Please join us in celebrating Ryan Humphrey’s life. The memorial will be held in the auditorium of Athens High School in Troy, MI at 1:00pm. Park in the student lot and enter auditorium doors. Light snacks and beverages will be served after the memorial.
We know that many people have been impacted by Ryan and his journey. This will be a public celebration of his life to allow everyone who was touched by Ryan to participate in his memorial.
We would love all guests to comment below (or send in an email) with one word that describes or reminds you of Ryan.
Please RSVP by email to Nicole (Confidentjoy@gmail.com) or on the Facebook Event so we can plan appropriately for everyone who is able to be there.
In lieu of gifts or flowers, please consider donating to Angiosarcoma Awareness (website is www.cureASC.org).
Any cards, gifts or flowers should be sent to Geri Kopiczko: 9615 Bartel, Columbus, MI 48063
Link to obituary:
It’s not goodbye, it’s see you soon.
There will be a private family funeral this week. A larger public memorial service is being planned for this weekend (or the next) for any and ALL who want to gather to remember, celebrate and grieve, the shining light that was Ryan.
Details to be posted.
Thank you so much for the outpouring of love and prayers and support and testimonials.
We Love You All.
Well, we decided to bring Ryan HOME! One of the perks of having a nurse as a Mom and a doctor as an Aunt. All 3 of us are the executive team according to Ryan. His comfort level has immeasurably increased. Pain and seizures are controlled, and that irritating catheter is gone. There is sunlight and rain and panoramic views and birds and deer and music and laughter. A huge garden tub to soak and relax. There are giggling Children running and playing. And dogs to provide soft snuggles and wet kisses. Home cooked meals with mouth watering smells. And family can now stay as long as they want, provide warm company and gentle care (not just for a short visit). We are settled in and ready for whatever life brings. Every moment is a miracle. It is So Good to be Home !
Visitors, cards and prayers are still welcome; depending on Ryan’s stamina.
Give me a call if you wish to visit 517-242-3434
Home is near 32 mile & Gratiot near Richmond
9615 Bartel Rd, Columbus MI 48063.
Update from Ryan’s Mom:
My Ryan has been a strong and stubborn boy his entire life. We are so much alike and often butted our heads together. Today, as a man, he is no different. Yesterday he moved over, patted the bed and invited mom to lay down with him for some hugs. This is so hard. But we are learning his non-verbal cues.
Ryan’s body is so young and resilient, he continues to fight this disease with super human strength. He has his good days and bad days. He is aware less and less, and sleeps more and more. Loads of people have visited, reminiscing and laughing. But the overload of stimuli is very taxing and hard for Ryan to process. However, It’s the increased pain (which he even now denies) that causes his distress. For the most part, we are able to interpret the signs by his behavior and actions. His restlessness, his agitation, his frustration and the simple furrow on his brow. He had a really bad day Friday, repositioning himself constantly; up and down out of bed. Standing within my embrace because his legs are not cooperating with his brain. Sitting with the support of his sister. Laying down with the comfort of his fathers warm hand. Andrea and the boys are coping as best they can. The boys visit when they want, but they are frightened with Ryan’s unpredictable behavior. Andrea has an enormous weight and grief on her shoulders. Our family (which is very large) provide constant love and support to them both. Someone is with Ryan at all times, 24/7. Yesterday, we once again got his pain under control. And He is now in a well deserved and restful deep sleep.
It is so very hard to watch a once brilliant and tenacious mind not able to function in the quick witted, educated and humorous way as we knew him. He would have hated this. So really there is no change beyond keeping him comfortable and waiting for God to take him home. We will update when we can. Heartfelt gratitude for the outpouring of love, support and prayers.
A post from Ryan’s mother:
Ryan has inspirationally battled and waged against Angiosarcoma for a near decade, overcoming again and again as Angiosarcoma pushed back. The most recent scans showed the recent mass was aggressively growing and a new lesion found deeper. He has also experienced seizures the past three days that do not have a clear cause besides a body battle worn and weary.
