It's Not a Sprint

Funeral arrangements for Hunter:

Friday, August 30th

11am – Memorial Service, approx. 1 hr.
Sellars Funeral Home, Mount Juliet, TN (2250 N Mt Juliet Rd  Mt Juliet, TN 37122)

*Funeral procession will leave following the service and travel to the cemetery. All are welcome to join us at the cemetery. It’s about 25 minutes travel time between locations.

1pm – Military Honor Guard ceremony
Nashville National Cemetery (1420 Gallatin Pike S  Nashville, TN 37115)

2-4pm – Please join us for some good food and good company at the Life Assembly Church fellowship hall (555 Pleasant Grove Rd  Mt Juliet, TN 37122)

*We are hoping to arrange for someone to be able to watch any children in attendance at church, but can not guarantee it at this time.

If you’re coming from out of town – Mount Juliet is only 15 minutes from the Nashville Airport. It’s a great little city full of restaurants and shopping, just 25 minutes East of Nashville.

The memorial service is going to be really informal. Hunter didn’t want a bunch of tears shed for his death, but would have preferred laughter shared in honor of his life.  If anyone is interested in speaking at the memorial service, please contact me at jennjlindsey@gmail.com. Ultimately we’d like to have 2-3 people that knew him well that have anything they would like to say about him, and don’t mind carrying on for 5-10 minutes, to be willing to speak during the service.

In lieu of flowers, please consider making a donation to the Fisher House, whose purpose is “providing a “home away from home” for military families to be close to a loved one during hospitalization for an illness, disease or injury.” It’s an organization that we’ve been donating to for years, as we feel it’s a really noble cause.

Hotel Accommodations in Mount Juliet:

Hampton Inn

Holiday Inn Express

Our family thanks you for all of your prayers and support during this time.

With a very heavy heart, I’m sorry to tell you that Hunter passed away yesterday shortly after noon. Since our last post about how happy his 42nd birthday was two weeks ago, his condition had rapidly declined. He had been admitted to an in patient hospice unit at the beginning of the week.  Hunter was happy with the decision to be admitted, as he was much more comfortable having 24 hr. medical care since he often felt on the verge of suffocating, and wasn’t able to get enough relief at home anymore. It had gotten really hard to watch him struggle just to breathe, and know that there was no real way that we could help him.

He was ready, and he was at peace. I may post more on this at a future date, but right now just wanted to get the information out there, as I know many of you had already heard. We will be posting our plans for the service by Monday, but likely it will be on Friday morning  (30th), here in Mount Juliet. As soon as we have the details figured out, I will get it posted so that any of you that wish to attend can start making plans.

I am so sorry that this isn’t the news that any of us wanted to hear. Please know that he truly felt the love, respect, friendship, encouragement, thoughts and prayers from all of you throughout this whole journey.

Wishing a very happy 42nd to my dear husband! Hunter was able to celebrate his birthday along with some additional family members visiting from both Georgia and Kentucky. It’s been an exhausting, but really enjoyable day for all 🙂

Hello all

It’s been about two weeks since we came home from hospital. I am in hospice which basically means I have a hospital bed in our home and unfortunately have been pretty bed ridden since we got home. My left arm is still not functional because of the stroke which also means I’m immobile because I cannot use my crutches or my prosthesis. Days consist of waking up around 6:00 AM, allowing Jenn or my mother to fix my breakfast, doing crossword puzzles, and then slowly working through various titles on Netflix. I have good days where I feel really good, chipper, and have a lot of energy. Other days are not so good; sometimes it takes great effort just to have a conversation with somebody.

