursing assistant take care of my luggage. This is going to take some getting used to. Possibly even the full six weeks of recovery. Wish me luck in remembering this.

Following Endoscopy Plus yesterday at Yale, I have been placed in the add-on surgery list for tomorrow to have my gallbladder removed.  Fingers crossed I don’t get bumped and that I’m back home by Monday at the latest.

The report after my medically induced nap was while there was nothing to clean out, my gallbladder should be removed before discharge.  This was welcome news if it could bring an end to my abdominal issues, however hearing this on late Friday afternoon didn’t necessarily fill me with joy from a timing perspective.  I wasn’t keen to languish on the inside over the weekend and have surgery at some point next week. Even if I’ve got a good room and the team are looking after me so well. Because, of course, hospitals are like any other business. They’re kind of closed over the weekend, except for emergencies.

So while I waited to find out exactly what would happen next, the enhanced scope bought me another night of observation in the hospital. With extreme diligence this morning, I was ready and waiting for follow-up consults. I spoke with both GI and oncology about next steps. And then I talked to the surgical team three times because agreement to proceed was ultimately in their hands. They wield the scalpel after all.

Convinced that I would be discharged today and come back next week for outpatient surgery, junior surgeon Daniel Son found me about to zip up my suitcase when he arrived in my room late morning. He made some typically confident surgeon comments and he also gave me a glimmer of hope for a weekend op slot so I didn’t shut my case. 

Dr Brasserie arrived next and the packing was referenced again. I pointed out that it had stopped after seeing Daniel Son and that if he could get me on the schedule, I would be his most enthusiastic patient. As an aside, he and his senior surgeon were surprised to enter the room and find the patient fully dressed and walking around.  This is not the first time a medical team has been surprised at how I look given how bad my numbers were when I arrived. 

Dr Brasserie went on to explain that he didn’t believe my case was as straightforward as it might seem.  Please, please tell me something new, I said and then recounted that hematology found three mutations in my cancer, two of which are never seen together.  Surgery is your medical specialty and not being straightforward medically is mine.

He went on to say that what I experienced this past week was mild pancreatitis.  And while a gallbladder can cause pancreatitis, so can alcohol, high cholesterol and a scorpion sting. Since none of these are present in my life, I have to believe this flare was due to my gallbladder and that removal is the way to go.

As a side note, Dr Cheese has been saying for 6 months that he believes my gallbladder caused my pancreatitis back in 2020.  While there is no way to prove or disprove this theory and it has taken me time to believe taking an organ out of my body is the right option, I told Dr Brasserie that I was ready to say goodbye to my gallbladder, Abbie Normal.

In between doctor visits, I have walked many hallway laps today, both with and without my IV pole. A fantastic time killer, walks are also the perfect tonic to how hospital rooms drain you of energy. Keeping the body moving is key to getting ready for the OR and a fast discharge.

Finally, Daniel Son reappeared at about 3 pm holding a magical piece of paper, a consent form, and saying I had just been added to tomorrow’s list of patients. When I cheered and fist pumped, he said he had never seen someone so happy to be told they were having surgery. I explained that yes, I am my own special brand of extra.

Regular caveats apply here, particularly on a weekend. If there are too many traumas coming into hospital tonight, there may not be an operating room available tomorrow. So please keep your fingers crossed that things are quiet in New Haven this eve.

Depending on what time surgery happens, I could be discharged tomorrow, however Monday seems more likely. Recovery time to get moving again is fairly quick, so I’m ambitiously keeping in mind that I’ll be able to make it into New York on Wednesday for a pre-arranged tour of the Morgan Library. Too much? Maybe. It all depends on the pain meds and how I’m feeling.

What I’m waiting to think about until after surgery is that I can’t lift anything heavier than a gallon of milk for six weeks. This will impact my workout routine and my packing for a Colorado Christmas. I’m not ashamed to say I explained to the surgical team that this will be the first year Mom and I have been able to go to my brother’s since 2019 due to the pandemic and then my illness. It will be the first time we celebrate together without Dad.

But to be able to spend the holiday with family makes me more than willing to pare down my packing list.

On Thanksgiving Day 2021, I was completing my first 24 continuous hours of chemotherapy with 6 more days ahead, having just been diagnosed with acute myeloid leukemia (AML).  Although we knew I had three mutations, what we didn’t know then was that I would ultimately need a bone marrow transplant, which came along in March 2022.

