A history of disaster: AKA one American family's trip through American health care and family struggle
I posted this a while back but it just seemed so raw and on edge that I removed it and relegated it to draft status. After the CEO shooting in NYC this month, I have reconsidered and am posting this again. Outsiders to the US healthcare system do not understand the hoops one must jump through when dealing with all the nuances of healthcare in the US.
Please note: These emails are "raw" and do not reflect my best self as a writer or a person. When dealing with stress, sleep deprivation, and general desperation, it is sometimes difficult to spell correctly or think coherently....
NOVEMBER, 2017 email to a childhood friend of Lance: Overview
At 04:00 Wednesday morning, 11/08/2017, Lance woke me to take a tub bath. We have a deep garden tub that is great for long soaks. With the tub filled, I started a load of laundry and sat down to read on the couch in the library. I heard a staccato of screams from the bathroom. I thought Lance had stepped on something or cut himself shaving perhaps. I didn't go into the bath until I heard a clatter from the shelving next to the tub. I went into the bathroom to check on him. I saw Lance in a full tub of water having a seizure. His legs were outstretched over the end of the tub (hitting the shelving), his hands at his side, and his head was bobbing up and down in the water. His muscles were stiff, rigidly locked, yet he was thrashing violently. I could see froth at the mouth even as he bounced going in and out of the water.
I pulled the plug on the bathtub. I lifted his head trying to keep it clear of the water as it drained. I tried to clear his breathing passage. I couldn't move his head sideways so I kept two fingers moving in his mouth trying clear the froth and any bath water. (I had manged to get my hand in between his teeth to keep his mouth open.) As I cupped his neck and shoulder, I was trying to lift him from the water but he was jerking violently and he was so heavy. I couldn't get him on his side because of his rigid, locked position in the tub.
When the water had lowered, I grabbed a towel and bundled it under his head to keep his head from banging. I feared he might have enough water in him to drown so I ran from the room and began screaming to get the children to help. Our bathroom is off the master bedroom. I had to run into the adjoining room, a large open living space. I returned within seconds having heard Peter roused.
The children came rushing in and we set about trying to move him from the tub even as he thrashed. We managed to get him out of the tub, onto the floor, and then on his side so I could make certain any bath water he had in him came out. It was difficult because he had frozen, locked into that position from being in the bath: his legs having been over the end of the tub,and bent down at the waist. I remember trying to hit him on the upper back to force out water and kept clearing his mouth. He was still stiffly bent at the waist.
When the seizure had eased, and his body began to relax, we used towels and a housecoat to cover him. It took the three of us to slip a pair of shorts onto his unconscious body. He stayed tense for a long time. I had told Peter to call 911 once we had gotten him from the tub. I called 911 again after a while to restate the need for transport. He stayed unconscious but breathing until after the paramedics arrived. Only then did he come to, startled and scared. He remained in a postictal state for nearly an hour after the seizure ended.
A CT scan in the ER showed a 4+cm mass located behind his right eye. An MRI defined the image and revealed a tumor larger than the 2 inches indicated on the initial CT scan. The neurosurgeon said it looked like a Meningioma saying it appeared to have grown from the skull inwards. The directionality had obstructed its size on the original scan. The doctor asked about any symptoms and after my lengthy answer, he said that we need to act as soon as possible to remove it surgically if the swelling could not be reduced.
Lance was admitted Wednesday morning. Hospitalized, he rapidly begun to lose his short term memory. His long term memories became jumbled as the hours passed. He became more agitated and his personality changed. After his symptoms escalated and medicine failed to reduce the swelling in the brain, Lance had surgery on Friday 11/10.
Lance was in the surgical suite more than 12 hours. The doctor removed a section of his skull from a half inch behind his hairline down to his brow ridge. They removed as much of the tumor as he could; at this point they believe they have gotten all of it. (Additional testing is required.) The bone was replaced and attached with steel plates. The tumor was sent for pathology tests and decisions about his future treatment will be made after the surgical follow up on 10/28.
Lance has had two previous brain surgeries for two non cancerous pituitary tumors with a 6 week round of daily radiation after the second surgery. His pituitary function now destroyed, he is on a full hormone replacement regimen for life. Unlike those tumors, this tumor is located behind his right brow area. The neurosurgeon indicated that his previous surgeries and particularly his radiation treatment may have played into the development of this tumor.
After a 6 day stay in the hospital he was sent home to recover. He is doing very well considering what he has been through. He has begun a series of neurological and physical assessments and rehabilitation programs. He will remain at home for the next few weeks to get his strength and stamina back to normal.
11/15/2017 email to his father:
He tires very easily. He is sleeping as he needs and when he sleeps I also try to sleep.
He gets unsteady when tired and needs to stay seated but he can walk alone, though carefully. The fluid on his brain makes him light headed.
