Just when I thought I couldn't go further down the rabbit hole....

I believe it's known by now that this blog is mostly my own cathartic place to share our experience. In the back of my mind I also hope this can someday be an encouragement to others going through a similar experience.
Today will not be that day.

Here is the view from my new recliner/bed:

Don't be jealous.

I was having a difficult time deciding if I should go home tonight or tomorrow morning. There's a high fire danger advisory and after having fire come practically to our front porch last year, I'm a little freaked out. I like to be home on these really hot days so I can be on red alert. It gives me the illusion of control.

But Dominic asked me to stay. And so I stayed.

I haven't showered in two days because I thought I'd be driving home this evening. Then, when he asked me to stay, I decided I'd go downstairs for some dinner, grab a shower and tuck into bed for an early night.

Then.

Thant was not to be.

Chaos.

The fire alarm went off. But for real. They have drills all the time, but this time it meant business. Even though there wasn't a fire, the alarm was screaming, all the doors were shut and the sprinklers went on in the room across the hall. I tried to mind my own business as I heard the nurses screaming "Oh my god!" "How did that happen?" "Here's the eyewash, quick, bring him over here." But as I saw more and more employees gathering outside our door, I had to peek.

They were grabbing blanket upon blanket to staunch the ankle deep flood of water from the room. They did a good job too, because it didn't reach our room. The turquoise and white blankets were piled literally to the knees.

Nevertheless, we had to be evacuated. They told us we could go in the family room around the corner. So, we went and sat. And sat. And sat. Dominic has barely been able to sit up for the past month, and he sat. People would check in on us. People would ask if we needed anything. A room with a bed maybe? I cannot imagine if I had gone home. Who would sit with Dominic?

Someone told me they made him a fresh dinner. since the first had just been served minutes before evacuation. But he couldn't eat yet. Too shocked I think.
After sitting for nearly 3 hours, I finally convinced him to eat a frozen meal I had in the family room. I'm so glad he did, because by the time we got to a room, that promised second meal was also taken away. They would have brought him food but.....things were pretty dicey by this time. (I'm sure the nurses would move the moon for us if they could, but there were just too many unknowns. Some of the dayshift nurses stayed until we settled in a room which brought their day to 15 or 16 hours.)

We were alone in the family room. A Russian couple were with us in the beginning, but they were taken to a waiting room somewhere else. The rest of the patients got to stay in their room with doors closed while all this was going on. Just my precious Dom plopped on a couch. He and I are very close, but I can't even tell you what was going through his mind sitting there wrapped in a blanket.

We were informed the whole unit would have to be emptied for cleaning and testing. They would be distributing us into the ICU. Also known as germ central. The rooms had to each be sanitized by the little robot I wrote about before. The little germ killer. That was time consuming. There was a lot of confusion. Shift change was happening, and nurses were trying to nurse and figure out what to do with 16 or so patients.

Here's the thing. I had to get all assertive again. I do not like rocking the boat. Dom hates rocking the boat. But what I don't like even more is watching my guy stare into space because he's usually catching his first chunk of sleep by 9:00 at night, and instead, he's got a blanket around his shoulders and he's sitting up till who knows when. So when they tell me they're taking the patients in waves and Dom's in the third wave I freaked out a little. "So you're telling me that the patients who have been in their rooms, in their beds this whole time are being transferred before Dom, whose been sitting for the longest he has sat in weeks?" This is what they were trying to tell me, but I was not having it. I don't want special treatment. But come on. You've got one patient not waiting in his bed. Take that patient first.

I also had to fight with the nurse from the new unit about getting our stuff. She asked if there was anything we needed urgently, and they'd pack up the rest for us and bring it over. Um. No. I've got it, I said. But it needs to be cleaned she said. Cleaned? No. I will get my stuff thankyouverymuch. My favorite nurse and I just couldn't figure out what the deal was. It was if she thought our room was the one with the sprinklers? So, I marched back to the room and grabbed all our stuff. It's that illusion of control thing again. This day/month/year has been such a mind bender that carrying my own stuff from one unit to the other was my security blanket of control. And that's that.

They finally decided it's Dom's wave and they wheeled him through winding hallways and into a huge room with giant sliding glass doors and I'm going to be super morbid here, a huge digital clock with red lit numerals directly over the head of the bed, and it's the clock every doctor looks at in every doctor television show to pronounce the time of death. Ew. I'm not happy here. A plane is getting ready to take off, also known as a HEPA filter on full blast. We have to yell at each other to be heard.

There's no lav. (I stand corrected. After writing this, the nurse took care of some business and rolled open a cupboard to reveal a dinky little toilet. It had every appearance of being an airplane toilet, including a giant push button flush. It's all tucked away behind a curtain. Not a green curtain. This is certainly not Oz.) No shower either. It's a huge room, but it's crowded with arms coming down from the ceiling with wires and monitors and such. As huge as the room is, we found ourselves shimmying around as we did whatever needed to be done for Dominic.
And.
There's no cot or couch. No bed for me.

After hours of waiting in the cold family room, exhausted, there's no bed. (I know, I know...I've been spoiled that they've had a bed for me at all....)

And.
Rule number 2: No sleeper chairs or cots in the rooms.
I already broke rule number 1: No eating in the rooms.
Once Dominic was settled in his new bed and slipping into sleep town, I went downstairs for dinner. At the fashionable hour of 10:30. I brought back my box of salad, plopped it on his bedside table and began eating...only to have him wake up and point to the sign. Oh well. If ever there was a time to be a rebel.

We have our favorite nurse, without whom, I swear I'd be having a major meltdown. We love her. She loves us. I can be snarky with her and it's all good. We just laugh. I think she appreciates the irony of me staying the night because as it turns out, Dom needed me more than we even realized tonight especially, and yet the circumstances are not so conducive to having a caretaker. There is no way I would be okay with him sitting in the family room for 3 hours alone. No way. I really needed to be here tonight. And, on a less important note, I needed to be here to pack up his clothes and drinks and accumulated belongings from his unexpected weeks upon weeks stay. In every way I was meant to stay here tonight of all nights.

And there is no bed for me.

But, our favorite nurse is a rebel too, I guess, because she at least managed to smuggle in a reclining chair and some linens.

So, here we are. It's morning now. I watched the sunrise from my recliner. I think I got two hours of sleep. For all the drama, Dom is actually chipper. He's got World Cup playing and he was able to sleep between blood pressure takings and what not. He's so fragile right now, this could have gone either way....but he's such the guy. The nurse is astonished he's still smiling and laughing.
Word is, he's being moved back to the unit today. It cannot be too soon, as ICU makes me so nervous. Seeing Mersa signs on doors....is there Mersa in that room? Or are they just testing? I don't know. I've felt so safe over in our BMT bubble.

I'm really just probably quietly hysterical right now. It is astonishing that I have had to "evacuate" twice throughout this process. Once I thought our home was going to burn down, and we had to find a place to live for a week. And now, though it's not nearly as dramatic, I'm definitely going to need some chocolate.

I'm definitely looking forward to quiet days at home with my guy feeling much better. Until then, maniacal laughter at how absurd these days have been.

Marking the last day of normal~

Today marks one year since the last day of normal. One year ago today, we were both busy working and life actually seemed near perfect. We went to bed concerned about the mysterious bruising and that was the last time we slept in our bed in our old life. I did have an ominous feeling that week. But, I certainly couldn't begin to imagine how life would unfold this next year.

It feels like yesterday, and it feels so long ago.

In those first days, I'd imagined that by one year, we'd be back to normal. Of course in between imagining we'd be back to normal, there were moments of terror that things would never be the same.
And putting one foot in front of the other, we have handled more than we ever imagined we could handle. That first week in the hospital, I couldn't imagine spending a whole month in the hospital. I couldn't imagine putting our life on hold for a whole month. And now, it's a year. By my calculations, Dom has spent nearly exactly half a year living in the hospital. I could never have wrapped my mind around that the first week. But, time has a way of preparing us. And there's really no manual, no friendly word of advice that is better at preparing us than time.

The very first nurse we had was pregnant when she met this completely shattered couple. I just ran into her in the hall for the first time since then. (If you remember waaaaaay back almost a year ago, I shared how they moved us into a new room literally in the middle of the night, and Dominic had his first ride in a wheel chair that may have felt a little more like teenagers pushing each other in grocery carts down dark alleys than a grievously ill patient in a wheel chair. We moved to another ward and never saw that nurse again.) I asked the nurse about her new baby, which is now already 8 months old!!! How can that be? This little life that wasn't even in the world when we started is now probably crawling. 

And the little one that I was helping out with is a whole year older. The little baby I just adore has turned into a little girl, who loves to go to preschool and thankfully, has not forgotten her auntie.

