Rewind to Today

 I suppose I need to go backward to go forward.  First off, I'm a Christian wife and mom.  We lost our daughter 8+ years ago. I'm married to a near saint...he must be.  Even before we married I told my husband about the promise I made to Dad, a promise I'm still fulfilling.

In 1990, I was barely 20 years old when we suddenly lost my mom. She was 44 and Dad and Mom had been married for 26 years. I guess they had a good marriage.  I never saw them argue. There was relative peace in the house (besides my brother and I constantly arguing). I know they loved each other.

My dad worked, sometimes 4 jobs and Mom stayed at home with us. That's the way they wanted it and I was blessed to know Mom was always there.  It did come at a cost, though; I didn't get much time with my Dad. Thus, I didn't really know my dad, not really.  I have a vivid memory of each morning as a little kid, Dad would leave for work and I was just tall enough to see out the dining room window and Dad would be leaving for work in his white Datsun. He would look over to the window and wave at me and I'd wave back.  Then I wouldn't really see him (that I recall) until the next day of waving to Dad as he left for work.

Growing up, though, I would steal time to try and spend it with him. If he had a day off, he was often outside, either working in the garage or on a car, fixing something. I would go out there just to spend time with him, "helping" him with whatever. I always had this feeling that Dad didn't quite know what to do with me, being a girl. I felt (be it correctly or incorrectly - but these are my feelings) that he'd have preferred I be a boy. He seemed to know what to do with my brother and would play catch with him or go to one of his baseball games. He would go bowling with him or whatever it may be. So for me, I felt kind of unimportant I guess, invisible. I felt like I had to pursue spending time with Dad, but (in my mind), he would pursue spending time with Tony. It was just the way I saw it and it sort of set a core belief about myself that I was not enough, that I was unworthy to be pursued, to have time spent on. It wasn't that I felt like he was intentionally trying to hurt me. He was a man who inherently knew how to relate to another male.

I do remember one time that stands out in my memory that was precious to me. I believe I had won two tickets to Busch Gardens.  I assumed I would go with Mom, but to my surprise, Dad took me.  I got the entire day with just my Dad. It was one of the best days of my life to that point. Just me and my Dad. I distinctly remember riding a paddle boat with him, the sun was shining and I felt so content. I don't say all of the above to imply I had a bad childhood or that my dad was neglectful or anything of the sort. He was the provider while Mom was the one taking care of us kids.

Fast forward (or rather going back to) when we lost Mom. Dad was raised in a time when men didn't really show much emotion and for my entire life to that point, I don't think I'd ever seen him cry. I'd seen him upset. I'd seen him mad. I'd seen him laugh, but I'd never, ever seen him cry. To that point, I'd never really seen much in the way of a real tender side - not that I had much memory of. I remember after Mom had died and I was at their house (I'd moved out to my own apartment with my son the month prior) and Dad just literally dropped to the floor weeping. I remember having this odd thought, "He IS human!" I'd just never seen him cry. I remember kneeling on the floor beside him, holding him as he cried. In my mind, in that moment, I remember making the promise that whenever he needed me (as he got older or whatever), I would be there with/for him.

I don't remember exactly when I voiced that to him. It wasn't anything HE ever held me to, but it was something I took very seriously and held myself to. Granted, I was 20 and what the heck did I know about how that may look down the road.  I only knew I meant that promise and intended to keep it.

Dad went on to remarry several years later to a wonderful woman, Ann. They had a great life together and loved to travel. After Dad retired, they moved to Oklahoma to help take care of my Dad's dad.  Ann was great with Grandpa until Grandpa passed in 2006. Later on, Ann was diagnosed with Parkinson's disease. At the time, we were still living in Winterville and had a home we loved. We knew we would eventually move to Oklahoma but wanted to wait until both kids were out of school.  We begged Dad and Ann to move to NC and had even talked to the next-door neighbors of our adjoining duplex about buying their half so that Dad and Ann could have their privacy/autonomy and we could have ours, but still be close to help. Dad wouldn't have it.  He said they were too old to move, blah blah blah.  He was 70'ish.

At this point in time, I don't remember what specific event Dad said would take place and I/we would know it was time for us to move as he would need help.  He had help with Ann via caregivers, etc.

In 2012, we moved to Oklahoma, leaving our son here (he didn't want to move and was already out of the house) but took our daughter with us. We changed everything about our lives by moving. Neither of us had ever lived there and it was a challenge.