One of the things not often discussed is the daily battle of pain caused by fighting cancer so hard. Odd things. Unexpected things. Ryan’s daily struggle was his back, and has been for almost two years. His spine has been scanned and checked but the origin never figured out. It recently increased to becoming intense, and something he just wrestled with silently. The pain is now severe enough to restrict movement, sleep and possibly be a contributing cause of the seizures.
A Craniotomy would not fix this pain, reach the deeper lesion and would not change the relentless aggression of the most recent masses. The gift of hospice, however, gives the comfort and relief he needs, and deserves, after such a long journey. At this time he is in and out of awareness yet when he is aware he brings a chuckle to those sitting near him with jokes and continued reassurance of love – because that’s who Ryan is. We are grateful for the gift of so many extra years with him, and so thankful we can surround him with love in return.
As a recap, the team and I ultimately decided, after many consults and point of views, that it would be in my best interest to do a short interval follow-up scan without taking any treatment medications as opposed to going on very low dose Avastin. Since I am asymptomatic for the most part, we felt it would do more harm than good had I went with the Avastin to take care of the edema.
At the moment, I do not have an appointment with neurosurgery. Both Dr. Lang and Cheryl are out of the office this entire week. I’ve emailed them both as well as the department as well as trying to contact the scheduler through myMDAnderson to no avail. I’ll keep trying only because that’s what I do! 🙂
This evening Ryan will begin his “visit” in Houston. He will be having an MRI and PET scan followed by visits with all 3 of his doctors. This is his first follow-up appointment following the high dose of steroids his medical team prescribed due to the large edema that presented on his last scans which is located within his left temporal region; above, below and beside the old and known lesion.
Please join us all and pray for clear scans and nothing but the gift of wonderful news for Ryan as he continues this journey. There is strength in numbers and most definitely power in prayer.
Sending love and blessing to you all during the holiday season.
Good evening! We are on the airplane and heading home shortly from Houston to Detroit then to drive from Detroit to Grand Ledge! With all said and done, I should be making it home driving around 2am! Home sweet home!
It’s a little too wordy to explain everything to you right now. Mostly, this is because Spirit doesn’t have Internet on their airplanes or else I would do it on the flight home!
It’s not legion/live cancer severity as there are currently no active lesions using our best observance from everybody. My body and brain all seem to be clear of active legions.
However, I do have a serious and somewhat dangerous issue that needs to be addressed and taken action now. I have a large edema within my left temporal region located above, below and beside the old and known lesion. This is the already treated area very close to the upper left ventricle area. With the blocking of this ventricle, the area grows because the liquid has nowhere to go since it can’t pass from lateral ventricle to the third ventricle.
This is a very bad and scary situation. I am going to take steroids to help the edema shrink as this is actually causing a midline shift currently which is effecting the speech center causing a random and frustrating situation where I cannot remember certain words. I can remember definitions and explanations, but I can not for the life of me remember certain words nowhere and randomly.
Overall, it was a very long 3 days with many, many discussions with a lot of educational and bold doctors and nurses. We have plans to do the steroids while still taking keytruda for now as it seems to be working very well. We will keep a very close eye on all treatment and any symptoms getting better or worse especially in the brain.
Please pray the Kensington continues to work AND the steroids will cause things to calm down so ventricle liquid can move freely.
Our airplane is taking off soon! Sorry I cannot go into depth right now, post medical images or medical reports, but I promise to do so in a day or two when I am able to find time.
Please continue to keep us in your prayers. We love you all so very much, and thank you for helping me love my life, my family and my friends.
Have an amazing evening.
Good morning, and a very happy Monday! Thank you for sharing your lives. It is amazing to be a small part of each others lives even if it is through pictures or messages every once in awhile.
We just landed in Houston. Unfortunately, my current appointments at MD Anderson can not be smaller than a 3 day trip. I must get my PET scan and see my sarcoma oncologist, Dr Ravi, since I am still taking keytruda. I must also get my MRI and see my neurosurgeon, Dr Lang, as well as my radiation oncologist, Dr Li, to keep beating this disease.