Since we first entered this hospital, they have opened a cafeteria. It opened 3 days after we were discharged from the transplant. Is that a silver lining to returning to the hospital unexpectedly? I get to check out the new cafeteria? It's a pretty thin silver lining, but I'll take it. I do feel weird eating from the salad bar, when I have avoided public food nearly a year now. I'd think a hospital would be the last place I'd want to dip into the trough. But salad. I need green in this land of beige.

Reflecting on the first months here, I am astonished at how timid I was. I realized there was a Starbucks just one block away, but I couldn't leave Dom's side long enough to find it. I think I also felt like it would be frivolous given our circumstances. But there it was. Right around the corner, and I never visited. We found a gluten free bakery that was just two blocks from our temporary home, and about 1.3 miles from the hospital. I guess it's well enough that we didn't know it was there until he was able to eat outside food. I walked there last weekend from the hospital and bought some treats. I reflected as I walked that day that the first week I had been lost and driven down that very road, and it felt so foreign. And now, I was walking there, feeling at home.

If the cafeteria is a thin silver lining, the thick silver lining is the way we've been held throughout this year.

There are people we can never repay. There are gifts in suffering.

There are people who have met us through all the twists and turns. There are people who were only quiet until we needed them and then they were johnny on the spot. Through the wonder of technology, I've met so many amazing people. I got to bond with my sister in law, though gosh I wish it could have been another way. I've reconnected with long lost friends who have brought so much to me. We've made new friends on this journey and Dom's been so fortunate to connect with mentors who have walked this path before him.

Dominic and I have also had long interesting discussions about spirituality. Sometimes, those discussions don't happen when life is "normal." Being the person I am, I thrive on deep discussions, and delving into the deep.

So, today marks the new normal. The new normal is, Dominic and I have a new appreciation for life. We have a new appreciation for the human body. We are able to weather the storms with a little less angst and a little more courage. The new normal means I'm going to be real open about how things are, and it is out of my control how other people receive me. The new normal means I have it in me to step up and gitter done. I'd rather be taken care of and pampered and only break a sweat in a hot yoga class, but now I see, I can start an engine on a burly weed mower with a pull cord, (which is no easy thing) and push that beast up and down hills. I will admit, my new normal does not include driving the tractor. At least not yet. And that is why the new normal also includes receiving with so much thankfulness so much help that we are both so humbled by. We never ever could have done this on our own. The new normal is remembering with greater clarity we are never alone.

Practice makes perfect

Just as we had begun to reach some sort of normalcy, some hint of a little more freedom, it's back in to the hospital.
Dom's beep, beep, beeping through the night, and thanks for the reminder seestor, I'm shooting several panicked glances toward the lock in the public restroom that opens directly to the family room.

It's hard to believe, it's been nearly a year since this whole thing started. Just 3 weeks shy of. We haven't been in the hospital for 5 months and we've been home for 3. After 7 1/2 months of being back and forth between home and hospital and even fire refugees and another 2 months living in Sacramento, I realize we spent collectively nearly 5 months not in our home this past year. And adding days as I type.

I have so many mixed feelings. My strongest feeling is utter relief that professionals are taking care of Dominic. For two weeks I wondered what to do. Should I make him eat? Is eating bad? When do I call the doctor(again)? When will it stop? It was a grueling 2 weeks of sickness for Dom. Being already spent emotionally, having scraped my account over the past year, I was at my wit's end.

So, while we'd rather be home, we are both so grateful to be more directly under the doctor's care.

There's no sign on the door that declares chemo or transplant. The nurses no longer glove up to protect themselves from chemo poisons coming out of Dom's body, though they do still glove up for hygiene.

And I find that after nearly a year of this business, I'm also flowing a little more easily. I'm crying more easily as well, but of course. It's an entirely different thing to be admitted to the hospital with a diagnosis looming and the not knowing when he will have a transplant, and then will the transplant take, and then where will we live in another city....? This feels easier, but it is still excruciatingly difficult.

I spoke with the social worker just after our arrival, and she asked if our room was okay. She knows I prefer a cot over the slippery slidey couch bed. I thanked her for her concern, but told her it's fine. This is just a blip. It could be a long blip yet, but we're on the other side. There's so much relief being on this side of treatment. (I've also figured out that if I shove a couple pillows between the slippery layers of the bench of the couch and the fold out cushions on top, I am nestled in and prevented from being deposited on the floor.)

I don't totally understand the human mind and the plasticity of thoughts. Fears do creep in. We're on the other side, but that assumes there's "sides". It's not as simple as all that. There's still biopsies to be had, still the body adjusting to the new stem cells, still the body dealing with the aftermath of a chemical cocktail of chemo so strong it could kill. Still the stress even of recovery time. I still find myself worrying and whatiffing, and I have to actively banish any thought that only serves to panic or wear me down.

Tomorrow brings with it whatever it will bring and it is absolute hubris to think that any bit of my worrying will take away any challenging thing. And so, I try and dwell on what seems good. Of course, that's also an interesting balance. You see, I'd been been dwelling on the fact that his White Count finally went past that scary place it had been for months. I was dwelling on the fact that he could finally eat blueberries, (which he did) and we could maybe have some friends over for a meal, and I could finally visit my friend with all the kids or attend a yoga class, and maybe some friends could come and see how they began a cleanup that I would continue and we could marvel at all our hard work and enjoy a relaxing day. And so....it's a funny place to be, hopeful and yet not overly disappointed when I realize that all those things will be on the back burner again. It's a dance; building a future and holding it in my hand with open fingers so whatever needs to slip through can. And whatever does slip through, all in good time, I can pick it up again, if it's right and good and worth while.

I guess what I'm trying to say is, it's an art to be hopeful in the future, grateful and present in the now, and not too disappointed when things do not go as planned. It's an art I haven't mastered; but I suppose practice makes perfect.

I will be back and forth with a little more freedom this stay. I have to keep our life in a forward motion right now. I never wanted to leave him when everything was looming. I never wanted him to feel alone in the darkness of chemo and the mystery of transplant. And I could not leave him alone for long in the ensuing months of low WBC. It's no difficult thing to be so tethered to him, since he is my love and best friend and joy to be around. But he's in good hands. I'll look forward to us being back home together. We'll hopefully pick up where we left off, and continue to look forward.

Cultivating the space you have

It's been over two months since we've been home now. The time to write is thinning. But sometimes, when I'm doing the other things, the words are swirling. If you follow the blog to keep up with Dominic's recovery, there's probably not much new information here. It's a slow, up hill climb and we celebrate every victory.

Today's thoughts are not necessarily about the journey, though the experiences of the last year contribute to them.

I spent this morning with the strimmer and a rake. As you know, who have followed this saga, not only did we survive cancer this past year, we survived a fire that crept right up practically to our doorstep as well. I am constantly in awe of the symbolism. And I've been on a dual pronged quest ever since. The quest to keep Dom healthy in body and soul and the quest to get our home as fire safe as possible. I've referred to it prior to the fire as our little match box; but I do not want that to be the case!

I've shared before how I tackled a lot of shrubs and I've been mowing and cutting like crazy. There's a pile of lumber too near our little house and I've hated it for 20  years now. About a decade ago I filled up one of those huge extra long chevy creeper vans to the roof with old wood for the property owner to take to the dump. He asked if maybe next time I leave him some room to breathe. It was literally wedged in to the top. But over the years, I watched as various improvements on the ranch included various offerings to the wood pile. And it swelled again. Dominic and I took another load to the dump a couple years ago....and I watch the wood pile grow again. It's like it breeds.

My social media friends know my Mom and I had a rattle snake encounter last week. There he was, (for the snake rescuer told us it was a he), sunning himself in the driveway. My mom was walking up the drive from the barn and he gave her a good warning rattle and reared up at her. Once she backed off, he retreated to the underside of a cart. If he only knew just feet away was a huge pile of wood he could get lost in, and live in, and terrify me forever. Thankfully, he stayed put until Al came with his salad tong sized snake gripper and lifted the very angry snake from his refuge. I said goodbye to the snake (after I thanked it for clearing out some vermin for it was quite fat) and put it in my mind that the wood pile has to go. All of it. Needs to be gone.

It does literally need to be moved because it's too close to a propane tank. I watched a Cal Fire video last week that informed me that propane tanks must be cleared of combustibles at least ten feet. So, if it's moving ten feet, it may as well move ten thousand. That is a project for another day.

Today's project was inspired by the same informational video and where I'll get a little personal. They mentioned in the video that the undersides of decks should be free of leaf matter and twigs. I didn't intend to go back there and start raking. It just happened. Let me tell you a little about my dilemma. I am surrounded by oak trees. Beautiful, giant oak trees. I've done some research, and they don't like packed ground, and they don't like over-watering under their canopy during the summer, and they do like their leaf litter to decompose back into the ground for nutrients. It's a bummer for these big magnificent trees that my house sits right between them, I'm sure that would be considered packed ground.....And so, I'm very protective of their leaf littler now. But, it's also a fire hazard. So. What to do? What to do...