This Thanksgiving, Mom and I celebrated with my dear cousin and her family just outside of Boston.  Exactly where we were meant to be in 2021 before I took up my first residency at Yale New Haven Hospital.  To be sitting at the table last week with everyone was extremely special to me.  I am so very thankful for my life saving stem cell donation and transplant and the amazing care I’ve received from my very many doctors and nurses.  Thinking about it makes my throat feel a bit tight, even now.

It was also a joy to celebrate the holiday because this week was packed with medical appointments.  Four out of five days had me seeing doctors.  I haven’t had this kind of schedule for over a year and I was determined to get to the other side to enjoy lunch with friends on Saturday. 

Best news first?  My regular quarterly appointment with Dr Oz went very well on Monday.  After I received a second opinion from Sloan Kettering in New York, we agreed that my recovery so far is strong and I will not be put onto a final chemotherapy drug for maintenance.  This is really great news and I am truly triumphing in this.

From here, though all the news go south and isn’t resolved yet.  It’s not terrible, but reader, you may want to take a seat.

It starts with some disturbing liver enzyme numbers that came back in my bloodwork from Monday.  I saw it in the hospital app on Tuesday just before radiology called to bring me in for an “emergency” ultrasound on Wednesday.  Transplant added additional bloodwork to this to check my pancreas enzymes as well.

After completing this on Wednesday morning, I headed to meet my new GYN, Dr. Fawn.  Because my primary care doctor, who discovered my leukemia through a routine physical, is nothing if not thorough, I needed to see a gynecologist for a follow-up pap smear after my GP got dodgy results the first time round. “For anyone else, I tell them, come back in 6 months.  But you are not anyone else.”  From the bottom of my heart, thank you for looking after me so well.

The second pap didn’t happen on Wednesday though, rather I will have a colposcopy in December.  Dr Fawn, said a repeat test would show the same inconclusive results and she wants a more thorough test.  She “kindly” explained the procedure in detail, including that Valium is often prescribed beforehand.  Honestly, I think I might have needed the Valium to hear the description as she talked me through the use of vinegar, a microscope and a mascara wand to examine my cervix and collect cells from it.  Oh how I look forward to this!

Before I saw GYN, Dr Cheese from Transplant called to try to convince me to come back to Yale that day and have an in-patient endoscopy rather than waiting until Friday for the outpatient appointment I scheduled 6 weeks ago. 

In extremely clear terms, I let him know that I was not interested in this solution.  Yes, I understood my bloodwork was bad and I acknowledged that my abdominal pain is now persistent rather than occasional, but not as strong overall.  However, I told him I could live with the pain while I was seeing gynecology and there was no way I was missing my mammogram and ultrasound on Thursday (primary care also found cysts in my breast during my physical).  He had zero idea how hard it was for me to get the appointments and there was no chance I was missing them.

We concluded our call with an agreement that I would ring him on Thursday to tell him how I was feeling and that I would also call the surgeon I saw in October to discuss my blood numbers.

I dutifully called Surgical after my appointment as I was making the 45-minute drive home and was explicitly told that I needed to return to Yale immediately and be admitted for observation.  She was making no promised to remove my gallbladder and I was not accepting that this was the correct path.  However, she made a compelling case in talking about infection (terrifying for anyone with a compromised immune system), IV antibiotics and my previous pancreatitis.  She was less swayed by my need for female follow-ups and I finally relented.

SEVEN hours after I arrived back at Yale, I made it into my room just before midnight.  This was shortly after The Italian Job, Wednesday evening’s on-call oncologist, came to see me and we talked about what my possible issues were.  He felt the best course of action was an endoscopy that included a complete check of the pancreas and gallbladder ducts.  To see what the ultrasound and the HIDA scans weren’t showing.

And this is exactly what I’ve been waiting for all day today.  Originally scheduled for 430 pm, it was then pushed to 645.  It requires sedation, so I haven’t had anything to eat since last night.  At about 530 pm, a nurse practitioner, who remembered me from transplant, came in to tell me that there were too many emergencies today and my endoscopy was pushed to tomorrow.  Afternoon.

“I’m sorry.  It’s pushed to FRIDAY?  AFTERNOON?  When I already had an OUTPATIENT ENDOSCOPY SCHEDULED??  I could have been in my own bed last night and tonight and likely tomorrow???  But instead I’m here.  At Yale.

“And my liver numbers, which are still elevated today, have DECLINED OVERNIGHT?  So I’ve been sitting here today waiting for the procedure and now I’ve got NOTHING to show for it beyond slight improvement in my situation??  Is that about right?”

(Dear reader, please know I have used capitals for emphasis here.  I did not yell any of these words.  Even when I wanted to.)

She appreciated my frustration and had been loathe to tell me of the delay.  She also said she believed it was absolutely correct that I was admitted yesterday.