We understand the severity of what we are facing. I’m taking no other medications other than pain meds for comfort. In fact, I feel very little pain or discomfort as of yet. Every now and then, I have trouble breathing but the meds take care of that when necessary. The lung tumors continue to grow and eventually will completely overtake my breathing capacity. Unfortunately, we don’t know the timeline for this. So every day is cherished. Jenn and I spend a lot of time determining our future as well as that of our boys. Our conversations are difficult and emotional but unfortunately a necessary evil. We continue to remain as positive as possible despite the grim circumstances and continue to have a lot of laughter and positivity in the house. The incredible amount of blog responses from our last post were very moving, and uplifting. We have had a number of visitors as well that have been extremely helpful. My mother and father have stayed to help out since the initial hospital visit in June. The future right now is uncertain, but we are facing it with the love and strength of many family and friends.

Hunter

Hi all-
Jenn here, wishing that I had some good news since Hunter’s last update, but regretfully I don’t.

We had spoken to his primary oncologist right after his last post and she gave us some rather startling news. She said that his disease had progressed much more rapidly than anticipated since his last scans, and if they were unable to get the lung infection under control, they were unable to get him started on chemo again. He also had active bleeding from some of the lung tumors, and since he was on blood thinners already, added further complications. While he’s not on chemo, the disease is progressing at a high rate, and she said she didn’t want to be pessimistic, but in this situation may only have about a month left. We of course were devastated by the news.

Late the night of the 2nd I had gotten a call from his nurse that he was having some sort of seizure or panic attack. I had been spending waking hours at the hospital, but had been going home to see the kids for a bit and be able to put them to sleep myself. I started spending the nights then at the hospital, too. He had a few milder “episodes” where he could feel it coming on and could breathe through it to help it pass, but other than that was his alert, happy and usual self otherwise. He said he’d start feeling like his extremities were going numb, things seemed surreal, his body would go limp and he almost couldn’t move for a few minutes. To me they looked like a seizure, but he was still aware of what was happening. They’d last a total of 10-20 minutes before he would feel normal again. Ben and i had a great visit with him the afternoon of the 4th and he was feeling pretty good. His mobility and spirits were great, and he seemed to be doing well, so I decided to stay home with the boys that night. He ended up having a series of 10 small strokes the night of the 4th, which left his left side paralyzed from the shoulder down. When I got there early the next morning I could immediately tell that something had happened to him. He had a series of scans and spoke to a number of doctors that were all perplexed as to how that could have happened. He’d had numerous scans two days prior, and no blood clots were detected. His speech seemed a touch slurred and his cognitive skills were a bit slow, but I’m pleased to report that as of today these seem to have returned back to normal, and he is able to move his left hand, slightly his arm, and slightly lift short round again. Fortunately since it wasn’t 1 large stroke, they said there shouldn’t be any permanent damage.

I’m sorry this post is kind of all over the place, but this all leads to where we are today. The doctors told us on Monday that they feel there isn’t anything else that they can do to stop his disease. The lung infection seems to have slowed, but is still present. The tumors are growing too rapidly and his body is too weak to start a chemo treatment. At this stage of advancement they don’t feel chemo could be of any help anyway.

We are preparing to bring him home tomorrow afternoon with the help of hospice. The doctors have said that he may have a few days or possibly a few weeks. We are going to make the most of the time that we have together, and after spending the past 3 weeks in the hospital away from our boys, it will do us all a lot of good to be back in the same space again.

I have to say, this whole situation seems rather unreal. To look at him, he doesn’t appear that sick, so it makes it so easy to pretend that we haven’t reached this point yet. I feel fortunate that thanks to such wonderful family and friends taking care of the boys, I have been able to give him my full attention these 3 weeks. Many late night chats were had, and although there’s been many tears, there have been many laughs shared too.

Thank you all for being so supportive and invested in his journey. He continues to feel it every step of the way. Will update when I can.

Jenn

Hi all-

Just a quick update to let you know I’m still in the hospital. Day 11 (yes these go to eleven) and a new record which I’d rather not have.   My lungs have re-expanded, and the chest tube was removed a few days ago. I’ve been running a fever on and off for a few days now, and that seems to be what’s keeping me from going home. Although I feel a lot better than when I first got here, I’m still not feeling great. There doesn’t seem to be a clear reason why I keep getting a fever, but hoping for some answers soon.

