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The road is well traveled. You are settled in and starting to slow down, even planning to start resting and relaxing more. Then in a blink of an eye it all changes. There are no more easy nights with your partner, talking about your day and what you did or didn't get done. It's just over, and you realize you miss it, how much you would give to go back to that struggle and not face the new one you are presented with. To just want the rat race you once couldn't wait to get out of, because now that you have all the time to enjoy life together, it is just too hard to find the enjoyment. This new roller coaster is too curvy and its twist and turns too rough. Throwing you and your world upside down, back and forth, and too rocky to take it slow. You both want it to end as soon as possible and go on forever because in the end what you can have isn't the one you want. Never knowing just what it is you're praying for but knowing you just gotta pray, wanting to scream but unable to find your voice, cry but no tears left... this is what we are living.
The Diagnosis and Start...
In December life changed again in a way we never thought would affect us. My step-mother Laura went to her job as a medical office manager and seemed fine; just tired and a little stressed. Things didn't stay normal though as she started slurring her words and having trouble walking. Dad arrived and took her to the ER where he suspected the outcome would be a slight stroke. Instead after being in the hospital overnight, the diagnosis is devastating. Laura has stage 4 Glioblastoma. This is a cancerous brain tumor that has no cure. To prolong her life and treat the cancer she had to have emergency brain surgery to remove a strawberry-size tumor immediately, and she spent 12 days in the hospital going home on Dec. 24th 2016. The doctors said it went well and she started walking with Dad for exercise and prepared to start chemotherapy and radiation treatments. However, before the treatments could start, the tumor returned and Laura had a second brain surgery to remove a tumor that was 1 and a half sizes bigger than the first tumor.
The doctors had warned us that this often happens with GBM and it is fairly normal. Normal isn't a word that applies to this situation, and not one we wanted to hear. Dad and Laura's life was over as they knew it because of cancer, and a new journey was starting. Dad is determined to be with her every step of the way, and let no one stand in his way of making her new life as enjoyable as possible.
This is harder than people think because everyone has a different idea of what Laura needs to be happy and comfortable in this new stage of life. Dad is fighting daily to keep things as normal as possible while adhering to the demand of being the main caretaker of Laura. This is extremely hard on him physically, emotionally, and financially.
Dad is retired, living on SSI which barely covers his rent, he cannot return to work at this time due to both his own physical restrictions that being 70 has brought on and the need to care for Laura. So they cut back on things that they didn't feel were necessary. He includes Laura on all decisions as much as possible. To continue paying bills and paying for her treatments and medicine Dad has set up different fund raisers and started selling off things they no longer need.
Even this is hard because he isn't real good on a computer and it is hard for him to get someone to help him. During all this, it is still such a fight to get the medical staff to listen to Laura or Dad. We constantly hear how one or another patient reacts or did. When anything happens to her or she gets sick it is always, "Well you know she has a brain tumor." It's like no we forgot, but what does that have to do with the fact she fell and hit her arm, other than she was unsteady because of being ill. The brain tumor didn't hit her arm and make it swell, the fall did. Two complete trips to the ER, and two different doctors to find out what was wrong with her arm. Guess what the brain tumor didn't pinch the nerve, the fall did.
When did she cease to be a person and become a brain tumor? To her family, she is still Laura, wife, mother, step-mother, and daughter. To the rest of the world it seems as if Laura has already died and been replaced by a big walking tumor that looks like her. I am sure we are not the first family and wont be the last family to feel this way. The kicker is that the very services and specialist that are put in place to help individuals with their cancer journey are the worst at listening if you have a difference in opinion. They seem to be of the mind we have seen and know it all and there is nothing anyone dealing with it can tell us we don't already know. Forgotten is the individuality of each patient, and how they react to treatments, their thoughts, and feelings. It's okay to be mad and upset, we understand. It's all lies unless you have lived it or loved someone who lives it, you don't understand and since each person is different, they feel and process differently so not everything will be the same.
In my Dad and Laura's case, they are continuing to look into different treatment options to help her. While doing this they are monitoring closely which treatments they try, to keep the damage and repercussions to the rest of her body and organs to a minimal. This way there is less damage to repair as other treatments are tried. At this time, hemp oil and THC seems to be keeping her tumor from growing, but it isn't shrinking. It also helps with her anxiety and pain. In addition to this, it helped tremendously with the side effects of chemo and radiation. So they are blessed to live in a state where this form of treatment is legal.
However in another way it is a curse, because Laura's medicine makes it illegal for her to travel outside of the state she is in. Causing them to continually delay plans to see family members and attend family events. Also is the fact that her insurance only covers the state she is in, yet it should be federal. So to see a family that lives in other states, they would have to break the law or drive back to their home states to administer meds.
This is very sad as all Laura wants to do is ride in the RV that was loaned to them and travel. When riding in the RV she is more carefree and happy than she has been in months. It opens up the outside world too. She takes less pain medication and it is easy for her to help herself up, and get to and from the bathroom. A hover round helps her to get around outside also on loan as long as needed. This gives her freedom from the ongoing thoughts in her head, allowing to concentrate on something other than being sick and in pain.
Problems are if they decide to travel via the RV they no longer will qualify for the very little bit of help Dad gets. No more shower aides, OTC, PTC, or nurse to come out. Her parents also are against them traveling, although they do see that being out and about in the RV helps her, so they are fine with drives around the general area.
With everyone having their own way they want her care and "life" to go the person a lot forget about is Laura. I am continually asking Dad what would Laura do if this situation were reversed. If you told her you wanted to travel, would she travel for you? If you told her you wanted to try different treatments or medicines would she work to make them available for you? Would she blindly listen to others or keep fighting until she got her answers, and was at least satisfied it was the best answer, even if not what she wanted to hear? I believe that Laura and my dad know what each other would want more than anyone else even their own parents. Although Laura is close to her mother and father, I do not believe they know her as much as her husband.
I believe that with all the good and bad times they have gone through together their bond has grown to where they are almost like one entity. They do for each other without thinking about it, it just is. I have seen it for myself. I have witnessed Laura on her worst days when she is mad at everyone and everything, stop and look at my dad and say she is sorry and loves him. I have watched her realise he is having problems helping her and pull away and take a fall over letting him get hurt. No matter how sick she is always reminding him to eat, and take care of himself, including making him promise to drink water when he is out in the heat. In return, I watch him do everything he can for her, maybe more than he should and never resent her. I see him get up and get them both ready for the day, cook and serve her meals, give her medicine to her. do laundry, shopping, and pay bills. Then instead of resting when she naps, he is going through stuff pricing it to sell, or online looking for answers.
When we tell him he still needs time for himself, it goes in one ear and out the other because all he sees is Laura. He knows she is hurting and he is mad because he can't fix it. Even when she is having a "mean" day and taking it out on him, he is patient and kind. He works hard not to let her see how much her outburst hurt him, and he never reminds her of them. He just tells her she is his world, and he would do anything for her.