Done with 42/30... Now we wait

Dad finished his radiation and first round of chemo. Provided the treatment has been effective, he will have a 4 week break, use the optune cap, and begin 5 days on and 23 days off (5/23) of chemo for a year or two.

The end of radiation has been bittersweet for dad as he has developed a close bond with his radiation team. Y'all have no idea how much daddy loves each of you and how much your kind words and dedication to dad has meant to him and us. THANK YOU!

All things considered, dad has done wonderfully. His counts stayed up to the point that his doctor said he didn't even look like he was on chemo. Dad is incredibly strong and resilient. He has been his whole life, and now has proven to be no exception.

Dad reported that his radiology team told him he would still feel the effects of the radiation for about 21 days after his last dose. It's a cumulative effect and hopefully the "fizzing around" will be effective! My understanding is that the radiation may cause what's called pseudo progression. This means that, on an MRI, it will give the illusion that the rumor has grown when it hasn't. It can be difficult to differentiate swelling from actual growth around the perimeter. Because of this, Dr. Weir is waiting 4-5 weeks before ordering another scan.

He has been a little more tired than previously, agitated, and kind of bossy. It's hard to determine if this is tumor, medication, restlessness, or a combination. Hopefully his next MRI will rule tumor out and we can tweak other factors.

Dad met with Dr. Pandey at West Clinic today to discuss moving forward with the Optune cap. This is a very interesting device that comes from Israel and has shown promise in keeping glio tumor growth at bay. It is 4 patches of electromagnetic discs that oscillate over the skull. The goal is that the oscillating will prohibit tumor cell division and keep it, at least, the same size as after radiation.

Because dad has begun "standard of care" (SOC) for the tumor, he is ineligible for some clinical trials that target rumors as "newly diagnosed." I am still in search of the best trial which will begin in the event that the tumor grows from this point forward. This has proven to be very tricky, because many trials have exclusion criteria which include tumor size. Dad's tumor is very large and pretty deep. As of yet, it hasn't crossed midline (hemispheres), but at the initial surgery it was very close.

Our cousin Marvin is coming in town tonight from Germany to keep dad company for the next couple of weeks. Mom returns to work Monday and we will need all the help we can to keep dad company and supervised while mom is at work.

The next few months will be tricky and anxiety driven with dad and planning Katherine's wedding. Please pray for peace and comfort during this time.

We are having t-shirts made to raise money for possible expenses related to clinical trials (travel/housing expenses), and will donate the remainder of the money to brain cancer research efforts. We have the rough draft of the "adult version" and are working on "kid friendly" shirts as well. I will post the link to order when we have all the shirt designs completed.

Thank you again for being there for our family and praying/sending good energy our way!

Karen has also updated the photoblog. We are so grateful for her love and willingness to document these times in a media for which dad has a passion. http://www.karenpulferfocht.com/blog/drbobsbrain

Day 20 of Radiation

We all went together to Low's bridal in Arkansas to find Katherine's wedding dress! It was quite the experience for our German family who aren't accustomed to the "go big or go home" attitude of the south lol. Katherine and Martin were recently engaged and originally planned to be married in December. Due to the current circumstances and the uncertainty of dad's diagnosis, they have chosen (with the pastor's blessing) to get married in May. While we had fun looking at dresses, and Katherine was stunning in everything she tried on (she should be a wedding dress model), there was a weight on our shoulders while we looked.

We cried at least once as the realization set in that we couldn't wait for a dress to be ordered, and yes, we know it's kind of short notice to just now be looking for a dress for a May wedding, because we were on a time crunch. An invisible timeline that we can't see the end of was forcing our hands in making decisions in what would be considered a short time frame. The worst part about it... We know everyone has a limited time on this earth, but we have been told our dad's time may very likely be shortened in a fashion that is devastating. And all we can do is watch and wait as it happens.

In the meantime, we cherish every moment spent with him. Savor the person that he still is, and tuck away these good times in the deep places of our minds to ensure we never lose them and despite what happens, who he may become, we will hold fast the memories of who our dad IS.

One night this weekend there were 22 people in my parents house eating and socializing. This is how our house has always been. A huge setting for community and fellowship. No one cares where you came from, how much money you have, your education, your disabilities, you are welcome at my parents'. This has not changed. I love being there when something so familiar takes place. It almost makes it seem like there is nothing different or out of place. Almost. Until you look up and see my dad with his huge scar and an oval shaped bald patch on the right side of his head where the radiation is blasting away at that tumor and destroying everything in its path...