For the first year (since my job required high-speed internet and Dad still had dial-up in the boonies - the only option there at the time), we lived in town, 30 minutes from Dad and Ann. This was a good breaking in period for us (sort of - You'd have to see my other blog about losing our daughter during this period to understand fully). During this year, I'd either go out there to sit with Ann while Dad went to a senior's meeting/luncheon, go bowling, whatever he needed, or I'd accompany them, especially when she had more trouble walking and/or was in a wheelchair. After that year in the apartment and with Ann's condition deteriorating, we moved into Dad and Ann's home (minus our daughter who died shortly after). Eventually, she ended up bed-bound with the addition of Alzheimer's. I believe it was 2016, Christmas night, that we lost Ann.

Dad was a mess again, but this time with the progression of her disease, specifically the Alzheimer's since she didn't recognize him anymore, it was as if he'd been losing her for a few years. He'd said in advance that at some point after Ann passed, he was going to take his travel trailer and go on an extended trip, which he did in 2017.  He was gone for about six weeks and when he came back, he was a complete mess for different reasons. He'd reconnected with a family friend and decided he was going to move to Washington State to help her out...but he was too old at 70 to move to NC...now at 80, he's moving to Washington State....I felt abandoned, hurt, angry, sad, disappointed. We'd upended our entire life to move to help him, DID help him, lost our daughter in the process, not seen our son but a handful of times in the 7 years we were in Oklahoma, and then he's going to run off all willy nilly to Washington State. It felt like a slap in the face. Yes, I know it was MY promise to my dad, not his promise to me.  Still, I was trying to LOVE and HONOR my Dad by being there for him, helping him, serving him, and in the end, it felt like even that was not enough, or good enough, or that I wasn't good enough. That's what was reinforced to my core belief. I'm not enough. If I'm honest, too, though, my motivations were mixed. Yes, I wanted to honor that promise; I wanted to love and serve my Dad, but part of me was, and has always been, trying to prove my worth to my dad. I've chased his approval my entire life. I may actually have it. I know he loves me. I'm 52 years old and I'm STILL trying to feel validated by my earthly Dad even though I KNOW I'm valued, cherished, loved, enough by my Heavenly one. How screwed up am I?!?!

I know this...we're all broken. We're all beautiful. We're all valuable. We're all worth pursuing. We are all infinitely loved by our Abba, our Papa, our Daddy in Heaven.

And so here we are to more current times.  Dad moved to Washington in 2017 or so. He left us the house and all the stuff to deal with.  I had to do the most ridiculous amount of research/contacting people in order to even begin to TRY and sell the house as it was originally a Choctaw home (iykyk). FINALLY, we were able to sell the house/land, split the money with Dad, and in 2019 we headed back home to NC.  We were ECSTATIC!!!  HOME!!!  OUR SON!!!!!! OUR FAMILY!!!

Dad came for a surprise visit in March for my 50th birthday and had alluded that things weren't going so well and he may end up living with us after all.  In August of that year, he moved in with us. He started going to one of our churches (hubby pastors two and we live in the parsonage across from one of them). He and Tim joined a bowling league. He was his normal active self.  He's always been a go-getter, very active. I even joined their bowling team in the second season.

In March of 2021, he'd known he had a skin cancer on his head that he'd been trying to get into the VA in Washington for, but they never got him seen. He tried to see dermatology through the VA here, but they also never got around to referring him. So I got him connected with my doctor who immediately got him a referral. He ended up with a wide excision on his head behind his right ear.  It had grown a lot under the skin and the doctor had a hard time closing it up.  Dad had to stop his bowling activities, etc. because he couldn't bend over or do anything that might put pressure on his head.  So for weeks he was inactive.

When his head was healed and he was able to get back to bowling, he noticed right away that he was really tired. We figured it was just from the weeks of inactivity and that it would just take some time to get back up to his norm. He would take a Coke with him, snacks, etc. but by the end of the night, he would be completely wiped out. He was 83 at that point, so I'm also figuring his age may be playing a role. One night while bowling, he mentions that his heart is racing and he's feeling short of breath. That scared me.  I didn't know if he was having a heart issue or what, so again we get him into the doctor.

His blood tests were off. He was sent to Hematology/Oncology at the hospital. There was a bone marrow biopsy.  It didn't give us an exact answer as the return wasn't great. The oncologist was wonderful. She said it was either one of two things and either one would be treated the same way.  I had access to the reports and saw even then that he had some specific gene mutation that made this have a "poor prognosis."  I remember sitting in my office reading that and I felt numb and panicky and then numb again.  Not Daddy.  But, it also felt unreal. Like if I don't believe it, then it's not real. The working diagnosis was CMML (chronic myelomonocytic leukemia).

Dad was started on azacitadine for chemo in May 2021.  It was just two shots in his belly for a certain number of days per month and would have labs in between to check his counts. He never had any side effects. Seemed too good to be true. Tim and/or I would go with him to his labs and oncology appointments. Once he needed platelets and one or two times he needed a blood transfusion.  He seemed to be doing well overall. He even got to a point that after his third bone marrow biopsy, it showed no sign of disease!!  We were all ecstatic.