With that said and in summary, I have a long 3 days with a total of 2 images (PET scan and MRI) followed by 3 consults with Dr Ravi, Dr Lang and Dr Li.
If you have a moment, please say a prayer for our family that it is His will once again to make it through this disease. It’s been amazing the help God has listened to us and our prayers. I am certainly not always worthy, but I am very blessed and grateful for the miracles that continue to happen!
I miss home, but this will, hopefully, be 3 days if amazing news. Time will tell, but I do feel good currently with this regimen.
I will make it home in time to make it to the conference for Landons school as well as both boys high school Halloween parties. We are so very happy and grateful that appointments seem to allow us to love life and everything that is happening at home.
We love you and everything you continue to due for us. You’re perfect in our lives and all you come into contact with. Thank you for taking time, sharing your lives, and being a part of ours.
PET scan today. Dr Ravi and MRI tomorrow. Lastly, Dr Lang and Dr Li on Wednesday followed by heading home and arriving late on Wednesday evening!
Have an amazing day! I’ll update when I get results and have time. We love you.
Good afternoon to all of you amazing friends and family. Today is an absolutely beautiful fall day. It helps relax me and keep me calm. This is an important statement because life can get very busy sometimes. I look forward to the life moments and situations that humble me and allow me to slow down. There is nothing more beautiful than enjoying the current moment sometimes. Today is one of those days.
My port came out without any complications yesterday. It is a weird feeling having no port there any more. It’s been an integral part of me and this journey for 4.5 years of battling this cancer. It has administered 74 rounds of chemo with some rounds having 2 or more infusions. I have attached a picture of my dual lumen port to this message. I’m a nerd like that, and I asked if I could keep it. Don’t worry! They cleaned it for me too. 🙂
Lastly and equally important, today is the start of round 3 of keytruda (round 77 total). My blood work came back great which is one of the absolutely amazing things about this treatment. It doesn’t attack your cell counts!! As I write this, I am currently getting infused.
After this round, we head to Houston from October 24-26 for a MRI, PET scan, and consults with Dr Ravi, Dr Lang, and Dr Li. Any prayers you could spare would be amazing, and we would be forever grateful.
We love you all so very much. Thank you for loving us so much and getting us this far on this journey. We will beat this. We will live our beautiful lives for a long time…together.
Have an amazing day, everyone.
September 20, 2016
Good afternoon and a beautiful one at that! I hope this message finds your lives full of love and happiness. I truly hope that no matter what life throws your way that you are able to find the good and still smile. Life is bearable for the most part if you can enjoy it through trials and tribulations. Make memories and help another. We are all in this together.
I don’t often look back anymore. I don’t think about what I’ve been through for several reasons. First and foremost, it’s a lot to remember. It’s the main reason I brought my personal medical record to electronic record keeping. A quick search can find almost anything I need so I don’t need to clog what brains cells I have with all of those results and consults. Second and most important, the past is the past. There is something to be said about living life one day at a time. This applies to most everything. If life is throwing too much at us for a moment, we truly only have to worry about today, physically. The past is over and tomorrow is not here yet.
However on the rare instant I do look back, it is usually a milestone. Yesterday was such a day. Rewind 7 years ago yesterday I was undergoing my very first surgery ever against this disease. 7 years ago I was coughing up blood, had a plethora of tests and scans done, but there was no consensus on what was going on. The one thing the entire team agreed upon was that it was bleeding and needed to come out.
Fast forward to today, I’ve now had 76 rounds of chemo (including today), 2 lung surgeries with the removal of my left lung, 5 gammaknife noninvasive brain surgeries, and 1 craniotomy. We also know that it is angiosarcoma, and it is a force to be reckoned with. With your help, we are currently, once again, without visible disease on the macroscopic scan (read on any imaging techniques available today).