On the plus side, I’ll be starting radiation treatment today on a couple of the spots in my lungs that seem to be causing me the most trouble at the moment. This will be the same type of treatment as the spot in my skull, but this time for 10 days.  Should see some good results in the short term from that.

Thanks again for all of your well wishes, thoughts and prayers. We really appreciate it. Hope my next update is from the comfort of our own home!

Hunter

Hi all

A note: If you haven’t already, please read Friday’s (21 Jun) blog prior to reading this one.

I spoke too soon on the last blog. Unfortunately Friday night saw us going to the ER! Really. Some sort of premonition I guess. My left lung fully collapsed and we called 911. Very uncomfortable, but not exactly painful. A strange,  though unwanted sensation. I had a chest tube inserted at 2 in the morning and now am in the ICU enjoying the benefits of being a “serious”patient. Really nice and private rooms to be exact. Vanderbilt has always treated me very well and I’m not at a loss for any pain meds:-). Plus, the discomfort of the tube was quickly overshadowed by the Ben and Jerry coffee shake that Jenn  had so graciously volunteered to purchase.  For any future chest tube victims out there, ice cream works wonders as a distraction. Sweet.

I’m still in shock at how the events played out. Everything that could have happened, did. I was breathing very rapidly Friday night. We went to bed and I woke up not being able to breathe at all. That was one of the most frightening experiences I’ve ever had. I would start uncontrollably coughing and try to squeeze into the conversation at hand. We quickly decided to call an ambulance. (Nope, still didn’t have the siren.) My parents were awake,  having decided to stay for their original visit in case something happened, which I was sure was not going to! So finding someone to watch the boys has not been a stress for these latest symptoms. (Not that it would have been; at 11 pm, our generous neighbors were outside, waving to me in the ambulance, ready to take the boys.) Jenn followed at in our car while I was hooked up to a CPAP machine that forced  air into my lungs. Once we arrived, a chest X ray determined that I needed a tube to re expand the lung. This is the third chest tube I’ve had and this one is significantly much easier. Pain is minimal this time and not being in the middle of a chemo round really helps the cause.

So now I’m waiting for the lung to fully re expand which the docs say should good by Monday.  We’ll see.

Uncanny 🙂

Hey all

Update on the radiation and my status.  I’ve completed the head radiation treatments (see accompanying graduation pic!).  The treatments were fine and I don’t think the side effects were too bad.  Really the worst part during the actual procedure was the mask.  The docs cinch it down pretty tight so it leaves a lasting impression for a good 30 minutes after.  If that was the worst thing, I was doing pretty good!  I haven’t had any double vision again.  I’ll have a brain MRI at the end of July to confirm the tumor is dying or has died.  So that was good news.

A diploma from the radiation oncology folks.

My lungs have not cooperated as much as we would like lately though.  I had a CT scan two weeks ago which showed lung tumors that are starting to grow again.  We anticipated this; these are tumors that did not respond to the first chemo round.  One solution is to subject them to another round of chemo, only with different drugs.  So, it looks like I will be starting up chemo again in the near future.  The news was disappointing as we were hoping to make it through the summer without having to go back on chemo.  But, on the positive side, it’s good to catch it early and nip it before my hair gets any longer in case it falls out again!  Right now, the drugs that I will be getting are docetaxel and gemcitabine.  The drugs used for my first round of chemo (Nov-Apr) were doxirubicin and ifosfamide.  Side effects are similar to the first round, but the logistics are much easier.  Where I was going every three weeks for three 5-6 hour treatments over three days, these drugs require only a one day infusion, every three weeks, for 2-3 hours.  The one day versus the three day infusion makes a huge difference in the psyche of chemo.  Having to get up and go in for the last of the 3 day infusions was not fun.  But, coming in, getting the drugs and going home to mope without the worry of going back the next day or two is much more palatable.  And getting folks to watch the boys is much less painful.  So, chemo shouldn’t be as taxing this time around.