Thank you for your continued prayers and support. We have at least a year of actively fighting this tumor with chemo, so your strength and faith is still very much needed!

Karen has also updated the photoblog.

http://www.karenpulferfocht.com/blog/drbobsbrain

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Today dad completed day 20 of his 30 days of radiation. Overall he is doing really well. He has some days worse than others where he exhibits some irritation, fatigue, loss of memory, and general confusion, but he's great considering.

One of dad's fist high school students (from back in the 80's) came to visit him. Anthony is from England and has hung around in Memphis since having moved here with his family when he was in high school. I met Anthony when I was in high school myself. Dad and I used to go to Otherlands coffee shop every Saturday morning from the time I was 14 until I was about 20. It was a rekindling of sorts of an old tradition that dad and I had of going to McDonalds on Saturdays when I was a very little girl. It was our special time where I got to be with just my dad and no younger siblings. I digress... So these Saturday mornings were spent hanging out with the diverse group of friends with which dad held company, and always have me an insight in to the social person that dad was aside from being "my dad." Anthony was one of these people, when dad began making comments about how he would like to see him, I contacted him to come visit.

He and dad spent hours talking about how dad was when he was a new teacher, discussing Anthony's new hobby of building models, looking at pictures of Anthony's recent trip back to England, and just having a great time in general.

Another connection that dad has is with the Confucius Institute at the University of Memphis. Dad and his mentor, Dr. Kung, wrote a grant together to facilitate the sharing of Chinese ideas, education, and culture through this program. One of the professors that had previously been in Memphis heard of dad's diagnosis. She sent one of the new professors now in Memphis to the house to represent her in giving her good wishes to dad. Dad was kind of confused at first because he didn't know this representative, but once we figured out what was happening, he was deeply honored that someone in China would send a stranger to our house to greet dad on her behalf. Another example of how dad touches lives across the world.

Since I last wrote, dad also had his first round of blood work done to monitor his platelets and blood counts. Dr Weir said that his tests all looked great and he thinks dad will remain healthy and strong through this round of chemo and radiation if his counts stay the way they are. Praise God!!

During this entire journey, dad has been adamant about starting a Christian fellowship at the house. He wants to begin with reaching out to men, of all ages, but in particular those with children to help them better minister to their children and lead by example. He has begun his first steps in this endeavor by having a bible study at the house in Thursday nights. I wasn't there for it last week, but heard that it went well and dad is planning for the next one tomorrow.
As many of you probably know, mom is from Germany. This past weekend, her sister and niece came from Germany for 4 days to spend time with mom and to visit dad. Sigi and Nina haven't been to Memphis since 2005, so it was great to see them here. They brought great candy and provided a much needed connection to mom's family while they were here. Mom's entire family is in Germany, so I can only imagine how difficult this has been for her not to have easy access to them.

Day 10 of 42/30

The past week of radiation and chemotherapy has been fairly uneventful. This is a good thing! Though dad initially has some decreased energy, he has rebounded for the most part. He had some neuropathy pain in his knees and some restless nights. He started some herbal supplements to help with the aches and side effects of the treatment, it seems to helping!

We are also waiting to hear back from Dr. Pandey regarding adding another supplement called Boswellia serrata, also known as frankincense (one of the gifts presented to Jesus!). Studies have shown that frankincense helps decrease cerebral edema is 2/3 's of patients, and it works on different anti-inflammatory pathways than typical meds such as steroids, which cause muscle atrophy and weakness long term. Not to mention they are very painful to withdrawal from. Fortunately, dad is on what's considered to be a very low dose of steroids for this condition. The frankincense would be best if we got it from a compound pharmacy, so once we get the approval, we will check insurance to see if it's something they can help cover.

Last weekend, dad's sister, Paula and Mark made it in town to visit. Mark is able to come every other weekend, so it's great when he comes. Paula is in Atlanta, so whenever she has a chance, she has made it a point to come visit. She is the "caretaker" sister. She has always been the one to make sure she is there for any family member that is sick, so it's nice to be on the receiving end of it.

