Multiple people have asked for this little tale, and in honor of the "anniversary of the brain tumor", I'll honor you by offering the following.....
The March Brown Chronicles (because Bill ties flies and this was what he was seeing hatch):
It all started back in March, when Bill came to my workplace to give me "the bad news". He'd had his ankles re-evaluated, the news was bad in that they only saw one way for him to be able to go: surgery.
My manager came over to "help" and was there when the REALLY bad news came in.
Bill was going to have to go under the knife in the summer, I was going to have to stay home and watch him for the first two weeks. and we were going to spend all of our IRS Tax Refund on just this.
Of course, my manager understood, saying how that was in the middle of redoing the POGs for Back To School, and we were going to ALL be at the store, etc.
Bill wasn't having it, so the manager had to "buck up" and give me the weeks off. (I was already upset with his behavior, and this made me REALLY hate the manager, having to go over his head to get the necessary time off. I still sort of blame him for what REALLY happened.....)
Several months later, at the end of June because his surgery was to take place on June the 27th, we took a vacation in Sourdnahunk, because our week "away from the crowds" started when our cell phone use runs out and we've driven another 10 to 20 miles further. It was about 60 to 70 miles outside of Millinocket, and as a "last blast", it was memorable. Bill brought his boat to fish, and one day, we went out for a tour. We saw the wreck on Elephant Mountain of the B-52 in 1963. (For the whole tale, go here:
https://en.wikipedia.org/wiki/1963_Elephant_Mountain_B-52_crash) On Thursday, the one "rainy" day we had was supposed to be spent getting pictures, but I forgot the camera....and when we got back to camp, I didn't want to go back out. I don't know how to describe it, but I felt "off" somehow. Even the drink I did after dinner didn't set right and I left half of the glass. We made an early night of it, crashing in the tent with my hubby, my little dog, and myself.
I'll let my hubby's Facebook take it from here:
"At eleven PM my world changed in an instant, I awoke to my wife in violent convulsions, she was having a seizure. I held her until they stopped , carried her to the truck and prayed. I am not easily scared , but I will tell you this , That period of time was by far the scariest thing I have ever had to do , could get her the fifty plus miles to Millinocket hospital in time. One hand monitoring her pulse , constantly talking to her , she is unable to respond . I know I have to balance speed of driving with staying on the roads, keeping an eye out for Moose, one runs out in front of me , I slow and trail it , I mutter out loud that "Moose I don't have time for this now." Debi is just starting to become aware of her surroundings, she still cannot respond to me, she tells me the first thing she sees is me racing a moose, then she realizes we are in the truck . finally she is able to speak again. "what are we doing where are we going?" I tell her she had a seizure and we are headed to the hospital. Now I am relieved we are there, hope starts to return. They do some examination talk with me about what I saw, medical history. they do a CT scan. The doc tells me they see something there . they have no neurologist and have sent it to a place that reads them 24 hours a day. They confirm an abnormality and I am informed she will be staying in the hospital and transport to Portland tomorrow.. it's now three am , me and the dog drive the hour and a half back to get our gear. no sleep for me . back to the hospital check in . state law would not allow them to let me transport her to Portland. So I kiss her goodbye head for home and start unloading gear. on the way home I called my son and daughter and told them the news. called my ankle surgeon and cancelled surgery for tomorrow. Finally in Portland they tell us that they will be keeping her in for more testing . Saturday morning they give us the news she has a tumor on the left side of the brain and surgery is Tuesday."
This is accurate - except for MY part in this tale. I went to bed, as normal. I woke up in the truck, Bill's hand over my pulse as he's racing the moose and I hear him say "Moose, I don't have time for this now!"
I think "Boy, this is an active dream!" - and sort of drift back out, the dog on my lap and unable to get my dream-self to ask Bill what we're doing.
It was another several miles before I was able to ask "What are we doing? Where are we going?" after having a couple of Tic Tacs to moisturize my mouth. Bill looks like he's talking to a ghost as he confirms the seizure.
The rest happened as he said, with him taking the time while they're running tests to give his version and me telling mine. The funny thing about the ambulance driver is he was in a group who'd been on Sourdnahunk the day we arrived, so he was explaining to the EMT how far away we drove from...
And the EMT is looking at me the way people stare at Danica Patrick.