All that being said, it may or may not happen soon.  One of my lung tumors has been causing some bleeding lately and I have been coughing up some blood in the mornings.  Again, this is due to the tumors that did not respond to the first chemo round.  The CT scan showed blood near a particularly large tumor near an airway.  But, oncology to the rescue!  I am scheduled to have a bronchoscopy next Wednesday.  Basically, the docs will snake a tube with a camera down my windpipe determine where the blood is coming from.  If they can reach it with the scope, they can potentially cauterize it and stop the bleeding.  This should also destroy the tumor as well.  Nice huh!  Unfortunately, I wish they could to that for all of them in my lungs, but I don’t think they are all reachable.  If the docs can’t cauterize it, they can get a precise location which then can be used for more radiation treatments, only this time on my lungs.  So, the chemo depends on the results of the bronchoscopy and/or radiation.  I have no problems with pushing the chemo down the timeline!

And that’s not all!  The CT scan also showed that my nagging pneumothorax is starting to increase in size again. (I have to stop getting CT scans!) Grrr…. Reminder that I’ve had two chest tubes for the same one and they are not fun either.  But we’re steeling ourselves for another one if needed.  Nothing is set yet for it; we’ll talk to the lung folks during the bronchoscopy next week and get more info on when or if one will be needed.

On a positive note, my outward symptoms have not been significant enough to warrant any ER visits or having to alter my daily routine too much.  I’ve been really short of breath for the past few days and have been coughing more than usual, but am able to work, be with my family and just get stuff done, which is really what keeps my motivation high.  Jenn and I did make a tough decision this weekend though.  One of my colleagues is getting married in Maryland this weekend.  We had planned on attending for a very long time and were really looking forward to it.  We made the trip plans, reservations, were going to drive (sans kids who would stay with my parents!), enjoy a grown up wedding, and celebrate the happy couple.  But my health just didn’t want to play along this week.  So, disappointingly, we will not be going.  What’s frustrating is that it isn’t any significant hospital stay or symptom.  If something did happen while we were gone, it’s just better to be around here.  It was the right decision, but not the desired one!  Sorry MJ!

Thanks everyone for keeping up. While the news this time isn’t great, it also isn’t surprising, which we have found, with cancer, is much better.  We are still in high spirits, the boys are having a terrific time with camps and the pool.  Life moves ahead and we’re right there with it.  I feel fortunate to be part of it.

Hunter

Hey everyone

A quick note to inform everyone that the radiation treatment for my head tumor is a go!  My last MRI (24 May) was the radiation oncologist’s deciding factor; he said the tumor was in a good position for the treatment.  Ultimately, the goal is to destroy the tumor so my double vision will not return (yes, as well as get rid of the pesky tumor!), and I can get off these dang steroids.  One of the side effects I’ve had is a constant thinking about food and where my next meal is coming from.  Talk about voracious!

I had a head mold made last week for the treatment.  Pics are attached.  Basically, I laid still for a half hour while the team applied a warm polymer mold to my head that cooled and solidified.  This will be used to keep me immobile during the actual radiation treatments.  I’ll lay down and the machine will take over, bombard a very small target in my head to prevent collateral tissue damage and deliver the dosage based on the MRI and more CT data.  It’s pretty amazing how it’s all calculated.  I’m anxious to see how it all fits together.

As mentioned, I will have 5 treatments. They start on the 12th and go through the 18th and will last 30 minutes each.  The actual dosage is a 5 minute procedure; getting set up is what takes the most time.  The docs have again reiterated the small possibilities of side effects and slight risks; but regardless of them, I’m pretty excited to get this thing dying soon!  One (of many) things I’ve learned about cancer is that people can live, work, and exist with tumors in their bodies, which to me regarding cancer was a foreign concept.  I’ve always thought that any kind of tumor was completely detrimental.  But if they are kept in check, monitored appropriately and any new symptoms are quickly addressed, a good quality of life can be achieved.  All that aside, any kind of tumors swimming around in near my brain still make me nervous, so onward with treatment!