His eyes strain easily so he can't read or do crosswords without some problems. His vision is clear.
As for his memory, he is improving and can hold conversations. He sounds great when he is alert. His short term memory is pretty good, but he has a hard time staying focused on the task at hand. He goes through sundowning periods as his fatigue grows throughout his day and can become quite adamant, agitated, and confused. Because his sleep schedule is so broken his end of the day may not occur just at night. The longer he is in a conversation, the more stimulated he becomes, the more fatigue he experiences and he begins to get agitated, sometimes confused. After Jane's visit yesterday he was worn out and slept uninterrupted the longest he's slept so far, four hours.
He is very emotionally charged right now. His feelings are right on the surface and he doesn't seem to be able to control them as much. He also realizes the full extent of his injury and is highly reflective and with that, apologetic.
The swelling remains but is greatly reduced. His eyes are both open now. He gets woozy as the fluid shifts. The only bruising on the face is in his raccoon eyes. He does have areas on his neck which are a bright red.
He looks better than he did post op and since he's been home.
11/23/2017 email to his sister
Please make your mother understand why Lance would prefer to send email updates and initiate the occasional call.
1. We don't answer the phone during meals.
2. We don't answer the phone when we have guests.
3. We don't rush to get to the phone when we are in the bathroom, watching something, or doing something else.
4. We don't answer the phone when we are on the phone with someone else. The other day we were on speakerphone with USPS trying to getting all of Lance's paperwork in order. This was a lengthy process. Jane kept calling and calling and the call waiting beep kept going off while we were trying to navigate the options menu, and again as we were talking to the reps and again as we waited for the reps to confer with their bosses and update the info. We only have call waiting because it's free and every blue moon we may need to accept an anticipated call such as a doctor's call back.
5. Jane goes on and on when leaving a message. Instead of time and day and call me, it's a lengthy message until the tone beeps. Lance never listens to these messages, he just calls her back. This adds to confusion with her thinking he has already heard something. I have had to reduce the message length because her calls wake us up as she drones on.
6. Jane can't hear a lot of what is said on the phone because she doesn't hear well. There is a lot of miscommunication and repetition.
7. Lance and I sleep at all hours on the sofa or in bed as we need. We've had to start unplugging the phone during these naps because we both need the sleep. See #5.
8. We don't use cell phones on a regular basis. We have Go Phones which cost about 8$ a month because we buy minutes. Text messages are not something we use with any regularity. Basically, we see cell phones as an intrusion and only for emergency use, such as Lance's recent hospitalization.
9. Lance hates talking on the phone. Consider how seldom he has called. Emails have always been his preferred method. Emails allow him to email when it is convenient for him, especially considering his decades long night work schedule. Further, emails provide a clear exchange of information.
We are not being rude to Jane. We are doing what Lance needs to recuperate. We are acting no differently than we always have, abiding by established rules of etiquette and decorum we have set to work with our home life and unusual schedule.
Thank you,
Bonnie
11/29/2017 EMAIL to his immediate supervisor
RE: Michael LANCE Ash - return to work
29 November, 2017
Hi Tiffany,
Thank you for inquiring about Lance's recovery. Please excuse my delay in responding to your email over the weekend. I waited to reply until Lance had completed a follow up visit with his neurosurgeon yesterday. In addition to providing an update about his health and return to work, I also need to make a request about his payroll and leave.
RETURN TO WORK
Lance went to the neurosurgeon's yesterday to have more than 30 staples removed from his head. The scar is over 9 inches long and is healing well. We were able to discuss his return to work and, at this time, Lance will remain out of work.
The neurosurgeon will see him again December 14, 2017, for another evaluation to assess his status for returning to work. Because he continues with physical therapy through December and has more appointments for testing with a neurologist to assess his brain function through an EEG and additional tests, the doctors need more time to clear him to return to work.
I have attached a doctor's note which explains that an assessment to return to work will be performed on December 14 by his neurosurgeon, Neil Woodall, MD. Hopefully, by the December 14 appointment, we will have a better idea about his overall status and be able to set a goal for his return to work.
FMLA
We have applied for an extension for the FMLA paperwork. Unfortunately, the doctors require additional testing to assess his long term status because the FMLA paperwork requests specific details about his long term needs.
HEALTH UPDATE
He continues to improve daily. He continues to build his strength and stamina. He has been cleared for light physical exercise and gradually increases his daily regimen to help him regain his strength. His stamina has yet to return. Exhaustion comes easily and his return to a regular sleep schedule is far off. Some swelling remains and his right eye is affected by this. However, he is able to read but only for a short period before the eye becomes strained. He has passed and completed his occupational therapy rehabilitation. He will have a speech rehabilitation assessment next week. His physical therapy rehabilitation sessions will continue through December.
