After Stu’s retirement in 2007, he and his wife, Lin, hit the road full time in November. Lin loved traveling and was looking forward to many happy days on the road. Unfortunately that was not to be. Below is Stu’s journal, starting from the day they headed out.
Stu and Lin have finally left the building
Nov 17, 2007
After a few false starts and final arrangements, Lin and I have finally started to travel. We are currently in Ohio heading to the KZRV factory for a few warrantee repairs. Then on to Branson for the Christmas shows and on to the Texas gulf coast for the winter. On a sad note, we had to put Ember down, her age finally caught up with her. She was a terrific friend.
Rainbows End, Livingston TX
Dec 12, 2007
We are well and in Livingston TX for the next 4 weeks (maybe more). It’s just north of Houston, a short drive from the coast and within striking distance of Austin, so there is lots to see and do. Next week we’ll become real “paper” Texans. Weather is cool but pleasant. No ice or snow….yahhh!!!
We came out of Branson MO and were able to drive away from all the ice and snow. It went below freezing a few times but those were days without precipitation. Christmas will be here at Rainbow’s end which is the Escapees HQ Park. Nice campground with plenty of really nice people and plenty of activities.
Our adventure is turning out very much like we anticipated, relaxed, without hard and fast constraints, full of discovery and laughter.
Update from Livingston, TX
Dec 30, 2007
Our adventure continues as we bask in the warm climate of east Texas. Not only the weather but the folks around these parts are warm and wonderful as well. (That’s some Texas talk). We have been sitting here at Rainbows End RV Park for about two weeks. We spent a very nice Christmas with around 50-60 of our new friends. It was a pot luck affair. We met some fellow motorcyclists and are planning to ride with them soon. Stu has been riding just about every day the weather is good. New Years Eve party is next, looking forward to some more fun. Heading south, down the Gulf coast in January. Hope to catch up with some friends in Mission TX.
Lin’s medical situation
Jan 16, 2008
Well, Life seems to be a bumpy road that throws you into paths you never expected. The unexpected is exactly what drew us to our current lifestyle. A lifestyle we intend to continue for a long time.
Pauline has given you guys the gist of our current situation and we really appreciate her friendship. (Her email is copied below) We will continue to stay in touch with her and with her assistance, keep everyone informed as we progress to a full recovery. We will email everyone as time allows and call Pauline when we can’t email. We will update the WEB site as this new journey proceeds.
Now to the details (as they say “the devil is in the details”). As we traveled to Branson for our Christmas “HOP”, Lin complained of some double vision and numbness on the left side of her face. Stu accessed his rusty paramedic hard drive and ruled out strokes and other serious maladies. The symptoms seemed vague and more annoying then serious. We had a great time in Branson.
As we traveled to TX the symptoms got a little more worrisome. We arrived in TX and located a local Doctor. He ordered a MRI and lo and behold there was a tumor located adjacent to the Pons/brain stem. The medical term is a Meningioma. Meningiomas are the most common benign tumors of the brain (95% of benign tumors). The tumor is very slow growing. Off to the neurosurgeon for probable surgery. That was yesterday 1/15/08. The surgeon was located by a means we will discuss at a later date (a higher power was at work). This guy is one of the leading neurosurgeons in the nation and has performed very sophisticated and advance techniques for the last two decades. Needless to say we are going to stay here for the surgery. The only other surgeon of this caliber is in Pittsburgh. We are not going to snow country.
Surgery will involve two procedures and plenty of tests. MRIs CAT scans and other tests will provide the surgeon with the level of detail necessary to know exactly how to move forward with the procedures. The first surgery will be traditional knife and removal of gross amounts of tumor. The surgeon estimates about 90-95% removal with this technique. Additional removal via knife increases the risk of damage to adjacent nerves, vessels etc. Lin will be in the hospital for about a week. About two months later a “gamma knife” will be used to remove the remainder of the growth. The Gamma Knife directs up to 201 precisely focused beams of radiation at the target tissue. This will be done on an out patient basis.
So, that’s it in a nutshell. We have discussed our plans with family and friends. We really appreciate all their support. It is the glue that holds a very fragile world together and the only really important thing right now. God bless us all.
