Six weeks later, still in hospital, but the anti-fungal has destroyed the heart fungal infection after 6
weeks of treatment. I've been told that most hearts would have just given up and out, but for some reason, I'm still here.
A number of folks I have known in the past have died over the holidays and yet, here I am.
Just began to feel better and now I've got the flu. Can't seem to win any which way.
The plan is to go into rehab for a few weeks after this flu takes its leave of my poor old wasted body. We shall see.
Stay tuned. It's been an amazing ride and it ain't over yet.
Thursday, January 29, 2015
Tuesday, January 6, 2015
First, thank you to Calvin for spending some time with me on New Year’s Day. It was a very pleasant time and a joy to meet him in person. Hope we meet again under happier circumstances this year.
Fevers are fewer these days.
Meds are fewer now, too. Mostly IV stuff.
When released, will need to be infused daily with anti-biotic and anti-fungal med.
PT continues to help with the walking and stairs.
No need for oxygen right now.
Eating to gain weight - not much success, so far.
Found more PERN books to hold me over and keep me relatively sane. Since I’m awake at all hours, I keep the Nexus 7 charged at all times.
May be out of here before the weekend, but don’t know where yet. Linda returns from Holiday in Ireland this weekend, so I’ve that to look forward to.
It’s been suggested that I find a tasteful walking stick (not a walker, please!) to help my balance when I’m out and about. Something to go with my style, you know - - vertical.
Will ask Jeffrey to scope out retailers to see what they’ve got to offer. I don’t want one of those cheap, aluminum medical devices. Something with a little class that I’d be proud to be seen with in public.
Have met two very nice hospital employees recently. Both Latino and both anxious to talk about being gay in Rehoboth. Very sweet guys. Keep me occupied for an hour or so, which is damned nice of them. One is a CNA and the other works in Maintenance. They say they’ve been praying for me since I arrived last month. Little surprised by those remarks, but I’ll take it.
People never cease to amaze me.
Sunday, January 4, 2015
I am awake.
I am in hospital.
I am in pain.
I am aware.
I am anxious.
I have a mild fever.
I am medicated.
I am ready for a nap.
I am mystified as to why hospitals don’t sell health and beauty aids. I could sure use nail clipper right now.
I'm amazed that it's 2015!
Tuesday, December 30, 2014
It has been another 3 days since I’ve heard of any brilliant plan from the Gods on High regarding any new treatment and I am alternately wide awake or very sleepy when any rumor arrives. So far, it’s all turned out to be rumor, cause here I sit.
I’m getting a lot of reading done and in my very confused little mind trying to sort out a legal itinerary for a legal trip to Holland for a soothing end to this nightmare via a short side trip to Euthanasia
Anybody up to a trip to Holland?
I keep trying to write Dutch friend, Peter, for his input, but the words don’t seem to come together on paper so I give up and try again another time. I mean everything from coordinating oxygen, wheelchair, medications, transportation to airport and to the Dutch medical facility, and then reversing the whole process - without me in the mix.
Ashes scattered all over Amsterdam would make me very happy and content.
If you have any experience along these lines I’d appreciate any input you’d be willing to share.
Meanwhile I await the coming visit of at least one surgeon or specialists for quality care of some kind…ANY kind.
Anyway, Happy New Year, if you don’t hear from me beforehand
Amazed and still confused.
Monday, December 29, 2014
Why, Hello there! Haven’t seen you in a while and it’s just as well that you haven’t seen me.
There’s no amount of Max Faxtor on the planet, trust me.
Way too much has happened in the past 3 weeks and I couldn’t remember the dates if I tried. I do know I am on another big batch of antibiotics as well as anti-fungals now.
There is a fungal infection around the heart and the pneumonia just doesn’t want to leave me.
I am now on oxygen, too. Only 2 litres, but still enough to be annoying and in the way.
A couple of the tests were invasive, so even with the MAC a few feet away, there was no energy to write anything coherent and informative
That’s all I’ve got for a medical update for now.
