Today is but a Day

Today is today.

Today is tomorrow.

Today is yesterday.

Yesterday is today.

Yesterday is tomorrow.

Yesterday is yesterday.

Tomorrow is today.

Tomorrow is tomorrow.

Tomorrow is yesterday.

Today is but a day...

Today, Tomorrow, Yesterday.

Dedicated to Helen and the wonderful VITAS hospice team. Thank you for changing the life of my family and myself. Thank you for being there in my final hour and doing everything in your power to ensure that I am kept comfortable. Thank you for sharing my journey and for being my guiding angels. Today is all that we have, all that we are promised, and in that one day, lives can change. Live each day, and only that day, and in that a lifetime will be made.

help

There is nothing easy about this. All our life we work towards the goal of being independent, completely independent. With each step we take we becoming stronger and more self-sufficient. We are no longer trapped by the confines of needing others, and yet at the moment, I must defy every part of me and do the opposite. I feel as if I am no longer a person, but rather only the shell of one. Instead of reaching for the goal of being more and more independent, I growing more dependent by the day. I fear the words that I must say, "I need help."

Three little words. One would not think they are so difficult. No one can be completely independent. Everyone needs someone, but when every aspect of your life depends on someone else, this takes on a completely different essence. Someone helps me do just about everything all day long, and at times it cuts into me. It tears me down. In a time in my life, when I would typically be going off and proving my idenependence - getting a job that I did all by myself, becoming an expert in my own career, living on my own, handling my own relationship, possibly creating new life myself and stearing them towards the goal of becoming independent; instead I become more dependent each day. Help me dress. Help me bathe. Help me eat. Help me breathe.

I started dressing myself when I was one years old, and I know I have to ask help to put on and take off my pants. Nov I get in trouble if I do it myself because it is seen as wasting my energy and because that is what the aids are for. However, it is very disconcerting to need to have someone help us. As a society as a whole we want to be completely independent. We don't want to "need help", and this is why asking for help is so hard. But God never intended us to be completely independent. If He had intended us to live and be completely independent, He would have made us solitary beings each on our own private island to have no interaction with anyone. but that is not how He made us. He made us to lie with people, and our survival depend on their survive.

Asking for help is one of the hardest thighs we have to do. Three simple words, "I" "Need" "Help". Why? Why are they so hard to say, when in reality none of them is longer than 4 letters strung together. Yet when we say those words "I need help", we feel weak. We are ashamed at needing someone else for help. We are ashamed and feel like a burden to others. But none of this is true. Needing help, especially needing help as I now do, is a very humbling experience. You are purring your care into the hands of someone else, giving them the control that you have into their hands. This is very difficult for us. For some reason, we are always trying to prove that we need no one and can do everything by ourselves.

I think back to when Mary Magdalene washed Jesus' feet. It has always been viewed as something Jesus did for her, as if she wasn't even close at being the same caliber of human. But now that I have become so dependent on the help others, I realize what a humbling experience it must have been for Jesus. He had to take his trust and put in Mary. He had to give up the instinct t just do it for her instead of letting her do it for him.

In some ways having someone care for me is similar. I have to trust in them. It is hard to give up that control. Some things are so ingrained within you that you don't even consider having someone else do it. I've pulling up my pants for 28 years, Similarly, I clear off the table without even thinking. It's not that I don't need the help, but things are just automatic. It is the reason I typed up the way I like things to be done. I must gave up control, be humbled, and let them do what they are meant to do. I must learn to say.. "I need help."

Rose Colored Glasses

You look at me through your rose colored glasses telling me the words you think I want to hear. You live your life in a fantasy where everything ends as happily ever after. You wave your magic wand as if to make it all go away. But I do not live in this world. My world is one of fear and sorrow. Happy endings rarely exist.

You hide behind you rose colored glasses to hide from reality. You may think these words or those that I want to hear, but rather they are the ones you want to say. You refuse reality. You say it is to help me, an act of selflessness. But no. You are the selfish one. These words are meant to make YOU fell better. I feel anger as you defy the truth. You belittle me by giving me your platitudes.

Take off those glasses. Be strong and accept reality, my reality. This is no fairy tale, but rather a world of stark truth. Yet though there is dark, there is light. Joy and pain. Fear and Hope. Take off your rose colored glasses, and you will live again.

Breathe Easy

I lay there as I look at you breathing. In. Out. In. Out. I see the muscles move as you fight for every breath. You are a fighter. A courageous warrior. You do not give up. You do not give in. You fight with every cell in your body. I see the hurt in your eyes. You are so utterly and completely tired. Yet you continue. In. Out. In. Out. You may not have leaped tall buildings. Or saved the world from impending doom. Yet, you are a hero. My hero. With every breath you take, a battle has been won. Others cannot possibly understand the fight you face every moment. They run. They play. Yet you cannot even remember what it was like to breathe easy. Did you ever breathe easy? Each breath for you is a championship won. I look at you with love and admiration. In one breath, you accomplish more than others can in a lifetime. I can only hope to be half as strong as you. In. Out. In. Out.