We are still waiting on the feedback from Dr. Pandey regarding some trials. Sheng, a friend from church, has also offered his expertise regarding some of the mutations. He is a Lukemia researcher at St. Jude, and gave some insight on the importance of some of the mutations with regard to Lukemia treatment. He has done some additional academic research to try to help us narrow some trials for this initial stage, but also will be helpful in case we have to look in to trials for treatment of recurrent tumor. Another good friend of mine has also been so gracious as to offer her help and have her husband look at the mutations as well. Karen's husband Atman also works for St. Jude. It's such a blessing to have that hospital in our city because of the friends that specialize in cancers that work there, and their willingness to lend their skills.

Friday night, Martin (Katherine's fiancé) set up a fire pit and we made smores. Annabelle was mesmerized by the fire and it was warm enough that the pit was complimentary rather than needed for comfort while being outside. Diego came by that night to try his first smore. He became an expert quickly, toasting the graham crackers with chocolate on them, softening the chocolate just enough that it melted around the marshmallow when all the parts were put together.

Dad's long time friend Greg made his way to Memphis for a couple of days this week. He is a pilot and lives in Rhode Island. He brought dad some great salt water taffy, per his request, and hung out for a couple of days. Some of our closest friends have offered to hang out with mom and/or dad while dad is getting his radiation, and Greg was no exception. Dad, of course, had to show him the pyramid/Bass Pro Shop while he was here. I didn't get to see him after that, but I can only imagine they had a good time.

Dad has also had his eyes looked at again by Dr. Diaz at the VA. She seems to think that the loss of periphery vision and difficulty with distance seeing is a result of the optic nerve being compressed by the tumor/swelling. Dad's eyes look good overall and she is having him do some drops to reduce the pressure from the Keppra, and some sort of therapy to work out the rods and cones.

There is a meal sign up if you would like to contribute in that way. If you would like the link to sign up, please email or text mom or me.

Your prayers continue to be powerful as dad is still feeling relatively well and even improving a little. Thank you so much!

Dy 2 of 42/30

Day two has proven to be a little more tiring on dad. His tumor is fairly large, and there is a very large portion of the brain being targeted with the radiation.

He looks a little swollen, probably from the steroids, and is relying a little more on his cane. Typically, people have a gradual decline in energy throughout the radiation and chemotherapy and around day 21, is when we have been told you are likely to see a pretty significant effect.

Overall, dad seems to be doing well. He is grasping for normalcy by hanging out at the cigar shop and trying to stay busy with mom. The monotony is mind numbing I'm sure.

Side note about the treatment. This particular type of chemotherapy isn't known to cause people to lose their hair. Most people lose hair at the radiation site, meaning they have a big bald patch. Personally, I think dad will keep his remaining hair unshaven as conversation starter. 😁

We spoke with Dr. Pandy at the West Clinic today. She provided us with the long awaited genetic results of dad's tumor. The most important part of the results was that dad's tumor is methylated. That means the MGMT mutation is turned off. MGMT is a "suicide" DNA repair enzyme. With this gene turned off, it keeps the cells from repairing the tumor DNA as they are killed off by the chemo. MGMT methylation is associated with an improved response to treatment with DNA-damaging chemotherapies such as temodar.

So the layman version is that the fact that the tumor is methylated means that it is more likely to be responsive to the chemo!! Praise God on high!

Ideally we would have liked to see some other mutations turned on along with this, but if we could only pick one to be on or off in our favor, this is the one we want, the way it is.

Keep praying, sending good thoughts, and positive energy! It's working.

Day 1 of chemo(42)/radiation(30)

Overall, dad was in great spirits today. He said his days have been kind of slow to start, but attributed that more to the lack of motivation because he doesn't have anywhere to go at a certain time (other than radiation) more so than the tumor or newly added chemo/radiation.

Since I wrote last, many things have happened... Dad was fitted for his radiation stabilizing cast, he had his eyes checked, we had a snow day, Shela and Tommye Kay went back home, Reyna has been coming to "heal" dad's energy, some friends of dad and mom have continued to trickle by, and dad had Erling Jensen's with some of his old co-workers.

