When I look at the date, I realize how long it's been since I provided an update on Joanie's condition. It has been busy and my focus has been on keeping her comfortable here at home. While her August 29 MRI showed no change in her tumor area, her health has continued to deteriorate from the four craniotomies, the multiple rounds of oral chemo and the massive doses of radiation. The human body just wasn't made for all of that.
We have discontinued active cancer treatments as the oral chemo wreaked havoc on her platelet count. She continues to have excruciating headaches in spite of the massive dose of oral daily steroids to reduce brain swelling. Pain management has been our primary focus as we have tried many avenues to handle breakthrough pain. Things have calmed a bit in the past few days, but another pain crisis will likely appear--and it seems to always be late at night or a weekend. We have decided to seek some additional help.
I've contact a local home hospice group who will be taking over her home health care in the next week. They can provide different meds to keep her comfortable without over-sedating her. She is currently in bed 90% of the time, so reducing her pain level will allow her to move around--which is what the body needs. For those of you who have not worked with home hospice, they do not hasten the passing of your loved one. Their mission is compassionate comfort care. Her current anti-seizure meds and steroids will continue. We just want Joanie to be comfortable.
Joanie is obviously a fighter as evidenced by her 26 months of survival with a disease that typically takes people much sooner. She has benefited from the prayers of thousands of friends and has been treated by some of the finest health care workers on the planet. Joanie continues to have a great attitude and still cracks a joke at the most inappropriate times. We continue to find joy in the good moments every day and I'm proud to be able to take care of her.
Lots of things have happened since mid-June. On July 12, we celebrated our 47th wedding anniversary and the 2nd anniversary of her glioblastoma MF journey. Joanie completed 5 FSRT (fractionated stereo-tactic radiation therapy) sessions that reduced the ability of the tumors to recur. Unfortunately, nothing is available to stop them permanently. We are thankful for this reprieve and enjoying our time together. Joanie's perseverance combined with all of your prayers has allowed her to far exceed the dire survival predictions of Dr. Google.
She started & has now stopped oral chemo as it caused her platelet count to sink to dangerously low levels. At this point, her oncologist doesn't see us repeating it.
Unfortunately, this powerful FSRT technology comes with many side effects as the radiation from the photon laser causes brain inflammation and requires massive steroids to reduce swelling. Joanie's endured periods of bad headaches and confusion and deep fatigue causing her to sleep 18 hours a day. Her brain needs rest and she will get it. She continues to be on anti-seizure meds and has not driven in two years.
Her speech is pretty much gone, which is very frustrating for Joanie. While many husbands think they would enjoy their wives being speechless, it's not what you think. You miss the sound of your loved one's voice. She fortunately still understands what is being said, but is very limited in her responses.
Thanks again for keeping her in your prayers and giving her the strength to carry on.
Joanie’s post-surgery MRI on May 18 showed her surgeon had removed the entire tumor. Unfortunately, today’s MRI here at CARTI showed her GBM tumor has now returned with a vengeance around the edges of the last surgical site.
She is now being fitted for a radiation mask and will do 5 sessions of Radiosurgery (FSRT) beginning next Wednesday. This is designed to destroy as many cancer cells as possible and is the same successful treatment she had in March 2021. The urgency is due to the tumor’s rapid growth and the need for the MRI to be current.
Her oncologist will also likely prescribe the first chemo she took but at a lower dose to see if her bone marrow can tolerate it. Platelets were 98 today so she’s in a better position physically for it.
We are disappointed—a little heartbroken—but it’s no time to give up. This journey began 23 months ago and Joanie has outlasted internet predictions. Radiosurgery will have some side effects (fatigue, hair loss) as before but it’s better than tumor regrowth. I do not foresee another craniotomy as it would only increase the physical & mental toll as more brain tissue would be removed.
This wasn’t a big surprise due to the severity of the headaches she was experiencing. Steroids have since given her immediate relief and her energy has improved. Unfortunately, steroids also affect your sleep, body temp and moods. We are managing through it.
God continues to give us peace in spite of the current storm. Our focus is on the present as He pushes away the fears & worries. Thanks for your continued prayers on Joanie’s behalf.
June 12: Today marks 23 months since Joanie's glioblastoma journey began.
Sorry for the slow update. Life has been busy since Joanie’s dismissal from Encompass Health on June 3. Joanie has continued to battle headaches 2-3 times daily and the necessary pain meds make her sleepy. We certainly don’t want her to hurt, but getting her up and active is crucial to her healing.
