What a wonderful day of doctor’s appointments this was! The radiology oncologist, Dr. Curran, was thrilled with the success of the 3 weeks of whole brain radiation in June. The Lepto is not completely gone, but more than he could imagine. He loved the dancing videos too!
Dr. Owonikoko also felt very hopeful about the new cancer medication. Everything will be monitored but NO tests until October and November! Feels like a miracle! So please continue to join us in prayers of hope, celebration, and thanksgiving!
(When our boys came over tonight to hear the results of the doctors’ visits, Penny donned in several loudly colored scarves and thrashing a sparkly pompom came dancing out of her room (with only a little assistance) to Kool and the Gang celebrating the good news. Wish you all could have seen Nicholas and Philip escorting her and dancing down the hall; however, the video did not turn out. But you can picture it anyway. This an unofficial, unedited commentary–Penny Hill did not approve “this” portion of the message.)
Stage IV to No More!
Live – Love – Laugh
We arrived home from the hospital on Wednesday, August 3rd, and I’ve stayed out of the hospital since then. I’ve been getting stronger every day but still have a long ways to go. My legs are getting stronger as I exercise them each day but it is my breathing that has such a ways to go. However, it has been an awesome and joyful two and a half weeks.
I have friends visiting and helping out every day. We made it to Philip and Jessica’s lovely engagement party at Nicholas and Kenan’s home last Saturday. (pix) My staff has been to visit me. One of the main highlights this week was being able to join Nicholas and Kenan at First Presbyterian Church of Atlanta this past Tuesday when Nicholas rejoined the church and Kenan joined which really made my heart sing.
Steve Price comes every week from South Carolina for dancing and inspires me to dance, dance, dance even when he is not here. Guerry Mashburn has emerged as the great scarfinator. He’s been here several times and led us in scarf lessons and made a party out of it.
My supper club came for a party on Thursday night the 17th, and then we celebrated to next two days as Philip birthed his latest litter of four pups.
The culmination of this week was the Presbytery farewell celebration. Rev. Dr. Scott Weimer, Rev. Dr. Tony Sundermeier, Rev. Lindsay Armstrong, and Rev. Dr. Paul Roberts all spoke in honor of my ministry, and also I had the chance to say goodbye to all my church colleagues. The speeches were videotaped and we will post them when they are ready.
So, the medical update is that the new medicine appears to be working. I don’t have any obvious side effects, and we will find out how I am actually doing on Wednesday when I meet with my doctors at Winship.
So, please continue to pray with us as we move on to Stage IV to No More. I believe in a God of miracles.
Live! Love! Laugh!
We had a good trip to MD Anderson Thursday and Friday. Our med jet flight felt very safe with all the medical services we needed. Our oncologist decided that we would not go back on the former clinical trial because he deemed that drug was ineffective. He has referred us back to Emory’s Winship and recommended a drug treatment that will not require clinical trials. So, at least for now, we are done with MDA and back at Winship starting a new treatment in the next few days.
This week I have been back in the hospital since Saturday trying to clear up the thrush (a fungal infection caused by the steroids) from my mouth so I can eat without pain. It is improving so I should be going home tomorrow. I am exercising in whatever ways I can in order to regain strength. Today I had an awesome surprise with Steve Price coming to town to lead me in dances I could do from bed. It’s a fun way to exercise as anyone who has been to Montreat knows.
Will keep you posted when I start the new meds.
Live Love Laugh!
Stage IV to No More!
Plans for returning to MDA are now finalized. We’re flying to Houston on a Med flight. It’s a little anxiety provoking just thinking of making the trip. The most important thing is that when we leave Friday from Houston that we have an excellent treatment plan.
So, we ask for a prayer vigil tomorrow—for everyone supporting and praying for us—that whatever you are doing at 3:00pm you will stop and pray for a miracle and that I come back with the miracle treatment that’s the next step.
Thank you for continuing to believe in us. God is still the Great Physician.
Stage IV to No More!
Well, I don’t know how many of you teammates have had the luxury of a 3 week, all-inclusive, 24/7 complete room service, resort vacation like I concluded at Emory University Hospital last Friday evening!
Whew, talk about feeling loved and cared for – it was overwhelming! The first week was pretty touch and go but the medical team, family, friends and Gods strength hoisted, encouraged and kept telling me I could make it. Over the next 2 weeks every doctor told me I went from being the weakest patient on the floor to the strongest. Those were angel words! Great things started popping as my Philly popped THE question and now we have a wedding to plan. Hurray!
