Saturday, December 31, 2016

25th and 26th Trips to the NIH

Dan and I made both of these trips together, and it’s a good thing we did.  At both appointments, all the lab results were tip-top, and all was calm, all was bright.  But on the way home, there were complications with our flights.  For the first time ever, we were routed through Phoenix AZ on our way to Boise.  Maybe we’d be able to see our son Kimball, who lives near Phoenix, during the lay-over!  No, with less than an hour from landing to takeoff, there won’t be enough time.  But lucky us!  Our flight from BWI to AZ was delayed, giving us an all-night lay-over in Phoenix after all, which gave us plenty of time for a visit with Kimball, Jaxon, and Kaden!  Kimball took us to his neat and cozy home for the night, and as always, he was a kind and considerate host.  We also met his neighbor, who’s first and unusual middle name are the same as Dan’s.

 After the Dec. appointment, we flew from Reagan or DCA, to Chicago’s Midway airport, and then on to Denver as planned.  But in Denver, after much uncertainty, and long delays, it was finally announced at 1:30AM that our originally scheduled 9:55PM  flight to Boise was cancelled.  Dan stood in line from then until 5:50AM to get new tickets for a 12:40PM flight home.  It, too, was delayed for an hour, but by 4PM we were at last in Boise.  I don’t know what’s changed with the airlines, but we never had any overnight lay-overs during my first three years of traveling between Boise and Bethesda.  .  But in the past year and a half, we’ve had 4 overnighters.  Still, we know that we are blessed to be able to participate in this clinical trial.          


Monday, July 4, 2016

23rd and 24th Trips to the NIH


I can’t tell if anyone is reading these posts, but I want to write them down because they are very meaningful to me, and it could be that someday a grandchild or a great grandchild might find them of interest as well.  So: My friend Karen D accompanied me in March to my 23rd NIH appointment. The PA, Janet V., went over my lab results with me, and all look good. But when I met with Dr. F a little later, some of his remarks filled me with concern, or more accurately, anxiety. He told me that even though I was doing very well on the Ibrutinib, my lymph nodes would have to continue to reduce in size or I would be taken off the clinical trial.  He then suggested some other drug and clinical trials I could look into if I had to stop taking Ibrutinib.  None of these were being offered at the NIH, and I knew I would be unable to travel to other facilities to participate in a trial.  The NIH trials are the most economical trials ever.  Nothing else even comes close.  This was all the more shocking to me because I had been told two years before that I would remain on the trial unless the lymph nodes increased by 50%.  Dr. F. specifically said during this visit that even if they remained stable, I would no longer be in the trial, because they had to be continually reducing in size.  I didn’t understand this change in policy then, and I still don’t understand it today.  But I decided to make a concerted effort to calm myself down, and to trust God’s plan for me.  So perhaps that was the point all along. It brought me to the realization that I can greatly control, or at least moderate, my emotions in difficult times, and I have been using this new-found ability to good effect ever since!  


My local oncologist added to my acceptance of this wrinkle in the clinical trial’s requirements when she offered   to prescribe Ibrrutinib for me should it become necessary.  However, the great nnews I received at my 24th trip to the NIH on June 15th is that my lymph nodes are continuing to reduce in size, and I am still in the trial!  Dr. F., whom I truly respect and admire, is leaving the NIH for another position, so I consulted with Dr. Adrian W. and Dr. Ahn at this appointment. Interestingly, it seemed to me that Dr. W was surprised upon hearing that my continued trial participation had been in question, asking me why I’d thought this was the case.  I’d heard him clicking around on the computer, probably searching for notes on my previous appointment.  When I explained what I’d been told in March, he only listened, making no comment.  I would have liked to know what he was thinking.  It may have cleared up the confusion surrounding the trial eligibility.  But one more happy circumstance on this recent visit is that I was able to forgo a bone marrow biopsy.  Last year’s good results indicated a follow-up BMB was unnecessary at this time! It’s hard to believe, but my fifth year on Ibrutinib has begun.  I hope it goes on and on.  But if and when it must come to an end, my gratitude for this experience will certainly remain.  I’m also very thankful to my sister, Julie, for accompanying me to the NIH in June!  