I’m still feeling good and going to work.  The boys are out of school and Jenn is planning their summer.  Ben is already signed up for two camps and Jack just wants to go to the pool all the time.  Normality is creeping up on us and we’re reveling in it!

Thanks everyone for keeping up.  The responses to the last blog really reassured me that support for this is never ending and I am still humbled by it all.  Going through it all without this tool would have been a much lonelier experience.  I still have difficulty imagining anybody having to face it without some kind of link to humanity which to me is proof that people really care about others in distress.  Thank you for your continued empathy in the responses. Have a great day!

Hunter

Hey all

Quite a lot has happened in the past few weeks, culminating in some excellent news, which I’ll go ahead and share.  My primary oncologist has been very happy with the latest CT scans and has classified my case as “well-managed.”  I honestly can’t remember what I was previously classified, but it must have been lower than well managed.  But I do know it’s a good category to be in!  She called on Monday to tell us that and we were ecstatic.  I’ll remind everyone that I have two tumor sites that have been the primary concern for the last 6 months:  1) the lung tumors, which cause all the chest problems and 2) an almond sized tumor on the base of my skull near the left back – not in the brain – an important distinction! The bottom line is that the chemo has been working its magic; both the lung and head tumors have shown no growth since the end of the last cycle (Apr 2).  Getting here, though has been experiential.

After the last episodes (chest tube, pneumonia), I started feeling better to go back to work full time beginning on May 6th.  I was really excited to get back to the lab.  I went in all week, getting back into the swing of things and feeling really good about the future.  It was finally looking up and maybe I was finally seeing the chemo in the rear view mirror.  Mother’s day weekend, though, I started getting sick and throwing up twice a day.  This was unusual, considering how good I felt.  I told the doc and she said take some more anti nausea meds.  I have been on blood thinners due to a chemo induced blood clot in my leg.  For those who are not familiar, getting on blood thinners takes some calibration, which includes two drugs during the first month or so, then staying on one drug for as long as needed.  I think I was a little overdosed on both drugs that weekend I was sick.  When I went off the other drug, I immediately felt better the next morning.  Anyway, another sick weekend (also Mother’s day! Sorry Jenn!).

So the Tuesday after Mother’s day, I was feeling strong, somewhat stable on the blood thinners and felt like going to work again.  Whoo hoo!  It was not to be.  I got ready, excited to be feeling well, jumped into my car and began the drive in.  About 2 miles from our house, I realized that my vision was not right.  My eyes were not responding as fast as they should have been.  I briefly considered powering through, but decided on the safe route, turned around and went home.  A significant down on the emotional roller coaster.  Something with my vision could only mean my head tumor was up to something.  I got home and told Jenn about it.  Throughout the day, I realized that my vision was becoming double again much like it had been in December.  It turns out that the tumor is located in a very close proximity to a bundle of nerve fibers which run up to my eyes from the back of my head.  Logic told me that since I hadn’t been on chemo for 5 weeks, the tumor must be growing, and pushing on those nerves subsequently causing the double vision.  Grrr!!!  Just when things were looking up (pun intended.)

I stayed home that Tuesday and woke up the next morning with my vision impaired even a little more.  My doc scheduled an MRI to determine if the tumor was growing.  I  decided on Wednesday to have Jenn drive me to work instead of sitting around the house feeling sorry for myself.  As long as I could focus on close up objects, close one eye occasionally, and sit still, I would be okay to do some experiments.  I was getting determined to not lose the momentum I had established the week prior.  Jenn agreed as well.  We got in the car and started out, but cancer would prove to be the ultimate snake in the grass again!  As soon as we made a left turn, I felt an overwhelming dizziness, numbness throughout my body (not just on one side), and almost felt like fainting. The experience was surreal.  I could look at my hands and see them but they didn’t seem like they were in front of me.  Surprisingly, though I did not feel nauseous.  I told Jenn to stop the car.  I could talk and listen, but I knew something was not right in my head!  Ahhh!!!!  Not only extremely discomforting, but another complete surprise symptom.

