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.          

    

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 23^rd 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 24^th trip to the NIH on June 15^th 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!  

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)

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!