I tried to have a garden in my little back yard 20 years ago, but it was a big no go. Between the deer and the shade of sprouting oaks, it flopped. I dreamed about having a lawn and mowing it myself, but the whole no water under the canopy thing voided that idea. Basically, my yard has to be in its natural state. So, for 20 years, I've mostly ignored the space. It had an occasional weed trimmer come through. Once my mom raked all the weeds down. I think I was depressed and I think she didn't know how to help me except to do the work I should be doing myself. I think she hoped it would inspire me to work. But it didn't.

It took flames at my door step to inspire me.

So, as I raked under the deck and under the shrubs (that I don't water at all, and have ignored for 20 years as they grew from 3 feet to 9 feet, and that we massively cut back last month), I got to thinking there in the quiet with my rake in hand. I got to thinking as I pulled things out from under the deck that I knew blew under and I just ignored. I got to thinking in the unruliness of it all.

It couldn't do what I wanted it to do, so I let it go.

Not in the Frozen Elsa kind of way where I relaxed in a good way.

I let it go in a Sanford and Son kind of way.

Is that hitting you in any way close to the ton of bricks that hit me?

It couldn't do what I wanted it to do, so I just let it go. I ignored it. I closed the door on it.

I allowed refuse to pile up.

And as much as I love nature and the outdoors; it is good to keep a grip on home.

I thought today as I raked years and years of leaves how easy it would be if I'd done this each year. I thought about all the years in my own life that were left uncultivated because they didn't look like I wanted them to. If I could have accepted that even though I can't have a lawn in the back, I can keep it neat and tidy and rake the leaves and tend the space, I wouldn't have such a daunting task ahead of me now.  And then, I came in for a water break and sat down and started writing.

The thing about this past year is it's put some incentive in me I didn't even know I possessed. It's too bad it took nearly losing my husband and my home in the same year to give me a kick in the pants. But, here we are.

Visually, the back won't be too much different than any other time. The weeds will turn brown in the summer, they'll grow back in the winter, and (now), I'll mow them down in the spring. (Instead of waiting for them to just dry out and fall over.)

But, there is a path around my house again. For years, branches were in the way. Weeds were over grown, and it was just scary. It's mowed back, cut back and raked up. *I'm editing to add here: The day after I did all this work, the water heater putzed out. We had to have a plumber replace the water heater, and for the first time in forever, a handcart could freely be pushed to the back of the house, and not a day too soon. And so, the cleanup story takes a new turn.

Because, since the plumber needed more room to work in the little shed, true to form, I didn't just make him a little more space. I emptied the shed, cleaned it out, and put it back together after he left. When I moved in some 20 years ago, the shed held the owner's forgotten papers and detritus of life. Over the years, I've tackled it, piece by piece. With his permission, some ten years ago, I emptied the file cabinets and had a bonfire. Later, Dom and I flipped a file cabinet on its back, painted it the same color as the barn and planted tomatoes in it. Even though I'd cleaned out the cabinets, I still found a canceled check dated 1976 this week under a pallet. You would not believe what pack rats deem acceptable housing material. The shed is not enclosed entirely, so it's a dream home to critters. A heavy pendulum to an old clock had been carried from one corner to the opposite. I'm not sure how cozy a cold hard object can be, perhaps the critter thought of it as a shield.

All of this to say, that while there are things in our lives that need attention, sometimes we find ourselves cleaning other people's messes. Do it anyway.

And back to the great outdoors, the added bonus is a wild cherry plum tree has been discovered. When everything was overgrown, I'd never noticed the plum tree sprouting up. There were a few down by the barn, and I'm sure a bird dropped a plum by my house. Last autumn, in response to the fires, we had a tree guy come out and do some work to safeguard the house and preserve the beautiful trees. He opened the area around the plum tree a little, but I still didn't notice it until we moved back home and I saw blossoms for the first time. And, I'm sure you can gather, after this past year, all signs of new life are deeply meaningful to me. When my family and I cut back the saplings and brush, we opened up the space for the plum tree to really shine. Today, as I worked my way around the house, I noticed for the first time little cherry plums heavy on the branches. Literal fruit of our labors.

And I wonder how much else in life needs to be mowed back, cut back and raked up? Nothing like a little trauma to get one wondering. I can't change anything in the past, and I can't change everything today, but just as surely as I can walk on the path without getting hung up on branches or worrying every step that a snake is hiding in the weeds, I can tend to my life as it is. We can all tend to our lives just as they are. My journey may not include the lawn I'd always dreamed of. It may not be an English garden with boxwoods perfectly carved in the shape of animals, it may not have topiaries and fountains and rose bushes, but at the very least, it can be cultivated to be the best and safest place it can be. It was oppressive for a while. I felt like I had no say, that the branches were bigger than me and the lack of tidy edges and designated living areas ruled the day. But I found my clippers, and I got to work and I'm embracing everything for what it is.

Seems like it's time

We've been home over a month now and it still feels weird. It feels great, and it feels weird.
The white blood count has not budged, so we're still a bit isolated. I'm not looking up friends to catch up with just yet, and Dominic is still in full recovery mode.

I'm every day grateful so may people have supported us emotionally and financially, as I just had no idea how long this whole process would stretch. Dominic is chomping at the bit to work, but his body is still saying no.

He was able to facilitate hiring a day worker to come and do some of the work we normally do on the "ranch." I was happy to leave that to him.
My mom is also an incredible worker bee. She has taken hold of Dom's weed whacker and made a good dent. We had a mother daughter day, she pushing the mower and I got hold of a wand myself. The weeds seem to have been given an extra zeal for life after the fires. The field just behind our home that was burned to save our home grew I think 2 feet in one week of rain. It stands above waist high in some places. Little by little, we'll get it cut back like a new recruit.

I may have also gone a little wild. Brad and Dominic have bees behind our house. Brad started with one hive and then brought Dominic on board a couple Christmases ago. We enjoyed the first harvest of honey last fall, and I can't wait until Dominic is free to sample the goods. (Honey is still on the no no list.) Bees seem to be very sensitive to plant poisons, so what to do about the poison oak growing in our back yard? I really didn't want to spray poison so close to the hive. So, with a wild hare, I woke one morning, dressed head to toe, rubber gloves, goggles and a mask. I hand pulled yards and yards of poison oak. I had no idea that a little three inch plant would be part of a system of root that stretched at least three yards. I folded it like Christmas lights as I pulled and pulled. I filled a large trash bag with poison oak, and dropped it in the bin, thinking it would be a nasty surprise if we still lived in Sacramento.
My gift of the task was a little bit of rash on my forearms where my sleeves had pulled away and a stripe from my eye to hairline where I'm sure my hair brushed some oak and then my face. Not too bad for getting the job done.

I still haven't returned to yoga since we've been home. I miss going and being in a dedicated space with the temperature cranked up. All in good time though. Skipping classes has afforded me more time to work outside. And heaven knows, this property we care-take needs lots and lots of work. And the risks of bringing home germs are just still too great.

New realities are setting in, and sometimes they're ones we'd like to run away from. They're definitely not things people like to talk about. I think on some level, Dominic and I saw us going back to normal a little more quickly. I think a lot of people have seen the 100 days that way. We thought after 100 days, he'd be right as rain. That hasn't been the case, and it's been an adjustment. As I mentioned above, the white blood count wont' budge. Yesterday it was at just 1. I feel like I'm beating a dead horse mentioning this, and then again, I find I have to explain this in awkward situations. This is the part of the blog that just gets so personal.....it's the part where I'm not thinking about our support group as much as I'm thinking about someone else going through this in the future and how I can support them. It's not anyone's responsibility to know how dire this situation is. I cannot and do not expect people to understand what a 1 means for the white blood count. But, I find, I will have to get explicit at times. I will have to say no to things that hurt to say no to.

Here is what a 1 means:
A 1 means Dominic is incredibly fatigued. A 1 means he is so very vulnerable to germs. A 1 means he has virtually no immunity. A 1 means the simplest cold could result in death. I find I have to explain this to people who ask me should he not catch a cold because it will last longer? Oh, if only it were that simple! I'm sure Dominic would love to get back to his old life if the only repercussions were he may catch a cold that would last longer than most. With no immunity, a cold could take hold and lead to sepsis. At this juncture, this is not a mere inconvenience, it is life and death.

It's difficult to share all this and not feel like I'm complaining or scolding.  But, I am compelled to share this with the thoughts that this is bigger than me. This is bigger than my discomfort in over-sharing, or pride in holding it all together.

