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April
20
2021

April 19, 2021 - Monthly Update

Hi, everyone:

I had a one-month checkup today at the Mayo Clinic - blood tests, and meetings with the Pharmacist, Nurse Practitioner, Fellow Doctor (in training) and Dr. Alkhateeb.

The blood test results were all good and I told them that I am feeling great!  Dr. Alkhateeb said I should just stay on the same meds and keep doing what I’m doing.  I will start getting my childhood vaccinations again (they were wiped out with my transplant), and I can have my first annual dental appointment again since 2019.  This is progress! 

I will have another phlebotomy (“blood letting”) in a few weeks at Methodist Hospital to reduce my iron levels) and another bone marrow biopsy, chest CT scan, and pulmonary function test at Mayo in late May or early June.

I have had both Moderna vaccination shots two weeks ago, so I was able to celebrate my Dad’s 96th birthday yesterday and hug him and my family for the first time in over a year!  🤗 ❤️ I have also played and walked 9 holes of golf five times (about 3 miles each) and walked 18 holes last Saturday (about 6 miles).  My golf game sucks but I’m just happy to be back out there with my friends after missing all of last year!  It’s so nice to feel “normal” again! 😁 Hope springs eternal for the future (a quote from The Magnificent Caregiver)!

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March
16
2021

March 16, 2021 - All Good News!

Hi, everyone:

In my last post, I told you that Denny had been diagnosed with COVID.  For two weeks, he was banished to the guest bedroom and bathroom upstairs, and I brought meals up to him.  He only had a headache and temperature of 99.3 for two days, and then he felt fine!  Luckily, I never got the virus and he is now considered completely recovered!  We were both fortunate enough to get our first vaccination shots and are looking forward to getting the second shot.

I had appointments at Mayo yesterday, including blood tests, a Pulmonary Function test, and a consult with a Pulmonologist.  All my tests were normal, although my lungs are still not completely back to where they were last June.  I will keep taking 5mg of Prednisone and Singulair to help with healing.

Dr. Alkhateeb is very pleased with my progress.  Since my last biopsy was clear of any MRD (minimal residual disease), he doesn’t plan to start the Vidaza chemo again.  However, he said I should have a “phlebotomy” - NOT a lobotomy - to remove some of my blood.  I never thought about this, but when you are often given blood, as I was last year, it stays in your body and can increase your iron to unacceptable levels.  He said I could do this at home, to which I asked, “how would I do that at home?!”.  He then clarified that I can have it done LOCALLY near my home - duh! 😁 So I will be having a “blood-letting” at Methodist Hospital in the near future.  (Note: Denny offered to do it for me but I declined.)

Dr. Alkhateeb said I can come back in one month for another check-up, and I won’t need to have another bone marrow biopsy for 3 months!  He also gave me the OK to go to Palm Desert for a couple weeks, which we are considering.

It was a very long day, considering we left home at 8:00 am and got back at 6:30 pm.  The driving was really stressful, especially on the way home on icy roads, and we saw several cars in the ditch and one flipped over on Hwy 52.  However, all of the results and meetings were good, and we don’t have to go back for a month!    🎉🎉🎉

 

February
26
2021

February 26, 2021 - Great News, Bad News, and Good News!

Hi, Everyone:

I was at the Mayo Clinic on Monday for blood tests, routine COVID test, chest CT exam, and bone marrow biopsy.  The GREAT NEWS is that there was no “minimal residual disease” (MRD) found in the bone marrow!  😁🥂🍾 Also, my chest CT exam was better than the last one, but still not back to normal so I will continue to take 5 mg Prednisone daily.  I was supposed to have another pulmonary function test on Wednesday but had to postpone it, which brings me to the BAD NEWS.

Monday night, Denny got a splitting headache and still had it the next morning.  He took his temperature and it was 99.3, so we decided that he should get a COVID test.  The Mayo would not want either of us to go there on Wednesday if there was a chance he had COVID.  Well, the test result was positive! 😥 They told him to take Acetaminophen and by Wednesday, the headache and fever were gone.  He wants everyone to know that his carcass feels fine and Door #2 is working regularly!  (His words, not mine!)  

We are now in extreme quarantine mode and I am now TMC (The Magnificent Caregiver).  I guess I kind of owe him for the past 12 months when he was TMC.  😉 The GOOD NEWS is that he isn’t suffering from any symptoms now and we hope that continues.  His doctor said the more severe symptoms usually show up between Day 7 and 11 and today is Day 5, so we’re praying that doesn’t happen.  He can get retested next Friday if things don’t get worse by then.  Ironically, Denny was scheduled to get the COVID vaccination last week, but it was cancelled due to the snowstorms delaying delivery of the vaccine.  Now he has to wait for a couple more weeks, assuming his symptoms don’t get worse.

Since I have been exposed to COVID, the Mayo Clinic will reschedule my pulmonary function test and meeting with the Pulmonologist after the quarantine period is over.  I’m also praying that I don’t get COVID in the meantime - so far, so good! 🙏

February
11
2021

February 11, 2021 - I’m Still Boring!

Hi, Everyone:

Today is Day 204 post-transplant! 🎉🎉🎉

I had a checkup yesterday at Mayo and I’m still boring! 😁 😁👍 My blood tests were all normal, and I am not having any symptoms of graft vs. host disease or lingering side effects from the pneumonia.  This is in spite of the fact that they have been gradually reducing my Tacrolimus (anti-rejection medication) and Prednisone (anti-inflammatory medication for my lungs), which could have caused these side effects.  The doctor said I can discontinue the Tacrolimus altogether (yay!) and reduce the Prednisone to 5 mg tomorrow, down from 60 mg in late December.  Now that I will no longer be taking Tacrolimus, I will be able to get all of my immunizations again that were wiped out when the chemo killed off my immune system.