Although I’ve not been online for the holidays, I’ve thought about many of you, very often. To those who’ve stayed in touch even dropping a note occasionally - a special thanks. Your words and thoughts kept me going when the pain (or painkillers) almost let me down.
Don’t know what’s in the future but without a living space on the ground floor, I won’t have one any time soon.
I don’t have an iPad here, but you folk with FaceTime might me hearing from me via my iPhone. I hope you don’t mind.
I’m stationed in room #224A (don’t know how long) at Beebe Medical Center In Lewes, DE.
I’m drugged a lot so I sleep a lot. Sorry about that, it’s what keeps me from sitting at the keyboard and writing.
Suffice to say, I miss you all and think of you often. If, for some reason I can’t get back online again for a while, I want to wish you all a Happy New Year.
Didn’t think I’d get this far!!!
I am amazed.
Thursday, December 18, 2014
Just setting’ a spell at Beebe Medical Hospital & Ocean Spa in lovely downtown Lewes, Delaware.
This relaxation time was provided by the Cancer Tumor Association and is likely to last 5 to 7 fabulous days. Fevers returned with a vengeance. So far, weather has been fretful and treatments are not coming up to expectations.
....And I'm forever catching myself humming Stormy Weather.
....And I'm forever catching myself humming Stormy Weather.
Spending time with old friends here. Am exploring new variations on an old theme, plus giving a test run to a new anti-fungal whose name escapes me now.
Heavily sedated, of course, so can use only a single hand to type.
Hoping for good news soon. If not, here’s wishing you all the joy and love of whatever holiday you celebrate. If it celebrates neither, find another one.
Every day has been amazing and hectic here. Good things are coming.
I am so amazed.
Sunday, December 14, 2014
Saturday, December 13, 2014
The Friday appointment with the attorney had to be cancelled due to emergency transfusion on Friday morning. I am sure she wasn’t a happy camper when she learned that news. Couldn’t be helped.
Went into full crash mode on Thursday afternoon, so when I called the Center for advice, they told me 2 units were already ordered while we were speaking and since I was already in a crash scenario just continue to chill, rest and do as little physical activity as I could get away with until I arrived at the Center in the morning.
That was easy to do. All I wanted to do was lie quietly so as not be short of breath and be as careful on my feet to be aware of any possibility of falling. Took a painkiller and high dose of Tylenol before sliding between the sheets where I stayed until morning when I had the tedious struggle to get dressed (hard enough with the use of BOTH hands, a real torture test without) and try to be ready when Jeffrey arrived to transport me. He did have to help me with the sling (the dear!)
It all went smooth yesterday and though I was, by this time, very weak and finding it difficult to put a coherent thought into words there was no panic. I had enough trouble following instructions and answering questions posed by the staff. I managed. I now know that I can go from a moderately low red blood cell count to a dangerously low one in less than 24 hours. For no apparent reason and without any change to normal daily activity.
At least I was able to recognize and be aware of these quick changes nowadays. Glad I made the right decision early enough that no harm was done and the attorney couldn't whine about wasting her time.
Also, this latest blood - O Positive with modifiers for me - gave me a positive kick, or booster and I feel better today than I have following transfusion in the recent past. For this, too, I am thankful. I am not going to be doing anything crazy, but I feel like I could put on my dancing shoes and boogie around the living room for a bit.
I am amazed.
Thursday, December 11, 2014
How far does loyalty and American Patriotism take you when a young, supposedly heterosexual soldier is ordered to rape (FUCK) anally abuse teenage boys? Forget whether the acts were performed in front of family members, or not. It’s the very act that matters.
Just following orders! (?) Foul, evil, conniving, self-righteous. Humans enjoy nothing more than the act of harming other humans
Does it take this sick behavior to finally stop you in your tracks to say, “this, my entire way of life, has been a vast red-white-blue lie.”? Does it? Even a little bit? No wonder more and more of our soldiers and hurting. There are secrets to keep, they bought into the lie, too.
Yes, by all means, let’s offer a free ride and safe passage to George Bush and Dick Cheney, but do everything possible to draw-and-quarter the likes of Edward Snowden for drawing attention to their crimes, and others.