So, this is where we are after being home a full month. We still see the doctor once a week. He would let us come every other but for the low White Blood Count. Dominic has to get a shot every week to stimulate production. He gets poked first for blood draw and then poked again for the shot.
We had 8 am appointments the whole time until the tri-fusion came out.This meant we got there when they opened, we'd be scooped up into a private cubicle, we were almost always seated right across from the nurses station because we like to banter with the nurses and they like to remark on Dom's hair and eyebrows. We'd stay there until the doctor came by, and then we'd be off to home.
Now, we don't get there until 9 and we have to sit in the waiting room. The appointment times are not precise, so we sit and wait. We wait in the waiting room until the lab results are in. Once the results are in, we originally would just go to the doctor's office, but because of the need for shots, we go back to the nurses and get a shot. We've been so spoiled spending all our time in the comfort of our own little room surrounded by the nurses. This thing of being in the waiting room next to the humanity is new. Yesterday, the single mom wanted everyone to know that she should have special treatment because she's a single mom and it's hard. She was not there as a cancer patient. I am sure being a single mom is hard. Very hard. And we would have gladly given up our spot so she could be on her way. But I looked around the room at the people in line before her. Masks and green faces ready to be ill, people bent with age and unable to walk in a straight line. Perspective is an interesting thing, if one can afford to take the time and have some. Sometimes, we're so balled up in what is happening to us now, it's hard to re-frame.
And that is why it's so difficult for me to share my hard bits, my realities. For fear my perspective needs re-framing.

But here are the fun bits. The doctor doesn't seem phased at all by the low WBC. He breezes in, says yep, still low, still need to come once a week. Then some other topic comes up. Last week he asked Dominic if he got a hair cut! Ha ha! Dominic thought he was joking, and responded in kind and they both kind of stared at each other. Being the interpreter, I told Dominic he was in earnest, and we all chuckled awkwardly. One day, Dominic will need a hair cut. That day has not arrived. And, I am trying to coax him into a photo......not yet, he says.
Last week, I made him car sick the last leg of our journey home. He had to share this with the doctor which prompted stories of wives and driving and perhaps Dominic will be driving home from now on.

So, it's not all low WBC and woe is me. The doctor seems untroubled by this low count. All the other numbers look good. We just have to be patient. Is that why patients are called patients? We're so happy to be home. It's not back to normal, but it's also home. Our only upstairs neighbors are the occasional hyper squirrel and maybe a fox or rat....The peony is blooming! And the tomatoes are in. The cats are, well, they're cats. It's as if we never left.

We so look forward to connecting with friends. All in good time.

Home is

We are so thrilled to be home.
To sleep in our own bed. To be surrounded by our comforts. Our stuff of life.The scenery out our windows. Our furry creatures. Each a part of what makes home home.

Home is an interesting concept. I wrote before, home is where Dominic and I are together. (And where I have ziplock bags.) And yes, that is true. But home is also that place where you have everything just so. We each have a bedside lamp at home. We each have a place to rest our coffee in the morning and our water at night. We have a place for books and remotes and tech and the various bottles of prescriptions or sleep aids or painkillers.
Here is that place at our temporary home.

The wonder of the box. Cats sit in them. I lie next to them. I brought my own lamp. A sticker marked fragile is wrapped around the corner. Indeed. So true. Glamorous living.

We're working toward normalcy. It will take time. We know that. We talk about it. The fatigue is still a very real thing for Dom. The steroids did mask the fatigue, so now he rides the tide in and out, day by day. He's still neutropenic, which means we're still careful about the foods he eats. We have to think through things, being sure to eat safely while keeping in mind magnesium and potassium rich foods. Can I get an amen for dark chocolate? Rich in magnesium. Who knew?

I feel like I'm looking over my shoulder. I don't feel like something bad is going to happen. (It already did?) It's just after all this time of hospital stays and infusion center visits, it's a strange thing to be home and not anticipating a 5 day or 3 month stay. I can't shake it.
I know I will.

Over time.

There's so much to do at home also. There was much to do before that terrible day back in June. I've spent the last several days cutting back trees and pulling weeds. The neighbor goats are delighted with branch after branch of new oak cuttings. I have been resistant to cutting back the many saplings around our house, but last year's devastating fire changed my mind about that. There is a young oak tree just outside our bedroom window on the other side of the fence separating us from the former horse field. As I came up to the tree, I noticed a shrub below had burned and the flames reached up and burned a section of the tree. My gratefulness for all the people who saved our home bubbled up again. The acknowledgement of how precarious this past year has been washed over me as it does periodically, sometimes with rhyme and reason, sometimes with none. I have exponentially experienced the fragility of life this past year, and it causes me to simultaneously hold on tighter and relax my grip.

I do believe the transition has been complicated by this experience of the fires. The final months leading up to transplant day were colored by waiting and hoping for rain, and feeling so incredibly vulnerable.

I'll likely always feel vulnerable. I'll also always feel grateful and strong and capable and cared for. Life is complicated. This past year just added some incredible facets to the prism I see the world through.

And so now, we're settling into yet another temporary rhythm. A rhythm of first 3 days in one week to the infusion center, then 2 days, and hopefully soon just one and then none. The week of 3 visits tore me up. We've had our longest vacation this weekend. We've normally been  driving to Sacramento every Monday and Thursday, but this week, we don't return until Tuesday. I had four days in a row to settle. Four days that afforded me the time to work on the great outdoors and catch up on office work and watch some movies with Dom.

There's still bouts of discomfort for him. Constant little reminders of all he's been through, and all that lies ahead. We constantly hope and pray that he'll have little after effects, but it's all still a mystery how things will shake out.


We haven't been very sociable. We're still keeping pretty much to ourselves until his WBC goes up. My neighbor dropped something by while I was taking a walk last night, and I was kind of excessively sad I missed her. I almost called her back. I'm mostly an introvert, and a home body, but this has been a long haul. I could very possibly find myself enjoying small talk at this juncture.

I think it will all feel a little less transitory when summer comes. I love the winter. I love bundling up and snuggling under blankets. But I'm hoping by summer, Dominic will have his WBC back on track. I'm hoping he'll have more energy to be out and about. I'm hoping his windows of experience open wider. I think home is not just where we have our comforts but also where we feel safe to thrive. I think I'll feel more at home when Dominic can return to his camera and his rhythms of life.

We're astonished we're already here, we've already come this far. We can continue to make the slow transition and learn to thrive again.

Now, off to bed for his big day tomorrow! No more tri-fusion! No more ports in his body! A long shower without worry about getting the bandages wet is on the list of things to do tomorrow. For the first time in months, no Saran Wrap and tape. (Yep. He was like leftover veg, wrapped in kitchen plastic roll.) Tomorrow is yet another milestone of so many.

Forever grateful.

jiggity jig

The news is out. We are home! We are officially home. After one hundred plus days, the temporary home story is over and the transition to home sweet home begins.

I wish I had taken the time to sit and write so many thoughts...but it has been a whirlwind!

We began the transition back in February. We talked about what to do as our commitment to the house in Sacramento was coming to an end and the neighbor's ability to not tromp across the floors at 3 am was not coming to an end.

We made arrangements for friends to be with Dom while I spent a weekend getting our little cottage ready. I'd let the cats have free reign in our bedroom and after 3 months of their indoor/outdoor fur-bodies lounging on the bed, it was not pretty. Everything came off the bed and got a good wash. And, call me crazy, but I started spring cleaning from one corner of the room, all the way through the house. No, I'm not content to just vacuum, dust, and mop. I must go through every drawer and basket and cupboard and spring clean.

But I have to back up. You see, I was not the first person around here to spring clean. The tractor shed is attached to our home, and over the years, the shed became the final resting place for a lot of junk. (The homeowner's, not mine! I have plenty of junk myself, but perhaps not a garage door motor circa 1970.) Over the months we'd been gone, some special people had been weeding and cutting back bushes. And one day, a group of very special people spent love day cleaning out this space! No small feat. I parked, ready to tackle everything all at once, in the back of my mind knowing I would also tackle this space soon and.....it was already tackled! It was cleaned out! And, as I got closer to our porch, I saw pretty flowers fresh planted! My heart was swelling and racing. I felt so very loved.
It was like an Easter egg hunt, that's what I thought, as I walked around the house and found once empty flower pots and ceramics filled lovingly with flowers and succulents. And a young man had spent his day weed mowing until he ran out of string. I was so touched that the son of a friend would spend his day caring for us so tangibly. Our firewood was stacked neatly, and as I have stacked firewood myself, I know that was no small job. Everything looked so incredible. Our dear friends did what would take me weeks to do in one day. I still get a little verklempt thinking about it.

And they are dreaming of outdoor spaces with us. Dreaming of a summer spent outside in beauty, quite the opposite of this past summer. And I could not have better people in my life if I tried. I attribute it to Dom and his winning personality.

So, armed with all those good feelings, I set into the house. I covered the table in items that would be happier in other homes. I packed the last of Christmas away. I of course cuddled the kitties. And I vacillated between can this really be happening and we are coming home soon.

I spent the first day and a half doing the purge thing. There was an added layer of looking to replace things my Mom had lost in the fire and finding things I was so relieved were not lost. My heart still hurts when I think about the fire. It's crazy to me to think back to where we were that October. Dom was on round 6, the dreaded even round of chemo, and we still had not found a donor. There were possibilities, but no one clearly committed. I think we were as low as could be. And waking up to the terrible news that our city was on fire, our home was under threat, a beloved home lost already, and Dom not able to lift his head off the pillow, those were dark days. Those days, it was very difficult to imagine that someone would donate their stem cells and we'd find a place to live in Sacramento, and we'd make it through the 100 days.

