Please support Joy after a bone marrow transplant

Hi, my name is Joy. I am 52 years old; although, I had a bone marrow transplant in August 2019, so in transplant years I am 3.5 years old. :)

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I feel that time and energy are precious, and I appreciate you spending a bit of each 'with me', as you read through this. Thank you!

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If you are reading this, you likely know me, personally, or have been referred by a loved one or friend who personally knows me.

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In case you're already familiar with my story, or already know you'd like to share a financial gift with me, I'll open with the ways you can be most helpful.

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The section after this will be a short version of how I came to need support, followed by a more detailed version, for those who are interested.

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One note: You might think it's 'easy' for me to ask for support. I'm learning, but it's still challenging - especially now, when so many people are needing extra support, due to changes from the pandemic, and/or have their own health issues or family crisis. I'd much rather give (and I do give in all of the ways I can), but I also know the joy I receive from giving is only possible when someone can be specific about their need, and receive in what they are asking for.

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Without community care, my cancer journey would have been far worse; but, I can only receive community care if I ask for it. So, I'm learning to ask.

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I've mostly been met with compassion, understanding and generosity. And, I'm very grateful for that!

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I share this in the hopes that you are encouraged and/or inspired to ask for what you need, in your own life (whatever form/s those needs are).

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Ways to be most helpful

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If you decide to share a monetary gift, that would be much appreciated! (every dollar amount is helpful!) Thank you.

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If you are unable, or choose not, to share a monetary gift - that is understandable. Good energy to you, as your path unfolds.

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If you'd like to offer non-financial support, every word of encouragement, prayer and/or sharing of good energy, and/or sharing of this campaign is helpful and much appreciated! Thank you.

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I appreciate *every ounce* of support, far more than I can express! Thank you.

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The short version of why I need support

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I'm at a point in my bone marrow transplant recovery journey where it seems (from lab results and testing) that I'll be here (on Earth) for more than a short period - as far as cancer goes. I'm in remission, and my counts are solidly and consistently excellent. I had a check-in with my oncologist, yesterday - who confirmed my remission status and good blood counts.

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This is the first time since my cancer journey began (in November 2018) that I feel I can look beyond survival, and start planning for a year, or more, of living. (Since my diagnosis, I've been living day-by-day on 'predicted limited time' given to me by my medical team, so to even consider a future, from here, is *very new* to me).

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I don't have a partner or significant other, or a birth family unit that is supportive, so I've been navigating my way through all of this solo - as far as research, advocating, managing my care, and decision-making in every area of life (while also being the person with cancer, and going through treatment). I do have a supportive, compassionate circle of friends, as well as a caring circle of people worldwide from my online community. (I worked online from 2007 - my cancer diagnosis, teaching and coaching about practicing presence to unfolding, which is a form of mindfulness.)

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I'm at a *very pivotal*, significant turning point in this part of my cancer experience. I'm having to rebuild my entire life, from the bare minimum. I've gotten here - through so much uncertainty - with a lot of spirit and spunk, faith, community support, and a mix of practical and intuitive steps, one choice, one movement, at a time. Sometimes, I unknowingly made missteps and had to correct or fix that. Usually, my decisions have unfolded well. Somehow, it's worked (because I'm here).

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It's been a stretch in all ways. I'm proud of myself, for how far I've come, and who I am becoming.....but/and, I now have so much to rebuild. On my best, most centered days, that's exciting. On most days, it's super overwhelming!

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Obviously, a big piece of this is needing to generate consistent income. I'm choosing to find a f/t customer service or administrative job so that I can experience reliable steady income, and hopefully health insurance, as well.

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I had just begun to apply for jobs, in November, when I got sick with covid and had complications through to now. So, now here I am, ready to try again.

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I am asking for support for seven months - which is the remainder of my current apartment lease. That gives me a reasonable amount of time to look for, and secure, a job or jobs, and also pays for my health insurance during these months (which is very expensive, but necessary). I need to make wise, practical choices, and knowing that my rent is paid, and I have food and insurance, will give me a good foundation to make those choices from.

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For the past few months, I've been asking for support from my online community. I'll post the remaining amount I need to cover that month's expenses, and hope that monetary gifts cover that amount. Some months they do, some they do not. It's incredibly stressful, and not sustainable, thus this GoFundMe campaign.

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You might look in and think that seven months is a big buffer - but I know logistically there are some challenges (for example, that I don't drive, and I'm not geographically near much that is cost-effective to get to, and that I've had a long pause in my work history and I am risky health-wise).

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It is my hope that if you are looking in, it's with compassion and care, and you are thinking 'she's been through quite a lot and is asking for exactly what she needs' and are maybe even inspired or encouraged to ask for what you need in life, as well.

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(Also, I am not asking for advice. I am sharing enough information so that you get the gist, but there are so many threads weaving together to have created this, that you don't know the whole story and/or what I've researched and done, or my beliefs, and it's hard to give healthy or helpful advice without knowing all of that.)

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The longer version (if you are interested):

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The general 'arc' of the recent chapter of my life - which we can call 'the cancer journey' - has been one of a very unexpected, surprise, terminal MDS (blood cancer diagnosis) accompanied by great loss, followed by a literal 're-birth' (with my bone marrow transplant, on August 29, 2019), followed by recovery which was intersected by a pandemic. Oof.

