Recently after some new blog posts and decisions I have made , which I expected people to express their opinions about , I have been doing some thinking and contemplating things I am being told and done around me and have come to a few conclusions, I am not a martyr or masochist who likes to endure pain rather i prefer to deal with the pain than the alternative heavy drugs and side effects not to mention possibility of being restricted to a bed in a hospital that is not for me, if you ask why the answer is simple after all I have been through I have a tremendously high tolerance to pain meds example I was on 600 mg of morphine a day and still functioning and walking around . second I have tried to be available and open to seeing people even when I am in terrible pain and at times people have opted out or asked to reschedule because they have had a busy crazy week or forgot about our appt this will no longer be accepted or treated graciously as I have in the past my time now is very precious to me ,in simple terms if you ask me to meet or schedule something with me and then reschedule do not expect me to be ok with this or accept . Third people tell me they wish they could take away my pain honestly none of you would want or could handle the pain and issues I go through yes I would not wish this on my enemy but it is my burden to bear
I had someone ask me to explain what is going on in me medically in simple or layman’s terms , so here is my attempt at that .I am battling 5 different cancers currently two brain tumors lymphoma in my chest osteo sarcoma or bone tumor in my right femur [thigh bone] and my genetic multi system cancer and all of its affects, so what does this mean , well the tumors in my brain one could be operated on and removed but doing so would put me at risk by exposing the other tumor to oxygen which could make it grow even more quickly not to mention the risk of putting me under general anesthetic to do operation I may not wake up. next the lymphoma if i were normal Dr. would go in and remove affected lymph nodes then potentially give me chemo and radiation, not an option as with above and surgery and my genetic cancer feeds off radiation, osteo sarcoma only way to deal with it would be to remove my leg at hip something I am not willing to do,and again risk of major operation and not waking up, then you come to my genetic type which currently involve a cyst in my jaw which is attached to two of the few remaining teeth I have left on my lower jaw and is eating my jaw at same time , the treatment would be to go in remove cyst and teeth and then use liquid nitrogen to spray and freeze surrounding tissue and bone to make sure they got all of cyst as it is that is not an option so I wait for potentially my jaw to break without warning, there are also several skin cancer lesions that need treatment but why put myself through more pain for such lil help so I hope this gives a simplified explanation of what I am facing not to mention the increased pain and pressure in my skull from the tumors and their destruction which regular pain meds can not help with , my only options for this would be to go into hospital be restricted to bed due to amounts and types of drugs would have to be given to try to ease my pain . I hope you understand why I do not choose that option
I have made a difficult decision and have started the process of going forward with Death with Dignity which is legal in the state of Washington , this is not something I do lightly and have already run into resistance and issues with DSHS and Medicaid over wanting more medical information and tests to approve the referrals to Psychological Dr. and Pain specialists as is required by the program, These delays could take months which oi may or may not have . It is frustrating depending on others who do not have knowledge of what I am going through to make decisions that affect me. I have made this decision and whether you agree with it or not the final decision is mine, I hope people will respect that .I have endured a tremendous amount of pain and suffering which continues to get worse but I now have to look at quality of life versus quantity
so over the weekend i started noticing symptoms which led me to believe i have hernia in lower abdomen . I talked with Dr. this morning and he agrees but here is the catch to fix it would require operation but with the advance directive and POLST , physicians orders for life support treatment,I have in place no surgeon will risk doing it unless I rescind my advance directive so i am screwed either way I go. I have decided not to have operation and endure more pain for as long as i can , people will not agree with this ,but let me ask how many of you have been in my shoes or through as many operations as I have , probable answer NONE so as I said is a catch 22 am screwed either way I go
Recently I had a friend ask me why I am not more involved and helping with homeless issues as i used to be, the answer is I have had to make some difficult decisions and changes in my life for me , I do not have all the strength and energy I used to and even though advocacy is still a passion of mine I have had to dial back my efforts and do things more behind the scenes . I have withdrawn from different agencies and things i used to be involved in and support though i still try to do little things here and there though I don’t talk about them much, I have been quietly trying expand distribution of my book but not on a profit basis rather trying to educate and open Peoples eyes to the true meaning of homelessness and poverty and disability issues , Yes I have been accused of forgetting where I came from and what I and others have been through that is far from the truth ,I am just not as visible or out there in the lime light as i used to be, I have been doing advocacy work a long time and have learned where and when to express my thoughts. So let me finish this with this statement my choices and life are mine if you do not like them get out of my life!
after losing a dear and long time friend Monday night in Portland or ,i am really struggling with the choice to keep fighting my battle, my body is failing the pain and pressure in my head is getting worse and am watching myself withdraw from things and people because I do not want them see the pain I am in and how difficult the fight is becoming . part of me wants the pain to end but there is only one way that happens and not very many are ready for that . Though to be honest I have been researching ways to end my troubles
I didn’t ask to be born with cancer but I was, I didn’t ask to be put through thousands of operations and procedures but I was ,I didn’t ask to be disfigured and changed physically but I was , I didn’t ask to be mistreated abused physically ,emotionally and mentally but I was, I didn’t ask to be an inspiration but I guess I am ,I didn’t ask to be a hero to others but I guess I am ,I didn’t ask for a lot of things that have happened in my life but they have happened and made me who and what I am, but soon all of this will come to an end ,I didn’t ask for the pain and suffering I have been through but better me than others