And there I was. Preparing our nest that survived the fire, for my man who also survived his own fire. 100 days nearly complete and pretty little flowers to welcome us home.

And wouldn't you know, if I wasn't already emotional enough, my Aunt was doing some spring cleaning and purging of her own, and offered to send me some of my Grandma's things she'd been keeping. In figure, I am a carbon copy of her. My aunt sent me a couple pictures to see if I'd like the items or not. The black rain coat that was my Grandma's last coat I remember her wearing immediately brought tears to my eyes. There was just something about the cuffs that instead of buttons had little bows. The coat spoke to me also of the adventures my Grandma went on. She wore this coat to Switzerland and Chicago. She'd traveled Europe straight out of high school in 1938. Her steamer trunk with stickers from each country she visited sits in my house complete with much of her travel attire. She continued to travel as she could throughout her life. Somehow, that coat held so much Grandma, whom I love dearly. I'd already shared all this with my Mom, shared with her how I cried when the photo came, and cried again even as I shared this with her. I cried as I opened the box of treasures cleaning weekend, and shortly thereafter, Mom showed up. The coat fit her perfectly. It's raining even as I share this, and it makes me so happy that my Mom should have my Grandma's coat. (This Grandma is my Dad's mother.) But for my mom to have her coat just felt right in the midst of all that has happened.

And all of the above is to say, if you didn't already guess, this is an emotional time! But, I welcome the emotion. I welcome the connections and the history and the memories and the dreaming of better days and making new memories.

I scurried around for 2 nights and 3 days and with the help of Mom and friends, got it done. I feathered the nest and returned to Sacramento to scoop up Dominic. He'd had a great weekend with friends.

I packed up our little mini to the roof. (We'd arranged to pick up the rest, which also turned out to be to the roof, on our next doctor visit.) Dom stayed in the car as the first thing I packed up is his work computer. Once I could not shove a single other thing inside, we set off for home. I wondered how he'd feel heading home after 3 months of being away. We were mostly excited and relieved to be saying goodbye to the noisy house. No more elephants up stairs. No more metal kitchen with 20 pound flat ware clanging loudly every time we ate. And we were so longing for home. And, we were nervous as we weren't technically freed to go home. We just decided it was time. But, a part of us worried as we didn't want to jeopardize anything we'd worked so hard for.

Dom felt the same shock and awe I did as he walked up the path and saw all the work that had been done. He looked up at our green hills that were once brown from the fires. He scanned the tree line taking in the ones that burned down, and the ones that look like they'll make a comeback. He masked up and took a walk.

And now that we're "officially" home, the sweet relief can really settle in. Now that the doctor said it's "okay", we are sleeping like babies. He is extra fatigued right now, as the steroids he'd been on gave him energy. He's completely off steroids now, and the doctor cut out another medication yesterday. Each cut is a sign of moving forward. So, he's settling in slowly. I'd imagine it's bitter sweet to be home. Mostly sweet. But there's still limitations. We're still taking precautions as his White Blood Count is taking its sweet time rallying. It will be some time before he can integrate back in to work, and even more time before he can work in the garden or do things he'd normally do around here. But for now, he can wander around outside. He can set up his office and be inspired by tutorials and past images he's shot.

And I've already gotten my fingers in the soil. My neighbor took me on a surprise adventure and bought me a plant to put in the ground with all the fixings. She'd done some research and took me to just the spot for what was needed. We spent the next morning weeding out a spot that was once a jumble of pots, and carved out a plot for sweet peas and peonies.

Looking back, time did fly and move like molasses. I did not know what to expect, but I think things went better than expected. I bought Dominic a bell for Christmas, thinking he'd be an invalid barely able to move, and that was certainly not the case. He's been so strong, and has received so many compliments from the doctor and nurses for what a good patient he has been.

We still have many trips to Sacramento. There's still many tests and blood draws. But we're home! And the first tests returned very good results. Dom has just returned from a morning walk and our noisy black kitty is telling us what's what.

Numbers and Valentines

As I stood in the pantry that's really not my pantry last night, looking at the stores of food I've amassed, I felt a moment of embarrassment. I'm one of those socially awkward people that thinks about the weirdest things. Like, it looks like I've lived in this temporary house a long time....it doesn't look like I'm planning jail break in 2 weeks. I did bring all our food from home that would expire before March.  Some random flours and sugars Dom's experimenting with. My food is wedged in between the home's appliances and pots and pans in the pantry.  I feel awkward about these things because for instance, my neighbor saw me carrying in our dear friend's sleeping bag for when she stayed the night and teased me about where are we fitting all the stuff we're moving in to just a temporary house. Call me self conscious.

I love Dominic more than ice cream.

Anyway, when I looked at the pantry full of food, and let the embarrassment pass, I started counting (again). I count every day. How many days until we go home is number one. But then I count how many days we've actually been in Sacramento. 83 days. That's how many days since Dominic has been in his home. 77 days since transplant. They told us in the beginning we'd become fixated on the numbers of his CBC (complete blood count), but now I'm fixated on days too.

Staring at the food, I counted some other numbers. We've been in this apartment for 57 days. That means we've had 171 meals here. Well, actually, 169 1/2. It's not dinner time yet and my friend took me out for dinner one night. (Thanks friend!) Then I started trying to figure out how many meals I've eaten out since the diagnosis. Dominic's number is easy. Zero. He has eaten at a restaurant 0 times since June 15. It was just easier once he began chemo to isolate and eat neutropenic all the time. (Neutropenic describes both a patient's immunity and a very restrictive diet.) He also has not had a cappuccino since June. I believe the first thing we will do on March 8 is go out for a cappuccino.

I have eaten at a restaurant twice since June. Both times with the same friend. It's only fitting I should eat out with one of my foodiest friends. I've also had another friend bring me a giant delicious burrito, and that was nice. My Mom has brought me Chinese and pizza on my quick trips home. Our over night guest with the sleeping bag left some pizza here for me, and it may as well have been from a restaurant. ohmygoshitwassogood.
I have had the odd cup of coffee from Starbucks. I collect points from our ground coffee and redeem them for free cups of coffee. Don't hate my penny pinching ways!
So mostly all our meals that were not in a hospital have been at home. Two of Dom's meals were made by another friend with items fresh from his garden. See, I can't stop counting.

And it doesn't seem like a big deal at all until I scroll through social media and see how reliant people are on fast food to get through the day, or eating out to mark an event, or eating out because it's nice to, or eating out because they can, and I realize it really is kind of a big deal, this thing we're doing.

And honestly, I'm not chomping at the bit to eat out. I do look forward to it. I look forward to the day Dom and I can just decide we've had a long day and maybe someone else can cook and clean up. Not that I mind cooking or the clean up. Not that we went out much before. We really didn't. But to know that we can. That will be fun.

But for now, he continues to experiment with soups. (That's his thing right now. Next week, it could be something else.) We're grateful he even has an appetite. And we're grateful for every morsel of food.  And we're grateful to be on this journey together. I can't think of anything more romantic than standing by my man through thick and thin. I can't think of anything more romantic than this fight he has fought so hard, in part for me. This just might be the best Valentine's Day ever.
All these numbers, and there is no way to count the ways I love and am loved.

Walk with me

I've definitely lost blog steam. It's kind of a good thing. It means our journey is slowing down. It means the newness is old news and we press on hoping for continued good news.

As Dom and I take our walks through the neighborhood, I like to weave up and down the streets so we don't have to see the same things twice. We talk about whatever strikes our fancy in that moment. Sometimes politics, sometimes our plans for the future, sometimes whether or not we like a style of architecture or how we would improve a home. But every walk, every day, we count the number of days. We're on day 69, which means we've been in Sacramento 75 days, and will be here 31 more.

I saw this bloom on one of our walks, and it inspired me. It was the first sign of spring to come. It made me so hopeful of our new beginning.


As I share our journey, the cement footed creature is again making some journey back and forth across the floor above my head.

I feel like we're mostly in a wait and see game. I mostly just choose to see that he is healed and we'll be able to avoid the many potential struggles that lie ahead. He is doing really well. Surprisingly well. I was just chatting with him that recovery has gone better than I'd expected. I did buy him a decorative brass bell for Christmas, imagining he'd use it on his weak days. There weren't any.

His hair is coming in and I smile over and over at the daily changes. The eyebrows are very nearly back to their old selves. They did make the nurses laugh as they grew straight out for a week or two.