Dad never felt bad; he just never had the energy to bowl or do the things he really liked to do. He and Tim even started going bowling again to practice so that they could bowl in league again together.  Dad joined a senior center that I'd gotten him information about and had bowled in a tournament and actually won for his age category!  Things were cruising right along!  Do you hear the brakes screeching yet?

Dad's numbers had been declining, but his oncologist wasn't sure why.  She didn't know if it was still a residual effect of the chemo in his system, or if something else was going on, so chemo was held for nearly three months.  He had nothing.  Still the numbers declined.  Dad had to have another transfusion.  At some point during this time, Dad and Tim had gone bowling and even though he finished one game, he was wiped out by the fourth frame, and even dad said he thought his cancer was back.

His oncologist all along had been consulting with the leukemia specialist in Chapel Hill associated with this hospital and it was decided since he'd been off chemo, his numbers were declining, that something more aggressive may be going on and he needed a FOURTH bone marrow biopsy.  Typically, when he'd gotten one locally, it would take two weeks for us to get the results.  They didn't want to wait.  We went to Chapel Hill for the labs/bone marrow biopsy and by the next day we had our diagnosis. Despite being on chemotherapy (minus the three months it was held), his cancer had progressed to Acute Myeloid Leukemia. This is not good.

I'd read the reports again and Dad didn't seem to really understand that this is not going to be the same.  It's a more aggressive cancer and will require a more aggressive treatment.  Still, he's optimistic and has been the entire time.  We went this last Thursday to Chapel Hill to meet with the specialist and his team. It was explained to us that not only is his cancer more aggressive, but he has a specific gene mutation that lends to an unfavorable outcome.  We were advised that due to his age, he's not a candidate for a bone marrow stem cell transplant.  There are no clinical trials.  Due to his age, there is only one treatment option available.  Part of it is again, azacitadine but with the addition of a chemo pill. They said that two-thirds of people who take this combination achieve remission BUT said that they don't have much data about people who take this combo who have already taken the azacitadine, only those who've never taken it. It worries me that he failed the aza and that his cancer actually progressed while on it. They said they don't really stage leukemia in the same way other cancers are staged.  It's more on a scale of most likely to achieve remission to unfavorable outcome.  Dad's is in the "unfavorable outcome" status.  But like Dad said, it's either get treatment or die.

So...that was a very long day. I've been trying to keep everything in, keep a blank face to not give away my fear.  I don't want it to influence him. He's optimistic (or at least that's what he's putting out), so I'm trying to be optimistic with him. It was a lot of info to take in and because of COVID protocols at the Cancer Hospital, Tim wasn't allowed to go with me.

Treatment is set to start June 1.  We will drive up the night before as some of his labs are set for around 8:30 a.m.  They referred us to the SECU Family House to try and stay that first week.  It's a day-by-day housing situation. You have to call each morning to see if they have a room available.  If not, they have other programs to help cut the costs of hotels in the area.  Since we are required to stay that first week as they have to closely monitor Dad, I really hope we can stay at SECU FH.  There's a shuttle that can take us back and forth to the Cancer Hospital so we don't have to worry about the parking hassle.  Every day for seven days he will get the two shots of Aza in his belly like before.  In addition, on day one he will take one of the chemo pills, day 2, two, day 3, four, and four every day afterward in that cycle.  We will also come up to Chapel Hill 2x/week for labs and possible blood transfusions.  The HOPE is that after the first two months, we can transition the treatment locally as it's a 2.5-hour drive for us to Chapel Hill.  At the end of the first month of treatment, they will do another bone marrow biopsy to assess response.  They said that some people will start responding that first month of treatment, some not until the third month.  They said if he's responding great!  If he's responding some but maybe they need to tweak the treatment regimen, they will.  If after the third month (September) he's not responding, then we'll have to have some other conversations.

On a bright note, Dad has met someone through one of our churches.  They get along famously and it's great to see Dad have some joy.  She is also a widow.  They have a great time together and I am just really happy to see Dad have a reason to smile.

My prayer is that the treatment will be successful.  Leukemia is not curable so that is not the goal. Remission and living a good quality of life as long as possible is the goal.  Emphasis on the quality of life. I pray for Dad to have peace in the process, for all of us to have peace in the process.  I've left my job to be available to Dad whatever the need.  This is going to be a more rigorous, taxing treatment and he's likely to be very sick. I pray for Tim and I.  I pray for the time that Dad and I will be up in CH for the week.  I pray for grace and patience.  I pray for love to prevail. I pray to maintain a servant's heart and that my motivation simply be love.

So that's the rewind to the present. Until next time.