Lin lost 2 pounds
Jan 17, 2008
Lin decided to donate her hair to “Locks of Love”. She will have to have some of her head shaved for surgery and decided not to waste any of it when some other could use it. Thanks for the emails. Spirits are very high.
Olivia’s new playmate (brother / sister?)
Jan 21, 2008
Hello from Livingston. We have news from Maryland. Stu’s daughter, Heather – AKA Olivia’s Mom, is expecting in August. It is great timing for us in that we planned on being back in MD about that time. We are thrilled with the news. We really miss Olivia and all our kids and grandkids.
We are waiting for all of Lin’s testing appointments to be arranged, so there is no new news as yet. We will post any info as we get it. Spirits remain high and very optimistic. We really enjoy all the emails etc.
Busy week ahead
Jan 27, 2008
Thanks for all the calls, cards and emails. We really enjoy staying in touch with everyone.
It was pretty much a slow week, waiting for the doctor to call with all the appointments. Sure enough, we now have three days worth. None of them in Livingston. Monday we travel to Houston for a two day stay at a Hampton Inn a few blocks away from St Luke’s Hospital where Lin will have all the imaging done on Tuesday and Wednesday. Then it’s on to Kingsport, just north of Houston on Thursday for a cardiac stress test. Needless to say it will be a challenging week.
On Friday, we got a call from Duane. He was in Houston delivering a load and heading back to the east coast on Saturday. We got together for lunch here in Livingston. It was good to see him and catch up with things. He helped Stu get Lin’s new chair out of the truck and into the RV. (see the pictures) Thanks Duane.
Surgery is scheduled
Feb 5, 2008
Well, the long week of tests, exams and imaging is over. We met with the neurosurgeon today and now have a date for surgery. All the data collection has confirmed the doctor’s initial idea for handling the tumor. Wednesday Morning February 13, at 0700 hours Lin will be admitted to St. Luke’s Medical center for the first surgery. The goal will be to remove (de-bulk) as much of the tumor as safely possible. The surgeon will not attempt to remove the entire growth in order to preserve the vital structures in the area. Subsequent procedures will be used as necessary to remove/reduce any remainder. Probably with a gamma knife (no incision) about 2 months later. Lin will be in ICU for about 2-3 days and then on the general floor for about 2-3 more.
These tumors are almost always benign and very slow growing. It is a good possibility that additional surgery would not be needed for up to 10 – 15 years. We are both very optimistic and have full trust of the surgeon and his staff. We firmly believe he is taking the safest approach for the best outcome. We have done all that can be done at this point, the rest is left to divine intervention.
We will let everyone know how things progress next week. Please keep Lin in your thoughts and prayers.
Arrived in Houston
Feb 10, 2008
Arrived in Houston and checked in a the LakeView RV Resort. This park is 6 miles from St. Lukes Hospital. Tomorrow, Lin’s daughter Bev, brother Paul and sister-in-law Debbie will arrive. Looking forward to their company and support.
Lin’s Surgery
Feb 13, 2008
Whew!! Lin is out of surgery. She went in the St Luke’s Hospital, Houston at 5:30AM Wednesday morning. The actual surgery started at 9:20. She came out of the OR after midnight. 80 to 85% of the tumor was removed. All nerve conductions are intact and all blood circulation was maintained. She has every reason for a full recovery. However, 14 hours of surgery is a lot for a body to take, so the next day or so will be a lot of wait and see. Thursday morning she will have a CAT scan to determine what remaining tumor there is. The doctor can then determine the next step. Stu and Bev were able to see Lin in the ICU, she was still sedated but moving all her extremities and connected to every sort of monitor you could imagine. For now we will let nature takes it’s course and Bev and Stu will get some rest.
God bless Dr. Pribil and the staff at St Luke’s.