Saturday, February 20, 2016

20th-22nd Trips to the NIH

My NIH appointments are ordinarily scheduled at 3-month intervals. But for my 20th trip to the NIH, I returned after only one month for a follow-up CT scan of the newly-placed endovascular stent graft. So in July, my sister Julie drove up from Utah to fly back to D.C. with me. During my hospital stay in June, a social worker had given me the phone number for a woman who rents a couple of rooms in her home to NIH patients. We gave this new arrangement a try, but quickly found that staying at the Marriott was well worth the extra expense. There was no air-conditioning in the home, and we were told to turn off the ceiling fan in our room. Knocking on our bedroom door after we’d already gone to bed to introduce us to a gentleman who was a fellow guest, also added to our decision to stick with Marriott. 

It appears that all my future CT scans will include a look at the stent graft. This requires the contrast flow rate to be greatly increased. No one warned me about that, and when the contrast shot through my veins with such force, I was hit with a huge wave of nausea. Somehow I managed to keep from throwing up, but my mouth filled up instantaneously with a lot of saliva that I was unable to swallow for fear of the nausea. I sort of gargled out a call for help. The technician supplied me with a bowl and some paper towels. Pretty soon, we were ready to resume the scan. Once the scan was done, the rest of the appointment was a breeze. At home though, the rest of the summer was chock full of medical appointments and procedures. Because the aneurysm was thought to have been caused by bacteria, 30 days of IV antibiotics were necessary. Our son Shane was trained to administer them at home daily for me, with weekly visits to the clinic to de-access the port in my arm and then to re-access it. Consequently, I had to stop taking my wonder drug, Ibrutinib/Imbruvica, for almost the entire summer. I developed a nasolacrimal obstruction, a blocked tear duct, which began causing pain, swelling, and infections. It took two surgeries to successfully deal with this,, and then, the infectious diseases doctors in Boise and Bethesda insisted that the port in my arm should be removed. It had served me well for 8 years, so I was loath to part with it. But I have come to understand that it was the prudent thing to do, and if it was the source of the serious infections that assailed me in 2015, and can prevent future crises, I’m glad I followed their recommendations.

Dan and I did the 21st and 22nd NIH trips together in September and December. Both went very well; all labs looking good! We stayed in another Marriott hotel, this one with more wallet-friendly rates than the other Marriott. I’ve booked all four of my stays there for this year. The first of these is coming up in March. 

This brings my comings and goings up to date, but much has been happening with our beloved sons and their families, all of which requires nearly constant prayer. This includes prayer due to changes in marital, employment, and educational status, adoption, a mini family reunion during Thanksgiving, our first ever family baptism session in the temple, the birth of a baby boy, prayers for peace, protection, and understanding, prayers for health and increased faith, for comfort and guidance, as well as many many prayers of gratitude. "Therefore, dearly beloved brethren, let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed." (D&C 123 "17)

Tuesday, February 16, 2016

18th and 19th Trips to the NIH

I’m still here! Still alive, still happy, and still aware of many blessings. This isn’t to say that I am free of all heartache and trials, but in Paul’s words, “I am persuaded, that neither death, or life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.” (Romans 8:37-39)

Here’s a quick recap of 2015. Last March,, still weak from my lengthy illness, I was especially grateful that Dan could accompany me on my 18th trip to the NIH. Yes! I found that I was still eligible to remain in the Ibrutinib clinical trial! For the 19th visit in June, I scheduled a little longer stay in Bethesda, because Colin and Macey would be my travel companions, and I wanted them to have a little time for some sight-seeing. Since this appointment would mark my third year in the trial, a CT scan and a bone marrow biopsy were performed in addition to the usual blood draw. With those out of the way, next came an everything’s--looking-good consult with the PA. But as Colin and I left the exam room to wait in the lobby to be called back to see Dr. Farooqui, things took a sudden, unexpected turn. We came upon him in the hallway exchanging introductions with a couple of doctors, and he stopped a moment and said, “Mrs, Washburn, pleas wait in the exam room.” This was out of the norm, and I was immediately on alert. Colin and I went back into the room we had just exited, and sat down. Mystifyingly, Dr. Farooqui entered the room with the two doctors, where more introductions were made. Then Dr. F. told us that the CT scan had revealed a serious problem. I cannot remember exactly what he said, but I know that I was the first to speak these words, in the form of a question, “an abdominal aortic aneurysm?”. And his reply was, “yes.) Even now, recalling this experience months later, I still feel a shadow of the panic that grripped me at that moment. But it passed quickly. I knew I was in excellent hands, and I felt all would be well. And it was, too. Soon, I was whisked over to nearby Suburban Hospital, where noted cardiac surgeon, Dr. Michael Peter Siegenthaler, placed a stent, or a graft, in the bulging artery, thereby saving my life. Thank you, Dr. Siegenthaler, and to the astute CT scan reader who spotted the problem, and to everyone involved in yet another miracle for me. Yes, I remember Him, and have thanked him many times, too. It is believed by the experts, that the aneurysm was caused by a bacterial invasion, and I am thus on antibiotics for life.