Saturday's MRI was actually at about 12:30 at night, when I was nice and sleepy. I was still in the haphazard "suit" Bill had put on me on Thursday night/Friday morning, as they hadn't changed me into a johnny, but I didn't have a situation when I needed to be pulled out. Thank goodness for a friend introducing me to transcendental meditation.
I was allowed home on Sunday - and boy, did I need that shower! I had been in the same clothes since Bill pulled me out some clothes in the tent Thursday/Friday - and I was starting to feel really ripe!
Back to Bill's March Brown Chronicles:
"We had the appointment with the neurosurgeon this morning. The tumor is larger than expected , and near motor and speech areas. So they will remove as much as they can safely . Then they will test type of tumor and plan next parts of therapy. Surgery will be a week from tomorrow. Lots to absorb and process. Thank you all for your kind responses."
My son, my sister, and Bill all went to this first visit with me. There was a LOT of information, partially how long this had to develop, what my chances where.....
As Bill said, it was a lot to absorb and process. Of course, being us, my son and I had been talking like Arnold Schwarzenegger in "Kindergarten Cop": "It's not a tumor."
That morning, we kept saying "It IS a tumor!"
On 6/29, we went in for the MRI that would tell the doctor where my brain was going to be effected when he removed certain parts of the tumor. The fact that he would be having me "awake" during parts of the surgery, talking to him and his nurses, I was trying not to let bug me.....but it did.
Little things got taken care of, like the Power of Attorney and collecting my things from Staples while I still remembered having things to collect there. The other employees were shocked, but understanding. Troy, the Assistant Manager (at that time) tells me that the day I came to get my stuff was the worst day....
I can think of one more.
On 7/5, we went in to have the surgery. The Power of Attorney was accepted. We were told that I was "a little unusual" because three areas of my brain reacted to the stimuli that were supposed to make one area "light up". Meds were given. I was wheeled out into surgery....
And I have to go to Bill for the "result":
"Debi had surgery this morning. They were only able to remove a small part of the tumor. There were complications. She will need to have another surgery to attempt to remove more . Surgeon thinks maybe Friday. Not the outcome I had hoped for. She is unaware of this at this time."
All I remember from the 5th is being downstairs in the recovery room for a LONG time, sleeping (or so I thought) while they arranged for the transfer to the 6th floor. Bill continues letting people know what's going on in Facebook the next day:
"Second visit wth Debi last night , she is still having difficulties with speaking words but showing improvement. I will be updating later, yesterday was very taxing both mentally and physically for her. She is an incredible woman . If she is up to it I will bring the grand kids in to visit."
And the next day, he posted this:
"On this mornings visit there was not enough improvement for surgery tomorrow. Possibly Tuesday.
A little explanation on why I have titled these March Brown chronicles, as.many of you know I am an avid fly fisherman. The March Brown is an early season mayfly. Where this ordeal started at was Nesowadnehunck, one of Maine's best native brook trout fisheries. My beautiful wife went there with me because of my love for this spot and as the final leg of what was my Maine Mecca fly fishing / good riddance to pain tour. She does not fish. The mayfly hatch at the time was the start of the March Browns, as each night came the hatches became larger and the dry fly fishing pace became faster. One of my most favorite times of the year. And in an instant our lives changed .
You already know the rest of the story to date. Those images will be forever tied to the March Browns for me. Be kind to all, hug your loved ones!"
I didn't know that I was having seizures, so this next one took me by surprise:
"After a rough start and complications from additional seizures yesterday, the Doctor changed meds and Debi is moving in a positive direction. The seizures are under control again and she has more speech ability today . She greeted me at the door of her room with a loud and clear hello! She still has difficulty with words coming out but it is much improved."
I was told by a couple of the nurses that the "speech impediment" was the reason that I was still at the hospital. Despite reading Sherrilyn Kenyon's "Styxx" while left on my own (which I wasn't supposed to be able to do, baffling the doctor), I felt fine....except for the little "blood bag" that was still attached to my skull and the bag of fluids they had going into my arm. I had started Keppra as soon as I arrived at the hospital the first time, so when they added the Dilantin, I thought that it had to do with my "slurring" my words, I had no idea that I'd been having seizures right along.