The white count dropped dangerously low a couple weeks or so ago. It's not out of the ordinary for that to happen. But Dr Carroll is always our calm in any storm. Occasionally, the nurses may express a bit of hand wringing in the numbers, and cause us a little alarm. One nurse loves to tell worst case scenario stories. Unless of course I jump to a worse case scenario, and then she tells me I'm over reacting. Her last story in response to our chagrin over the count dropping was of a transplant patient who had to go the infusion center twice a week for a year because he needed an infusion of blood and platelets. I'm sure we don't need to know that. But soon enough, the doctor makes his twice weekly visit, and all is calm.
It's called the 60 day slump. The count generally falls around 60 days naturally, and the steroids also make the white count drop. I guess we were getting a little prideful that his numbers were staying so strong, we were a little unprepared for the drop. But here we are, hopefully on the upward climb.

Time seems to be moving at a snail's pace, but the days go by fast. We look at the clock and wonder where the day went. They do go by especially fast when we spend our morning at the infusion center. Sometimes, I try to get a little crafty or roll out the yoga mat. But, generally, we both sit at our computers and work, or binge watch the latest offerings. I don't feel one bit of guilt about taking this time to watch whatever strikes my fancy.

The kids next door play in the little breezeway outside our front door throughout the day and we love to hear their little boy voices and imaginings. Mom's voice is always calm and Dad's voice is always animated. As much as I loathe the babies upstairs, I adore the ones next door. I honestly feel really grateful to get to have fresh little human beings so close.

We saw one of the kids who lives upstairs in passing the other day. He looks like he weighs all of 90 pounds and we scratch our heads at how he has such heavy feet.

We bought ear plugs, I moan a lot, and one day, this will all be a distant memory.

I splurged on a little African Violet at Trader Joe's a couple weeks ago. No plants inside, but I couldn't resist a little life right outside our front door.

Speaking of plants, we took a walk through our State Capital gardens. There's quite an array of trees and plants from all over. It's amazing to me that a tree from England grows very near a tropical tree from Florida. We admired the Capital building's architecture and read all the memorials we could find.
It feels like spring here now. I packed mostly cold weather clothing, because I thought surely we'd be here during winter, and it does get cold here. But it's been warm and looks to stay that way for a couple weeks at least. I hear the daffodils are blooming at home. They're my birthday flower, and I get a little possessive that they should bloom in March and not before. It will be so odd to return home soon and transition back to summer again. We can't wait.

With the white count so low, we've kept mostly to ourselves. Slowly, slowly we will be able to get out and explore.
Maybe, in our final days here, I'll have some more adventures to relate. Until then, Dom's blending up yet another soup concoction he's made, and I've got some binge watching to get back to.

Thinking with fondness of all our dear friends who walk with us.

Meanderings

Settling in to this new chapter, Dominic and I are never sure what to expect. We are on day 55 post transplant. It feels really good to be heading down hill.

We have daily discussions about how he's getting his strength back, how surprising all of this has been and how for the rest of our lives, we will be on high alert.

He is doing really well. We do get our hopes up that we'll be released to home before 100 days, and then try and just be in the moment.
We try and walk outside every day. We walk through the neighborhood and zig zag up and down different streets so I can look at different houses. Occasionally, we see a kitty, and I stop and will them to come to me. They look at me with barely curiosity and start grooming or run away. Dogs are all on leashes, and I tell them how handsome they are, but their owners never stop, I think because they see Dom masked up and it's awkward.
 Yesterday, we drove to another nearby neighborhood where every house could be in a movie. (Or a Thomas Kinkade painting. I like even those houses, much to Dom's dismay.) There were no for sale signs, and I suspect that once you arrive in this neighborhood, you don't leave.

I marvel at the amount of trash we produce (as well as dirty dishes). With our strict dietary guidelines, we're using a lot of single use packaging. It kills my tree hugging heart, but it's only for now.
Urban living is quite new to me. I've been so sheltered on my hillside for so many years. We park in an alley and there is very nearly every time someone out there digging through the trash. Dom is drinking a lot of bottled water, so I thought I'd do our outdoor neighbors a favor and put all monetary recyclables in a trash bag separately. I put it right on top feeling almost like I'd left this nice gift. (How twisted is that?) The next day, I noticed not only did they take the bag with all the bottles. They also took the bag that held all the non-monetary recyclables, and left those things in the yard waste bin. Then, I noticed a box label that one of Dom's prescriptions had come in, lying on the ground, and rational or not, I felt violated. I usually tear his name off prescription bottles and boxes and crumble the labels up into the stinky trash. I don't know. Something about his name and condition lying in the dirt got to me.

Dominic is feeling so much better, that some days, he makes his breakfast, or dinner for both of us. The prednisone to combat graft vs host disease has him eating like a bottomless pit. We were warned that many people have difficulty with appetite during this phase of treatment, and struggle to get calories, so I'm encouraging the current eating status.
We watch everyone at the infusion center. We note everything. Who is eating, who is coming in in a wheelchair, who gets in a chair, immediately reclines, gets a blanket and sleeps. We note that some people look really well. We talk with one of the patients who lived next door to us in the hospital and encourage one another. We know she was cut down to 3 visits a week and then bumped back to 7 due to a complication. We know that could happen to us too. We hope not, but the knowledge keeps us from complete relaxation.

But, we are trying to relax into this. Dom has the football on his phone right now, and is editing some images on the desktop. He's so eager to get back behind the camera. I'm eager to get home and tackle some of the clean up around the ranch to make it a little safer should there be another crazy fire next summer. But, while we're here, we watch a lot of Netflix. I'm able to work remotely, and while I'm in no way earning the big bucks, I'm happy I can stay on top of things. I had a conference call last week with someone from Canada and Dominic and I were both impressed with his way of navigating some at times challenging communication. Oh Canada. Wishing I still had relatives living there.

We're thinking that Dom is feeling well enough that we may start exploring a little more, as we did yesterday walking in a different neighborhood. This flu thing hitting everyone has us very wary. I was feeling really good about our hygiene. We wash and sanitize all the time. Now it seems, that is not even enough. I just read this flu may be spread just by breathing in someone's germy breath. Ugh. I'm contemplating wearing a mask when I go shopping. I've shot a lot of scornful looks lately. I finally broke down and got a flu shot. It was a huge and complicated decision for me. As I filled out the paperwork, I asked a couple questions. The pharmacists mistook my hesitancy for fear of the needle. While having a needle shoved in my arm is not my favorite thing, that really was the least of my worries. I shared with them that if my husband could endure 7 months of chemo and lumbar punctures and bone marrow biopsies, I could handle a little needle. It's what's in the needle....which, incidentally, I broke a needle getting booster shots when I was about 5 years old. I was so tensed up, I flexed an arm muscle and that was that.

Mean while, Dom's beard is growing in fast and furious! He has had to shave several times. His eyebrows are nearly in. He is at a stage where they're a little wild. (Shhh....don't tell him they were a little wild before all this happened.)

Part of the journey

I'm hesitant to write this post, and yet, I am using this blog to document all of this journey Dominic and I are on.

I share this not in any attempt for sympathy, but to serve a larger story. The story of how we treat our health care, and how very big the journey really is.

I was over the moon with our airbnb I snagged for the 100 days we're required to live within 20 minutes of the hospital. I spent hours trying to locate a place within walking distance, as I did not want to be stuck in traffic on a freeway should Dominic be sick along the way. We gloated as we were door to door in less than 10 minutes. We crowed to the nurses how happy we were with our place. I made sad faces to the other families in our shoes who had not found such great places.

Then. The reality set in. I waxed poetic on a yoga group page how when we drove by to see the place before moving in, there was a yoga mat hanging over the porch upstairs so they must be good people. Never mind the champagne bottle right next to it. Never mind my experience with yoga people includes like any other group, the good, the bad and the ugly. And. As it turns out, that bottle was a harbinger of ugly.

The first week we were here was Christmas. I assume it was perhaps not as noisy because the kids went home for the holidays. We'd hear blaring music throughout the day, but just suck it up. Then, New Year's Eve, the party lasted until 6 am. I kid you not. They did go to a bar somewhere in the night, and I caught a couple hours sleep. I thought when I was awakened by shouting and thumping and blaring that it must be midnight and they had been home and quiet since ten, and were just celebrating and didn't mind so much being awakened to ring in the new year. Alas, it was nearer to 2:30 and clearly, the clown posse had just rolled in from the bars. I frantically tried to sleep through the wump wump, and finally, at 6 am I gave up and got in the shower. It was all quiet when I got out. I've said this already, but if I had known taking a shower would shut them up.....

So. We didn't say anything. It was New Year. A one-off, right?

I tried to imagine, in the afternoons when elephants would pace for hours at a time in clogs on wooden floors that perhaps a fantastic chef lives upstairs and is just working magic in the kitchen. It didn't really ease my irritation. But I tried.