Because of the seizure, he will not be able to drive for six months. I will be driving him to work each shift for the 130 mile round trip. I do not look forward to what will be my 260 mile daily commute as I drive to and fro each way, twice a day. But it is necessary, he must work to maintain his health insurance.
REQUEST re. PAYROLL.
We have received Lance's pay stub for the December 01, 2017, pay date. I am pleased that he has sick leave remaining. I am grateful that you have ensured his pay remains in place uninterrupted.
From his payroll stub I noticed that Lance has available annual leave of 30 hours for 2017. When his coworker Mitch Maxey came over to visit, we discussed Lance's leave options. As a former union steward, Mitch is able to offer advice and suggested that Lance use his 2017 annual leave balance before the end of the year. This would allow Lance to retain more sick leave in the long term.
Instead of using 80 hours of sick leave for the December 15, 2017, pay date, can Lance use 50 hours of sick leave and then 30 hours of his annual leave balance for the 80 hour work period? To make this a formal request, I have attached a copy of the Request for Absence form. The copy is a signed request to use annual leave of 30 hours for the period of 12/3/17 from 20:50 (8:30 pm) through 12/7 03:00 (3 am).
Once approved, his 12/15/2017 payroll would be for 30 hours of annual leave and 50 hours of sick leave for a total of 80 hours pay. Thank you for considering this option for his next pay period.
I appreciate your continued diligence in following through as both Lance's supervisor and friend. Please let everyone in the crew know how he is improving. He is eager to return to a normal schedule and normal life as soon as he is able. I can not adequately express how grateful I am that you have helped make this very stressful time much better and helped allay my concerns about his health insurance being paid.
You are welcome to forward this email to Human Resources, management, and those who need to be notified about Lance's work status and requests.
11/20/2017 email to Lance's former (retired) co worker
Maureen,
It was such a pleasure to finally meet you. Your flowers have brightened my week. Lance has been receiving visitors all week but your visit was the highlight. Thank you for bringing Laura along also.
He is making such great improvements. He is back up to speed in crosswords puzzle races with me and he is reading, drawing, and playing guitar. Making him take it easy is the hardest part of his recovery at the point, but his body steps in to remind him with frequent naps and a lack of strength. I am so pleased to have him back intellectually and we are taking time for long conversations. He is already talking about returning to work and resuming a normal schedule, but your visit has made him wistful of the old days in Athens with the old crew.
Thank you again for visiting.
Love,
Bonnie
12/14/2017 email to a friend of Lance
My comfort is knowing the doctor is limiting him to a regular 5-day 40 hr week when they have to work 6 days a week and up to 12 hours a day. The doctor also wrote that Lance may need to take some sick leave along the way in readjusting. I'll be driving him to Duluth and back each night so I can only relax knowing he can sleep during the 1 -1&1/2 hour trip each way. His shift boss just emailed saying she and all the ladies on the crew will take care of him for me. They have been so sweet during all of this.
12/13/2017 - forwarded email from Lance to his friend Maureen
I'll be able to tell you more after tomorrow. I go to see the surgeon on the 14th. Everything is looking good so far. I'm hoping he'll clear me to go back to work starting next week. We went to the neurologist on Monday and had them fill out FMLA paperwork, which maybe will get approved. I'll let you know what we find out. Lance
On Mon, Dec 11, 2017 at 7:41 PM, Maureen Saunders <pathlightministries@gmail.com> wrote:
Hi Lance, Just checking in on you again. Hopefully you're still doing well. Just wanted you to know I was thinking about you and Bonnie, Love, Maureen
Sent from my iPhone
> On Dec 5, 2017, at 12:29 PM, Lance Ash . <mxxxxxx@xxxxxxxxxxm> wrote:
>
> Got the staples out (over 30 of them!) and since then I've been sleeping much easier. Went to occupational therapy evaluation and passed it, same thing with speech therapy evaluation--so that's two things I don't have to follow up with. The physical therapy guy wants me to come back a couple of times. But he cleared me to start doing some light exercise, so I started doing my aerobics again as well as some weight-lifting. That has really been the key. I've started feeling much better now that I can work out again. When I started I could only do 5 minutes of aerobics, but I've worked my way up to 16. My goal is 30 a day. I've got to get strong enough to get back to work. The swelling around my right eye has gone down considerably and I can read and draw without too much trouble. There is a possibility that the anti-seizure medication I've been taking has the side-effect of making me very mellow. I just don't feel like getting upset about anything, so that's a novelty for me.
> I sent a couple of emails to Virginia and she says she's trying to find something for me, but doesn't hold out much hope. But, it's only a few months of having to be chauffeured around, so I can deal with it.
> Hope everything is going OK with you, Retired Person.