I’ve now seen my youngest son off to preschool when I didn’t think I would make it to my oldest son’s first day of preschool. I’ve made countless memories with my beautiful family. Thanks be to God, this has all happened while fighting this devil of a disease. We are blessed, and I will never forget that fact. We are at His mercy, always, and for that, I am forever grateful.
With that said and as I eluded to above, I am currently undergoing my 2nd keytruda immunotherapy treatment (74th treatment over). So far it has been night and day compared to chemotherapy. There are no premedications to take prior to treatment, no prescriptions to fill for after treatment, and I feel completely fine, all things considered. It just needs to work, and I hope and pray that it is.
We love you all so very much. Have an amazing day. 🙂
Good evening, and I hope all of you are doing amazing in your beautiful lives. I cannot tell you how sorry and embarrassed I am to not have done an update (or any post) for a long time.
We are doing well, and we could even classify it as doing very well, thanks be to God. I’ll do a much longer and detailed update another time, but I didn’t want to put off writing any longer.
I went to Houston last week (2.5 day marathon) which in the end after all was planned turned into a PET scan, MRI, blood work, chest x-ray, consults with Dr. Lang, Dr Li., and Dr. Ravi, and finally, my first treatment of the immunotherapy drug, Keytruda (pembrolizumab).
We are very happy to report that the MRI came back stable with no new lesions!! As for the PET scan, there are no visible lesions and NO new lesions. Praise God! Both reports are attached to this update. It’s been a very, very long journey, and we are here because of your love, prayers, guidance, and God’s unending love and mercy. We are here presenting with not one visible lesion on the scans. I am careful not to call it NED. We can say I am NED on the macroscopic scale. This leads into the fact as to why I am starting immunotherapy.
Praise God that my insurance approved it’s use even though it’s off label (not FDA approved for angiosarcoma). 5 years ago any insurance wouldn’t have thought about it for a second. It costs $21k per dose, and each dose is only 50mL. It would have been denied. However, times have changed. My medical team sent in some very convincing clinical data. Lastly, when I followed up with my insurance contact who approved it, she said she doesn’t want me to go without this medicine. All glory to God. We have a very blessed life! Never ever give up!
As for life itself and long story short, I’ve been busy doing a million things, and we cannot believe school starts for BOTH boys tomorrow! We are beyond excited and proud of Landon and Logan. Two years ago I found myself crying to possibly not even make it to Landon’s first day of preschool. Now, here we are, with Landon starting first grade and Logan is now starting preschool. Life.Is.Good.
We love you all, and thank you from the bottom of our hearts for continuing to pray for us regardless of how often you hear from me. There is strength in numbers and most definitely power in prayer.
We love you.
(click on the below images to enlarge)
A very good and beautiful morning to all of you! I hope you are enjoying your lives and mentally, it is everything you thought it would be at this point regardless of what has been thrown your way. For me, I am very blessed. I have a beautiful life and all cancer has done so far is to give me a platform and a testament to God’s mercy as well as the ability to push through no matter what with the backing of an amazing support group. The alternative is never an option, so what else is one suppose to do besides fight with all that they have? We love you all!
I am sincerely sorry about the delay in getting this message out. Truth be told, my local oncologist called me late in day on Thursday to give me the news. It was the news we had hoped and prayed for, but I wanted to have the physical report in front of me just to make sure. Past precedence has taught me to do this extra step. Fortunately, the report read even better. When the words and phrases include “continued improvement”, “barely discernible” (read barely visible/detectable), and “no significant activity” are used to describe 2 active angiosarcoma lung lesions, you know God is on your side against a deadly disease. We are beyond ecstatic about the double dose of great news between both the MRI and PET scan results. Next scans are at the end of summer so it’s about time we get to have an almost “normal” summer! It’s been awhile!
Fortunately, I felt great physically yesterday so I spent the entire day running around town and doing work outside around the house. It’s a rarity to feel that great, but I believe the culmination of it being my off week from chemo with great scan news allowed the stars to align for both a physical and mental recovery at the same time. Time got away from me while doing all of this yesterday which is why I am just getting this out now.
