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.

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.

Angels

Part of palliative care is a reiki program. It is part of the volunteer program. Volunteers give clients in palliative care and hospice reiki to calm them and make their passing more peaceful. Though I had met with Lisa over 2 weeks ago I had not yet heard about seeing a volunteer or receiving reiki. I called on Tuesday, before my surgery, inquiring as to what had happened  to the reiki. In preparation for my surgery. Lisa sent someone out. As Laura walked into my room, she said, “Do you know you are surrounded by angels? You have lots and lots of angels surrounding you and protecting you. Before that moment I had not been aware of their presence. My brain had not yet been tuned into knowing that they were there. But in that moment I could see them, feel them, hear them, knew they were there. Now I wonder how it is that I did not always sense them. How could I possibly not see them. There is Poppy, Great grandma, Great grandpa, whom I’ve never met, Aunt Bren, Grandma Hauser, and a little boy and girl. I do not know the little boy and girl, but they are young children with curly blond hair . The little boys hair with a darker brown tint than the girls. The girl with nearly sheer white hair. Poppy is not old, but a young man. He is slightly older than pictures of him getting married with grandma. I would say in his early 30’s, though in heaven there are no ages. They choose a body for me because I’m still a form. Great grandma and great grandpa are also much younger (similarly in early 30’2) both with full heads of colorful hair. And I feel them surrounding me. Protecting me. I feel their wings against my cheek. Like fatherly light touches – butterfly kisses. I feel the softness and comfort and protection. When I close my eyes I see them waiting for me, patiently waiting for me to be ready and finish what I need to. As I drifted off to sleep during surgery they were all in the OR waiting for me, waiting for me to come and play, to fly with them. Oh what glory. I did not have my wings yet. But to fly through the air and feel the glory, the warmth of the sun as I bask in its sunshine. How I cannot wait to close my eyes. To feel them close to me. Close enough to know they are waiting for me, to welcome me into their arms when I am ready. In the meantime, they walk with me, hand in hand, until I’m ready.

DNR

I signed the DNR today. Probably one of the hardest things I've ever had to do, but it needed to be done. With as sick as I've been, I've been so afraid I'd end up in the hospital and either be too sick to talk or have the doctor not honor my wishes. I wasn't sure if I ended up in the ER and said I wanted a DNR if they'd listen.

I've had this infection for 6 weeks now. It's not getting better. If anything my cough is worse. I'm now bringing up blood in the trach. I don't know if it's because my lungs are irritated from all the coughing or if there is a granuloma or something, but I'm back to bleeding like I did at first. I cough, and it's like Freddy Crooger - blood everywhere. Disgusting. They are trying yet another antibiotic - zyvox. They don't really have any meds stronger than this. If this doesn't work, I don't know if they have anything else. If they do, I'm not sure I want it. We are changing the trach on Thursday. The thinking is that maybe if the infection has colonized in the trach, changing it will get rid of it. My breathing has been so bad. My lungs hurt so badly; the pain is immense. I've been waking up dizzy and with a massive migraine the past several nights. I know I'm not getting enough o2 while I sleep. Before the trach, I was using bipap at night. We knew I'd probably need to be vented while I slept at some point, though I never thought it'd be this soon. Of course, then I have to decide if this is what I want. I've realized in the past year or so, the reason I go to the hospital is that I get so I'm struggling so much that I start to get tired. The effort of breathing becomes too much. It hurts so much from breathing and struggling that I go to the hospital to get relief. That is the pain I am afraid of. The pain of struggling to breathe. To be suffocating and be terrified and not able to do anything about it, but if the pain is taken care of and out of the picture, then going to the hospital becomes unnecessary. I am trying so hard to stay out of the hospital. I have goals. I want to go to Disney. I want to make it to Christmas. I don't see the point in going to the hospital. They can do the IV antibiotics at home. If they put me in the hospital, I want them to guarantee, I'll come out. The only reason for going to the hospital is so they can vent me, but if I were to go on a vent, can they guarantee I'll come off? Now I know they can't guarantee this 100% with anyone, but baring something unexpected happening, they do so with at least a 97% certainly they'll leave. At this point, I don't know if they can even give me a 50% certainty.

The hardest thing about the DNR is I didn't want it to seem like I was giving up. I'm not. Not by any means. But if dying is the goal, the end result, as it is with hospice, then what would be the point of coming back. If it came to the point that I need CPR, I am already clinically dead. I don't want to be brought back. In addition, for most people, CPR has it's consequences. They may bring you back, but for what? You are not the same. Your quality of life is not the same. If they could bring me back and I would be better than I am today, then it would be okay. But even if they were to bring me back to how I am today, I don't want it. To me, this isn't a quality of life and at some point It does have to be a quality not quantity. Right now I cannot live life and enjoy it. I am grateful for the trach and the time it has given me with my family and friends, but it isn't a quality of life. I could not imagine living like this for 5-10 years. The DNR was a difficult decision, but the right one. Now that it is done I'm much more at peace.