This fourth craniotomy weakened her more than the previous three combined. The 43 staples are gone and her incision has healed nicely. Her right-side deficits have affected her balance, so a walker and wheelchair are necessary. Joanie’s speech is limited to a few words and she lost the peripheral vision in her right eye. These issues combine to lots of spilled beverages and numerous clothing changes each day. We have learned to laugh at these mishaps, clean them up and get back to it. It’s just not that important.
A smart speech therapist at Encompass reminded me-- “this bed is your enemy. You have to get out of it.” I understand completely now as the easy thing is to just let her rest. Pushing her to sit up in a chair to eat a meal or take a shower or just get out of the house creates some conflict. I cannot imagine her level of fatigue, but Joanie has retained her ability to object strenuously when she thinks I am pushing too much. It is easy to become irritated in the moment, but it passes quickly and she fortunately doesn’t remember these little battles. Joanie will begin outpatient PT, OT and speech therapy in about 10 days, so we are trying to build her stamina to take advantage of these opportunities. In the meantime, we are blessed to have an exceptional speech therapist as a niece who has provided guidance on activities to help restore her communication skills.
For those of you who have been a full-time caregiver, you can comprehend the whirlwind of emotions as you try to keep your loved one safe, clean, fed and cared for. For the rest of you, your turn will likely come someday (and I hope it is far in the future). No matter your level of effort, you can quickly feel like a failure. You just want you loved one to be comfortable. I am fortunate to be healthy and have a good family support system to keep going. (Joanie is the youngest of nine children and we are fortunate that four of them live nearby.)
Yesterday--of our volleyball friends from Gulf Shores made a 3-hour detour just to check on us. In a 10-minute visit in my driveway, he reminded me about the lessons of Philippians 4. Do not worry, but keep praying. The peace of God will guard your heart and mind. Learn to be content regardless of these circumstances. I can do all things through Him. I was humbled by his visit and the love he showed to Joanie. All of us are either in a valley or a mountaintop…and the time atop those mountains are so short, while the valleys seem so long. Joanie and I cannot imagine going through this valley without our faith. So many people have stepped up to strengthen us through cards, calls and mostly prayers. We feel and appreciate them all.
This upcoming week takes us to CARTI in Little Rock for a 4-week post-surgery MRI and a review by the radiation oncologist to see if a repeat of the noninvasive radiosurgery from last March would be beneficial. It delayed the tumor recurrence by nearly a year last time, so we are hoping it can be done again. Chemo has not worked enough to justify the side effects, so it will not resume. Joanie will also see her oncologist for a medication review, so it is going to be a long day.
Joanie’s last 2-hour car trip was coming home from St Vincent’s on May 20. She hasn’t been out of the house for more than a few minutes since then, so please keep her in your prayers for the strength to make the trip and handle a long day at CARTI.
Sorry we aren’t up for many in-person visits. We don’t need food, but Joanie loves receiving cards. We continue to display hundreds of them in what we call our “foyer of encouragement” at 1102 Laurelwood Court, Jonesboro AR 72401. Most of all, just say a prayer for Joanie to have a good day and for her strength to return. God hears your prayers and we feel them.
May 25: On the day following craniotomy #4, Joanie took a long successful walk down the hall and her speech was unchanged. By 7 the next morning, her situation had deteriorated as she was unable to speak and had some right-side physical deficits. It was frightening for her as she had not experienced that with the previous sugeries. Her surgeon felt she had mini-seizures from the post-op swelling that created the deficits. She was changed from “release to home” to “ release to rehab”.
We came to Encompass Health in Jonesboro for in-patient rehab. Joanie was confused and the 1st night was rough. Headaches returned with a vengeance as the steroids and pain meds were reduced. She has about 70 staples in her skull so her symptoms were similar to a concussion—nausea, severe headaches and extreme fatigue. Blood pressure (which has never been an issue) spiked at 190/110 and her blood chemistry was off. My prayer was simple—take away her pain and let her rest. Each time those prayers were answered.
Today is day 5 at Encompass. Joanie is actively participating in speech, physical & occupational therapy. Blood pressure has settled down and we are seeing glimmers of hope. Taking the 1st shower, getting out of bed and sitting in a wheelchair, and occasionally clearly saying a word. We celebrate all of these successes and give thanks.
We’ve been introduced to dozens of healthcare workers from therapists and patient techs to nurses and housekeepers. All of them love Joanie. They are so kind to her and treat her with caring respect. God shines through her and she affects them all.