I am always very hesitant and nervous about having both of these scans within a week of each other. Since my first brain lesion, we have not had both scans come back clean on the same scan cycle. If one was clear, the other almost inevitably showed something. For once, we can celebrate with being in dismay at the same time. For once, we are ahead on all fronts. For once, we can breathe a sigh of relief knowing that our prayers are answered in the exact way we have been praying. Prayers are always answered, but they aren’t always answered on our time or in the exact way in which we prayed and what we prayed for.
I immediately got into looking forward mode and texted Dr. Ravi. He called, we shared a moment of congratulations for each other, and we discussed our plan going forward. As I mentioned before, we want to be more proactive than reactive especially now. With that said, we are setting into motion getting Keytruda (immunotherapy) paid for so I can start taking it. It most likely will take a few weeks so I will start round 74 on Monday and just finish out the round since they are 3 weeks long. Hopefully and God willing, I will be starting Keytruda as a standalone treatment following this round of chemo.
Thank you, everyone, for all of the prayers, messages, and love. We wouldn’t be here without you. As Dr. Ravi stated, a typical angiosarcoma brain metastasis patient is given 8-10 weeks. I won’t get in to how I feel about statistics, but let’s just say we have blown and continue to blow those statistics out of the water!! Thanks be to God, we are currently about 130 weeks and counting since my first brain lesion! It will be 7 years this August since my first symptom in all of this. We are blessed beyond comprehension!
Have an amazing and SAFE holiday weekend. We love you all!
It was a great day with regards to the brain. All previously treated lesions are stable, and there are NO new lesions! Praise God. Rescan in 2 months for my MRI.
Thank you for keeping us in your prayers as always. We just need to get through next Thursdays PET scan with unremarkable results. If so, I MAY just have a “normal” summer to enjoy (chemo doesn’t count….with 73 rounds and going, it’s just a formality at this point!).
We love you all so very much. I’m a very exhausted, but smiling, man right now!
Tuesday, June 21, 2016
The day is going rather smoothly, and everything is happening relatively on schedule. I’m all checked in for my MRI. IV has been started with no issues. Currently, I’m waiting to be called for the actual MRI. It should only be a matter of time. 🙂
We’ll find out the results some time around 1pm central time tomorrow.
Thank you for all of the amazing notes and messages of love and comfort. You’re an incredible group of people who constantly surround my family and me with hope, prayers and words of wisdom.
We love you all so very much. Sleep well this evening, and hug those closest to you. Never miss an opportunity to share your feelings.
Have an amazing evening!
Monday, June 20, 2016
Good morning, and a very happy and beautiful Monday to all of you. I hope this message catches you in a great mood with a smile on your face just thinking about how blessed you truly are. It’s what I do often. We had a near perfect weekend with amazing weather. Fun in the sun on a lake on Friday, celebrating the beautiful and amazing wedding of my cousin and his now beautiful wife, and a nice, relaxing father’s doing what the day is for – playing with my family. It was a very memorable weekend.
My blood counts came back strong so it’s time to ring in part two of round 73 of chemo. The final part until ALL of my re-staging scans. I feel great so let’s continue to beat this thing back.
CathFlo worked like a charm on my lateral access of my dual port. The medial access is still being stubborn, but we only need one to work to get chemo without using peripheral veins. However, we do theorize that since we started out with 2.5mL of t-PA (drug used to break up a clot) and had 0.0mL when all was said and done with the medial port, it had to go somewhere. Perhaps the drug is just sitting in there (or sat in there since the half life is pretty short) and eating away at whatever is blocking the catheter.
Long story short, we have on side of the port that works so it’s still a success!
If we could ask for a few moments of time for a few extra prayers these upcoming weeks, we would be forever grateful. It’s been awhile since I have run the medical gauntlet with all of my scans so close together. Stress is an understatement!
