Hello dear readers.
I know this year has been sporadic in my posting of this blog, but it has been a long complicated year. I would say that I would like to leave many of the things that happened in 2017 in the past, but they have made impacts on my life, and the lives of my family and friends that we simply must move forward with them in tow. I warn you that this will be a long, and probably depressing read, but I will also add some quotes at the end, as a way of apologizing. Just stick with me. This is part one, a lot of the bad and the painful that I would like to leave in 2017. Part two will be some of the better things, happier and joyful.
It has been a year of loss and pain, and yet a year of small victories and joy. In January, my maternal grandfather passed away at the age of 87, two weeks before what would have been my grandparents’ 66th wedding anniversary. It is hard to say that it is ever a surprise when someone who has lived such a long life passes, but alas, death is one of those things for which we are never ready. It hit my mom really hard as she had quit her job to take care of my father but instead wound up taking care of her own father.
After her father’s passing, she went immediately to caring for my grandmother. As selfish as it is to say, my father’s health continued to suffer as a result. In May, she took my grandmother to the hospital due to a shortness of breath and a ever growing goiter. They discussed options for removing it, shrinking it, ect. In the end, the hospital decided to refer her to a throat cancer specialist at Emory because they would be more familiar with the type of surgery that would be required. This was sometime in June. The oncologist decided that further testing, such as further blood tests and a biopsy, were necessary to form a more detailed plan of action. In mid July, we received news we were not expecting.
My grandmother, at the age of 86, was diagnosed with stage 4 anaplastic thyroid cancer. Possibly due to not having the goiter removed years ago, but that is not a game worth playing. She was scheduled to start radiation on August 3rd, the day after my mother’s birthday. There was a large family fight because she was required to have a family member stay with her at the Hope Lodge (special housing near the hospital) round the clock. My mom wanted to go but I argued largely against it because my dad’s health was beginning to fail, more so than it already is.
August 2, my mother’s 61st birthday, changed that. My father, who is diabetic, on dialysis, has vision problems, and neuropathy, stepped off the stairs on their front porch wrong on his way to get in the car to dialysis. He broke his ankle, on both sides of his left leg. Being diabetic and on dialysis means that he does not heal quickly. My mom rushed him to the ER the next town over (because the hospital in our town will not touch a patient on dialysis – for any reason) where they splinted his ankle and scheduled him for surgery late the next day. I took off work to stay with my dad while my mom went with her mom for her first radiation treatment and to help move her and my aunt ( who took a temporary leave from work) into the Hope Lodge.
After the surgery for my dad, he didn’t quit using his foot. He couldn’t tell how much pressure he was putting on it because of the neuropathy. The screws pulled out and the plates bent. The options weren’t great after that. They really wanted the wounds to heal more before they went back in. Once they felt that happened as much as it could within the time they had, they went back in and removed the plates, screws, and a few bone shards. They then put a wound vac on it in order to try and speed healing for the next surgery.
In the midst of all this, my grandmother was still undergoing radiation. My mom made a few trips to go see her, while I stayed with my dad. One day, at dialysis, they discovered his fistula (the super vein created in his arm for dialysis) was clotted. They sent him to the vascular center the next town over. They attempted to clean the clots out, and sent him home. He begged them to admit him to the hospital because of the stress he would have to put on his arms getting in and out of the car.
When he got home, it was still bleeding slightly. As he got out of the car, he felt he popped one of the sutures. It began bleeding profusely. My mom couldn’t get him in the car by herself, so she was forced to call an ambulance to transport him to the hospital (the next town over of course). Unfortunately, the paramedics did what is their job, but not quite the correct course of action for this case. They applied pressure to stop the bleeding. Which, as we discovered when he got to the hospital, also reclotted the super vein. Which put him into a surgery that was several hours long. Once they got in to try to bust up the clots, the artificial vein basically disintegrated.
It had been in for three years, which is apparently pretty good, but it also meant that they had to do an emergency reconstruction instead of just cleaning the clots out. They also put a permacath in his chest so they could continue dialysis while his arm healed enough to use.
Meanwhile, my grandmother successfully completed her 6 weeks of radiation at Emory. She was, understandably, glad to be home. However, my aunt, who had been staying with her at the hope lodge, started dragging her anywhere and everywhere she could think of, even though the doctors had prescribed lots of rest to help her recover from the radiation. I understand what she was trying to do, but my grandmother was visibly exhausted. We were still having problems keeping her blood pressure and sugar under control. A few weeks after she completed radiation, she had to go back to Emory for a check up/ PET scan. My mom and my aunt went with her.
Much to our dismay, the news wasn’t what we were hoping for. The cancer was still there, and there wasn’t much more they could do. The experimental trial they were hoping to get her into did not cover her type of cancer, so that was no longer an option. And, a few days after this, my aunt woke up to find my grandmother non-responsive. They rushed her to the hospital where options were discussed. The hospital where she was taken is where my aunt (my mom’s sister-in-law) has been a nurse for many years. The doctors informed us that there were medications they could give her that *might* help with a few things, like bringing her blood sugar into check, but not with everything. Her kids (my mom, aunt, and uncle) made the decision not to put her on life support or anything like that, to just wait and see. I rushed up there as soon as I could from work, and most of the family was already there.