> love, Lance
December 14, 2017 email to Lance's sister
Hi Kat,
Lance will be going back to ATL; I'll be driving him each night. He had a silly idea about Jane driving some but I think I've made him understand that she shouldn't be driving him: her age, at night, with her eye problems. Besides, doesn't she have eye surgery scheduled for January? Last month she said something about seeing double at times. Besides I know him: he would go crazy not being able to listen to the music he wants, or drive without conversation which he prefers, and she drives so slowly he would get really frustrated. He thought he was trying to take a burden off of me, but like I told him, I can adjust to anything, I live with him, don't I? It'll all work out. It's into May which isn't too long considering all the years we've been married.
The neurosurgeon sees the seizure as a result of the tumor. He says it's only to let the brain settle down that he's on the anti-seizure medicine for long. His EEG came back normal, BTW.
When he first got transferred to ATL he considered car pooling for the briefest of moments. He has to have everything just so, so that idea was quickly dismissed. For years when we drive together, I'll drive and he DJs. That way he can set the mood and it allows him to set the conversation too. Jane would drive him nuts with her banter and he would drive her crazy with his hard core death metal.
Bonnie
June 13, 2018 email
Earlier this year Lance began having "spells" where he'd feel weird and have phantom smells. I reported the symptoms and the doctor increased his anti seizure medicine and pushed up his EEG. We went back to Lance's neurologist yesterday for a three month check. We were told that his EEG is normal, however, that reflects only a moment in time, and could not rule out seizure potential. They did the light stimulus trigger during the EEG, which some people succumb to, but that also elicited no response. Again, there is nothing conclusive about that.
Since his medicine increase and his EEG, he has had one "spell" about two weeks ago. He has been more tired and sleeping more on the weekends. In an attempt to counter the fatigue, he has weened himself off caffeine during the work week. This has helped him sleep better between shifts and aided his sleeping continuously, with fewer interruptions. He has also continued to practice daily meditation. This aids in his relaxation overall and reduces tension. When his neurologist was told about the meditation, they wholeheartedly backed the method and emphasized its potential for stress reduction.
When he had his latest spell a couple of weeks ago, I made him return to bed and he slept easily for several more few hours. After discussing these spells with the doctor, they are confident that he has been experiencing pre seizure activity defined as prodromal stage (1st stage) and second stage, aura. After aura, which involves smells, a seizure may follow. If a person prone to seizures removes himself from stimuli and avoids actions that may lead to a seizure, a seizure may possibly be avoided.
Fatigue and stress are normal triggers for increased seizure potential. The doctor stressed the importance of increasing his rest and encouraged the continued use of meditation since he seems to be achieving positive stress reduction. (Stress can be mental and physical. Meditation helps both types of stress.) Because he has Addison's Disease due to the radiation, he is on medicine to replace what the body can no longer do for itself when experiencing physical stress. In other words, his medicine maintains a constant normal level, but when the body needs help. there is nothing for him to draw upon. As a result, he becomes more fatigued and his potential for seizure increases. He also has history of three brain operations and six weeks of daily radiation to the brain. Combined: the surgeries, radiation, Addison's Disease, and a previous history of seizure leaves him more susceptible to future seizures.
If the spells become more common, the doctor will set up a portable 72 hour monitor to record activity to confirm what they are confident of, the increased likelihood of seizure.
Otherwise, he is doing well and has been enjoying his writing, drawing, and music.
10/10/2019 email
Lance met with his neurosurgeon today to discuss his most recent MRI.
The MRI indicated two areas of tumor growth in the area where his most recent tumor was removed.
His first two surgeries 10 and 20 years ago were pituitary tumors. It was highly unusual that a pituitary tumor would regrow, so he was given a 6 week regimen of daily radiation treatment after the second surgery.
At the time of his third operation in 2017, he was diagnosed with a Grade 1 meningioma. Simply, it is a tumor that grows from the skull casing into the brain. It is different from the pituitary tumor and identifiable on scans due to its growth pattern. A Grade 1 meningioma is usually the least problematic.
After his surgical followup MRI in 2018, there was a small area of residual tumor mass from the tumor removal. The way that the nerves around the optic nerve had become enmeshed with the tumor accounted for the MRI findings at that time. This mass has since ceased to exist.
Unfortunately, it appears that he has developed two new meningiomas unrelated to the 2018 MRI. The largest is about half an inch in size.
Because of the rapid rate of return and growth, waiting and monitoring is not advised. There are two routes for treatment remaining: regular surgery (like the last time) or radiosurgery. Because of the invasive nature of regular surgery, Lance has opted for radiosurgery which uses a direct beam of radiation in an attempt to halt the spread of the tumors. This procedure will allow him some time to see if the tumors persist. If they persist, he will either undergo additional radiation or surgery dependent upon additional MRIs.