Today is chemo. Tomorrow morning I leave for Houston and return home Wednesday around midnight. I have my MRI late tomorrow followed by consultations with radiation oncology and neurosurgery to determine the efficacy of my most recent gammaknife and to determine more lesions, if any. After that dog and pony show is finished, I have my follow-up PET scan on June 30 locally to determine the status of my lung lesions that, thanks be to God, we seem to have a strong counterattack against it that seems to be beating expectations!!!
Have an incredible day, and tell those who you hold very dear to your heart, as I hold all of you, how much they mean to you. Words of compassion, sincerity, and love go a very long way for a person. It costs nothing. 😉
We love you all so very much, and we could not do this without you. Ever. Nor would we want to.
Thank you for all of your messages and notes. It’s been busy here lately so I sincerely apologize for the lapse in Facebook posts. I know you’ll say it’s okay, but from my point of view, I built this platform surrounding our journey to always make sure I treat you all like dear family. It’s important to me, and I think about all of you often.
We had an absolutely amazing weekend celebrating our two amazing boys birthdays. Thank you so much to all who came out to their dual birthday party. They had so much fun at the amazing shark themed party that somehow my incredible wife put together all on her own. She is truly an angel! I am a blessed husband and father.
Please pray for a fight we can win. Please pray that God’s mercy keeps us as a humble family of four for many, many years to come on this beautiful planet.
Just to clarify, we have been fighting this disease in two different fronts for some time now. Unfortunately, we’ve only had to deal with one or the other at any moment on this journey.
In other words, we have to deal with it in my central nervous system (brain) as well as systemic (lungs). MRIs are follow-ups in the brain to restage my progress. PET scans are follow-ups in the rest of the body.
We live but one day at a time. By diligently adhering to this often forgotten philosophy, I have enjoyed this beautiful life, every single day, what will be 7 years this August. God is great, and it is amazing amount of years against this disease.
I’ll keep fighting with all that I have as long as we have you all on this journey with us picking us up when life tries to tear us down.
We fight on. Forever.
We love you all so very much. Thank you, each and every single one of you, for taking the time to love us, share our story, learn from our journey, and for living your lives.
A very good and beautiful morning to all of you!! Thank you for all of the warm and heartfelt messages you always send but especially with my most recent update about gammaknife #5.
The last 24 hours have been chaotic and a whirlwind, and I had no part in causing it!
Yesterday morning, I had all travel and accommodations planned for gammaknife this Wednesday until the radiology team called to inform me that there was no availability this week. They weren’t sure why neurosurgery gave me the wrong date. They scheduled it for next Wednesday, May 11. I cancelled and rescheduled all of my plans for the following week.
Fast forward to 6pm yesterday, I get a phone call from radiology that there was a cancellation this Wednesday. They questioned if I could make it and get insurance approval. I have never backed down to a challenge, and this wasn’t going to be the first time. I had all the phone numbers needed (although at that time my insurance company was closed).
I had radiology email me the request for authorization forms, and I would call my insurance manager this morning first thing, fill her in, and email her the forms. I set an alarm so I wouldn’t forget!
As far as travel, thankfully flights are open since I fly standby. I rechecked myself into the same flight, and we didn’t lose our spots in the standby list, thanks be to God.
As far as hotel and car, that’s another issue entirely! Normally not an issue, but there is an oil and gas convention at the NRG stadium which is right next to MDA. Everything, and I mean everything, is booked up. No rental cars…no hotels… I ended up going through some third party website for hotels that said there was a hotel opening. Whether that’s true or not doesn’t matter now, I have a paid receipt with a confirmation number!
As for a car, we will take the shuttle to and from the airport.
It was a very long and exhausting day yesterday, to say the least. I had my mind, body and spirit all set for this Wednesday. Then they said it’s not available. I was able to catch my breath. Then they called and said there is an opening. I was now running around like a mad man now when just 8 hours prior everything was scheduled as far as travel and we were packed! Mind you we were out shopping and getting ready to eat dinner out when they called.