Today mom told Sher and Brenndan about what was going on and that I am now in palliative care, and what that all means. This becomes more real every day. I have been trying so hard to make this easier for my friends and family. I feel like I need to/want to protect them, protect them from the harshness of all of this. It is never going to be easy, but I want it to be as easy as possible because though it may make it harder for me at first, I'm the one that gets to go. I'm the one that will be in a better place, free of pain. It has been so hard. I have struggled to breathe for so long that I don't even remember what it is like to breathe easy. I have carried oxygen so long that I don't know what it is like to go without. Yet in the near future I will be free - free of the confines of this body and the limitations it presents. My pain will be ending, but theirs will just have begun.

When I think of not being here, it makes me sad. The palliative case worker that came today mentioned that I am grieving. I hadn't thought like that. I acknowledge that those around me are grieving, but you don't really consider that the person dying also must grieve. Sometimes the loss I feel hurts so much, to know that I will probably not see any of my siblings get married and have families. I will not know my nieces and nephews. I may not see Brenndan graduate from high school or college. I won't get to see what remarkable men they will grow up to be. I see them now, and I am so proud of them. I am so proud of my sister and what she has become. They are all so young, especially Brenndan. It isn't fair. He's only 15. He shouldn't have to deal with his sister dying. He is only a baby; so young. He has never really gotten to know me not being sick. For all he remembers, I was sick. I wasn't able to be there as much as I wanted when he was young. We always thought there would be more time. And now we're out of time. This just shouldn't be happening. He should not be having to face this so young. He lost Poppy and now he'll lose me. The thing that frustrates me the most is that there isn't anything I can do about it. I can't stop it from happening. I can't make it better. I can only be here now and make memories with him now. It's just so unfair. Each of them are so good. They don't deserve this. My mom, she doesn't either. She's such a good mom. She isn't perfect. She's made mistakes. But she's been there for the important things. She's done the best she could, and that was a really good job. No parent should have to bury their child. All of this just breaks my heart. So I guess the hospice worker has it right. I am grieving. I am grieving the loss of those I love and the loss they will experience. I feel anger that I can't change things, that I can't stop this from happening or stop the hurt they will feel. I can't make ti better.

I think one of the hardest things about this is telling people. Knowing that I am hurting them and knowing that it will only be harder and only get worse. I wish I could save them from the pain. I wish I could protect them, but I can't. Not telling them doesn't protect them or save them from hurt. It shortens the time they have with me. I feel I need to give them this time, this opportunity to spend with me and do things, make memories, before I'm no longer here. But it hurts me to hurt them, because I love them so much, and that will, never change. I will never stop loving them, even when I'm not here. I know that this time is a time that is all about me, but I need to make it be about them as well, because they are my support system, my life, and my love. My time here is short, I know that. I can already see it, though others may not. I try to deny it. I try to imagine that I will get better, that I will be able to move into my own apartment and live a life, but realistically, I know this isn't true. I am only able to lie to myself for small periods, and even then, I know it's not true. The periods I am able to deny reality get shorter and shorter. I am sick and I would never wish this existence on anyone. If I do anything one day, I then sleep for two days to make up for it. I sleep all the time. I try to deny the changes, but it's hard when it's right in your face. Denying it, won't help. It won't stop it from happening. It won't give me more time or change circumstances. The facts remain the same - I am dying. It sucks. It's not fair. I try to be patient with my friends and their needs. I know this isn't easy. I've been sick for many years. In some ways that fact makes it harder because people are used to me being sick. They are used to me being in the hospital, even in ICU and on respirators. I always get better. It desensitizes them. We've talked about my death. My close friends have listened when I talked of my fears that I was going to die before I was ready. But I don't really think any of us really wanted to believe these were anything more than fears. We didn't really think this day would come. But it has...

The one thing that really gets me choked up and cry is the idea of all those I love left behind. What it's going to be like when they get the word that I'm officially gone. All those years, that I attempted suicide, not once did I really think about it. I didn't consider death and what it really meant, but that is the difference between suicide and true death. Suicide is done out of anger. It is selfish, where all you're concerned about is yourself. It's a giving up. it's going in the corner, curing up in a ball, and dying. It's black. True death is the opposite. True death is white. It is selfless. It is not giving up or giving in. It is acceptance. I worry about my friends and what it will be like to them to lose a good friend, for some we're so close, we're like sisters. I worry about my siblings. Losing Poppy was devastating and hard, but this... I don't know... Parents shouldn't have to bury children. It hurts me just knowing the hurt they will feel. Yes, I know they'll move on. Life is for the living, and gradually, they'll move on because they'll have to. There is no choice. I know that gradually it'll hurt less, but the hurt will never completely go away. Someday we'll be reunited. Just as I know I'll see Poppy when I go to heaven, I'll be waiting for them.