As far as treatment goes, I got my 3 weeks of whole brain radiation during the hospital stay. I’m a little unclear what’s next after this 2 week wash period and see final results of radiation. Back to MDA next week to re-enter the 2nd clinical trial we think/hope.
So life lesson of the week. I celebrated my 60th birthday on Saturday. I told my friends it was NOT the birthday I would have chosen yet the BEST birthday I’ve ever had. I was surrounded by love, joy, fun, and some crazy walks down memory lane. Keep hoping friends, not just for me but for a world in need. We can each do our part!
Live – Love – Laugh
Stage IV to No More
Last Friday we were attacked on our left flank and caught off guard. We were at MD Anderson for routine blood work and examinations for the new Clinical trial that started two weeks ago. We met with our neuro-oncologist on Friday for what we thought was a routine follow-up. However, she gave us some unexpected results.
They performed a MRI of the brain with higher resolution than three weeks ago and had the results. Although the spinal tap testing for Leptomeningeal disease (cancer in the spinal fluid) was negative as well as the MRI of the brain in May, this MRI last week did reveal a positive diagnosis of Lepto. This is what we feared in December as well as last month but the tests appeared negative at time.
Therefore, we have had a flurry of changes since last Friday. Penny flew back from MD Anderson last Friday, June 24th, and felt well enough to walk from the gate to baggage claim. She received better pain medications so she slept better than before on Thursday and Friday of last week. However, she had to stop the clinical trial drugs after last Friday. Last Saturday she felt crummy. On Sunday she felt awful and did not get off the sofa. The headache pain was escalating. Monday she also felt awful and stayed the sofa. Even though our wonderful doctor friend, Marilyn, helped increase the pain management Monday night, it did not prove to be enough and nausea set in during the wee hours of Tuesday morning and we had to place Penny in the hospital on Tuesday morning.
She has been in the hospital since then and has been too exhausted to talk or email which is why it has taken this long to post or correspond even to our closest friends. She cannot have visitors at this time due to the need for total rest. She has started radiation treatment and will probably go home in a day or two. Radiation will continue for three weeks. That should reduce the cancer activity and swelling in the brain and provide great relief although also cause fatigue. We will reassess about limited visitation once we get home. We want all of you to know how much we appreciate your thoughts and prayers, but also to know that Penny and I (Richard—this is the first time I am allowed to write the post which you will readily notice it does not have the same flare or analogies as Penny) are not trying to withhold information from any of you nor have we gone into hiding. We have the limited help we need right now to get through the nights and help me and our boys manage days and nights. We will give you all guidance as to what support is appropriately helpful from you.
So, here is our request from all our friends: for communications, please use our blog comment section rather than our phones or emails. We cannot respond back at this time but we do see all the comments and can manage them better via blog (they come to our emails but still easier to manage this way). We don’t need more food at this time and will get word out when we do (we do have food covered from some of you and we are sooooooo grateful.) We are hopeful about the radiation treatment which is already alleviating the pain and will be discerning with our doctors for the treatment following radiation.
We may have been attacked on our left flank unexpectedly, but we have an army of angels in you all that God has provided to help us fight. Join us in shoring up the flanks.
Stage IV to No More!
Richard and I spent 4 days last week at MDA with lots of tests and doctor’s appointments to get this new clinical trial started. Is it working, who knows?! I’m just hoping and praying. I go back to Houston next week for more of the same, but it will be early August before there are scans and results, so I just have to trust in the meantime.
So, I’ve been reflecting on how to adjust to my “new normal” and I think this may be helpful for many of us. I have realized I currently have 4-5 hours of good energy at a stretch with intensive rest between. That is very limiting from my recent past lifestyle. It is sad to some degree, but I have thought and prayed a lot and this is how I’ve decided to deal with it.
I am cognizant that there is something to celebrate every single day. It’s not necessarily big, but still brings happiness or taps my joy. Two Friday’s ago I had a rough day physically, just totally depleted. BUT, my Nicholas came for dinner that night which brought me so much joy, meaningful conversation and laughs! How much more do I need in a day! I can be lying on the sofa just being still and in walks Philip, and I feel like my energy gets plugged in. Your crazy texts, sweet meaningful emails, surprise phone calls, a moment of hysterical laughter with my staff, enjoying reminiscing with old friends, a delicious bowl of soft chocolate frozen yogurt – who needs more than that??!!
I think we often set our expectations of a “good” life way too high. My new normal is low energy and I can neither change nor control that. But my outlook is one of thanksgiving for simple celebrations. Would I have chosen this path -absolutely NOT. But here I am, thanking you for all the little celebrations you help me experience!
Live large, Love deeply, Laugh hysterically!
Stage IV to No More