It was heartbreaking, but to be honest with you, I think she was just tired. Sad and heart broken at the loss of the love of her life, tired of the radiation, and I think, when they told her she still had cancer and few options, she took that the only way she knew how. As God telling her that it was ok to let go, and that it was time. She passed away two days later, and I held my mother as she cried. Ugly tears of soul ripping sorrow. Tears of regret and sadness. Tears of love she still had to give. Tears for the phone call she now had to make to my brother, who moved to Seattle with his wife in March.
After her passing, they went to planning the funeral (which was paid for and mostly planned) and I went to finding flights home for my brother and sister-in-law. I know we do not get to plan things like life or death, but I do hate the fact that the funeral wound up on my brother and sister-in-law’s wedding anniversary.
In the midst of my grandmother getting out of the hospital and her passing, my father had more complications of his own. The wound vac was supposed to heal the wound so they could go in and either a) immobilize his ankle completely with a steel rod or b) amputate his ankle and foot. He and my mom had many many long talks about what would be better. He was leaning towards amputation but the doctor, after more reviewing, convinced him to at least give the immobilization a go. Well, home health had been coming out several times a week to change the wound vac, and one morning, it was full of blood, so full it was bubbling out the plastic dressing of the wound vac because the vac couldn’t keep up. Flash forward two more mornings of this and my mom called his surgeon. The assistant answered, and advised her to take my dad to the ER a town over (same town as earlier, different hospital) where the Dr was already in surgery and she would make sure he knew my dad was waiting to see him.
They immediately admitted him to the hospital with a possible infection. This began another worry of whether or not the infection was septic, which would mean surgery promptly to remove the permacath as it goes directly to his heart. After testing, it was determined that the infection was not in his blood, but was in the soft tissues of the wound. The prognosis was not good. Apparently, for otherwise healthy people, it takes two separate antibiotics, administered daily via IV at the hospital, for several months in the hope that the bacteria won’t become resistant to both of the drugs. For my father, who has many health problems, this was explained to him while also being told that it wasn’t really an option for them because they were afraid of the infection going septic or moving further up the tissue in his leg. He was advised that his best, and pretty much only option, was amputation.
That was on Friday. If that was what he decided, they were going to schedule the surgery for Monday because they felt time was of the essence. He told them to schedule it. He and my mother spent the weekend deep in discussion. While amputation had already been on the horizon, we didn’t think it would come up again so soon. The surgery was done Monday at noon. I left work to be with my mom, who can hold up a good front but was falling apart on the inside. Especially when the surgery took a few hours longer than they told us it would. And when they brought him out of recovery… well, let’s just suffice it to say that it was a long rough night for all of us.
My dad, surprisingly, was more prepared than my mom, I think. She was worried about how to get him places, like home and dialysis, and care for him, with the new change of events. Her car is not handicap friendly, they can’t afford one that is. She drives a 2010 Ford Focus that I had a trailer hitch and cargo carrier installed on so she could put his wheel chair on it. My boyfriend and I, and a friend of ours had built a handicap ramp on the side of the porch so she could get him in the house. We learned a lot about amputation and prosthesis the same way we learned about renal failure and dialysis, on the fly as it was happening. While he was in the hospital recovering from the amputation they went ahead and did a surgery on his opposite arm to try and form another super vein / fistula for dialysis. Unfortunately, this also meant he couldn’t start physical therapy as undo stress on the arm could cause the fistula to collapse or clot.
So, my mom gives him a hard time about adding Thanksgiving and their 35th wedding the anniversary to the days spent in the hospital this year. They sent him home with home health for 3 weeks to let the fistula heal. He went back in the hospital last week (Monday the week before Christmas) because he was wheezing and couldn’t breath. They discovered more fluid build up in his body and in his lungs. They did dialysis every day, and did CAT scans, x-rays, an EKG, an ultrasound of his heart and chest, and more. He was hooked up to a bipap, they are concerned with some spots in his lungs, decide it’s early pneumonia, and possibly COPD. They finally sent him home late Friday after taking a total of 17 liter of fluid off his body and running a round of antibiotics and such for the pneumonia.
While he was in the hospital, his other surgeon (for the fistula) told them Friday morning to try to use it for dialysis. Unfortunately, it didn’t work and we’re not sure where that leaves us. We aren’t sure if he used it too much (which is the more likely possibility), when another surgery will be, or what this means for him starting physical therapy. He did have an appointment to take out the rest of the stitches from his amputation and it *knock on wood* seems to be healing. I, however, am worried because he took out the part of the limb protector that forces him to keep his knee straight, keeping the tendon stretched. But, you can’t force people to do what’s best for them. Especially when that person is a parent. We will see where this all will lead, but that, for now, is a problem for next year.
End part 1. P.S. I also had all 4 wisdom teeth cut out the day after Christmas, which is why I have time to type this.