Sadly for me, Colin and Macey returned home on Friday, and I was left behind in Bethesda, until Shane arrived on Monday to escort me home on Tuesday. At first I was very afraid. But once I was liberated from the ICU, untethered from the IV, so that I could move about on my own, without having to summon a nurse for help every time I needed to use the bathroom, I became quite content and comfortable again. I had brought 4 digital books with me, and finally settled in my new more private room, I spent the weekend reading voraciously.

Feeling surprisingly well, Shane and I began the homeward journey, only to encounter a delay which caused us to have to spend the night on the floor of the St. Paul/Minneapolis airport. Les miserables!! It was important for me to receive an IV infusion of antibiotics every 24 hours, so instead of going to bed when we stumbled off the plane in Boise on Wednesday morning, we hurried over to the hospital to take care of that. We managed to nap in the afternoon a bit though, which was very fortunate, because the next crisis was upon us.

I went to bed early that night, but was awakened around 10PM by Dan, who was shivering and shaking in bed beside me. I knew he hadn’t been feeling well, but suddenly he was very ill and rather uncommunicative. It became clear to me that he needed immediate medical attention. I let him know that Shane and I would get him to the emergency room if he could get to the car, but if not, I would be calling for an ambulance. At times, when one is ill, someone has to step in and make those crucial decisions. Dan had done that for me back in January, and now I was returning the favor for him. He somehow rallied enough to get to the car, and we drove to the ER. After several hours, he was admitted to the hospital, and Shane and I came home to rest. Our Shane was a blessing to us during this time. He moved home just when we needed him most. His promised job didn’t start until things had calmed down considerably, and others could occasionally lend a helping hand. Soon it was determined that Dan had a UTI, and there ffollowed much testing for its source. On Thursday or Friday evening, we were given devastating news, which to our great relief, turned out to be incorrect. Another miracle? The doctor had come into Dan's room and told us that there were malignant metastatic lesions on his bones. Further tests did not support that diagnosis. Yes, to my mind, this is another miracle!

Friday, April 17, 2015

My Miracles

Toward the end of the happy month of Dec., I started feeling unwell and running a fever of 101-103. It's probably the flu, I thought. By Jan. 9, I was no better, so I decided to see a doctor. He wasn’t too concerned, but was kind and advised me to come back if symptoms worsened. A spot on the left side of my upper back began to cause pain, so I went back in on the 11th. Nope, everything still looks fine, he said. On Monday the 12th, I called a chiropractor who had helped me in the past. She wanted me to make sure there were no heart issues causing the pain before she saw me, so Dan took me to the emergency room on the 13th to check that out. They gave me the all clear, and a prescription of Hydrocodone for the back pain, which was really bothering me by then. I phoned the chiropractor to let her know the EKG was fine, and she said she could see me on Wednesday, the 14th. Dan took me there the next morning, and within mere minutes, she found that the T4 vertebra was out of place, and easily put it back in place, bringing immediate relief.

Due to the pain I'd been experiencing, I hadn't been sleeping very well, so I took a nap on the loveseat when we got home. Ordinarily, Dan would have returned to work, but he said that he felt that he should wait for me to wake up before leaving. I believe he was prompted to wait. However, when I did wake up about two hours later, I was incoherent and unable to walk. I have no memory of that or of anything else for the next 9 days. Dan called for an ambulance, and I was transported back to the emergency room in Meridian in critical condition. He tells me that I was intubated early on, and that the next hours were spent in running all kinds of tests, blood tests, CT scans, MRI’s. In the wee hours of the morning of the 15th, it was determined that I had a bone abscess near the spine and needed immediate surgery. I was moved to ST. Luke’s Regional Medical Center in Boise, where a neurosurgeon, Dr. Manning, performed a multi layered laminectomy on the T4 through T7 vertebrae, and cleaned out the abscess. I'm requesting his notes from the surgery because I'm interested in trying to understand why this infection is called a bone abscess, while being called pneumococcal epidural meningitis by the infectious diseases doctors. The medical field is so fascinating to me.