The dryer is broken. It doesn't shut off. I set a timer when I put the clothes in. I remember when I met the host of the airbnb how shocked I was when she showed me the shared laundry facility and there was rat feces on the wooden counter and the floor. She knew we would be immunocompromised, and need a clean space to live. I think she hoped I wouldn't notice. But I did. And was so worried about having a place to live, I didn't say anything. It's heartbreaking to think this is how so many people live all their lives. So worried all the time and not being able to speak up for oneself. Anyway.....the dryer doesn't shut off. One night, the noise of the dryer woke me at 2 am. Had it been running since the evening? Was the person doing laundry in the middle of the night? I lay there thinking about the full lint trap every time I'd done laundry. I lay there thinking about the dilapidated space the decades old washer and dryer was inhabiting. I lay there thinking about the fire that had decimated our city, and nearly burned our own house down. Finally, at 4:30 in the morning, I slipped on a jacket and scuffed out to the laundry room and shut the thing off.

I did this again, albeit earlier the next night. And again the following night.
The next morning, I ran into an upstairs neighbor scurrying up the back stairs with her pile of laundry (she honestly looked like a cockroach to me). I introduced myself, and in a considered way, told her that I'd been shutting the dryer off for her at night and did she know it doesn't shut off, and I hope she's okay with me touching her laundry to make sure it's dry. She looked at me wide eyed and said she thought it had suddenly started turning off again. She'd be sure and tell her room mates...She asked if we'd moved in down stairs and I explained to her that my husband has just undergone transplant surgery and we are living here to be near the hospital. I didn't tell her what kind. For all she knew, he could be laying in a bed right below her with a brand new heart or liver. Whatever the case, I told her we are here to recover and be medically safe.

And with that information, she proceeded to host a party, less than a week after what I thought was a one-off, one that lasted until 4:30 a.m. complete with thumping music, people smoking and yelling outside our window, and what sounded like wrestling and kettle bell dropping. They hit the bars from around midnight to after 2 and we hoped they'd actually been reasonable and shut it down at midnight. Nope. They're gone just long enough that we could fall asleep and be jarred awake upon their return. I later found out it only ended at 4:30 because that is when the landlord called them to shut it down. Who knows how much longer they would have gone. Till I got in the shower at 6, I assume.

I'd met our other downstairs neighbor last week. I really like her. She's friendly but not nosy. She and her husband have two small boys who sound like they are well loved and cherished. They had Christmas lights set out front and lots of Christmas cheer all around their small entrance when we moved in feeling beat up and ready to relax and recover. I told her we love to hear the boys playing outside throughout the day. I was warned by our airbnb host that the children next door might be noisy. The babies noisy??? The neighbor and I commiserated about the noisy upstairs and how we don't like to complain but....something's gotta give.
Here's what's funny to me. The woman next door is kind of rough looking. She has short punkish hair, tattoos in obvious places like right across her neck, while the baby girl upstairs when not looking like a cockroach looks like the girl next door, all blond and blue eyed and generic looking.  Just goes to show about books and covers....

I've contacted my host. We may be looking to move. I'm not sure yet. I met with the neighbor earlier today, and heard she and a third neighbor contacted the land lord who "texted" the group to shut it down after 4 am. We'll see how things get resolved.

Meanwhile, Dom and I are kind of miserable today. We dragged our tired bodies to the infusion center, and I could cry for my husband undergoing so much pain and misery even without selfish animals upstairs. (I mean, come on, you can't be ignorant enough to not know blaring music and yelling and thumping on hardwood floors is not going to be heard. Especially since they've been complained about before.)
We told everyone who would listen how miserable we were. Except the other transplant patient we lived next door to in the hospital. I didn't complain to her. Until she told me her situation. She opted for an Extended Stay nearby. I believe it was setup by the American Cancer Society. She found a cockroach in her place. (An actual one and not a scurrying human). She thought I'd found a great place and I clarified that for her. The ACS is frantically searching for a new place for her and she is prepared to have to move weekly or even nightly as different hotels can accommodate. And none of it is free.

The Social Worker and our Transplant coordinators are furious about the cockroach. For an immunocompromised person, a cockroach can mean death. Flash to the rat feces in our shared laundry facility.  Flash to me mentally taking inventory in our pantry and hoping we're at least cockroach free.

So. What to do with all this information....I don't know. I'm processing. Most of the time, I try and see the good in things. And of course I have a never ending well of gratefulness that so many people have made it possible for us to even be able to live here at all. I don't know what we would be doing otherwise. People are turned down for transplant if they cannot find a place to live nearby. But I think about the stress of cancer, and transplant, and unemployment and dealing with medical insurance drama....and then this. I think things need to change round these parts. I'm wondering if I know anyone who is a grant writer. I'm thinking there needs to be a place for people to stay in these situations. There used to be, but management in the hospital decided they didn't want to be liable. There are facilities available to patients at Davis, but not to Sutter. The most help available is through the ACS, and they are extremely limited in resources. As revealed by the cockroach story. I'm thinking that after such a furious fire in Sonoma County, and so much poison in the air, there's going to be a heavy influx of people needing treatment for cancer. I'm thinking a smoothie and cutting out sugar and eating garlic and whatever other wonder cure there is out there is not going to stand up against the ailments that are going to come out of our toxic environment.

I'm not trying to be doomsday. I'm just reading the signs.

I'm thinking that I'd like to be able to create an airbnb system for people who are in our shoes. I'm thinking the need is only going to get greater. I'm thinking this journey is not mine alone.
I'm thinking a lot right now. I'm thinking an aspect of this journey is still only in its infancy. I'm thinking there's so much to be grateful for.

*Addendum: We barely heard a peep yesterday. Whether it was because they were too tired to move or gone or because the landlord read them the riot act, it was blissfully quiet. We slept like babies. Now, if they can just keep up this quiet for a little while,  I can handle another party in the future (just not less than two weeks in the future.) We shall see.
*Addendum 2: The woman I'd met from upstairs came and apologized. It took a lot for her to apologize.
*Addendum 3: I think the woman upstairs apologized and got my number primarily so she could text me less than 2 weeks later to tell me it's her birthday weekend, and she'd be having a few friends over, but she promised she would not let them turn the stereo on. I, in what I thought was generosity said be as loud as you like until midnight. Which they did. We were awake until it got quiet around midnight. But, as I'm sure you've guessed, around 2:30 and here we go again. This time, I bundled up and met with the usual suspects smoking on the porch and asked to speak with anyone responsible. Cassie came out. Did I tell you her name is Cassie? I didn't, did I. We share a name. When she introduced herself as Cassie, I said I'm a Cassandra that has been called Cassie. She said she is a Cassandra, but she only pronounces it Cassondra. For those of you that know me, we've long had fun with my name, and when people ask me which way I prefer, I say I don't care, just don't call me Cathy. (Which a family member of a relative did for many years.) But she is a Cassondra. Got it.
I digress.
There I was, on the porch of strangers at somewhere around 3 in the morning, feeling a little faint because somewhere these past eight months I aged eighty years and turned into a little old lady. I explained to Cassie that had she been honest about her intentions, we may have rented a hotel. (Not true, really, but...) I did buy ear plugs, that turns out were worthless. (I didn't buy the blue ones as a wise friend recommended.) I felt like the crotchety neighbor that everyone in the party probably hates now. I felt like the get off my lawn guy. I felt like a horrible party pooper, and at the same time, the people on the porch had been told about Dominic, and yet there we were. Discussing the music blaring through our apartment in the wee hours. They can't know that the fabulous amazing music that sounds so great to them is only an insidious thumping by the time it gets downstairs.
The music was turned down this much, (for a visual, please see me pinching my thumb and forefinger completely together. That space between my fingers is how much they turned the music down.) I texted her at 3:30 and basically let her know her word means nothing to me now. And then the music stopped. Just before 4.
And I'm reminded again that so many people have no other choice but to live this way constantly.
Like the family of 4 living next to us downstairs, trying to get by.
Urban living. We've been spoiled in the country.

2017~The longest decade of my life. (John Pavlotvitz)

I cannot begrudge 2017 for what it took.  For in the taking, it gave so much.

There will also likely never be a more memorable new year's eve in our future as the one in which we made our way through our temporary new routine in our temporary apartment in our temporary city.
If you don't understand that nearly everything, in every year is temporary, perhaps now is a good time to begin embracing the concept. And while recognizing that so much in life is temporary; we see things of value are eternal. Love is eternal.

We celebrate the good things in life, but can we celebrate when things are not so good too?

I would never wish our experience on anyone. But, since we're here....

This is the year friendships were cemented. The year that friendships were renewed. The year that introduced us to so much kindness. The year that softened some of the edges of life.
The year that people astonished us in so many ways.
This is the year that while chaos surrounded us in a life-changing diagnosis, in our government, in our world, on our planet, we could rest comfortably in the now. It's always now. And in the now, we knew there were countless people praying and chanting and hoping and loving. In the now, we knew we were powerless to change anything by ourselves. In the now, we knew we were held.