It’s a great place, but it’s not home. Each little success leads us closer to that goal of sleeping in her own bed. She will rest better with a purring cat nearby….and nobody taking vital signs at 2 am.
Joanie’s certainly had a challenging time. This surgery was tougher than the previous three combined. And yet she smiles. It’s amazing to watch as workers leave her room feeling blessed.
Please keep those prayers coming for Joanie—for continued pain relief and for progress in getting her home. Your prayers have made a difference. Thanks.
May 18: Fourth craniotomy successfully removed the tumor regrowth, but Joanie is showing some right-side deficits and worsened speech issues.
April 5: Last week's MRI showed no tumor regrowth in the latest surgical site, but there is a blurry area on the edge that is likely scar tissue--so another MRI in a month. Platelets had dropped from 72 to 54K, so the new chemo dosage will be decreased. Three weeks on and one week off. The new chemo caused fatigue & headaches, so we'll see how she tolerates the new lower dosage. With COVID numbers down, Joanie was able to walk around & see some volleyball friends at the Delta Regionals in Hot Springs. She was tired from the exercise, but she loved seeing our extended volleyball family.
March 21: Today marks seven weeks since her 3rd craniotomy. The scars have fully healed and Joanie still has a fabulous head of hair. Following a March 1 MRI that showed no tumor remnants in the surgical site (YAY!) her radiation oncologist said there was no need for radiosurgery. As a result, Joanie has started a new oral chemo designed to work without reducing her platelets. All meds have side effects so we are watching her blood pressure closely and she is enduring some headaches.
Last week's oncology visit showed her platelets had increased to 72K--still a long way to the normal of 150K--but it's in the right direction. Her bone marrow is beginning to rebuild her blood supply so we are thrilled.
Joanie and I talk about the joy of "a good day"--something we always took for granted. As we approach our 47th anniversary, we would not trade this time for anything. Wouldn't it be great if we had figured this out a few decades ago? God continues to provide us blessings in the midst of this storm.
February 23: Staples (all 65 of them) were removed a week ago and her incision has healed nicely. Fatigue remains the enemy, which is a reminder of the trauma created by brain surgery and her low platelet levels. If you've ever felt bone-crushing fatigue, that is what Joanie feels every day. Regardless, she retains her "can-do" attitude and keeps a smile on her face.
A new type of oral chemo will begin in a week or so. She will see her radiation oncologist next week to discuss repeating the radiosurgery that eliminated the remaining tumor cells from the previous surgical site. This intense radiation therapy is non-invasive, but it did cause some temporary hair loss in the middle of 2021. Joanie rocked that look and can rock it again.
Sleet has begun to fall here, so we will huddle together for warmth and enjoy our time together. Life is pretty good at our house. Sometimes I think God brings these weather events to slow us down and remind us that He remains in charge.
February 7: Surgery on Tuesday, February 1 was a success! Her neurosurgeon said the post-surgical MRI indicated the tumor was gone. After 3 more nights in the hospital, we were happy to get home and away from IV alarms, cardiac monitoring and hourly wake-ups to make sure she was resting ok. Rest is not on the menu at a hospital. However, Joanie got great care at St. Vincent's North.
She has 60+ staples in her scalp yet is bouncing back well. I occasionally have to remind her to slow down & rest. We are thankful for all of your prayers that helped create the best of this situation.
January 28: We checked in at the hospital at 5:30 am Thursday, got an updated MRI, then went to pre-op where IV's were started, monitors attached and the usual visit with anesthesia was conducted. Her neurosurgeon came by about 9:00 and said her platelets had dropped to 50K, so surgery needed to be delayed to avoid excessive bleeding. Years ago, we would have been frustrated & irritated over the delay. Instead we looked at each other and said "Breakfast?" Once we got home, a long nap was mandatory.
The new plan is to check in Monday at the hospital, start platelet infusions overnight and be ready to have surgery Tuesday morning. With all of the hundreds of people praying for Joanie, we cannot doubt God's perfect timing in the delay of this surgery.
January 20: Pre-admission testing today showed an increase in Joanie's platelets from 48K to 65K, which was great. Surgery is scheduled for early on January 27, followed by a couple of days in the ICU and another 3 nights in step-down rooms. While the prospects of surgery are daunting, Joanie is looking forward to some relief from the removal of this tumor. We have confidence in her neurosurgeon and the utmost faith that God will protect her. Updates will follow after the surgery.