In honor of those who fight so valiantly against lung disease. They are true heroes.

Sacrifice

My heart breaks. I cry the tears of those that are lost - the warriors of this disease. They are children. Too young to be sacrificed. And sacrificed is what they are. It is not their time. They are but young innocent souls. They have yet to unfurl their beautiful butterfly wings and fly through the world. They haven't breathed the beautiful air or felt the sun on their face. They haven't yet felt the sand in between their toes, nor the wind in their hair. They are young, so full of life and opportunity. Yet all too soon they are taken from us. Why? Why I ask, as I shake my head in tears. I hold my heart in pieces, those that are no longer with us. I hold them as a piece of my heart that they have taken with them. The tears stream down my face as I cry out their name. Why? Why? Why did you take them? They are only a baby in this world. So much more to live. So much more to love. A world of experiences awaiting them. Yet, you took them. You ended their life before it was yet to begin. Why? Why? Why?

In memory of Cynthia Martinez, a beautiful and wonderful person, who touched the life of so many. A CF Warrior. May she breathe easy.

Also many others, whose life was cut too short by CF and other lung diseases. May you all breathe easy.

It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.

I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.

I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.

Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.

Transition to Hospice

I had my IVIg today. I have enough Igg for one more infusion, and then I either have to order more or stop the infusions. This is such a hard decision to make. My goal has always been to make it to Christmas. I was trying to hold off transitioning into hospice until after Christmas because it was very important to me to make it to Christmas and have an enjoyable holiday with my family. I have pretty much reached my goal and think that even if I were to go into hospice now, I'd still be here to enjoy Christmas. The hard part about all of this is deciding when to stop the Igg. I finished my last dose of IV antibiotics today. I have decided that this is my last dose of IV antibiotics. I won't be doing anymore antibiotics. Though this was a difficult decision to make, it is not nearly as difficult as deciding when to stop the Igg. Since September I've been fighting this infection. I have been on countless different IV antibiotics. Despite all the antibiotics, I still have the infection. Nothing seems to be killing it. The infection seems to start to get better when I start on the IV antibiotics, but somewhere in the 14 day course, the antibiotic seems to stop being effective, and the infection once again takes hold and gains the upper hand. I have just come to the point that it doesn't make sense to keep doing different IV antibiotics when they don't seem to be helping. It makes no sense to put these drugs into my body, medications that cost a lot of money, when they don't seem to be effective. There comes a point where you have to say, enough is enough. I am tired. My body is tired. I am the one that does all the medications. I don't have someone who does it for me, and as I grow weaker, as I decline and get sicker, even the simplest of tasks becomes overwhelming.

I tried to talk to Kathy again today about hospice and discuss with her that I was getting closer and closer to transitioning into hospice. She refuses to acknowledge reality. She wants to bury her head in the sand and live in denial. I know this is hard for her. I know that she has come to care deeply for me. I am not just a client/patient. I am more than that. I am like a daughter and a friend. She does not want to lose me, but denying reality is not going to help things. It won't make it different.

She looks at this as me giving up, throwing in the towel. But I am not giving up. Had I just been diagnosed and refused to even try treatment, that would be one thing, but I have done 6+ years of treatment. I have done IVIG. Most people do infusions once every 3 or 4 weeks, I do them once a week. I have given my life up to this disease. First I gave it my career in nursing, then I gave it my career in research and my Ph.D. I gave it animation and finally my tutoring. I have done the treatments,the tests, the medications. I have gone for 2nd and 3rd opinions and consults. And what have I gotten in return? She wants me to seek another opinion, but I have already done that many times. The only thing the doctors in Boston could offer me is more questions, no answers. If there really was hope that they would figure things out and find a treatment that would help me, I'd be more than happy to do it. I don't want to die. But, there are no answers. She says to me, "But they don't have a terminal diagnosis. They don't have an organism that is causing this severe infection." This is true. I could go to countless more doctors and undergo many more painful and invasive tests in hopes of having a diagnosis or coming up with a cause for my decline, but to me this is not important. It may make my treatment providers feel better. They will have answers and an explanation. They may feel less like a failure, but to me it is not worth it. The diseases and diagnoses they would be looking at are for progrssive terminal illnesses. Is it that important to have a reason why when there is no treatment? It won't change things. The result will still be the same. I will still be dying and there still won't be anything they can do to prevent it. The difference will be that I will have wasted some of the precious time I have left in doctors' offices or hospitals, undergoing painful and invasive medical procedures. For years I have gone from one specialist to another. I have heroically withstood procedure after procedure. I rarely cried or complained. I took the tests and treatments with strength, hoping that it would lead to answers, but it didn't. Now that my time is coming to an end, I dont want to waste the precious time I have doing procedures and tests. I want to spend the time I have with my family and friends, enjoying the time I do have and making memories that will last after I'm gone. It kind of reminds me of last summer when Abby got sick. The vet offered to do an X-ray and blood work and other tests to fully diagnose what was going on. When I asked how this would change her treatment protocol, I was told that it wouldn't. She'd be given the same medication. The difference would be they'd have a concrete clinical diagnosis. I chose not to have the tests done and instead just give her the medication. Why put her through those tests and be charged the extreme fee of having the tests when the treatment would remain the same. Even if I did all the testing, it wouldn't change the treatment. It may make my doctors feel better because they'll have a concrete cause of why this is happening, but it won't change anything for me. I will still be dying.

