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.