Bill would come in and visit for a while, go take care of some things, and then come back in the evenings, but he didn't update Facebook for a little while. The "blood bag" had served it's purpose and was removed. I was allowed to shower with a nurse in the room - and whenever they left me alone, I was reading "Styxx" as much as my head would let me. We had a couple of RN's we really liked, one who had noticed my tattoos and came in to compare hers, and Paulette, a little "blond" (her hair was mostly grey) with glasses. I had also met Dave, who came to take me out on slow walks, allowing me to circle the nurses station and was able to confirm that I had not sustained any muscle damage during the surgery on my head.
On July 11th, this was Bill's disappointed entry:
"The morning started out with a couple of disappointments. When I arrived at the hospital I had missed the Doctor . He evaluated Debi and cancelled surgery plans for Tuesday, Friday is still an unknown. While visiting her she had another seizure. One more step backwards . She was of course upset by both things. They tested anti seizure med levels and found them low . The dosage was adjusted and she spent the next few hours recuperating from the morning. I stayed with her until ten a.m., then off to take care of insurance paperwork for her employer and send copies of the power of attorney forms to Cigna and Mercy. I brought the necessary papers to be faxed to the shop, Colby sent them out for me, talked with Chris and Hope, they have been so supportive of me. I cannot fully express my gratitude, I do not know the words to adequately thank them . they have taken a huge burden from me while we sort this out.
When I returned she was just waking back up to have her dinner. the Doctor came back in and spoke to us, and told us there may be physical and speech therapy necessary before we get back to a safe point to try surgery again. Our favorite angel was in charge of her care again today, Paulette , I feel comforted when she is there. She is kind and truly a caring individual. The Doctor suggested that I walk Debi around the ward, she agreed and we went three laps around. It was very good for me to be able to do this. It lifted my spirits and hers. When I helped her back into her bed I kissed her and thanked her for the dance.
This week has been very difficult for me, and I can only imagine how much harder it is for her. I wish so much to be off this roller coaster ride , but I also know there is a lot more to go before we will be through this. We thank all of you for your thoughts and prayers. Be kind to one another, and hug your loved ones!"
Chris and Hope are his bosses, and Colby is Chris's daughter, just to explain to any who want to know that. *wink*
And the next day, this was his entry:
"Debi never ceases to amaze me. With all the turmoil in her world she still worries about me. She encouraged me to go play pool with my team . It was very therapeutic. Great to see everyone! It was a necessary distraction. This morning after sleeping in until seven , a first since this all happened , I took our dog down to our friends camp , checked the boat and Pookah went wading. Took him home and on to the hospital. I arrived to see her with a big smile on her face and doing better today. No further news on when surgery will be. They may have to do physical and speech therapy first. She is still this fisherman's best catch ever. As always be kind and hug your loved ones!"
Bill's next entry was what room they were moving me into on the floor. That was a one night thing, as they decided to ship me over to the Rehab Center:
"Took little dog out for some much needed time to spend with him. we went for a boat ride on Little Sebago. . he hasn't had much of my time recently. It was good therapy for both of us. went to the hospital Debi wasn't in the room they told me she was moving too. wound up having to demand the information I have been requesting. finally got a few answers. She has been moved to a less critical care ward as she has improved. They were supposed to come speak to me about the possibility of her going to a rehab center or coming home and going to therapy appointments. this was supposed to happen before my optometrist appointment, it did not. returned to the hospital after appointment. tracked down the same staff and and told them they were not leaving until I got information. The rehab person came out and apologized for not getting to me at one. discussed care options, the best way for her recovery was the rehab center. Now everything goes into hyper speed. they called the insurance company got the authorization. Debi is now in New England Rehab Center. The current plan is five days of speech, physical and occupational therapy. The goal is surgery on Tuesday. She has improved the last two days. I hope and pray that rehab works and the next surgery works. Til the next update, Be kind, hug your loved ones. None of us knows what's around the next corner."