Well, okay.

On the plus side, she also told me that when I finally get this endo, it will check for everything.  It’s a bit like going to the cardio cath lab where they’ll put a stent in your heart if they can so you can avoid bypass.  If the team can do anything to alleviate an issue with my gallbladder (short of surgery), this will happen during the endoscopy.  So that’s extremely positive.  I’m clinging to a belief that the outpatient endo wouldn’t have been able to be this thorough.

After a full day of nil by mouth, I’ve been given the go ahead for clear liquid and can report that broth, ginger ale and Jell-O have just arrived in my room before I start the whole no eating thing again at midnight to prepare for tomorrow.  For appointment time, undetermined.

In case you were wondering, I asked the doctor during rounds this morning if she could sort out my mammo, ultrasound and colposcopy while I’m on the inside and she declined the opportunity.  The nurse was beside herself with laughter when I asked.

Which wasn’t my intention, but you know I like to keep it entertaining for the team here at Yale.

Today, we’re flying to Las Vegas. While we’re there, we’ll take a helicopter ride to see the Grand Canyon, watch Cirque du Soleil and attend Adele’s concert.

On Saturday, we’ll head out on the open road to see Zion, Bryce and Arches National Parks in Utah. Then we’ll then make our way to my brother’s in Durango, Colorado to visit with them and see Nephew 2 in his high school theatrical debut before returning home.

Mom and I are both excited to finally be on our way.

Given the nature of the past couple of months, I’m sure you’ll understand that these are all relatively recent bookings (with the exception of the Adele concert, which has been booked since early summer). Like within the past two to three weeks recent. A planner at my very core, this trip is more reminiscent of my business travel days where everything happened at the last minute because it could get cancelled at any moment.

Along with our itinerary, I’m pleased to report that Mom is feeling good. The steroids have helped reduce her inflammation so she feels more mobile. We have a follow-up with the rheumatologist in December to see if we can learn anymore.

In relation to my health, I have now seen a surgeon who says that based on what she sees in my scans, I’m not a candidate to have my gallbladder removed at the moment. She referred me to a GI doctor and I have an endoscopy scheduled for early December to see if we can identify the cause of my abdominal pain.

I’ve also been for my annual physical and am slightly disappointed to say that my GP cannot help herself but find issues. I’m in the process of doing follow-ups on two abnormal tests, which I could really do without. Will keep you posted when I know more. In the meantime, if you have any spare good thoughts to send my way, I would appreciate them.

I look forward to providing news of a great trip!

Instead, she’s writing to you directly from Connecticut, where we most certainly did not expect to be at this time.

Take it away, Mom…

Hi Dear Friends,

I don't think I have ever been sick like this. At least not with this combination of symptoms that led from one to another. All this started on the original day Jennifer and I had planned to take off on our cross country road trip. As you may recall, we delayed this because Jennifer was having unexplained gastric pains and that didn't seem like a good way to start driving to California.  Smart thinking. 

New plan was a two-week trip to California, flying to visit my brother and whatever parks we could - Yosemite and Sequoia, specifically. However before our planned departure the unpleasant first symptom hit me (yes, the same one that had the woman ejected from a plane recently), and when it finished, the fevers started.  I ended up at Urgent Care in town followed by the first trip to the ER just two days before our California flight.  

Neither set of doctors had any idea what was a going on or what to do. When I still wasn't better, I went to my primary care doctor realizing the trip was not on for now. She gave me an antibiotic which covered lungs and GI track and wanted me to get an X-ray to rule our pneumonia, plus she sent off blood to lab. Blood work came back negative for anything tested, Covid, Lyme anything else she could think of and X-ray showed no issues. 

Then the next symptom had taken over my body - profuse sweating, and chills. I found out they have a term for that - chilled sweating. Highest fever ever was 102.3. Considering how much water I was releasing I thought it would have at least gotten to 104. But now lots of subnormal numbers, the lowest being 94.2. Ever had one of those?

Then my joints became inflamed and very painful. When my right knee, right ankle and right hand were at their worst, I was really incapacitated and limping badly. 

So back to primary care on Monday who sent me immediately to the ER with directions to be seen by the rheumatologist. The specialists finally came in late Tuesday afternoon and I spoke with the resident and then the attending doctor.  They had studied all my tests and my diagnosis is Reactive Arthritis. Something they couldn't determine had gotten into my system and had set off this chain reaction of symptoms resulting in the swelling and pain.

The treatment protocol is a tapered program of steroids for about a month.  In 95 percent of cases, the steroid will resolve the issue and I have a follow-up scheduled in 2 months to ensure this has been successful.

