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 week prior to Christmas was extremely trying. I had three doctors’ appointments and four imaging appointments. Very thankfully, as I wrote in the last post, we had wonderful news from the Lymphoma specialist regarding the improvement she saw on my MRI and PET scans! I also had my first mammogram that week, and expected very little drama from that experience. But, as the year has played out, it seemed a little excitement was in order. As I finished the last blog post, my phone rang, and sure enough it was a clinician saying that I needed to have an additional, more advanced, mammography to check a suspicious area. I literally laughed out loud as I hung up the phone – really? I’m so thankful that my gynecologist got the follow-up scheduled for the next day (versus the Jan. 9th date given to me by the imaging service), and that the additional mammogram was immediately cleared by the on-site radiologist as normal. What a relief!
The week of craziness led us into the Christmas holiday with great thankfulness and a sense of optimism we hadn’t had in months. Jonathan’s parents spent Christmas with us, and the seven of us enjoyed going to our church’s Christmas Eve candlelight service, eating some of our traditional Christmas foods and experiencing the kids’ excitement on Christmas morning.
As we ring in the New Year, I’ll be heading into my 3rd of 6 scheduled cycles of chemo/immunotherapy. They will begin on Thursday and Friday of this week. Please pray that these therapies destroy the remaining cancer cells, that Jonathan and I continue to feel a new sense of strength and peace in God’s plan for us and that my physicians continue to have wisdom and discernment as we move forward.
Thank you for your love and support! Happy New Year!!!
Today is a good day! I saw Dr. Reddy, Lymphoma specialist at Vanderbilt, this morning. She looked at both my MRI and PET scan results. She said that my current treatment is effective, and that the lymph node is 100% clear and the cancer on my forehead and frontal sinus are 50% smaller. The knots and swelling that I’m seeing on my forehead are just inflammatory responses to the treatment. She wants to do four more cycles of chemotherapy (6 total), and if my eye area isn’t completely resolved, then we may need to end my treatment with some radiation therapy.
I think she could tell that I am very weary from all of the doctors’ appointments and uncertainty as to my prognosis. This is the best part! She assured me that this is going to be taken care of. That her staging me at 4 had absolutely nothing to do with my outlook (unlike how other cancers can sometimes be interpreted). And just to make sure that she was getting straight through to me, she said, “You will raise your children, see them through college and enjoy your grandchildren.” That’s when Jonathan added a little comic relief on her future-telling and said, “But, we will still wear our seatbelts.” That got her to laugh (a little).
I so desperately needed good news today, and she over-delivered. Just when I felt perhaps I had a rare cancer and that my treatment may not be working, she reassured me that it IS working and she is confident in my future. She outright said, “This will not kill you.” Strangely, such sweet words to me. 🙂
Thank you, thank you for your prayers and overwhelming support! Feel free to quote all of this back to me when doubt sets in. I have every reason to feel confident in my doctor and the treatment she has me on. It’s time for me to be positive and to battle through this with strength.
Thank you Jesus! I have no doubt that You have been walking through this with me. Every morning I read “the verse of the day” on my Bible app. I’ve posted two of my favorites from the last couple of months.
I went into my oncologist’s office yesterday with concern regarding my ever-changing forehead/eye area. Just 1 1/2 weeks since my last chemo cycle, and I’m seeing daily changes of swelling (coming and going) and small knots forming on my forehead. This could possibly be some unusual way that my body is responding to the treatment, or maybe it’s an indication that the treatment isn’t working. The best way to determine what’s going on is through scans and my Lymphoma specialist’s interpretation of them.
I had an MRI last night, and I’m currently awaiting the PET scan as I write this. I will then see the Lymphoma expert either Wednesday or Thursday.
Please pray that these scans and upcoming doctor’s appointment help me to get the best treatment specifically for me, and that we see complete healing soon. Your prayers mean everything! Just prior to my MRI last night, I had such a great sense of peace wash over me. I truly believe that our prayers are being heard, and I experienced a little acknowledgment of that last night. God is good.
On Thursday, December 19th, I’ll be having a PET scan to check the effectiveness of my first two cycles of chemotherapy. As I noted in the previous post, the lymph node that had been palpable is no longer swollen. However, prior to the Dec. 5th infusion, my oncologist and I did discuss some new swelling on my forehead. He believes it may be new Lymphoma growth that occurred between cycle 1 and 2 of chemo. The scan on the 19th will be important for gauging the progress that’s been made – including the unseen tumor in my frontal sinus – and how to proceed from that point.
Please pray for very clear, good results.
All of this has been a tremendous battle emotionally. The best moments, I forget about it. The worst moments are when I walk down the road of “what ifs”. In September, prior to my diagnosis (but when concern was in full-force) a friend recommended two journaling exercises for me. First, I listed all of my big struggles that I could recall and how God provided and got me through them. It is so easy to forget all of those times. . . One thing I clearly realized is that even the times I was lacking in faithfulness to God, He was forever faithful. My lack of faith did nothing to diminish His faithfulness – thank God! The next exercise was for me to write my current fears and, “I will trust you, Jesus.”
Soon after doing this journaling, Jonathan and I were driving in the beautiful Teton mountains and we heard the song below on the radio. We both felt like God was reminding us of all the times He has been there for us, and that we can trust Him in this as well.
I’m so thankful to have had a relaxing and restful Thanksgiving with my family at my parents’ home. It was such a nice distraction from the last several months’ trials. Good food, some amazing football, game playing, laughter, etc. . .
This Thursday and Friday I will be having my second chemotherapy treatment. Please pray that these next infusions directly target the cancer cells and completely destroy them. In addition, please pray that I can release the worry and that I will be strong and positive.
I’m happy to report that since the first treatment, my lymph node in front of my right ear has completely gone back to its original size – I can’t even feel it! I will have a PET scan at the end of this month to check the overall progress of my first two treatments. I will post that date when I have it. Thank you again for your loving support and prayers!
Note: If you’d like a little more information on how all of this unfolded in the first place, click on “Background” on the upper left.
I began my chemotherapy on November 7th. It was a challenging day – I think it finally hit me that we had a clear diagnosis, and walking into a room of patients receiving chemotherapy (and knowing I was joining them) was very emotional. I am very grateful that I had a wonderful, supportive nurse and Jonathan by my side all day long.
As far as side effects, the infusion went smoothly both days and I didn’t have the fairly common reactions that many have to the Rituxan. I’ve only had one experience with nausea and I treated that easily with Zofran. My biggest side effect has been moderate fatigue, but it is doable. I’m so grateful that the two drugs I’m being given (Rituxan and Bendamustine) are anticipated to be highly effective, but mild on side effects (probably no hair loss either).
As a family, we have felt extremely supported and loved since the beginning of all the doctors’ appointments and testing. We are so appreciative of the prayers being lifted up, the supportive words, encouraging cards, meals, etc. Experiencing the love of our family, friends, friends of family, family of friends . . . has been a big blessing and we thank God for that. We feel God is showing us His love in tangible ways through His people.
I’ll try to post an update now and then. My next treatment is on December 5th and 6th. Until then, I will have weekly blood draws to check my blood count for clotting, immunity, etc. These results will determine how much I can go out in public – you never know when someone will sneeze. . . Please continue to pray for eradication of this cancer, my doctors’ wisdom, and our family’s strength, peace and trust in God.
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.