I understand that this is not a position that doctors are comfortable with. They went into medicine to save people. This is especially true because I'm so young. If I was 70 and had lived a good life, they would not have as hard a time accepting this as they do with someone my age who has not really even been given a chance to live. They feel powerless, and they feel like failures. But I don't view them as such. I am very grateful because they have given me more time than I would've had otherwise. Though the trach wasn't a cure, it gave me more time. Even an extra couple of months is something to be extremely grateful for, but it is important to realize that medicine doesn't have all the answers. It can't cure everything. There are times that things happen that we don't understand why. It may seem unfair. But I hold no anger at the circumstances. I am very grateful to have been given what I have. Medicine doesn't have all the answers and it can't fix everything. There is a time when you have to give it up to the Lord, and trust in Him. We like to think that we have control over all things. In truth, we have very little control over things.

I have found that how a person responds to me and the fact that I'm dying largely depends on how comfortable they are themselves with the topic of death. Death is a natural part of life. We are all dying. From the moment we take our first breath, we have already begun to work towards taking our last. Some of us are dying sooner than others, but the fact remains, we are all dying. It is impossible to escape this. Death is a natural part of life. While many view it as the end, in reality, it is just the beginning. I embrace this time of my life. I have struggled and suffered for many years now. My body has grown weak and no longer has the ability to fight. Instead, it embraces death as a freedom from the pain and suffering I have endured.

Right now life is such a struggle. Every breath hurts. The purpose of the trach was to increase my quality of life. Though I am grateful to have had this time, my time here on this earth is coming to a close. Every person has their line of things they are willing to tolerate, and the point at which they say enough is enough. I have reached that point. I am tired. I am weak. My body is weary and needs a rest. It is tired of fighting to live every day, every moment. I have fought so hard for many years, but now it is my time for peace, time for my suffering to come to an end. I do not have a quality of life. Kathy often says that she would never be able to do the things I do every day. If she would not want this quality of life herself, then how can she expect it for me? Do I not deserve to be free of suffering? I am not giving up. I have done treatment and therapy for many years, but what is the point if it has no benefit and only increases your sufferring? Don't I deserve to be at peace? She asked what terminal diagnosis I have. I don't have something concrete such as cancer. But I know that I am dying. The infusions are no longer working. All the medications I take and therapies I do seem pointless. If they were working, I wouldn't be in this position, and if they truly aren't working, what is the point on continuing them? There comes a point when you have to reach acceptance and give it up to the Lord. I am yours God. Your will be done. I know that I am powerless. I have no control over my life and death. If I am meant to die, nothing on this earth will keep me here. In the same way, if it is not my time, I will not go. Whether I go into hospice or not, will not matter. Going into hospice won't make or prevent me from dying. It will, however, determine my comfort level through my final journey.

The hardest thing about all of this is giving up the Igg. Logically, I know that it is no longer working. If it was, I would not be as sick as I am, but actually stopping the Igg is a difficult step. I don't want to die. If there was another option, if I were to get better, if there was a treatment, I'd be most happy. Since being diagnosed, I have fought for my Igg. To me, Igg is synonymous with life. No Igg is equal to sickness and death. Though I know it isn't working and doing no good, giving up the Igg is a true step of accepting that I will die. I know that when I stop the Igg I will get sicker and my pain will get worse. I am terrified of sufferring, of feeling like I am suffocating to death and not be able to do anything about that. This is what I am afraid of. I do not know what scares me the most, the idea of dying, or the idea of living indefinitely like this. I don't understand how people can say they wouldn't want to live as I do but then judge me and expect md to continue to suffer in this way. I have no quality of life. My body is dying. It is shutting down. It scares me to see how I have deteriorated. I can no longer shower myself. I am too weak. When I came home from rehab my weakness was due to muscles being weak. This is no longer the problem. The problem is not something that can be treated with physical therapy. It is a result of my body shutting down. My lungs are bleeding and falling apart. There is no way to treat this or fix it. Each breath is immensely painful. I can no longer do things for myself. I need help showering and dressing. I am no longer independent. I can't drive. I can't just get up and go somewhere whenever I want. I am reliant on others to get out of the house. I can no loner walk. I can't tutor. I tire so easily and after being awake for more than 2 hours, I am so tired that I must sleep. I fall asleep talking in mid-sentence. Technically I need to be vented, but I really don't want to go that route. I grow weary at having to do everything, care for everything myself. It is a daunting task. I ache. I hurt. I pray for relief. Hospice will give this to me. This is not easy. No person my age should have to be making these decisions. People make this process even harder by judging me. How I wish they could accept me and support me in whatever I decide is right for me.