In two weeks, I will have a CT chest scan, pulmonary function test, bone marrow biopsy, and will see a Pulmonologist.  Hopefully, there will be no signs of the pneumonia or leukemia!  I want my medical team to still think I’m boring. 😉

I continue to feel great and wish I could be out and about more. Hopefully, we will be able to get the COVID vaccine soon so we don’t have to quarantine anymore! 😷

January
28
2021

January 27, 2021 - Milestones and Check-Up

Hi, everyone:

This Monday, Jan. 25th marked the one year anniversary of my AML diagnosis and the two year anniversary of Denny’s cancer diagnosis.  A year ago today, I was first admitted to the hospital for my initial chemo treatments.  Luckily, we are both in remission so we’re happy to surpass these milestones!

I had another checkup at Mayo today and I’m happy to report that I am still uninteresting (yes, I’m officially boring)!  Blood tests are all good, lungs sound clear, no shortness of breath even after exertion, no skin or mouth issues, sleeping, eating, and drinking well.  They are further reducing my anti-rejection drug and steroids, and I won’t have to refill the anti-fungal drug when it’s gone.  The doctor even said I can have one glass of wine per week (I didn’t tell him how big my wine goblet is!) 🍷😁

I’ve been feeling great!  I hadn’t used any supplemental oxygen for over a month so it was returned last week.  I even hit some golf balls on the golf simulator at Brackett’s last week - I hadn’t swung a club for over a year!  It wasn’t pretty but it was a nice distraction.

The doctor wants to see me again in two weeks to make sure I’m not having any adverse effects from the reduction in medications, and then they will schedule another bone marrow biopsy to see if there is any minimal residual disease (hopefully not).  

That’s all for now - the next update will probably be after my Feb. 10th checkup. Let’s hope I’m still boring!  😉

January
15
2021

January 15, 2021 - Check-Up

Hi, All:

I had a check-up at Mayo on 1/13.  They reviewed my blood tests and medications.  The test results were all good, and they are slowly reducing my use of Prednisone (treatment for my lungs) and Tacrolimus (anti-rejection drug).  They are closely monitoring me for any side effects from reducing these drugs - so far I don’t have any.  As the nurse practitioner said, I’m not very “interesting “, which is a good thing!  

I asked if they plan to do another pulmonary function test and CT chest scan next month as suggested by the pulmonary specialist on 12/30.  The doctor said they would only recommend them if I am having issues with shortness of breath, low oxygen saturation (<90), or other symptoms, none of which I am having currently. However, this could change as I continue reducing the Prednisone.

Once I am off the Prednisone and Tacrolimus, I will be able to get vaccinations - all of my previous vaccinations were wiped out with my bone marrow, so they have to be given to me again.  The best news is that the doctor said I can get the COVID vaccine ASAP!  😁 

At this point, they don’t plan to start the Vidaza shots again, since I am still recovering from the pneumonia and my last biopsy did not show any minimal residual disease (AML).  They will probably do another bone marrow biopsy in late February and then decide if additional Vidaza treatments are needed.

My next checkup is Jan. 27th, which will include blood tests, a review of medications, and a doctor’s meeting.  Hopefully, I will continue to be an uninteresting patient! 🙏😊

December
31
2020

December 31, 2020 - More Good News!!!

I want to share with you the all-important bone marrow biopsy results from the University of Washington.  There is no evidence of leukemia on either of their tests!  Continuing the Vidaza treatments as a maintenance program should hopefully keep the leukemia from coming back.  Dr. Alkhateeb has had success with this approach with other patients.

It has taken all of 2020 to achieve this, but we are ending the year on a high note! 😁🎉🥂🍾 

December
31
2020

December 30, 2020 - Follow-Up Appointments

Hi, everyone:

I had several appointments today at the Mayo Clinic after having blood tests, a COVID test, chest CT scan, and bone marrow biopsy on Monday.  Today I had a pulmonary function test and then met with Dr. Sekiguchi, a Pulmonary Specialist. The good news is that all of my blood test results were normal, my COVID test was negative, my chest CT scan was much improved from early December when I was hospitalized, and the pulmonary function test results were within normal range.  However, they were not as good as they were in June, so my lung function has not fully recovered from the pneumonia yet.  I am still on steroids, which will continue to help the healing process, but they are gradually reducing my dosage as I improve.  Dr. Sekiguchi was very pleased with my recovery after only 3 weeks since I left the hospital.  I haven’t needed to use oxygen for the past two weeks, even after exertion, which he was happy to hear.  However, he recommended that I keep the oxygen as they reduce the steroids, in case I start experiencing shortness of breath.

We then met with Dr. Kendarian, a Bone Marrow Transplant doctor (Dr. Alkhateeb is on vacation).  He was also very pleased with my progress and agrees with the plans to gradually reduce the steroids.  Unfortunately, the bone marrow biopsy results were not available yet - a sample has to be tested by the University of Washington who has specialized test equipment that can detect very small amounts of blasts.  However, Dr. Kendarian said he expects that I will start Vidaza treatments again in late January or early February as a maintenance program.

I will have another follow-up appointment in two weeks to check my lungs and blood tests, and they plan to do another chest CT scan and pulmonary function test in two months.

I have been feeling really good, eating really well, and getting much stronger, thanks to my trainer and work-out buddy, TMC (The Magnificent Caregiver). 😉 We are looking forward to celebrating the end of 2020 and welcoming the hope of better things in 2021!  Happy New Year to all of you, and thank you for all of your support!🥂🍾🎉🎉🎉