Isn't life amazing sometimes? I am here being taken care of and coddled by a very loving daughter. I feel so lucky that she is here with me and since she is still not approved to work by her doctor, she’s not being pressurized by a job. How life has flipped a switch for us both during the last 3 1/2 years. Neither of us would have predicted would have happened. What is it  that that people say about things happen at certain times for a reason? 

Oh boy, do I hope the doctor is right about the progression of the body clearing. . We do have a trip planned at the beginning of November (ADELE! GRAND CANYON! GRANDSON IN HS PLAY!) and if all goes as prayed for, you will be reading a very happy post from the Two Trapped Travelers!

And for once, it’s not me!

Mom has been experiencing some digestive issues over the past couple weeks, which seemed to get better, but a fever over the weekend sent us to Urgent Care and the emergency room.  Without definitive answers and an inconsistent temperature that has reached over 101 degrees, we decided to push back our trip.  Bloodwork and urine tests so far have been normal, but Mom will see her primary care doctor tomorrow and see if we can get a more definitive answer to why she’s feverish and so very tired.

Please keep your fingers crossed that she improves quickly and we can travel next week!

Let’s get the medical stuff out of the way first.

On Monday last week, I had a failed hepatobiliary test.  The test is the next step up for gallbladders when patients are still complaining of pain and an ultrasound doesn’t reveal any gallstones.  The test is designed to check the liver, gallbladder and bile ducts, which can become blocked and cause pain, by administering a radioactive tracer that is observed by gamma spectrometer. Yes, I’m still building my medical knowledge.

Consistent with the ultrasound I had in July, my gallbladder chose to hide during the HIDA scan.  While not nearly as traumatic as my failed bone marrow biopsy when I was first diagnosed with leukemia, given the approach my body likes to take with the medical establishment, this failure shouldn’t have been a surprise at all.

The tech explained that this almost never happens during outpatient scans.  Of course, what she didn’t realize is that almost never is where I live.  She said that the next step was to administer morphine, which was problematic given that I had driven myself to Yale and wouldn’t be able to drive home.  She called in the resident for a consult, who asked about how much pain I was in.  His solution was to admit me through the ER for immediate surgery (umm, no thank you!) or to reschedule the test down the road.

In a strong attempt to hold it together, I briskly stated that as I had just cancelled a two-month trip, I wouldn’t be waiting weeks for a reschedule.  The tech saw my clenched jaw, promptly opened up the schedule and was able to find a slot for me to return on Thursday.  The timing coordinated with my afternoon appointment with Dr Cheese. I can’t stress enough to you that this kind of synchronicity never happens!

With all the positive feelings, Mom and I made the trip to Yale on Thursday.  First stop was to have my blood drawn in the hematology clinic so that my port would be accessible for the nuclear tracer needed for the test. While my veins are notoriously hard to obtain blood from, because I have to have blood drawn frequently, the port makes this much easier.  The entire process should take approximately 3 minutes from start to finish. Except of course on this day. 

Already shoehorned into the schedule, the nurse worked for 45 minutes to fill the blood vials needed.    By then end of our time together, her hands and arms had been overworked, I was sporting a small blood stain on my white shirt and the radiology department had called up asking why I was late for my appointment with them.

When I finally made it downstairs, I was ushered into the nuclear medicine area.  The tracer was administered and after waiting for it to journey through my digestive system, I was called in for the test.  Again, my gallbladder had performance anxiety so morphine was administered and it was finally visible on screen.  Because morphine was required, my gallbladder was immediately labeled abnormal because it is not performing as it should.  Just like the brain Igor found in Young Frankenstein, I’m now calling my gallbladder “Abbie Normal,” because you know how I love a nickname.

The test results, however, show that my bile ducts are completely clear, so I’m currently trying to get an opinion on whether I need to proceed with my surgical consult or can see a GI doctor or what my other next steps might be.

My appointment with Dr Cheese after the scan went well, although I was hoping he would be freeing me from mask life.  Apparently, we’re not quite ready for that as I still need to wear a mask whenever I’m around people. I did make progress on my vaccinations, though, receiving my third set of childhood jabs.  Fourth and final shots will be administered after my transplant anniversary in March 2024.  And at some point, my blood will be tested to be sure I have developed the anticipated immunity levels from the vaccinations.

So while I’m still not totally sure what’s going on in my gut, once I finished my time at Yale, my mind was able to think a bit more about trip options.  Here’s the latest and greatest.  Mom and I are flying to Los Angeles to visit her brother next week!  After a few days with him, we’ll set out to see the sites of California: Pacific Coast Highway, Yosemite and John Muir Woods, flying back from San Francisco.  It seems like the Redwoods might be a bit too far for this trip, but no doubt the sequoias will be impressive.