Dad has been having some difficulty seeing and processing things that he reads. It's likely that there is just still some swelling from the surgery compressing his optic nerve, but we took him to see Buddy anyway. Dr. Flinn and his family have been wonderful and loving friends of our family for a very very long time. Donna has a love for all things German, and Buddy is one of the most kind and gentle men I've ever met (as long as he isn't your basketball coach 😉). He was incredibly accommodating with dad and his quirks and schedule to help us try to determine if there was damage to the actual eye from the swelling after surgery, if the trouble dad is having is a product of the tumor/surgery, or if the meds dad has to take are contributing. Like all amazing doctors, Dr. Flinn knows his limitations and has a consult out with another doctor that may have some better insight to dad's issues. We love this family so much, and can't express enough how thankful we are that they are in our lives.

Diego has been out of town recently. In his place, his mother Reyna has been coming to provide healing touch to dad. I don't know what the technique is called, but it was explained to me that it's similar to, but much more advanced that reiki. She is helping to heal dad's energy in his body and aligning it with the positive energy around him (it's my poor understanding). All I know is that it calms dad, and he feels better after she does her thing.

Another set of old friends that have made it by a few times are the Hardins. Dr. Bill Hardin and dad have always gotten along beautifully, and his wife Yvonne and mom do as well. Their oldest daughter, Rachel, is very good friends if Katherine's.

Having the support of your friends during this time means so much. Even just a quick text to say they are thinking about you, or letting you cry to them, yell about how unfair this is, become angry at the circumstances... It means the world. For me, my most reliable and non judgmental sounding board, my rock and friend, happens to be my boss Amy. The support of her and the company for which I work, makes each day go by more smoothly for at least the part that I am at work and not able to be around dad.

Memphis had a snow day for a winter "blizzard." Schools and businesses shut down, the bread and milk aisles in the grocery stores were empty, and kids had their pajamas on inside out in anticipation. Well... We had about an inch of snow that stuck to grass and was melted by mid day in most yards. That's Memphis for ya! Annabelle thought it was great to crunch through the snow and it made for a pretty picture to look upon from the porch at my parents' house. ❄️

A friend from LA carved dad a calming bird. This bird has been in dad's pocket everyday. It's such a small thing, with so much love put in to it that makes a huge difference.

Sunday night, dad and some of his coworkers were able to go to dinner at Erling Jensen. When dad went in to the hospital to have his surgery, they were supposed to have dinner with some friends the night before his surgery. Dad bought a wine velour sport coat with black piping and was so excited to wear it. From the time he could talk in the hospital, until the day he got out, dad talked about going to Erling Jensen to eat. He was finally able to make it there and Erling was absolutely wonderful.

As we (dad) move through the 42/30 regimen, we need prayers for his continued health, strength, and general functioning. The radiation could start to cause problems with edema, and can make things a little more difficult for a while. Please pray for mom and Katherine, as they are with dad every day and are his caregivers at this time. Their strength will be needed. I'm continuing to scour the Internet for clinical trials, and am shifting in another direction, so prayers for guidance there.

Today was dad's first day of chemo and radiation. When attacking this particular type of cancer, the initial standard of care (SOC) is 42 straight days of oral chemotherapy, concurrent with 30 days of targeted radiation. The radiation is 30 days because it's only on weekdays (excluding Jewish, Christian, and government holidays) and dad gets a break on the weekends. The chemo is every single day.

Dad got to wear his "cast" for the radiation today. Mom is getting a picture of it tomorrow so I can show you. They make an impression of dad's face and upper chest so that his face can fit in to it and not move during the radiation. Radiation is a pretty tough thing and they want to reduce the likelihood of dad's good brain cells being targeted and killed with this stabilizing contraption.

Dinner at Erling Jensen

We are so grateful, and feel so loved by the outpouring of support from all of you.

Karen also has some new posts http://www.karenpulferfocht.com/blog/drbobsbrain

Dad and his sisters

 

Praying group

25 days after surgery

This past weekend has been filled with love, family, blessings, healing hands, delicious food, wonderful music, and a constant flow of friends.

The weekend kicked off with Tommye Kay and Shela making it to Memphis on Friday. Mable also brought some fried chicken and chicken livers, per dad's strange cravings. Noel and Marky each had the opportunity to take dad to smoke cigars at his favorite smoke hole, The Tinder Box. I know dad loves just being there, with anyone. It has always been his place of solace and he loves the owners and the men that run the shop. Some of dad's most faithful and diligent friends have proven to be from the group of men that he shares cigars, stories, and life with in those humidors.