From what I'm told and what I've read, my life was pretty much on the line for the next several weeks. As I said, I was unaware of my circumstances and surroundings for the first 9 days, but loving friends and family rallied around sending up prayers, and showing forth much kindness and love. Each morning, I'm told, the nursing staff would turn down the sedation, and tell me where I was. Then they'd ask me to open my eyes, to squeeze their hand, and wiggle my toes. Day after day, there was no response from me. But on the ninth day, Friday, Jan. 23rd, I woke up, and responded! Pretty soon the ventilator was removed, and I could speak, well, whisper a little bit, although it took a lot of effort. Our joy was short-lived though, because after a couple of hours, my airways became swollen and I couldn't breathe. Dan went for help. The room was suddenly filled with emergency personnel. He and my sister Julie were told to leave, and I was re-intubated. They called this nerve-racking episode acute respiratory failure. But it, too, was short-lived, because by Monday, the 26th, I was extubated and able to breathe on my own. Another complication arose when, possibly from one of the antibiotics I was given, or from the large amount of fluids required to try to compensate for very low blood pressure and the septic shock,, my kidneys stopped working. I was very swollen, with forty pounds of extra fluid on board. I was surprised to learn that I'd already had two or three dialysis treatments while I was unconscious. The nephrologist said that the dialysis might help the kidneys begin to function properly again, but it could take months. By the time I was thinking clearly enough to realize that I needed to pray for this to be resolved, I'd had a total of six dialysis treatments, and had turned the corner. I actually needed supplemental IV fluid for a little while because the kidneys suddenly went into overdrive, with dehydration looming on the horizon.

The rapidity of the resolution to the kidney concerns felt (and feels) like another miracle to me. During this time, I was more aware of my Heavenly Father's protection and care for me than ever before. When I was still intubated and unable to speak, I remember that I received an impression that Father in heaven was giving me the choice of whether to continue my life on earth, or to come through the veil to be with loved ones who had gone on before. After weighing both choices, my strong feeling was that I would be happy either way. I trusted His wisdom more than my own, so I wanted Him to make the decision. I knew that many dear ones were praying for my recovery, including children. I wonder if it may have tipped the balance in favor of remaining in mortality, when I added in my reply to Him, that my desire was that all those who were praying for me would be strengthened in both their faith in Him, and in their faith in prayer. My own faith, love, gratitude, and trust in Him is far greater than ever before. I am so very happy, too, because my confidence in His plans, purposes, and power waxes strong.

During the illness, I had to discontinue the clinical trial medication, Ibrutinib/Imbruvica. Before long, my lymph nodes began to increase in size and to cause some pain. One Sunday night, I determined that I would call Dr. Farooqui the next morning to ask if I still qualified to be in the clinical trial or not. Early on, he and the doctors who were treating me had been in contact with each other. When Dan arrived on Monday morning, as he faithfuly did every day of my hospitalization, the phone rang. It was Dr. Farooqui calling to check on how I was doing! I hadn't even had the frustration of searching for his number, leaving a message, and waiting for a call. If not a miracle, this was certainly another tender mercy from heaven. My vote is for a miracle though. This wonderful doctor kept my hope alive that I'd be back in the clinical trial when I had recovered sufficiently from all that had been going on.

And my husband? His unfailing love and support for me through this uncertain time was perfection itself. I love him, I appreciate him, I want to be with him, forever and ever and ever. Our sons, Ethan, Kimball, Greg, and Shane, made great sacrifices of time and money to be with us. I felt Jordan's presence with me on more than one occasion as well. Neil wasn't able to come, but he had just been here at Thanksgiving. His sweet Penny made the softest, creamiest white afghan imaginable for me to snuggle up in. Colin and Macey live nearby, so we were blessed with many visits from them, and once they even brought in an indoor picnic from my favorite sandwich shop, Which Wich. My sisters, Julie from Utah, Becky and her husband Ray from California, and Jamie from Florida, were able to come, too. And Jenny sent her love from Iowa. We were deluged with visits, calls, texts, and cards from so many friends, from near and far. Jason, Brianna, and Jayden, Rick and JoLyn, Michael and Lisa, and Ethan with his family all came from afar. Kind local visitors were so plentiful that we even had to ask for a little rest so I could try to get some sleep. Karen, Cindy, Vickie, Marie, Judy, Joan, Ava, Amie, Roxane, Andrea S and Lisa W, Hank and Gayle, Phil and Diane, young Elders Jacobs and Stapley, and others came. Our very caring bishop, Carl Withers, visited a dozen or more times! And sometimes he brought his gentle wife, Jane. Our church family brought delicious meals to our house for our beloved out-of-town visitors as well. We are grateful for every single blessing from a caring, knowledgeable medical team, friends, family, and heaven.