We’re also working to cobble together a trip for early November that includes the Adele concert, the Grand Canyon and Utah parks. We’ll finish in Durango, Colorado where Nephew 2 is making his high school stage debut as Gandalf. I’ve never been a Tolkien reader or viewer, but perhaps this will make me reconsider.

Before departure, I’ve got an appointment with a naturopath for her thoughts on my gallbladder / abdominal pain and I’m hoping to hear more from Sloan Kettering next week on the second opinion about whether I need to take a final maintenance chemo drug.

In the meantime, wish me luck packing. I love to travel, but loathe to fill a suitcase. Too many hard choices!

I say were scheduled rather than are scheduled because unfortunately, our trip has been paused.  And I’m sad to report that I’m the cause.

I’ve been experiencing abdominal pain on and off since the spring and the current consensus is that I might need to have my gallbladder out.  This was not the outcome I was expecting, but following a hospital visit in June, an unremarkable ultrasound in July and extreme pain after eating avocado toast and fish (on separate days) I’ve been referred for a test this week and a surgical consult in October.

Due to the unpredictable nature of the pain and without an exact diagnosis, Mom and I agreed the most prudent thing to do is to temporarily shelve our trip while we try to figure out treatment.  However, given that we’ve got a few weeks of waiting to see exactly what is going to happen, we’re hoping we can do a few mini trips.  Niagara Falls is back as a potential destination and I’m hoping we can visit Mom’s brother, who she hasn’t seen since 2019. 

Also, for Mom’s recent birthday, I bought her tickets to see Adele in Las Vegas on her penultimate performance night in November.  I’m optimistic that we can still do this trip before or after surgery, paired with a side visit to the Grand Canyon.

In a year where I’ve learned again that life is for living reinforced with a fabulous summer of travel, having my health derail plans again is frustrating.  However, this issue is fairly straightforward and I’m extremely unlikely to have the 8-inch scar my father did following his surgery.  I’m looking forward to getting a concrete diagnosis and treatment plan so that I can keep working on my return to full health. 

Alongside of this, I’m scheduled for a second opinion this week on whether I should take a final round of chemotherapy meds to help prevent recurrence of my leukemia.  My hematology and transplant doctors don’t agree on the right path and because of the unique nature of my mutations, I’m meeting again with a doctor from Memorial Sloan Kettering, who helped us decide that transplant was my best course of action.

Oh and I’m due for my third round of childhood vaccinations this week, which continues to bolster my growing immune system.  This will be the last round before the final injections in March 2024.

Any and all good wishes and vibes are welcome!  Will keep you posted on the plans, both medical and travel.

Well, actually, the idea first surfaced in the spring (a dear friend invited me on her August hols in the Dordogne, France) and I said I couldn’t go.  Not with my nascent immune system and lack of vaccinations.  But she and my mom encouraged me to think about it.  A few weeks later, Dr Cheese presented me with a timetable to start COVID and childhood shots all over again and it seemed like a rethink really was in order.

When I finally took the plunge and booked the trip, I decided the best way to do it included a quick stopover in London to combat the jet lag.  I didn’t want to arrive in France and be comatose.

Although August is peak European holiday season, I found a few British pals in London and caught up with them over meals in some of my favorite restaurants.  I didn’t pack out my diary, which meant I had time for recovery naps.  I also had a list of errands to run and was so relieved when my muscle memory of living there for 17 years, including where to stand on the tube platform to make the easiest transfer, took over without much contemplation.

Having been gone for over 3 years, London definitely looked different.  Plenty of empty storefronts, the same as in New York.  But overall being in the city again was so familiar and such a comfort.  When I moved in 2003, it took me a long time to understand and appreciate London and Great Britain. 

And while there were some real testing moments during my early months, my extensive time in the UK made me who I am today, in all the best possible ways.  Wherever I went, I felt at home and yet I also know I am at home back in America.  When I left London, I didn’t say goodbye,  just farewell until next time.

France was a glory of chateaux, walnuts, saucisson, fromage, canard, foie gras and boulangerie.  With unusually warm days, we made the most of the morning hours for activities and spent the afternoons lounging in and around the pool.  We watched the World Cup to cheer on the Lionesses, something I know I wouldn’t have done in the US, but had meaning to me when sharing the experience with British friends. 

The short flight reminded me of one of my favorite things about London: its proximity to Europe.  There’s nothing quite like a mini-break to a foreign country to help expand the mind.