This was on July 14. I arrived at the Rehab Center at about 6-ish, saw the doctor, and got settled. The Rehab Center had me all set up the next morning to have an hour of speech, an hour of physical therapy, and an hour of occupational therapy, broken up so that I could have a nap between. They had all my pills on a schedule. They had MUCH better food, allowing me to choose more like the mediterranean diet that I had gotten used to. I did MUCH better than they expected me to, using the PT to stretch properly, showing the OT that I knew more than I could say (which led her to give me the words "Aphasia" and "Apraxia" to look up when I got home), and the only one I was sort of behind on was the ST. I could see the word in my head, I could have the wish to want to say it - and it would be no more before it reached my lips. (VERY annoying - and one of the few things I still have to bother me from last year.) I've gotten better, but it's still there - particularly if I miss my 2-ish nap. I go to bed with everything working, and then I wake up like Caesar - the Monty Python version of him;
Yeah, that would be what I sound like......on a good day......with proper meds and a good nap.
By the eighteenth, when Bill was trying to get the Rehab Center on the same page with Maine Medical Center, he wrote this entry:
"After checking with the rehab center and finding that as of this morning there were no discharge orders, I contacted the Maine Medical centers admissions department to check on surgery status, it was still scheduled. contacted the doctors office and got final confirmation. The much awaited second surgery will be tomorrow morning at 7:30 . I will pick up and transport at 5:30 am. I can assure you that Debi is stronger today than she has been since the first surgery. her statement to me is I want to get this part over so we can get to the rest of the treatments. She is strong and determined . We will hope that this time more can be removed . We appreciate all of your support. Keep the prayers and positive vibes coming. As always , be kind and hug your loved ones!"
Early in the morning on July 19, Bill posted this:
"I awoke at 2:30 am , shortly after that my beautiful wife texted me three simple words........I love you! I responded in kind. Neither one of us was surprised the other was awake. We were both thinking about the surgery in the morning. As most of you know this was a second attempt. This surgery went very quickly and they were able to remove a large piece and the doctor said she responded much better. She will be recovering much of today and I will keep you.posted on future events."
He didn't post because he was in the hospital, dealing with the "dipstick on the 6th floor".
The first indication that I was going to have trouble was the fact that the RN didn't understand me. I would press my button, say "I need a bedpan", was assured she heard me - and no bedpan. No "help to the bathroom". No NOTHING. So I tried again. And again.
Finally, after two hours, with my bladder threatening to burst, I caught the blood bottle in one hand, the fluids they were pumping in on the other, and I made every buzzer light up as I raced to the bathroom, dribbling pee the whole way.....and then they had to put the "blood bag" back where it belonged.
And they took notice - at least, for a little while.
When Bill came in, I tried the buzzer, telling him I had to pee. They responded, hearing that I had to pee......
And then nothing.
I was already squirming, so Bill went to the nurses station to find out who was responding to me. She was standing right there, telling him I was "hard to understand". When he got her to the room, she stopped by water intake to correct something there and was on her way out when Bill said "Is she supposed to pee the bed before you take care of that, too, because I've been here two hours and no one has been in to see her?"
With a look on her face that stated my husband would be dead before next week, she FINALLY got me a bedpan. (She was the one he went down to Admin to have her taken out of my life, as she was really rude, but they didn't listen..) It was, if all the other nurses all knew this as she didn't:
On 7/23, this was Bill's Facebook page:
"Debi is now home! They moved up discharge to today!"
Did it surprize me when I got shipped home on on Saturday, the fourth day after the second surgery?
Nope! Not when the RN totally ignored THIS as my "difficulty in being heard":
The first week was mostly sleep, as much as that bugged Bill, but each day, I was feeling better. Apart from the shower I'd taken pre-surgery, I was pretty dank - so that was the other place I wanted to spend my time. To make Bill feel better, I sat and went over all the paperwork I had, learning which glioma I had.
For those who haven't followed this WHOLE blog, it an Oligodendroglioma. According to the paperwork, they took the equivalent of a baseball out of the left side of my brain. (I don't know WHY the RN couldn't understand me!) In other words, I didn't lose anything "important", just the ability to use my left brain.....
*shrugs*
And through it all, I finished "Styxx" by Sherrilyn Kenyon.