This is the year that people sacrificed their own comforts and leisure activities to give to us.
This is the year that people sent us cyber flowers because we could not enjoy them in our home.
This is the year that Facebook introduced heart emojis as a reaction, and there just weren't enough hearts to express my gratitude for all the loving thoughts and care we've received.
Or enough hearts for all the good I've seen in the world.
This is the year that in our little city, people experienced tragedy, and in the face of tragedy, stood strong. This is the year that people stopped and looked each other in the eye a little longer. Strangers shared their stories and realized they had things in common. This is the year that saw greater political divide. Except in tragedy. No one cared who you voted for in flood or fire.
This is the year Santa really did come to so many children who'd lost so much. He left gifts using the hands of people who couldn't let Christmas go by without doing for others.

This is the year I have so much to be grateful for. I'm in no hurry for 2018. I don't want it to be 2017 forever either. This is the year that nothing matters and everything matters. I used to think each year was like a chapter in a book; a way of referencing what is happening in life. I'm not sure that works for me anymore, as this year had several chapters. The cancer chapter. The chemo chapter. The fire chapter. The transplant chapter. The recovery chapter. And those weren't even the first chapters in this volume. There was a chapter for visiting family overseas. And a chapter for teaching yoga, and branching out in photography. There were chapters of gardening and exploring and enjoying. There was a chapter of his family meets my family and it's beautiful. Perhaps each year is more like a volume, and some volumes have more chapters than others. 2017 is definitely a heavy volume. And we enter 2018 hoping for the best a year can offer, but somewhere deeper down, I am hoping 2018 will elaborate on the chapters of kindness. I am hoping that 2018 will elaborate on the new chapters of friendships that have blossomed, and that whatever chapters are contained in 2018, I can find appreciation for them.

Sometimes the years can seem "like a quick succession of busy nothings." Sometimes they can seem like a "decade". Sometimes, a year is like a large rock in a river, totally changing the course of the river. But the river still flows. The one thing that is consistent in every year is life happens. In big ways. In small ways. The flow of life continues. I want to appreciate all that life is. It gives and it takes.

And as I reflect on all that life has brought in 2017, cheers to all of you who have left an imprint on these chapters of our lives. Cheers to all of you who have been our life line. Cheers to the years that ask the questions, and cheers to the years that provide the answers. Cheers to this year bringing some of both. Cheers to 2017 and all the beautiful people it contained. Cheers to 2018 and all the hope I approach it with. Cheers to you, and to some day in the future I can look you in the eye and say thank you for being part of 2017.  With much love.

Happy New Year!

A Rash for Christmas

Who would ask for a rash for Christmas? Who would even celebrate a rash for Christmas?

We would.

We'd already enjoyed our Christmas Eve dinner with my mother. We woke early and discovered that Santa still brings stockings to grown ups even when they are away from home. Stockings are one of my favorite parts of Christmas, even if their contents include items that are in the pantry most of the time anyway. And one can never go wrong with chocolate. Fortified with the joy of giving and chocolate, we made it to our 8 am infusion appointment. While Dom got his magnesium, I took my mom on a tour of our last seven months. I wasn't prepared for the tears that welled up as I walked with my mom down the hallways I'd so frequently walked with her on the other end of the phone. It amplified for me that we are never really alone. She met some favorite familiar faces, people giving up their Christmas to care for others, (and let's be honest, over-time is nice).....but they all worked graciously and I'm so grateful for them. I collected my hugs and we returned to Dom.

Who'd been slowly developing a rash. A rash on Christmas Day that to us served as a sign of the gift of life that Dominic has received.

A rash is a sign of Graft Verses Host Disease.
Some doctors see mild GVHD as a sign that the new cells are fighting any residual cancer cells. Risks of cancer returning after transplant are lowered with signs of early GVHD. We'd hoped for a sign. We asked for a sign.

It's funny; I had a vision yesterday. It came completely out of the blue. Not thinking of the technicalities of this process, or really any specifics at all, I was just walking; I saw some of the cells in Dom's body exploding, almost like in a Star Wars movie, they just disintegrated. I had a flashback of the robot in the hospital that uses UV light to destroy germs. The woman who uses the robot described to us seeing the process under a microscope. The germs would literally explode under the UV rays like someone had taken a hammer to them and made them "splat."

I didn't think overmuch of this, but made it part of my constant prayer. My constant prayer being that his new army will win, and good health will be his.

We want so much for Dominic to get through this year with minimal discomfort and maximum healing. I want to see him able to live life to the fullest; even fuller for all we've experienced.

I called it our Christmas miracle; this rash that the nurses had a little meeting about and told us to keep an eye on. It could get worse. It could. But, I looked at Kathleen, and saw a twinkle in her eye, and somehow believe that as she said, it could be a very good sign.

And as with so many things in life, we must experience a little discomfort before the good comes along.

On this Christmas Day, now that the stockings have been emptied again, the cheese and chocolate have been consumed, we've bid farewell to my mom and the day is winding down, I think of how we've never been alone. Miracles can and do happen. And, we will be hard pressed to top this Christmas.

Merry Christmas to all. With much love from Dom and Cass.

Temporary Home

 

The last few days have been a blur! Monday started with a bag of delicious Christmas goodies from friends hand delivered with a great visit. After the visit, I packed up the car to unload in our temporary apartment. I went to a couple places to get groceries and bits and bobs for this next chapter. What is it? Chapter 3? 4? 5? Not sure. It's the next chapter though!

Tuesday, out came the arm pic line. I ran some more bags to the house

Dom's a little overwhelmed. He didn't see proper daylight for about a month, so yesterday was a big day on many levels.

We left the hospital with hugs and a touch of sadness knowing it's our last hospital stay. (That's a declarative statement. I don't want to hope it's our last stay. It just *is*).

He's content with our little apartment. It's very comfy. First thing was a cup of coffee. Also a first in a month. (Hospital coffee was a big no for him). He made himself right at home, no problem. 

I ran out again for all the things I'd forgotten the day before. I had to pick up his new prescriptions. I left the pharmacy with what looked like groceries. Seriously. I think one of Dom's biggest challenges at this juncture is the quantity of pills necessary to keep him going. The pills will taper off over the year; but for now, it's all pills, all the time.

This morning, we're back in the saddle at the infusion center. We will come here every morning around 8 to have all his labs drawn so the doctor can do a bunch of math equations and then we adjust medication accordingly. He'll receive any blood product he may need as well. It's a minimum two hour visit and can stretch to eight if he needs anything.

A dear friend told us to enjoy the next couple months and just relax. Ha ha! After our 8 am appointments, we will.

Our neighborhood is full of tony little restaurants. When we'd tell the same nurses who love to talk about the 100 days where we'd be living, they'd all tell us about the great restaurants. The 100 days is the minimum amount of days Dom cannot go to a restaurant. So. Um. Thanks for the heads up that we cannot go to a bunch of great places....But seriously, if you come to visit, you'll find great places to eat. There's also a natural foods market within walking distance. 

About a mile away is East Sacramento. You guys. I bundled Dom into the car last night for a Christmas lights tour. These streets are long and wide and have beautiful large homes set back off the street. If you love twinkly lights, this is the place to go. They wrap the city trees, and hang lengths of lights with a wreath in the middle across the street. Horse drawn carriages carry tourists through the neighborhood and booze crews cycle a big trolly through. It was quite the scene. I thought it would be a nice thing to do where he'd be safe in the car away from people.

 Looking ahead; there are still many milestones to cross and a long road to walk. It is recommended that he wear a mask even through the next twelve months. No yard work, or wood work. For those of you that don't know, part of our livelihood is mowing the tall grass where we live and pulling weeds. Dominic was feeling eager to gain his strength back and get back on the tractor and get on some piles of wood from some tree-work we had done. All of that will have to wait. It's essentially not just one year of work he is losing, but closer to two. We will do what we can, but this process seems to really be stretching out before us. 

As far as the transplant is concerned, he's doing really well. Unfortunately, some of the issues related to transplant do not even pop up until six months post transplant. Of course we're just seeing him healthy and well moving forward. But, it is also important to be vigilant in looking for any signs of change. We're so grateful for having been carried this far. And we know we will be carried all the way. 

On a final funny note, because I can't end this post thinking about the long road ahead, I leave you with this. I think Dominic is a model patient. I think I am a model caretaker. When his discharge nurse wanted to sit us down and explain the Neutropenic diet to us, I kind of wondered what he thought we'd been doing the past 7 months? I asked him about International travel next Christmas. He got a very worried expression, and explained to me that we'd have daily appointments for now and that we need to live nearby for the next 100 days. Yes. That is why we rented a place nearby. But what about next Christmas? That's well after 100 days away. Ohhhhhh....he said. I thought you meant this Christmas. This Christmas that is one week away. He thought I was asking if we could hop on a plane and fly over the ocean. You know. In between our daily visits to the Infusion center. It makes me wonder what kind of patients they take care of that this thought even occurred to him. 

I teased him about it the rest of the morning. Because that is how I handle stress. And nonsense.

We're about to be released from the infusion center. Netflix binge-watching, here we come! xoxo