With all that said, we are at the airport in Detroit ready to fly to Houston via Dallas. Insurance has been called and approval is done. We have a room again for the next two nights. We have transportation again. Phew!!! Breathe, Ryan, breath….
I was talking to a neighbor yesterday about my circus of events. I joked about how I’ll beat this disease, no probelm. It’s the stress and anxiety that the behind the scenes people cause me that will do me in!! I really can understand and feel so very sad for the elderly and uninformed that have to do this crap. This is a lot of work for a patient to do. Sometimes I think they forget that I am the patient. I should remind them of the 5 brain surgeries (soon to be 6), 2 lung surgeries, and 71 rounds of chemo…..they probably wouldn’t care. I’m just a number to the support staff! Lol
Thanks be a God this all worked out. I’ve learned a lot in the past 7 years of fighting, and it really is amazing the things we can do in such short time.
One last Godsend, it is very foggy in Detroit right now. It is below landing minimums, but just within takeoff minimums. A 920am flight would normally be a turn flight rather than a kickoff flight. However, our flight is a kickoff flight meaning the plane is from the night before as well as the crew!! Let’s just say the passengers going to another destination most likely won’t be leaving soon since there airplane is currently in a holding pattern unable to land. However, we are currently boarded and ready to depart! smile emoticon
Phew! Ramble session is over for you all now. Have an amazing Tuesday!! We love you all, and thank you for all of your love and prayers. Houston, here we come!!
Good evening! I hope this message finds your lives full of purpose and meaning. I hope that, no matter your age or walk in life, you have surrounded yourself with caring, uplifting, and inspiring people. I know I have, and I can thank you all for that.
I sincerely apologize for the delay in getting this message and update out. It’s been a crazy few days, but that is no excuse. I have built a platform where I like to keep everyone updated, informed and in the know because I get as much out of it as you do.
With that said, one of the downfalls of having the MRI early morning with consults the same day is that the scan will most likely not be read and finalized. Unfortunately, this was the case. I’m a factual and detail-oriented person, and I like to have all the pieces (or most if possible) before giving an update. This saves time and energy on both ends, and I hope it avoids missteps and incorrect information. It can be very easy to embellish emotionally if all the facts aren’t there. I try my best to avoid giving emotionally charged updates, and if I do, it’s only the positive parts and how to battle on.
Once again, we didn’t get the news we had hope for, but we also didn’t get overly devastating news either. Unfortunately, a new spot has developed in my brain. It is about 1.8cm by 3.0 cm located within my left hippocampus. Besides this spot, all previously treated lesions are stable, and no additional spots were remarked upon. I am asymptomatic which is always a very big blessing.
This lesion is more central than any previous lesion, but according to Dr. Li, there is enough clearance between it and the brain stem. With that in mind, it also fits within the size parameters for gammaknife. As you may have guessed by now, we are going in for gammaknife #5.
Thanks be to God, we have assembled a top-notch and fast acting medical team. I have to do my part on my end with insurance, travel, etc, but together we are able to get things scheduled quickly. Gammaknife is scheduled for this Wednesday, May 4. All of my travel has been arranged. We are ready to get it done!
As a side note, I have to stop chemo momentarily because one of the drugs (Gemcitabine) is reactive with radiation. We fully plan on starting up chemo once I get the okay. That would finish round 71, and it would be time for another PET scan. Talk about an emotional and stressful month!
I’m living and making memories, and it is for that reason that I can do this and the hardships are well worth it. No matter what we are going through and what trials and tribulations come our way, we can only live one day at time. When tough times fall upon us, shorten you window and don’t think too far ahead. Focus on the task at hand and take full advantage of this current and beautiful day.
I texted a few people once we had most of the facts in the hopes that it would slowly make it’s way to people’s hearts and minds. My sister and I discussed briefly about my emotions and how could I possibly have any energy left to convey my feelings. My answer to her was something I’ve learned and a skill I’ve acquired over the years.