Tomorrow he has an appointment with his neurologist. Next Thursday, 10/17, he meets with the surgeon who will evaluate his condition and determine his candidacy for radiosurgery. Next Friday, 10/18, he will meet with the radiation oncologist who works with the radio-surgeon to determine his radiation dosage and other factors.
Only after next Friday will we have any idea about what happens next.
10/10/2019 email to his sister
Kat,
Regarding the email I just sent, I included Jane (jxxxxxxxxxxx@xxxxxxx) in the BCC. I need for you to get ahead of this. Jane doesn't seem to check her email often but I thought a written account would help her retain the information. Please handle informing her, encouraging her to read the email with you, and have her ask questions of you. She trusts your medical intelligence and strength. Further, the email will serve to provide concrete information she can refer to.
As for Lance, he is more run down than usual which may just be the job. He's also fighting off a cold so he's sleeping a lot more, which is what he's doing right now. He took the night off to deal with sleep loss due to the medical appointments today and tomorrow. BTW, the return to the Athens mail facility fell through so he's stuck in Atlanta.
Thank you,
Bonnie
At this point, Lance's mother had been definitively been diagnosed with dementia, something I had suspected for years. Kat is a surgical nurse and her parents go-to person on all matters medical.
10/19/2019 follow up email to his sister
Kat,
Here's what I didn't include, or more specifically, what I skimmed over in the email.
Lance's neurosurgeon wanted him to have another invasive surgery but presented both options. The doctor ruled out a wait and see approach completely. The crux of his push for invasive surgery rested on the quick return and rapid growth, and to a smaller extent the fact that we are dealing with two masses.
The primary benefit with the invasive surgery is that it is removed and the type of tumors can be determined. It allows a view of the surrounding tissue. But we also know all the risks and extended recovery required for such a comprehensive approach. That alone made Lance decide to move toward radiosurgery.
Lance had his MRI August 28. One of the questions we want answered is the growth that has occurred since the last MRI.
Further, there is the underlying concern that the meningioma was most likely caused by the 6 weeks of daily radiation after his second surgery. This is the best theory. IF that is the presumptive cause and we have a return of tumor growth then where does additional radiation treatment leave him.
In addition, the radiosurgery is designed to halt, not shrink, the tumors. Necrosis of surrounding tissue is a risk. How involved are his eyes this time? What are the other areas at risk?
We have a lot of questions and I think the next step is determining the growth since the Aug 28 MRI. We are not rushing but we are not delaying unduly either.
This information may be too much for Jane to process or cope with. She is already panicking. I think it's too much for Doyle to understand the finer details but he is probably more emotionally fit.
I hope this isn't too much to take in. However, since you are the go-to person for Jane and Doyle on all things medical, I thought you should know more and also be aware of of our concerns about dissemination of details.
Honestly, we are worried more than ever before: even with Lance's rapid memory decline post seizure for the days leading up to the 2018 surgery and recovery the weeks following. This (return and growth) seems like too much, too fast.
I'll let you know when we know more. Excuse me, I've got to be up at 4 AM to get out the door by 6:15 AM.
Later,
Bonnie
October, 2019 email
Lance saw the neurosurgeon Thursday and the radiation oncologist today.
The long and short of it is as follows:
Bad news: It's not emergency surgery, so we can be turned away because we can't pay for it.
The long and short of it is as follows:
Lance has no symptoms now.
This is the time to get the radiation done.
Otherwise, as it grows and begins to cause problems, it's invasive surgery like last time. That was $250,000+ not the $20,000.00* estimate for this surgery for one of the doctors and the facility fees. *We are waiting to find out what the other doctor will be charging.
The facts are:
We pay $315.00 every two weeks for our share of health insurance. That's $630.00 a month for a 13 month year which works out to slightly less than our mortgage payments.
We met our family deductibles by February. But we still have copays, percentages, and out of pocket costs not covered.
We have 18 medicines a month which have copays or are out of pocket completely.
We have blood work 6-9 times a year which has percentages and copays.
We have doctor's appointments every other month, including specialists. We have had MRIs, CAT scans, and Xrays this year which require percentages.
Already this year, I skipped a follow up out patient procedure post hospitalization, post transfusion because we couldn't afford it. Don't get me started on the heart procedure my cardiologist wants to do that I've put off for years now.
We are still paying medical bills and have payment plans for some and some are just waiting to be paid. In addition, we are still paying off credit cards from his last surgery and use them to keep up some payment plans. We pay just enough credit card debt so we can use the balance to keep the bills up to date somewhat. In other words, we don't have any available credit to pay for his procedure upfront.
Lance's radiosurgery falls into the 15% / 85% category.
We pay 15% up front. The insurance pays 85%. That's around $3000.00 we don't have.
The good news is we know which doctors are involved and can say no to non network doctors, so no surprise bills from doctors who aren't preferred providers like my anesthesiologist was earlier this year!!