All humans are truly pathetic, dangerous creatures. We’d rather harm others who suffered as we have, than to banish that suffering and those who ordered it in the first place.
I am sick.
Wednesday, December 10, 2014
I am not sure whether I ought to be spooked, or freaked (2 very different experiences), grateful and curious, or give myself a slap upside the head for missing something important that this card is trying impart to me.
As you can see in the side bar, this is the card of the month - second time in a row. It has popped up as card of the day again today - the second time in the first 10 days of December. I know shuffling the deck is not an issue. I am very careful with that, almost religiously so. This is uncanny.
Sat up most of the night in pain reading, or trying to. Between the shoulder, left arm, wrist and the leg swelling, painkillers didn’t have a chance. Pain was so intense at times the nausea kicked in big time. Compazine helped - but not with the pain. There was no way to ignore it.
So I decided to pull my card for today and, well, imagine my surprise when this one comes up again. Everything I read about it points to having a lovely time, enjoying love and friendships, and lots of happy, strong emotions.
But, while I’m in great pain? I think not.
I’m more than half way through my annual reading of LOTR - about midway through The Two Towers - occasionally finding a bit of info that I’ve missed in past years, making one more part of the trilogy fall into place. With the arm out of service I’ve been unable to write these down, but I think I’ll remember enough as some of the characters (or their heirs) play a part of the final book. I’m reading more quickly and more intensely than in other years. I guess I need more concentration this time round to pull me through.
The struggle to put on clothes begins shortly. Jeffrey will pick me up at 8 for a few appointments, then I have a few scrips to get at the pharmacy followed by a CTScan before I can head home and return to the peace and warmth of my bed.
The storm system moving through has me moving carefully and with someone’s help. Can’t afford to dislocate the right arm now. I’ll be happy when the trials and demands of the day are over.
And so it goes.
Tuesday, December 9, 2014
I’ve been reprimanded for using the word “burden” in the last post. I am sorry. This is so very hard for me and sometimes I fall back into the old thinking. Were I a caregiver I know how I would feel hearing that word, but it’s very difficult to project it onto others. I will make every attempt never to use it again.
The appointment with the Orthopedist went well. Given that we were both awake and I was only slightly sedated we were able to rehash the events of Tuesday night. He’s really a nice (read handsome) man and over the past week had educated himself to my case. He asked a few questions that had puzzled him, but all went well otherwise.
He set up an appointment for a CTScan for this Wednesday - conveniently after the Labs and the other Dr.s appointment at the Center. Even set it up at the Imaging Center next to the Cancer Center. Couldn’t do better than that.
I’ve an appointment next Monday to meet with the other surgeon who will aid in the cutting up of my shoulder, removing the broken bits, and repairing any damage. You know, a few years ago I would have cringed at talk like this, probably gotten physically ill, but now it’s like I’m just another piece of meat. And believe me, that’s what I feel like.
The sling is to remain in place and the only exercises are to strengthen the hands, fingers, wrists. That’s OK with me, because gravity begins to set in after the sling has been off for a while and it feels like the shoulder is being drawn towards the floor. I purchased a rubber ball for the purpose of exercising and use it absently while reading.
Finally made an appointment with the attorney to update the Will, etc. only to have her call last evening to cancel that one and try to finagle another one. She got all huffy when I told her the suggested dates wouldn’t work for me (she actually sucked her teeth, you know, that “tch, tch” sound a few times) so I explained the situation - just like Vivian Leigh I am dependent on the kindness of strangers for things such as transportation these days.
When I finally said I couldn’t understand the problem, that her office hours are supposed to be 8 am to 4 pm Monday through Friday, she really got pissed, almost to the point of raising her voice. So I gave her specific days and times that are usually convenient, told her to work around that, then call back so as to confirm something with my friends and driver. She was not amused.
As Archy would say: “People may think they amount to a great deal boss, but to a mosquito they’re just something to eat.”
I was exhausted and went to bed soon after. She is another one who used to be a friend in my previous life. So, there’s that.
I am amazed.