I was away from home from Jan. 14th to Feb. 27th. I guess I experienced some ICU psychosis, with disorientation and night fears, during the last week of January.. Kimball spent a night at the hospital with me, and Greg spent three nights, which was a great help to me. When my mental fog cleared, getting home was still my number one concern. My much longed- for homecoming was one of the happiest days of my life.

Much love to all -


Seventeenth Trip to the NIH

It just so happened that December’s NIH appointment was sandwiched between two wonderful holidays and one very special event! Neil and Penny, with twins McKay and McKenna, flew over rivers, mountains and woods for a Thanksgiving visit with Grandma and Grandpa. And wow did we ever have fun at the aquarium, the nature center, and Cabella’s, to name a few highlights!

Next comes a big thank you to my friend, Karen D., who accompanied me to the NIH on Dec. 11th for my appointment on the 12th. It was good to be able to take the Metro from the airport to the NIH for the first time, which saved us a two hour wait for the shuttle. Getting from Boise to Bethesda and back makes for two very long and tiring days. My labs all looked good. Everything went like clockwork. The NIH was all decked out for Christmas, and we caught a glimpse of Santa on his way in to visit the children.

Dan and I had the privilege of attending our son Kimball’s graduation from Arizona State University the next week.. We loved visiting with our three grandchildren, Jaxon, Kaden, and Sophia. Kimball took us to two memorable eateries, and to a great rock shop where Dan was able to add to his collection of geological treasures.
Home again, we were lucky enough to have Rick and JoLyn stay a night with us on their way to Utah. She helped me rearrange my closet, bagging up clothes to give away that had mysteriously become too big for me. Then true to form, she served up a big helping of Christmas magic by decorating our cozy, little home in preparation for a visit from … St. Nick? No, even better. From Shane! Celebrating the holidays with him, and Colin and Macey, too, was the icing on the cake of 2014!

Thursday, October 9, 2014

Sixteenth Trip to the NIH

A whole month has gone by too fast.  It was a month from today that Dan and I flew back for my NIH appointment.  Seems I’ve about lost the inclination to post updates, but I don’t want to just disappear without a trace, so here’s a recap.  Check out my schedule and you’ll see that they kept me pretty busy this time.

Wednesday, September 10, 2014 – 27month follow/up

09:00AM- nothing to eat or drink after 9AM in preparation for your CT scan.  You may take medications with sips of water

9:45AM – 3rd floor, Day Hospital, 3SE-S, for blood draw from port.

11:00AM - 3rd floor, Procedure Unit, 3SW-N, for non-sedation bone marrow biopsy.  Dr. Farooqui will do the biopsy, please arrive 15minutes early, if possible

1:00PM – 1st floor, Radiology for CT scan.  Your scan is actually scheduled at 2PM, but you must be there 1hour prior in order to drink the oral contrast.

To follow- 7th floor, Outpatient CLL Clinic, OP 7 to see hematology fellow, followed by Dr. Farooqui and the CLL team.

To follow – 1st floor, Pharmacy to pick up study medication

Thursday, September 11, 2014 nothing to eat or drink after midnight Wednesday night in preparation for your lymph node biopsy.

08:00AM (on Call) – 1st floor, Interventional Radiology for lymph node biopsy.

to follow- 3rd floor, Day Hospital, 3SE-S, for recovery after biopsy.  The CLL team will come see you in the Day Hospital 

I just wrote a few of the CBC numbers as Dan read them, so definitely not all-inclusive.  CT scan was ok, will ask for a little more clarification on the ln biopsy in Dec., but best of all was the bone arrow news.

 WBC: 6.95 - normal range 3.98 to 10.04

Alc: 1.74 - normal range 1.18 to 3.74

Plt: 190 - normal range 173 to 369

Rbc: 4.74 – normal range 3.93 to 5.22

Hgb: 12.7 – normal range 11.2 to 15.7

Immature granulocytes: .6 – normal range .1 to .4

Absolute immature grans: .04 – normal range .01 to .03

The most exciting news to me was from the bone marrow biopsy.  The CD79a marker which specifically measures the amount of CLL in the bone marrow showed substantial improvement.  It was at 90% just prior to starting the trial; went down to 80% after two months; 35% at six months; 40% after 1 year; and is now down to 20%.  That beats the chemo I had back in 2007.  After it was finished, CD79a was still at 30%.  So 20% looks pretty good to me. 

Not sure I’ll keep updating.  Not sure I won’t, either. 

Love to all.