POST-OP update
Feb 15, 2008
Day 2 and we have had some swerves in the path to recovery. The doctor assures us that these events were not unexpected and he would have been surprised if they didn’t happen. Lin has developed a small hematoma in the area that contained the tumor. It is static and is not causing any direct problems. He has opted to wait for the brain to heal and the swelling go down before attempting to address it. Today’s CAT scan showed a widening of the ventricles within the brain, the doctor placed a catheter to remove the extra fluid. This was done an hour ago at around 8:30 this morning. The results were exactly has he had hoped. Lin is still on a vent and the nursing staff is monitoring all her systems and making the necessary adjustments. We are not out of the woods by any stretch. However, as each minute passes the risks of complications go down. The current concerns are infection and pneumonia neither has developed but it will remain a concern throughout Lin’s recovery. We remain optimistic.
Paul and Debbie will be returning to Kansas today. They have been a welcome source of strength and inspiration. I thank them for their support. Bev is staying at least until Sunday, longer is necessary. We have been holding each other up through all of this and I really appreciate her companionship, she to is a source of strength. Thank you all for your thoughts, prayers and encouragement. See ya ‘round the bend!
Latest Info on Lin
Feb 16, 2008
Lin did not have the best day today. Dr Pribil (the neurosurgeon) thought it best to operate to remove a hematoma (clot) from the area of tumor removal. The procedure went well and he was pleased with the lack of any excessive pressure. All the structures appeared very well perfused (getting blood). However, her blood gases showed some lower oxygen levels that concerned Dr. Pribil. The ICU staff made some adjustments and improved the situation. The greatest concern now is Lin is not awake. She is not on any sedation; her brain is just not ready to wake. She has always been a late sleeper and those of you that know her, know she does things on her schedule!!! So be it. I have come to realize that she is in one of the best medical centers in the country and will recover at her pace in spite of what we may desire. Now that the hematoma is out and all of the various parameters are being addressed, the part of her brain that is “sleeping” will heal and she will wake when that section is healed enough.
If you feel so inclined send me your emails and I will save them for Lin to read when she is able. Bev continues to stay with me and we have been holding each other up throughout this. She remains part of my strength. She does not plan to leave until she can “talk to my Mama”. Thanks for all your thoughts, prayers and comments. I look at them all from time to time and they help greatly. From a fatigued Houston TX we say THANK YOU.
The saga continues
Feb 18, 2008
Lin is still not awake. The Doctors have said that brain swelling maximizes at 4 to 7 days post-op. She is now on the 5th day. We all hope that her brain swelling will begin to subside and she will wake up in the next few days. All of her vitals are within acceptable limits with a few exceptions. Her platelets are on the low side and this just aggravates things. Appropriate medications have been adjusted to address this. I plan on donating platelets as soon as I can, if not for Lin then for somebody and to please the gods of healing. The doctor’s most serious concern is Lin’s lungs; they are not performing as well as needed for optimal healing. While the gross numbers are on the low side of acceptable, it remains a serious concern. She is on a bed that shifts from side to side to minimize the collection of secretions in any one place, allowing for Lin to cough some of it out as well as facilitating suctioning. Lin is getting nourishment through a nasal gastric tube and much to our surprise, she has gas. We know that part works.
Bev and I continue to remain optimistic. She is staying with me until Thursday. It has been a lot harder then we first thought. The really important things about Lin remain intact. We have a long road ahead and intend to meet those challenges with resolve and humor. I believe we will prevail with the help of our maker and the support of all our friends.
And continues
Feb 21, 2008
The news today is met with some trepidation. The doctor called this morning, he said it is time to remove the Endotracheal (ET) tube and replace with a tracheotomy. ET tubes are not intended to be in for much more then a week. The risk of infection and permanent scarring increases after that time. The same goes for her feeding tube, that will also be removed and place directly in her stomach. All of these procedures are intended to reduce potential risks and increase oxygenation and nutrition.
One of the drains from the tumor site was removed yesterday. This drain was no longer needed as the most recent CAT scan indicated the area was healing as expected. We saw this has a good sign. Hopefully today’s procedures will continue the improvements, albeit small ones. We’ll take what we can. I was reminded by a dear friend that this is not a sprint but a marathon.
Thanks to all of you that have written emails and sent good wishes. I take each day’s correspondence to the hospital and read them to Lin. I really appreciate them; some have made me laugh and others tear up. Thank you!!!!