“The world is not a wish granting factory.” – The Fault In Our Stars
“Your speed doesn’t matter. Forward is forward.” – Unknown
“It seems to me, that love could be labeled poison and we’d drink it anyways.” – Atticus
“I sailed seas of emotion, to wander a forest of scars, I am a dance of Light and darkness, A galaxy of shadow and stars.” – R. Queen
“You spend your whole life stuck in the labyrinth, thinking about how you’ll escape one day, and how awesome it will be, and imagining that future keeps you going, but you never do it. You just use the future to escape the present.” – Looking For Alaska
“You will never recognize happiness if you have never danced the night away with sorrow.” – r.m. drake
“The world is indeed full of peril and in it there are many dark places. But still is fair there is much that is fair. And though in all the lands, love is now mingled with grief, it still grows, perhaps the greater.” – The Lord of the Rings
“You know what the issues is with this world? Everyone wants a magical solution to their problem, and everyone refuses to believe in magic.” – Alice in Wonderland
“People don’t like love, they like that flittery flirty feeling. They don’t love love – love is sacrificial, love is ferocious, it’s not emotive. Our culture doesn’t love love, it loves the idea of love. It wants the emotion without paying anything for it.” – Unknown
“It’s a beautiful thing to have lungs that allow you to breath air and legs that allow you to climb mountains, and it’s a shame that sometimes we don’t realize that that’s enough.” – unknown
“Damaged people love you like you are a crime scene before a crime has even been committed. They keep their running shoes besides their souls every night, one eye open in case things change whilst they sleep. Their backs are always tense as though waiting to fight a sudden storm that might engulf them. Because damaged people have already seen hell. And damaged people understand that every evil demon that exists down there was once a kind angel before it fell.” – Nikita Gill
“You come home, make some tea, sit down in your armchair, and all around there’s silence. Everyone decides for themselves whether that’s loneliness or freedom.” – Unknown
“When a person tells you that you hurt them, you don’t get to decide that you didn’t.” – Louis C.K.
“And then I felt sad because I realized that once people are broken in certain ways, they can’t ever be fixed, and this is something nobody ever tells you when you are young.” – Douglas Coupland Life After God
“Forgive them. All of your thems. The more thems you can forgive, the better you’ll feel.” – Karen Salmansohn
“Sometimes the fear won’t go away, so you’ll have to do it afraid.” – Unknown
“My love, you have too many smiles left in you to be so sad.” – Atticus
“Life advice: Always be the best person you can be. Be kind even when you’re tired. Be understanding even when you’re angry. Do more than you’re asked, and don’t ask for anything in return. Don’t silently expect anything either. Listen when someone talks, and really listen too, stop just thinking of how you’ll reply. Tell people that you love them and that you appreciate them. Go out of your way to do things for people. Be the greatest person you can possibly be and when you mess up, make up for it in the next moment or minute or day. One thing you should never do? Never spend your time trying to prove to anybody that you’re great, your actions will speak for themselves and we only have limited time on this earth, don’t waste it. If someone doesn’t see your light, don’t worry. Like moths, good people are attracted to flame and to light, and they will come.” – Unknown
“In order to love who you are, you cannot hate the experiences that shaped you.” – Andrea Dykrstra
“Sooner or later, everyone sits down to a banquet of consequences.” – Robert Louis Stevenson
“But the past cannot be changed, and we carry our choices with us, forward, into the unknown. We can only move on.” – Libba Bray The Sweet Far Thing
“We create the illusions we need to go on. And one day, when they no longer dazzle or comfort, we tear them down, brick by glittering brick, until we are left with nothing but the bright light of honesty. The light is liberating. Necessary. Terrifying. We stand naked and emptied before it. And when it is too much for our eyes to take, we build a new illusion to shield us from its relentless truth.” – Libba Bray The Sweet Far Thing
“The way sadness works is one of the strange riddles of the world. If you are stricken with a great sadness, you may feel as if you have been set aflame, not only because of the enormous pain but also because your sadness may spread over your life, like smoke from an enormous fire. You might find it difficult to see anything but your own sadness, the way smoke can cover a landscape so that all anyone can see is black. You may find that if someone pours water all over you, you are damp and distracted, but not cured of your sadness, the way a fire department can douse a fire but never recover what has been burnt down.” – Lemony Snickett The Bad Beginning
“You carry so much love in your heart. Give some to yourself.” – r.z.
” ‘You,’ he said, ‘are a terribly real thing in a terribly false world, and that, I believe, is why you are in so much pain.’ ” – Unknown
“There are two types of tired, I suppose. One is a dire need of sleep, and the other is a dire need of peace.” – unknown
” ‘You can’t love someone unless you love yourself first.’ Bullshit. I have never loved myself. But you, Oh God. I loved you so much I forgot what hating myself felt like.” – Unknown
“Numbing the pain for a while will make it worse when you finally feel it.” – Harry Potter
“She knew she loved him when ‘Home’ went from being a place to being a person.” – E. Leventhal
“The sun will rise and we will try again.” – Unknown.
See You Starside 