The chemo/immunotherapy treatment that I completed three cycles of was ineffective (the usual effectiveness rate is 90%). Since receiving the news on Monday, we have been waiting to hear on the plan for a biopsy and next course of treatment. Meanwhile, my family has felt very strongly that it is time to get more aggressive. They have generously initiated and funded a trip for me to be evaluated at MD Anderson in Houston.
The people at MD Anderson do not fool around. In a matter of hours, we were in full communication getting my appointment scheduled, records sent to them and flights/hotel all arranged. Jonathan and I will fly out on Sunday and have my first appointment on Monday with Lymphoma specialist, Luis Fayad, MD.
Through prayer and what we believe to be nudges by the Holy Spirit, as a family, we agree this is the next best step. After a long, informative appointment this morning with my general oncologist/hematologist, we can anticipate a thorough review of my records, more diagnostics (which may get intense) and a treatment that may be a clearly defined path, or one of their new innovative treatments that are more aggressive. We can definitely head there knowing that we are going to be working with a team full of the best of the best.
We ask that above anything else, that you continue to pray. Please pray for our safety as we travel, wisdom for all of the medical personnel that will have input in my care, Jonathan’s and my faith, stamina and discernment as we are given choices. We ultimately want God to have the glory, and hope for a complete healing too!
Dr. Reddy called me late afternoon yesterday to let me know that the mass on my forehead/eye area has increased in size since my last MRI on December 17th. She will cancel my chemotherapy for this week, and schedule a surgical biopsy with the facial plastic surgeon who did my second surgery last October.
The increase in size is not surprising, because it is evident when you look at my face. What I find more surprising is the long, twisted road we’ve been on since last summer. It is hard to understand how so many physicians thought this was a benign process, and then when it was diagnosed, it was supposed to have a nice, neat path to remission. We still have faith in the Lymphoma specialist and her good prognosis for this – she encouraged me yesterday to “hang in there”. But, we know that ultimately, we have to trust and surrender to the Great Physician.
Please pray that my doctors navigate the next steps with great wisdom, that we will get on a clear, effective course of treatment and that Jonathan and I will have renewed strength and energy, and more importantly, that we stay focused on God and not on the circumstance. Thank you!
My PET scan was denied by my insurance. My doctor has ordered a MRI on Jan. 26th instead. Please continue to pray for the radiologist’s and Lymphoma specialist’s wisdom and for the best course of treatment. I should have results on Monday. Thank you!
Sometimes the kids grab a good shot. 🙂 December 2013
Here we go again. It doesn’t seem we can stay on the same trajectory for long.
I messaged my Lymphoma specialist last Friday to share my concern over continuing growth and hardness of the knots on my forehead/eye area. I can feel 5-6 of them. Most concerning to me was the knot near the crease of my right eyelid which not only looks swollen, but makes my vision blurry when I look up. I just needed reassurance that this is still an inflammatory response, and not new Lymphoma – it is very reminiscent of how all of this began in the first place.
Via the Vanderbilt messaging system, she reassured me that my recent scans looked good, but that she’d be happy to see me in clinic. Thankfully, I was able to grab a 9 am opening yesterday morning. After examining me, she agreed that the knots (one in particular) are more prominent than when she saw me last. Normally, an inflammatory response would be receding by now and not growing worse. She would like to perform another PET scan after a little more time passes (need to be a little further out from my last chemo infusion) and then if warranted, do a fine-needle biopsy.
She will look at the results to determine if my Marginal Zone Lymphoma has “transformed” into a more aggressive type, which it is known to do sometimes. If so, she will change the type of chemotherapy I am getting. If it hasn’t transformed, but the PET scan shows there is increased activity, then we will begin radiation therapy.
After she answered my many questions, she reassured me (once again) that this is not going to take my life. However, she did add, “It’s just going to be a pain in the butt.”
I can live with that. Literally. I guess this is supposed to be a windy road for me, but at each turn, at least I usually get some good news. I just pray that now this finally plays out as it should, and that we can see full remission soon.
The true benefit to trials like these is the wake-up call to truly make God a priority and to learn more about His character through prayer and reading Scripture. Last spring, I nervously led a women’s Bible study on a book called The Shelter of God’s Promises. It covered 10 of God’s promises to us found in the Bible; ones that we can take refuge in when (not if) times of trial occur in our lives. Now, I find that it is way more than ironic that I was chosen to facilitate that study. God’s perfect timing is amazing.
One of the chapters focused on the Promise of Love. Included in that chapter was this verse revealing that He knows every detail about our lives.
And, ever-so-thankfully, He assures us that even in knowing all of the good and bad about us, knowing all of our struggles, joys, etc., He continues to love us no matter what. How amazing that we can not do anything to make the Creator love us any more, and we can’t do anything to make Him love us any less. True unconditional love. Below is the Promise of Love verse that our group studied in depth.
These verses give me great comfort and help me to increase my belief and trust in Jesus. I know He knows every detail of our lives and loves us no matter what. If absolutely NOTHING can separate me from His love, then I have no reason to not fully trust Him in all the details of my life.
I’m so thankful for your continuous prayers. I was very blessed to have the leaders of our church meet with me last Sunday morning to pray for me too. I ask that you please continue to pray that these knots go away – maybe even before the next scan and change of treatment. That would be the best change of course! Please pray for my energy, patience, fortitude, peace that surpasses understanding and complete trust in God. Please pray for Jonathan too. He’s been my rock. While running a new business and all that that entails, he’s taken on more housework & more childcare while in super-hero fashion attending almost all of my many many appointments by my side.
The chemo/immunotherapy treatment that I completed three cycles of was ineffective (the usual effectiveness rate is 90%). Since receiving the news on Monday, we have been waiting to hear on the plan for a biopsy and next course of treatment. Meanwhile, my family has felt very strongly that it is time to get more aggressive. They have generously initiated and funded a trip for me to be evaluated at MD Anderson in Houston.
communication getting my appointment scheduled, records sent to them and flights/hotel all arranged. Jonathan and I will fly out on Sunday and have my first appointment on Monday with Lymphoma specialist, Luis Fayad, MD.