With me able to do TWO entries for the visit we had 8/3, I'll give you Bill's first:
Here's Bill's 8/3 notes:
"Debi had appointments with the neuro oncologist and the radiology oncologist . The purpose of these appointments was to map out the next steps in her treatments. On the nineteenth we go back for a mapping appointment . The radiology oncologist was first, he explained the nature and genetic markers of this tumor indicate that the best form of treatment was to combine both radiation and chemo . The first phase will be done as five and a half weeks of daily radiation . then there will be a month break and healing time. The next phase will be a year of chemotherapy. this will be done as a week of chemo three weeks off each month for a year. All indications are that this should stop it from growing again . Next portion to inform people of , when you see an occasional post from Debi that doesn't make sense , remember that her brain has not fully healed from surgery . so when she is pushing to do more therapy occasionally there will be small mistakes . Do not worry that there is an unexpected problem . The expressive aphasia affects most of her communication skills to some extent. The important part is that she continues to improve, and that most of the speech therapy will challenge her and there will be some small bumps in the road. But i can assure you that each day she has gotten stronger and made improvements. But there will be an unknown amount of time for the rest of the recovery to take place. There have been a couple of people who decided to put there own spin on where Debi is on her recovery . I implore you to seek the facts , do not assume you know what is going on and misrepresent the facts. Each day we add a little more activity, another wrinkle in her therapy and she responds admirably. As always Hug your loved ones, cherish every moment , and be kind to all."
Here's
mine, dated 8/4
"Here's
the result of the neurosurgeon, the radioncology doc and the
oncologist, beginning with the one I saw today:
Dr.
Florman, who was my doctor who saw me through the surgery (despite my
brain injecting the aphasia/apraxia), was pleased to announce that
the glioma, a residual oligondroglioma, has all the correct markers
that mark it as a grade II...
Which
is good...
Next
up is the radioncology doc, Dr. Bristol. He's taken this "good
news" and is preparing the 20 minute five day a week radiology
that I need to prepare myself for next...
And
he may be the one who causes the Sinead O'Connor look, as he warns
that this is the step that may cause that. We'll see.
As
soon as he let us digest this, I was introduced to the lady who I
will see the most of over the next year, Dr. Christine Lu-Emerson.
She was risky enough to ask for the history of this story...
And
was treated to the Midnight Ride of the March Brown with four part
harmony...
She's
in charge of the chemo that will take over my life once Dr. Bristol
is done with me, and I pity her. She has to put up with Bill.and
I....
*grin*
So
that's the result. Thank you all for hanging with me and thank you
for all the prayers."
Have you noticed how many of Bill's entries mention "love your families" and "be kind to all"? His mother told me he "believed in Peter Pan peanut butter" but not much else. It seems that, with this "close call", he's felt something.....*grin*
Any rate, after the poking, prodding, and bloodletting, I was allowed most of the month for healing and recuperation. That's when Bill got this shot:
I still haven't used the kayaks,,,,,
Any rate, our "next stop" on this mission was Radiation. From August 29 through October 7, I was there at the Radiation department, doing my yoga before my time, 15 minutes of the radiation, and off for the day with weekends off. We had helpers for this part, for which I owe TONS of "Thank You".
As Jim (the nurse) suggested I would - as he panned waving back hair - eventually have his hairdo for a slight time. (He's bald.) We laughed, we went through what I could expect (such as that eventual disappearance of my hair), when we'd finish....and after all his help, I left him picture of the "Radiation Mask" done up like Deadpool.
The radiation mask is fitted to your face - and then some. It feels like they're blobbing cement to you....literally.....but what comes out has a certain glory. It has a style - and mine "talked" to me of Deadpool. For 15 minutes each day, I would lie down facing up, have this strapped to my head - and try to relax. Thank goodness for transcendental meditation. I was firmly on an island, or going through my "check list", or anything other than getting nervous for that time frame. Once a week, I'd check in with my doctor, and there was never any complaint - except for the disappearing hair.....
Chemotherapy was - and is - the next step(s). Every 24 days, I stop for 5 days and take the pill that does it's duty. It's then up to me to get over the Chemo in the next 24 days before the next one - and some days, that's been interesting, like when I wasn't keeping down food. As of this writing, I'm almost over Chemo # 9 with 3 to go - I hope. Before I pick up my pills, there's a doctor visit where they take my blood. get my stats, and go over anything I didn't like in the last Chemo. The only time
I got into a really bad way was the second and third chemo, when they doubled my drug. That only lasted for two months before they put me back to the original dose....
So, on this Anniversary of Sorts, I look back on the year that has been. I hope for the future, as best as I can. I'm keeping myself busy with genealogy, writing, gardening, etc....
And I hope to see you here for Anniversary number Two.