Bad news: It's not emergency surgery, so we can be turned away because we can't pay for it.
Reality:
We don't have the money. Hell, we don't even have a second car because the other car has needed work we couldn't afford since April. We even cancelled the insurance because we can't pay that.
If we wait until next year, we start over with all new deductibles.
We have drained his retirement twice and are repaying it through a federally mandated loan program.
We can not afford the procedure.
***In the end, we scrounged up the money by doing without some very necessary things, taking out a small personal loan, and using the damned credit card option.
10/28/2019 email to Lance's sister
Kat,
The new MRI on Thursday 10/24/19 showed an increase in the largest tumor from the 08/28/19 MRI.
It grew from 1.4 x1.0 cm to 1.8 x 1.4cm
We are not sharing this information with your parents at this time.
This info is available on his health site through the Piedmont medical system. As for when the doctors will read the report and confer, I can't say.
B
11/12/2019 email
Lance goes for his radiation treatment on Thursday. Unlike his last round of daily radiation for six weeks, this is a single dose treatment. As of today, we have the required prepayment co-pays together so he will be able to get the treatment without delay. He will have follow up appointments for assessment in December and they will probably order more MRIs then or after the first of the year to monitor his progress. Hopefully, this treatment will halt the tumor growth.
His appointment is Thursday morning and it will leave him tired. Hopefully there won't be any other side effects. He begins paid leave on Friday and will return to work 11/26, the day after his 50th birthday. He says he's feeling really old. I think it's mostly stress weighing him down. He has complained of no symptoms outside the fatigue, so his time off will be quite welcome.
11/18/2019 email
Well, the last several days have been a handful. There was a last minute change about Lance's medicines before the radiosurgery. That took a half dozen phone calls to get sorted out and last minute doctor conferences to make certain Lance's Addison's didn't act up. The radiosurgery was painless and amazingly quick. It took longer to wait and then handle the paperwork than the procedure lasted. He's sleeping and resting and doing his art, just enjoying the week off.
Peter was taken to the ER early, early Saturday morning. While prepping for work his heart went wonky (180+bpm) and his blood pressure spiked. The ER doctors determined that he has Atrial Fibrillation, AFib. They kept him for about 6 hours with IV drugs and monitoring. It improved enough that he was sent home for bed rest until he is cleared by a cardiologist later this week. He was in AFib over 30 hours. He's now on a daily blood thinner and an additional medicine that will help with blood pressure and reduce his irregularity.Strangely, the biggest worry was whether he'd keep his job. He took in documentation Saturday and followed up with his manager Monday. The manager gave him a positive response via email and welcomed him back as soon as he is cleared. Hopefully, the doctor will be able to manage him through medicine and the physical stress of his job won't be too much.Reed starts a new job Wednesday and is thrilled not be stuck with minimum wage this time. It's a 33 hour a week job which beats the other job. The holidays will probably mean more hours and she's already been told she'll work Thanksgiving and Black Friday.We had our family Thanksgiving meal Sunday night to accommodate everyone's days off. Shortly after noon, the oven died. Then the power went out for two hours mid day. We still managed to have the meal on time.Reed joked we're under a gypsy curse. Glad we're not superstitious to actually believe that kind of nonsense. But the expression when it rains, it pours seems appropriate given what all we've been through just this year:Our heat pump died and we were without AC for two weeks in July. I was hospitalized needing a blood transfusion. Then later a cracked jaw from a tooth infection. After a medicine change, I had to go to the ER with an anaphylactic reaction. My anemia has now returned. Our second car died. We've had extensive work on the remaining car. The roof started leaking at home and at the studio. The septic field became compromised. I passed on two medical procedures because of costs. Lance had extensive testing, the tumors returned, and his radiation with more testing to follow. Now Peter's AFib. We'll be glad to see the end of all this.But there have been good things too. Peter really likes his new job and his co workers. Peter has joined a great weekly D&D game and made new friends there. He has also written his first D&D campaign based on the book he's been working on. He also had his art work displayed on an online gaming platform run by one of his heroes, Matt Colville. Reed and Quinton are still together. They went to Florida to meet part of his family this summer. After sticking with the half time minimum wage job for over a year, this week she starts a new job with better hours and much better pay. She bought her first car outright- in cash- this March. She has been saving 90% hoping to move in the near future. I've been perfecting my breads, cookies, and cakes and hope to expand on that. Hopefully the new heating element for the oven will be in place by next weekend. I had a small photography show earlier this year. I'm slowly returning to photography as my health and time allows. I also began managing Lance's online artist profile: organizing his video channel, setting up his instagram account, and a basic online profile. Lance continues his unrelenting pursuit of creating art through drawing, painting, writing, and music all the while driving 130 miles daily to work.Thanks for bearing with us through these emails. Hopefully, we'll be able to go back to a basically boring life with our only concerns revolving around being creative weirdos.