Truth be told, I haven’t cried in a very long time. We’ve been through a lot, and we continue to endure and conquer. I also don’t get excited with good new. I’ve learned the best thing to do is stay in the middle. Don’t ride the roller coaster that can so easily consume ones mind. Figure out a plan. Pick up the pieces, if any. Move forward and fight.
We’ve been here before. We will beat it back again.
If we could steal a few moments of your time, please pray for our family. Please pray for piece of mind. Please pray that gammaknife is beyond successful again with no lasting side effects. Please pray for God’s healing hand to live a long life with the beautiful family He has given me. Looking forward, please pray the chemo is working and that my ensuing PET scan shows positive results for a disease that is losing it’s battle.
Thank you for always loving us, caring for us, and carrying our burdens when the road gets rough.
We love you all so very much.
Good morning, and a very happy Monday to all of you! I hope this message finds you doing very well. I hope and pray your lives are full of love, purpose and memories. We only get one chance through this life. Make it count, and always know you have the ability to change something that isn’t bringing you joy and happiness.
I apologize for the delay in getting the PET scan results from last Thursday to you all. We had a very busy weekend starting with our much anticipated family fun day to Legoland, Sea Life Aquarium and Rainforest Cafe. We had an amazing time, and it was a much needed family respite.
In actuality, we did get the phone call from my local oncologist on our way to Legoland on Friday. After getting the news, I immediately got on the phone and left my oncologist in Houston, Dr. Ravi, a message as well as a text to see how he wants to go forward. I also called my local pulmonologist to have him personally review the films for his point of view. With that said, I have attached the report to this message.
In summary, it was not a slam dunk great report. First and most important, there are no new spots. As a side note, this scan is an important reminder to be your own advocate, take charge of your situation, and always be in the know about what’s going on. For instance, this current report remarks upon a “new” spot in my upper right lung. This isn’t true. It is not a new spot. It was remarked upon before, and we already knew about it. If we did not know or were for some reason unaware, it would change the clinical course of treatment going forward.
Unfortunately, both spots grew but as always, isn’t so cut and dry. The one in the lower lobe almost doubled while the upper lobe lesion grew slightly. The peculiar and somewhat promising notion from this scan (besides no new lesions) was the fact that both lesions had very minimal PET uptake. They were 1.1 for the lower lesion and 1.6 for the upper lesion based on a scale from 0-15 where 0 is physiologically normal. In layman’s terms, the lesions do not appear to be very active at all. They could be slow growing, dying, or something else entirely.
Furthermore, I have not coughed up blood in almost two weeks which is very reassuring. Most may not remember, but this is how the entire journey started for us. I began coughing up blood. However, I never stopped coughing up blood until after surgery. I take this as a very promising notion that something is working, thanks be to God.
Dr. Ravi called me back while we were in Legoland, and my pulmonologist called me back on our trip back home. Mainly, we needed to know Dr. Ravi’s opinion on what treatment, if any, we would do since I still had chemo scheduled for today using the same regimen.
Per Dr. Ravi, since the PET uptake was minimal and the fact I am currently not coughing up blood, he wasn’t convinced that the current treatment isn’t working. He stated an enlarging tumor especially with low uptake on a PET could mean several other things besides tumor progression. Some of these explanations could be an inflammatory change due to tumors dying or as Dr. Ravi described, a bleed over effect from this type of tumor. Long story short as long as there are no drastic changes in symptoms, he wants to do 2 more rounds (6 weeks total) of this current regimen and re-stage with another PET scan at that time.
The further you go along a journey such as ours, the more you are able to discern good news from bad news as well as the ability to take a step back, analyze a report, and decide for yourself what to take from it.
For this reason, we are grateful for this scan. There are no new tumors and it didn’t reveal anything catastrophic. Thanks be to God that we can continue on course to eradicate this awful disease once and for all! Thank you for all of your continued prayers! They’re working, but they’re working on God’s time frame.
With that said, I am currently getting infused with chemo round 70. My blood work came back amazing. I attached the report. God only gave us one direction to move, and that’s forward. No reason to look back. We will win this fight.
We love you all. Have a beautiful day.