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I entered my cancer journey very under-resourced: without a supportive birth family unit, partner or spouse, financial security or savings, or a home that I owned.

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As a single mom of two (now young adult) children, my priority was to raise them with minimal external daycare, and I managed that, which I'm grateful for. I was self-employed, teaching presence via an online portal, and I supplemented that with p/t customer service and nanny jobs.

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Then, the summer before my unexpected cancer diagnosis, I decided to move from So Ca to O'ahu with a family I had been a nanny for who moved. I donated most of my material possessions, rather than move it all to the island. I returned to So Ca a few months later, to manage a family emergency. In creating this 'new beginning', I rented a room - thinking it would be temporary until I got a job and my own place. That new beginning took *a very big turn*, with my surprise diagnosis, one month later. (Which is a short explanation of how I entered this cancer journey with minimal possessions, at a low-income level).

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I had * no idea* that I had cancer, and I was very surprised to be given a terminal diagnosis! At first, I was told that I had about two weeks left to live, but my body responded well to chemo, so then it was several months. It was determined that a bone marrow transplant was essential to save my life. That process can take years. I was fortunate/lucky/blessed that my body was healthy enough to be approved for a transplant, and a perfect match, unrelated donor was found within a month or so!

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From the beginning of my cancer journey, I've had to be creative and resourceful about finding solutions to issues that many people who are adequately resourced don't have to deal with.

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I was under-resourced as far as not having a birth family unit, or a partner or spouse, or a job, or a home or substantial savings. I didn't have the required caregiver for the first 100-days post-transplant. Those all need to be in place for a transplant to be approved. I should have been denied - but, no one wanted to deny me, (for obvious reasons - I would have literally died), so I've been doing my best to be resourceful, ever since. The added extra emotional labor, stress, and trauma to an already challenging situation, has felt vulnerable, exhausting and stressful - and.....*I'm alive*, so there is that big bonus and motivation to keep on stepping through it all.

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My transplant went well. I am grateful!

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I was making do for that first 100-days post-transplant. I had put together a group - including my son and a few friends, and a few friends of theirs - to do the caregiving that was required those first few months. I had to live close to the transplant hospital - which was two hours away from my hometown - so I was living in a short-term rental.

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What complicated things logistically was the pandemic. I got covid, rsv and the flu in January 2020, and my transplant team had to try to figure out if the symptoms that lingered were transplant-related, long-term covid related or triggered in some way by being sick. There was a lot of guessing and a lot of mistakes. It took about two years (and tons of strong advocating) for them to discover that I had inherited an autoimmune disease from my donor. (Yes, I am still very grateful to my donor! - I'm alive because of his generosity, and cells!)

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Also, because of the pandemic, my lingering symptoms, and my brand-new immune system being very susceptible to *all kinds* of germs, my strict isolation was extended from that initial 100 days through to February 2022. I've been on soft isolation since February 2022 (which means I still can't be in public places where people gather).

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Until my transplant, I had lived in my hometown in So Ca for almost 26 years. after my transplant, I felt displaced in so many ways (which is understandable - I literally was displaced!). That made isolation a bit more challenging. I missed my friends. I missed my favorite places. I missed the familiarity of the life I had built and enjoyed. It was such a psychological stretch to be on isolation, and in an unfamiliar city - I was very much alone.

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Because I didn't have the capacity or bandwidth to return to my online job, or the permission (or health) to return to anything in public, and I didn't have savings, my money ran out. I turned to my community for support and have been lucky/blessed/ and so grateful to receive it.

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With the help of community support, I made a big move in the Spring of 2021, from So Ca to the west coast of Fl - which is where my young adult daughter lives. When I visited her, that spring, I realized how much the nature in Fl spoke to my soul and I had missed her not living close and wanted to be near her to make some memories together.

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I've been living in Fl since the Summer of 2021. Being mostly on isolation has meant that my main activity outside of the house is going to nature. Nature has always been a spiritual place for me - and here, it has been so healing. I am grateful.

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However, I don't drive (I haven't driven since my diagnosis), so I use Uber. I don't live close enough to town, so these rides are expensive, which limits my choices and activities. And, I'm newly allergic to nature (via this autoimmune disease) so there is a few day recovery time following each venture out.

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I've mostly used this alone/isolation time the last year, to focus on resting and healing: my heart, my spirits, and my being, after years of living through layers of trauma. I'm grateful to have had (and still have) this time - and this comfortable, safe, light-filled apartment - to have experienced (and be experiencing) healing in ways I didn't think possible. I feel more like the best parts of myself than I have in years. It's truly amazing! I hope that continues.

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There are days and weeks I've felt discouraged because I feel like I did everything 'right' and I'm still stuck in some of this stuff. And having inherited a chronic illness is its own set of challenges (I'm newly allergic to almost everything - my allergist actually, seriously, suggested that I stay inside. He's technically right, because when I go outside and my body reacts, it can take a day or a few to recover.)

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Mostly, I am super grateful to be alive. I am grateful to have this reset. (I'm not grateful to have had cancer or to have been so completely isolated for so long. I am grateful for the skills, capacity and support to move through a re-set that included losing everything, but gaining a second chance at life.)

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Thank you so very much for reading through, and 'listening'. I appreciate that. It is my hope that if you spent the time reading through, something in this speaks to you in a way that is of benefit.

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Much peace, along with my gratitude,

Joy