My dear step-daughter must return home today. I will miss her company. She has been a great help text-messaging and making phone calls to family etc. She will continue to help in that way from MD. Thanks Bev, you’re the best.
A few short steps on a long journey
Feb 23, 2008
Lin is not yet awake. She is making a little progress. Lin moves her arms and legs spontaneously and will purposely react to painful stimuli. This is an improvement from previous days. The doctors have replaced the ET tube (in the mouth) with a tracheostomy (yes, she has a hole in her throat). This will allow better control of breathing and will greatly increase comfort while reducing the risk of infection. Her feeding tube will be taken care of on Monday. According to the staff she is stabilizing. Each day the various teams come in and make adjustment to her care. Her “numbers” continue to improve and the wild swings are now minor little blips. All of this is good and a step in the right direction. How far Lin will come back and when is unknown. While science can accomplish many things, the knowledge of the brain is still somewhat mysterious. I can only hope that with these improvements, healing will accelerate and recovery will start in earnest. I have started conversations with the Hospital about the next step. I am not sure what, where etc. that will be. I will be discussing that with her neurosurgeon. Until then Lin and I are blessed with good family, friends, weather and a terrific medical center.
Thanks for everyone’s emails, phone calls, thoughts and prayers, they have been very helpful for me and Lin. I wish I could give each of you a big hug and say thank you in person. Soon!!
More small steps
Feb 25, 2008
Today we made some progress. Lin continues to stabilize, in that all the numbers are within the appropriate limits. Her blood sugar remains a little erratic and the staff is adjusting the meds. It seems the Decadron (reduces swelling in the brain) plays havoc with blood sugar. It’s a matter of coming up with the correct dose and timing.
Lin opens her right eye on her own and is starting to respond to my voice. I got a hand squeeze which really made my day (can we say tears, little ones). As I talked she would focus on my voice, I could almost see a smile in her eye. She is moving around a lot on her own which is an improvement from before. I anticipate even more tomorrow. We shall see. Each day is better then the last and tomorrow will better then today.
The trach is functioning very well and the feeding tube was placed today. All of this is temporary. As Lin continues to wake up she ca be weaned off of them. She looks 100% better without all the tubes around her face. Dr. Pribil is pleased with her progress and has ordered some PT to help maintain muscle tone. I would expect to be discussing Lin’s rehab sometime this week.
Thanks for your emails, phone calls, thoughts and prayers. I appreciate the multiple offers to come down and be with me and Lin. I am doing well and keeping up with a good diet, exercise and rest cycle. Long motorcycle rides are my meditation (weather here has been great – 80 today .. Duane hates me tee hee!)
A good day and some more procedures
Feb 27, 2008
Today was very good and somewhat humbling. I got 3 kisses and plenty of looks, squeezes and head turns. She remains very “sleepy”, awake for maybe 10-15 minutes out of an hour. As I said before, today was better then yesterday; tomorrow will be better still. Now for the humbling part; Lin will have another surgical procedure. Lin currently has a tube into the ventricles of the upper part of the brain (it’s only good for about 10 – 14 days). The body produces about 1 qt of cerebrospinal fluid each day and absorbs/drains the same amount through various pores and drains. When the brain is injured or surgically “messed with” the natural drainage can be interrupted. Sometimes it never returns to it pre surgical state. In order to deal with that, a shunt can be placed from the ventricles to the abdominal compartment. People live with these shunts for 10-15 years or more without complications. It’s one of those things that come with the territory. This will probably happen on Friday.
Lin’s slow recovery stems from the insult on her cerebellum, particularly on the left side. As stated in previous postings her left has been slower to respond then the right. As the swelling continues to decrease, function of the cerebellum will increase. During surgery, a blood vessel in that area had do be clamped. The tumor was attached to it and clamping was unavoidable. This has led to some damage to the cerebellum and slowed Lin’s recovery. Dr Pribil is sure that the function of her left side will improve dramatically over time and as the swelling continues to go down. Couple that with continued treatment and therapy, Lin will be walking, talking and know what shut-up means (not that she’ll listen to me). All that will take time.