April 27, 2020 email
Monday 4/27/2020, Lance was involved in a single car accident. On the way into work tonight Lance was driving on the perimeter. Following behind him was an off duty ambulance returning home from an ER drop off. The ambulance driver observed Lance have a seizure and lose control of the car. The car ended up in the median between the opposite lanes and was stopped by the central post dividers and wires. When Lance came around he was surrounded by EMTs and police officers and he was outside the car. The front driver wheel was broken, the driver window smashed, and apparently he had to leave the vehicle by crawling through the passenger side door.
Lance and I have spoken four times since the accident. He was a little unclear and confused, normal for being in an accident and post seizure. He was walking but had an injury to his left arm and hand. We spoke twice before he was taken to Piedmont Athens Regional ER. When he called a third time several minutes ago from the ER, he was clearer in his thoughts, obviously emotionally distraught and fearful, but able to answer and convey information. The focus of their attention is on head trauma at this point. With his fourth call, he said that he was awaiting CT scan results. His memory lapsed during the call and he went into mild confusion. I will let you know as I receive further information. (His post-radiation MRI was postponed due to the pandemic.) Piedmont Athens Regional has all of his medical history, medicines, and doctor contacts. They are up to date on his existing conditions. This is the best place for him to be.
Work at USPS has been hellish since the pandemic. He has been overworked and tired out. Unfortunately the post office has so ingrained anti sick leave usage in normal circumstances that despite the post office's supposed allowances due to the pandemic, Lance has been conditioned to push himself. He had taken a couple of days off to deal with fatigue and was planning to take more time off. But, as most of you know, fatigue has been his trigger for pre seizure auras. He has not reported any problems; he has had no pre seizure activity in over a year. He has not had a seizure since his last major surgery. I suspect the fatigue has just overwhelmed him and left him vulnerable for a seizure.
I have amended his contact information to include all of his immediate family so hopefully family may request information directly from the hospital. Because of the pandemic, NO ONE may visit the hospital unless seeking medical attention. NO VISITORS including family may visit. Further, according to CDC guidelines, quarantine protocols will be enacted upon his release from the hospital. When he returns home, he and Peter and I will enter a period of 14 day quarantine. He has to assume exposure from the EMTs and hospital personnel and the facility.
As I stated earlier, I will keep you up to date.
Bonnie
April 28, 2020 email
Lance has been admitted to the hospital from the ER. He is in room 5365 at Piedmont Athens Regional.
The earlier CT scan shows swelling at the site of the 4th and 5th tumors.
His neurosurgeon will come by tomorrow and Lance will get an MRI at that time. I spoke to him a short while ago.
He is much more lucid and more emotionally calm.
Bonnie
April 28, 2020 email
Lance, being Lance, wants to get out the hospital ASAP but he did have a good day overall.
His MRI confirmed he has swelling on the brain.
It appears to be localized around the site of the 3rd, 4th, and 5th brain tumors.
That the swelling is centered there is a good indicator that we are dealing with a tumor related issue as opposed to an injury sustained in the accident. (Better the devil you know.)
He has been put on steroids to reduce the swelling by his neurosurgeon. His neurologist saw him today, increased his anti seizure medicine, and added a new anti seizure medicine. The neurosurgeon was so positive with Lance that he took it as a sign he might go home today. When I was able to speak with his day nurse late today, she confirmed the information I have gotten from him. She also said that he will be kept overnight for further observation.
I confirmed with our GP (an internist and a former hospital administrator at Piedmont) that a 14 day quarantine is the best step when Lance returns home because of the corona virus which has the hospital on lock down. His interaction with numerous first responders, the ambulance and crew, the ER ward, and the neuro ward at the hospital increase his exposure from these high risk areas and persons. Further, given that the virus is asymptomatic in some, the quarantine is the best option and the CDC recommended measure. Peter, who lives with us, has filed for a temporary absence from work beginning tomorrow and we hope that his employer is understanding; Peter has no job protections in the best of times.
Lance's left arm is bruised, cut, and bandaged but hasn't proven anything except painful. He is lucid and antsy and impatient so he's basically the normal old Lance, anxious to get back into action. It'll take a lot to get him to slow down and stop overdoing it. He needs time to recover, to get rested. I hope when he returns home I can convince him to slow down and not push himself so hard. He already has his little notebook out writing down things to fret over and remind me about.
If you would like to speak to Lance, you may call him directly in his private room at xxxxxxxxxxxxxx.