January 14: A six-week MRI today showed a slight increase in the size of a tumor adjacent to her original tumor surgical site. As a result, Joanie will have her 3rd craniotomy in about 10 days. COVID makes things move a bit slower in the health care world. Her platelets have improved from 34 to 48, but they will need to be over 100 before surgery to prevent excess bleeding. If necessary, she will receive donated platelets to give her an artificial boost.
We are comfortable with this approach. Based on her recent increase in headaches and pressue, it was not unexpected. Her neurosurgeon is world-renowned Dr. Ali Krisht and we have confidence in his abilities for the best-possible outcome. We are thankful the problem has been found and a solution is available. God has given us peace and we are comfortable that He is in control.
December 30: Treatment was placed on hold 10 days ago when Joanie's platelet count unexpectedly dropped from 52,000 to 32K over the course of a couple of weeks. No chemo, no immunotherapy as they both can contribute to low platelets.
She had to endure my giving her a week of daily B12 injections, then spend 5 hours getting an iron infusion in an attempt to increase her platelets. Headaches & body aches have returned but she avoids the pain meds as much as possible. Steroids are a necessity to prevent brain swelling--and they come with positives and a bunch of negatives. New labs will be taken on January 5.
Fortunately, Joanie was able to see a part of her massive family with 51 people joining us for Christmas lunch (don't worry--I catered most of it.) She enjoyed it so much.
Next MRI is scheduled for January 14. Prayers are appreciated for her body to produce the platelets required so treatments can be resumed.
December 3: Following another MRI, we met with Joanie's neurosurgeon and fully expected to get brain surgery scheduled within a week or so. Instead, he said his review of the MRI indicated the new spot on her brain had not grown in the last month and that no action was required at this time. His plan is to continue her monthly oral chemo and be-weekly immunotherapy infusions, with a new MRI in 5-6 weeks. Thousands of prayers have been lifted up on Joanie's behalf and the results are impressive, but not surprising. This will be a great Christmas!
November 26: 5 days of oral chemo completed and immunotherapy infusion received on Wednesday before Thanksgiving. Lots to be thankful for in 2021, as each holiday & celebration means so much. Next up is an MRI & visit with her neurosurgeon Dr. Ali Krisht on December 3. That will give us an indication of what the next couple of months will bring. Either way--we praise God for another day, another hug, another family get-together. Life is certainly precious. It's going to be ok.
November 18: Joanie's oncologist decided her platelet count was sufficient to start oral chemo today, so she did. Good news is that's another weapon against tumor re-growth. The bad news is that it is chemo. She has a good attitude about it and has finished the 1st Christmas tree. Don't ask.
November 17 quick update: Well, rats. Joanie's platelet count remains a bit low, so she can't resume oral chemo for at least another week. Low platelets can cause a bleeding disorder, so we remain cautious. Today was a good day, so Christmas decorating has begun. She continues immunotherapy infusions next week.
Joanie’s radiation oncologist is 80% sure the area of concern on her new MRI is a small new tumor to the rear of her prior surgical site. He & her neurosurgeon ordered another MRI in 4 weeks. If it shows growth, she will have craniotomy surgery to remove it—followed by more of the outpatient radiosurgery she had earlier this year.
She’s back on steroids to reduce brain swelling, which has caused recent headaches and body pain. Her platelets dropped over the past 2 weeks, so we are delaying her immunotherapy infusion & oral chemo for a week to check them again. All of this wasn’t unexpected given her recent symptoms.
We are confident in her doctors’ approach & feel good about today. Joanie has faith this will all help her feel better. After 46 years of marriage, we don't give up easily. We are nearly 16 months into this glioblastoma journey and we cherish our time--even the tough times--together.
If you are also struggling in your life, don't hesitate to email us at the Region office. You are not alone.
Thanks to all of you who continue to express their concerns and offer prayers about Joanie's continuing battle with brain cancer (glioblastoma) since July, 2020. After two brain surgeries, she continues to take oral chemo for 5 days monthly and some infusion to help slow recurrence of the tumors. Fatigue remains a constant enemy, but we know this will pass.
We have resolved to trust our faith and not worry about tomorrow. We are enjoying some great days together and appreciate them more than ever. God is in control. Her next MRI is November 3 (in case you want to be very specific with your prayers.)
As a result, you don't get the pleasure of dealing with Joanie on your Delta Region matters...and are stuck with me. I'll do my best to follow in her great footsteps of serving the members of our Region. Updates will be posted here during the season.
If Joanie and I can pray for you, drop me an email at the Region office.