Another surgery finished
Feb 29, 2008
Lin has just come out of a 2 hour procedure to place a ventriculoperitoneal shunt to control the fluid in and around her brain. This replaces the temporary drain that was placed shortly after the first surgery. She came through this procedure without incident and was just starting to wake up when I saw her. She will most likely return to her previous state of continued improvement in about a day. Just prior to the procedure, Dr. Pribil had Lin moving both lower extremities. I got her to open both eyes just after: she continues to improve even with this latest procedure. Dr. Pribil has reduced some of her meds as the swelling of her brain continues to go down.
We still have a very long road to recovery. Each day brings improvement. When, where and how much is left up someone way above my rank. The Dr. strongly believe Lin will have a good outcome, it’s just going to take time.
Update, Lin progresses
Mar 3, 2008
Lin has made more progress since my last posting. She had a short plateau after the shunt was placed and is now caught up and surpassed the levels achieved before the shunt. She is able to open her eyes, move her fingers and toes on command, the right side better then the left. She has been breathing on her own for the last three days. She is still fighting an infection in her lungs, but that seems to be well under control with therapy and antibiotics. The ICU team is ready to send her to another facility. Dr. Pribil is not quite ready for that. He is suggesting a step-down unit within the St Luke’s system. He wins. I am going to meet with all the health care team so everyone is on the same sheet of music. Basically, the ICU care has brought Lin to a level where their area of expertise ceases to be of continuing benefit. Lin’s still needs advanced care. That care can be better tailored to Lin’s specific needs by the step-down unit and later at an acute care rehabilitation hospital.
I remain very optimistic about Lin’s eventual recovery. Her most recent scans indicate continued healing and reduction in swelling. However, she has a long road ahead of her. I have described this has taking small steps each day. Lin is climbing the Empire State Building and we find ourselves on the first floor. We may be looking at a year or so before we can say Lin’s has recovered from this ordeal.
Some of you have asked when Lin can get cards and other things. She can get all the cards you can send. Please send all the cards (and Emails) to me at our Livingston address. I will make sure she gets them posted in her room. The ICU does not allow flowers or food in the unit. If this changes when she moves to the next unit, I will let everyone know.
On a less serious front, Duane came by to visit with me for a day. He was able to get a delivery in the Houston area. We spent the day checking up on Lin, eating the wrong kinds of food and killing a few brain cells during the NASCAR race. The visit was a well needed respite for me. Thanks Duane.
Once again, thank you for all your prayers, emails, phone calls etc. They help me a lot. Those of you that know Lin and I in a personal way, know that Lin is my best friend as well as my soul mate. I miss her banter, fussing and advice.
Lin has been moved to a LTAC (Long Term Acute Care) Hospital here in Houston
Mar 6, 2008
The doctors have met and all were in agreement to send Lin to Kindred Hospital in Houston, a few blocks from St Luke’s. The primary goal of Kindred is to remove all the medical impediments to her rehabilitation and eventual recovery. She remains sleepy but improves each day, albeit slowly. She will have to have the trach and feeding tube removed when her body is ready. This requires her to be able to sit up for at least four hours a day, swallow and breathe without any supplemental O2. During her stay she will be evaluated by physical, respiratory and dietary therapy among others. Each will add to her plan of therapy and begin to accelerate her recovery. I have seen some improvements 24 hours after her transfer. This includes some very rudimentary communication via hand squeezes and holding up fingers. It is not consistent enough to really help me communicate effectually yet, but I believe that will happen soon. Lin’s slow recovery is hallmarked by some body movements that are unusual. Head swaying and hand movement that are mixed with purpose and non-purpose that I am told are not unusual for someone with a brain injury. It shows the brain attempting to restore function.
I have made arrangements for at least another month here. That’s probably just a start, we’ll see. Lin can receive stuff at this new facility. However, I’m going to ask for cards only for now. Please send them via our Livingston Address. If don’t have it, email me. Other items would be appreciated when Lin’s can truly enjoy them.
If Lin continues to improve like I’m sure she will, we could be in MD in August for the new baby. We really can’t predict that as of now. Thanks for all of your good thoughts, prayers etc.