Bonnie
May 5, 2020 email
Lance's recovery is progressing well. He continues to show improvement. The doctors have added two new medications for a two week period. The first, a steroid, reduces swelling on his brain. The second, an anticonvulsant, decreases his chance of another seizure. Both medicines have side effects that may affect his recovery. He's had some slight dizziness. He is extremely tired. And while his memory is improving, there remain some issues. However, there is marked improvement. All of these symptoms may be caused by or amplified by these medicines. He is also dealing with the trauma of the accident. While he has no memory of losing control and crashing, the immediate after effects, his postictal confusion, combined with the ramifications of the wreak weigh heavily on him emotionally.
He visits his neurologist next week, Wednesday, 13 May. At that time, we hope to develop a recovery time line. This week he remains on sick leave. Next week is a pre-scheduled vacation week. If cleared, he may return to work as early as Sunday evening, 17 May. He may be granted additional time off or request a liberal absence policy based on the neurologist's findings. Unfortunately, the FMLA process is a burdensome, time consuming undertaking requiring coordination by his doctors who all wish to wet their beaks charging paperwork fees, demanding extra tests, and more appointments. Last time it took three months to finalize. In that time period, USPS refused to pay him for 4 days of absence so he ended up going to work (when he really shouldn't have) fearing the USPS would once again arbitrarily refuse to pay sick leave. So much for common sense and common decency.
He has another MRI scheduled for early June. The neurosurgeon will then determine if Lance needs additional steroids for inflammation. In August, he has his annual physical and also meets with his endocrinologist for additional blood tests.
Transportation remains a problem. The Prius, our only car, was totaled and we are awaiting a small payout for the car. The timeline for that is approximately two weeks away. It will take even longer for us to arrange for another car. We had just paid off the last two and a half years of accrued medical bills thanks to Congress's stimulus check. Sadly, we also just sunk $400 into new tires and spent another $300 on car repairs. Now we are about to undergo another endless round of medical bills. We can not afford a car payment for the near future.
Georgia state law requires that a driver remain seizure free for a 6 month period before getting behind the wheel again. For the next 6 months, I must drive Lance to work. His 130 mile round trip (65 miles one way) will become a 260 mile drive for me every night.
As Lance improves, he is resuming a normal life outside work. His painting and drawing continues during his convalescence though it is often cut short from fatigue. He is trying to resume some routine exercise but even that has been halved and, on some days, exchanged for a walk outside instead. He will need some more time to get his strength back. Hopefully, when the 14 day regimen of the new medicines end, some of the symptoms will abate.
Bonnie
Email exchange between Lance and a friend that he forwarded to me
Thanks again for checking in with him, with us. We appreciate you.
Let me know when you get your test results.
Bonnie
May 14, 2020 email
Lance returned to his neurologist Wednesday and he shows significant improvement over the past weeks. The doctor confirmed that a lot of the problems with sleep, emotions, and unclear thinking were amplified by the steroids regimen he completed Tuesday. As the tapering dose of steroids decreased, he has improved. Unfortunately, if the brain swelling returns, he'll have to go back on steroids.
The doctor has added a second anticonvulsant hoping to prevent more seizures. Despite BCBS covering 70% of the new prescription cost, the 30% we are left to pay is unmanageable. We've applied for financial assistance from the pharmaceutical company. When the hospital prescribed a 14 day regimen at discharge, I was mortified at the cost. It was more than groceries and gas, even more than an August electric bill! And now the doctor is doubling the dosage. She gave us several weeks of free samples for now. We don't hold out much hope for getting financial assistance as we make too much to be considered poor enough and have health & drug insurance. He'll most likely end up on a lesser medicine.
The neurologist said the hospital MRI showed tumor growth since the November radiation. We'll need to wait for the next MRI and follow up with his neurosurgeon about future tumor treatment. The doctor also discussed his short term memory and age related memory issues and treatment options for his emotional well being. The trauma of the car accident, the loss of our only car, and his inability to bounce back has weighed heavily on him.
Overall, it was a very informative visit that left both of us feeling better considering the past three weeks.
The next step is for Lance to return to work Sunday night.
HE is antsy to resume his normal routines.
I am worried he's pushing himself too much, too soon, as usual.
I'll be driving him to work because of the seizure. After weeks of disturbed sleep and steroids, he's trying to resume his usual sleep schedule for the night shift. His weakness leaves him unable to get back into his exercise routine which keeps him strengthened for the job. He knows he will have to slow down but he thinks he'll be able to push through the entire 5 day week. I'll be shocked if he can. I'll be even more surprised if he succumbs to his limits and actually takes off time as he needs it. He is so scared of getting in trouble, of letting his coworkers down. He's always been like this. He's going to have to learn to take care of himself before the job.
Hopefully, this answers some of the questions about Lance's health. If you have more questions, please direct them to me at this email account.
Bonnie
Lance has returned to work. I am driving him 260 miles every night. Without the job, there would be no health insurance.
Pandemic Self Portrait