Saturday night, dad was blessed with not one cellist, but two (Diego and his sister). They played a duet and TK said that it was beautiful and very calming for dad. Afterward, dad and Diego laid down on the floor and prayed for an hour.

Dad's coworker, Allison Collier, also brought dad a beautiful quilt that some members of her church made for dad. She has a situation requiring brain surgery too, so it was nice to know that despite her own condition, she has also kept dad in her prayer circles and her church is lifting him up as well.

Wendy's family has a stunning property in Como, MS where we love to visit when invited by the Crenshaws. Hal and Lucia are some of the most kind and caring people you will ever meet, we are so blessed to have them as part of our "marriage" extended family. Dad's sisters were able to visit Como with him and the Crenshaws yesterday. Dad loved the walk through the groves. Despite it being very cold, my understanding is that it was incredibly relaxing and much needed. I'm hoping dad will still be in good spirits and health when the trees bud in the spring because I have some pictures I would love to have taken with dad and the girls down there.

Katherine picked a pretty amazing extended family to bring in as well. The Haagas have also come by to visit and bless us with their wonderful company and Fletcher's wonderful smoked trout and some very rapidly disappearing sausage pinwheels that Marietta made! Even with Katherine and Martin out of town, the Haagas came by to show their love and support of dad and our family.

One of the best things about the friend group that mom and dad have established is the international component. There are friends from China, Brazil, Italy, Egypt, Venezuela, Germany, Liberia, Canada... All over the world. With these beautiful people come their cultures and their food! We have been so blessed by the diversity of people and dishes. There is no monotony in the standard casserole or dish. These foods are made from the heart and with so much love, that you are warmed by it when you eat.

Today, some elders from the church came by to "lay hands" on dad. Karen was there to capture the moment, and the sisters said it was a truly moving experience. Our hope is that with enough healing words and touch, that God will find dad in His favor and allow him to enjoy more time here on earth with his earthly family. He still has so many things to do. Katherine has to get married. Mark and Wendy, and Katherine and Martin haven't had children for dad to meet. My girls need their Opa to watch them graduate from high school and college, at the very least. Mom needs her husband with whom she has built this beautiful life and family. I need my dad, my mentor, my biggest critic, and most staunch supporter. We aren't ready to move in the direction of timelines dictated by this diagnosis... At least I'm not. Our next step is to prepare for chemotherapy and radiation, and continue to accept the love and support of all of dad's friends and family as we move through our journey.

Thank you for your continued prayers and good energy and thoughts sent our way.

I am adding pictures from this weekend in the "photos" section of this site.

 

21 days after surgery

The flow of visitors has slowed down a bit and mom and dad are kind of in a routine that includes doctor visits and planning for the beginning of chemo and radiation. They have an MRI scheduled for next week to establish a solid baseline for the tumor and any possible growth.

The radiologist at the VA was really nice and explained how the radiation would be administered. Paula was at the appointment with them today and has been hanging out with dad since she came in town a couple of days ago. Tommye Kay and Shela will be here tomorrow and are staying for a week; I know dad really appreciates his sisters coming to support him. Family is very important to dad. We were raised very tight knit and family was always a priority. Even though his sisters live across the south, the fact that they are taking time to come and be with us and dad is a blessing. We hope to see more of them throughout this journey.

Noel and Margaret (AKA Nana and Paw Paw to Mia) made an awesome cheeseburger casserole and salad for dinner tonight. Dad enjoyed talking to Noel and it's so nice to have the love and support of Mia's dad's family too. There are a lot of them, which means tons of extra prayer warriors!

Keep praying that I will get a call back about a clinical trial that may accept dad, and that the treatments we choose will be the best for dad.

One thing about this evening that was calm, relaxing, and close to normal was when we all sat down to shell pecans. We have a neighbor who has a couple of pecan trees that have never dropped good pecans in the 30 years my parents have lived there. This year, all of the pecans are delicious! I'm sure Wendy could shed some light on when pecan trees mature, but right now, we are just happy they have pecans. Mom makes great breads with pecans and the girls like helping to shell them. Mia cracks them, Annabelle tries to help shell, and Adelyn throws the "naked" pecans in to the bowl. Fun times for all!!