We can communicate!!!
Mar 7, 2008
2 days at the LTAC and we are makings good progress. Lin is awake more now then asleep. She can nod her head yes and mouth words. (no speech until the trach is removed, more work before that). It seems that the predicted brain swelling continues to reduce and allow Lin to do more. Each day seems to bring another small thing. It will take time and the biggest challenges are still ahead. Getting the brain back to functioning is one thing, getting the body back to strength and coordination is another and probably the longer challenge. No matter, I got kisses, hugs, hand waves and some persistent requests/complaints. Lin was too hot and she wanted more ice chips. Just can’t please her. She’ll be wanting “COPS©” next.
I made contact with some friends from Beach Harbor and it was really nice to hear from them. One is fighting her own battle with cancer. Her name is Marcella, please remember her in your prayers. Some of you know about Mike, My youngest daughter’s boyfriend. He too is fighting the good fight, please remember him also. His story can be found at: http://www.caringbridge.org/visit/michaelschwink. Thanks for caring.
The double edge of everything
Mar 9, 2008
Lin is now awake more during the day than she is asleep. Still very weak but able to let me know when things are bothering her. It’s tough now because she is also aware of her situation more now than before. “With every medicine there is a little bit of poison” As things continue to improve and wake up, all those things that we take for granted become major issues. Itchy skin, a feeling of not be able to get enough air amongst other things. Couple that with being unable to communicate in a way that she is used to = frustration, both for her and for me. Y’all know I’m supposed to fix everything and Lin has all the patience… I am reminded from a dear friend that this is a marathon and not a sprint. I never liked any kind of running, so I’m gonna walk – with Lin at her pace. I am encouraged with her progress no matter how little. The last few days have been eventful if not trying, mostly for Lin. Monday she gets her chair and the “get out of bed” man will be after her. As she increases her time sitting, she will gain strength, increase immunity, improve breathing, reduce swelling and start to gain muscle mass.
A lot of folks have asked me if they can do anything… yes they can… send your email to Lin, talk to her not me (or leave a message on the website). And send cards to our Livingston address. I get my mail every week at the campground I am staying at in Houston.
Speaking of email, I bought a webcam and have been video/chatting with the Bev and the grandkids. It’s been great. Lin seems to enjoy it as well. So if you’re techno-savvy enough. Let me know your ID etc. and we can give it a try.
Thanks for listening and thanks for caring. Yooouuusse guys are the best.
Good week starting
Mar 12, 2008
Well, we have made some progress. Adjustments to meds have reduced some of the frustration Lin was having but made her a little groggy. More fine tuning is needed and will happen as days go by. The PT crew had Lin sitting on the side of the bed for about 10 minutes (yeahhhh!). Good for the lungs, spirit etc. She tolerated it well, no passing out and no blood pressure drops. Strength continues to improve and we are getting the yes/no communication thing down to a pretty good science. All in all this is starting to be a good week. Thank you for all your support.
Lin McNicol 8/24/45 – 3/13/08 “Do Not Cry For Me”
Mar 13, 2008
Lin has moved on, we are left to remember her and miss her. She had read this poem years ago. She told me that it really summed up her feelings. She insisted on no funeral or a having a bunch of folks weeping away over her. She wanted to have everyone at a bar remembering all the good things and celebrating a life worth living. So that is what I’m going to do. I will be returning to Maryland and will set a date for the festivities. Kapish?
Do not cry for me.
I am still here,
You may not be able to see me,
But I am,
I am here in spirit, not in person.
Do laugh for me.
I know I am not here,
But laughing will help ease the pain.
Laughing will let you see me,
See me in the good time.
Do not grieve for me.
You may think I’m gone,
But I’m not.
I am still here,
Here in your heart and memories.
Be happy for me,
Please.
We had the good times together,
And the bad,
But life was fun – still is fun,
And it will go on and on.
Be happy and laugh.
Just remember the times we shared,
And laugh.
See me laughing with you.
Please be happy for me,
Please laugh for me,
But please remember not to cry for me…
I will miss my best friend…
Bless you all, Stuart