We went home and I sat for about 20 minutes.  The feeling subsided and I decided to stay home and just sit.  I didn’t need any fainting spells that day.  I was feeling okay and Jenn decided to run some errands.  We agreed that if it happened again, we would call 911 so she wouldn’t have to deal with me in the car.  Of course, while she was out, it crept up on me again.  The second time was not as bad as the first, but I definitely knew something was wrong and probably needed immediate medical attention.  Jenn got home and we called the doctor and 911.  The doctor prescribed steroids to help with the vision issues.  And the 911 call allowed me to ride in an ambulance!  That was fun. Although, it must not have been much of an emergency as the driver didn’t turn on the lights.  I must comment that the ambulance crew were incredible.  They stayed with me the entire time, took me to Vanderbilt ER and ensured I was cared for every step of the way.  The driver even said a prayer for me that I will never forget.

Once I arrived at the ER, I had a third and final episode which was the worst.  I coughed up some blood (grrr…. lung tumors still bothering me?) and I felt just completely weak.  Fortunately, having the episode in the ER moved me up in the MRI line.  I had the scan and the hospital admitted me overnight for observation. What a day!

Thursday, I felt much better, had not had a dizzy spell, and I realized the double vision was improving.  Steroids are amazing!  We also received the news that the MRI showed no head tumor growth which was great!  My doctor and I agreed, though, that radiation, instead of chemo, was a viable alternative for the tumor in my head to prevent any more double vision.  We had discussed this in December, so it was not a surprise.  Really it is just the next logical step.  The chemo has worked its charm on my lungs, and now addressing the tumor in my head was next.  I met with the radiology folks both in the hospital on that Thursday as well as this past Monday.  They explained it very well.  Based on the MRI, they believe that the tumor is pressing on those nerve fibers I mentioned and that if it can be destroyed by radiation, I should have no more double vision issues.  So tomorrow (Friday 24 May) I’ll have a zoomed-in MRI of the tumor in my head.  If the radiology folks determine that the tumor is a viable candidate for radiation, they will then plan the treatment, which will last about 5 days overall, about 30 minutes each session.  Side effects and risks are very minimal.  And it’s about a 5 minute (convenient) walk from my lab.  Considering the alternative would have been more chemo (the arch nemesis!), radiation sounds like a walk in the park!  If all goes well, I should be starting treatment in a couple of weeks.  If the chemo was intended to destroy as many lung tumors as possible, then getting the head tumor under control with radiation is just another tweak in the process and I view it as progress toward a minimal symptom life.

We received some other good news this past Monday too.  On Saturday, I had a CT scan of my chest to check the lung tumor progression since the last chemo session.  That’s when my oncologist said that I’m “well managed” and my lung tumors are not growing any.  There is one tumor that may have been the culprit during the ER visit when I coughed up so much blood.  But the steroids seemed to have helped out.  I haven’t coughed up any since; I haven’t had any more vision problems, and I haven’t had any more dizzy spells.  My doc said that if the lung tumors give me any more immediate issues, radiation is a good alternative for that as well.

So right now it looks like it’s going to be a good start to the summer.  Jenn and I are very encouraged by all the news we’ve received.  While I’m not in remission, the tumors are not growing.  And that’s the kind of response we like to hear.  We completely understand if things take a turn and the lung tumors start growing again.  But with the radiation possibilities, I’m hopeful the summer will be chemo free!  I’ve been back to work this entire week, walking much better in my prosthesis, and feeling much stronger every day.  My stamina is returning and for the first time in a long time, I actually think we’re starting to come out on top of cancer!  And to TOP it all off, my hair is growing in again!

I hope everyone is doing well!  I will update as the radiation treatment becomes more solidified.  Thanks for keeping up!

Hunter