Here We Go Again…

Long time no catch up on my running or my health. So here goes…
Last year I started writing a blog about my ‘running life in ruins’ that was never posted. Our move to the foothills had seemed to have a major impact on my training in terms of endurance and speed. I was blaming it on the big changes that had come my way and the lack of somewhat flat bike trails on which to train. My unpublished first draft ended in describing how I was on the upswing. I felt things were coming together. But that feeling was short lived. My second draft never left my head. It was an ongoing discussion with myself how things were truly not getting better. I joined a local gym and began doing a lot of running on the treadmill to supplement the neighborhood workouts that were all steep hills. After weeks of training, I ran almost my worst half marathon ever. I tried a local seven mile race and was very disappointed in my speed. On New Years Day I ran one of my slowest trail half marathons ever. I was discouraged, but I kept training. I was entered in Boston 2017 in April, after all. I ran some long runs in my ‘hood but decided to give that up when I realized I was in danger. There are no shoulders on the roads and I was battling deep ditches full of water and fast drivers not expecting runners on the road. I went full time to the gym and felt it was working. But it wasn’t. I couldn’t duplicate the paces I dialed up when I was out on the open road. In the meantime I started suffering severe anxiety attacks that seemed to come out of nowhere. I wasn’t sad, scared or nervous when they came on. It was just a horrible feeling that came over me for no apparent reason. But I made good on my plans to go to Boston anyway. It is such an honor to be there.
It was quite a rough trip as it turns out. The anxiety came on full force, and I felt trapped in a spiral of worry, even though I had long decided this marathon was one I simply wanted to finish. And that I did, just barely under the time limit, my worst 26.2 by almost an hour. I never felt like myself the entire day. I spent a good amount of time walking. But I did it, and although it was my worst marathon ever, I know I earned my medal. The best part of the day was finding my dear Erin at Athletes’ Village before the start. We had not been on the same bus and it was luck that we connected among the 30,000 runners there that day.

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I hadn’t wanted to make excuses, but at this point, I was beginning to realize there was something wrong unrelated to my training.
I need to back up to March. My local oncologist, Dr Sun, looking at the fact that my proteinuria had never been resolved, decided it was time for another bone marrow biopsy. There were some questionable findings and some additional tests, but in the end, just before Boston, he said things looked OK. He was leaving the practice and was handing me over to a new doctor for future visits. I was worried as I had a lot of faith in my doctor and would miss him. I had grown very attached to him and felt his care was the best.
In May, I met Dr. Choi, my new doctor. I liked her instantly and my fears of working with someone new were laid to rest. She quickly put me on a medication that put an end to my anxiety attacks. . She was very friendly but also very concerned and thought it would be a good idea to see my Stanford doctors again, and I was all too happy to do that. I was struggling with increased swelling and I had gained weight. I hadn’t changed my eating and up to that point, was still working out. I felt like I had no control of my body.
Before I knew it, I was off to see both Dr Liedtke the hematologist and Dr Lafayette the nephrologist again. Both concurred that my light chain numbers , which measure Amyloid production, were slightly high and that perhaps I was no longer in a solid remission. This could be causing my kidneys to keep leaking protein. Dr Liedtke recommended a newer drug called Daratumumab, an antibody treatment.
I’m fortunate to have the team at Stanford, who have always seen me quickly with any new development, and my insurance company, Cigna, which has approved all of these expensive treatments.
The protocol for Dara is to do the first dose over two days, then one dose weekly for 9 weeks. It’s given intravenously over a 3-4 hour period, and with blood work and pre-meds, it ends up being about a 5 hour appointment after the initial slower dose. Then every other week for 24 weeks, then monthly until disease progression. Yeh, until it comes back! Yikes! But I’m used to all that sort of doom and gloom by now! It doesn’t get me down.
Although I am receiving treatment in Pleasant Hill, my first two treatments were given at Stanford so I could be monitored carefully for reactions, which are most common on the first day. And react I did…a stuffy nose, severe cough and my blood oxygen levels plummeting. But it was over quickly as the nurses stepped in with oxygen and drugs, which provided smooth sailing from there on out.

Subsequent treatments have been uneventful and I’ve gotten into a routine. Each time I think I’m going to get some work or writing done and each time, the benedryl puts me out. I enjoy a nice nap. The other pre-med is my old friend dexamathazone, with tends to wire me up, although not until later on in the day, and then give me a ‘crash’ two days later. But it’s all good. I treat myself to a Jamba Juice on the way to each appointment and the nurses have been  absolutely wonderful.

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My light chains fell back to a normal level within two weeks. Swelling has still been a problem in spite of an aggressive rise in the amount of diuretics I have been taking. I had a recent 24 hour urine test and unfortunately the level of protein has reached an all time high yet again, 5500 mg, or 5.5 grams.
I received those results on the same day as a scheduled follow up with Dr Liedtke in mid October at Stanford. Although changes in the kidney typically lag behind light chain results, she seemed very concerned. After all, I’ve been waiting for four years for my kidneys to catch up and it’s never happened! She is wondering if perhaps other light chains, which are not showing up on the tests, are being produced. I will be starting a new drug called Carfilzomib very soon, that will be given IV as well, two days a week, for 3 out of 4 weeks, along with the Dara.
During all this time, I have let my workouts slide. Having no goals in mind and a feeling like the gym is too far away, have led me to get very lax as far as my fitness routine. I’ve done some hiking and kayaking but nothing on a regular basis and really no running at all. I’ve decided to take this time to perhaps let myself miss running. While I have always enjoyed having a goal, I’m taking time to relax and not be on a timeline, and I think it’s been very good for me at this point. When I come back, I’ll be ready. I’m hoping during this time, my kidneys will get a chance to heal.

My life is incredibly full. I love being home with my animals. I’ve jumped into hosting our little guesthouse on Airbnb. On my trips to the Bay Area to work, I visit with friends and shop at the stores that we don’t have here, because you know I don’t live in ‘civilization’ anymore. The kids are all doing great. Business is good. We are going to be opening up for pet sitting in a new area soon. I flew to New Orleans to attend the 2017 PSI conference and had a ton of fun of doing a presentation on chickens. I’m forever the ‘chicken lady’ now.

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Yep, it’s all good!

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From 2 to 5 in 30 Minutes

It’s been a year now that we have been in our home. It still feels new after twelve months, having lived in our previous house for seventeen years, but we have fully settled in. We have named our place ‘Heather Hill’.

We have seen each season now. We moved in during wildflower season and watched the green turn to the dry beige grass of summer. The creek that flowed in the spring dried up during the summer, but came back with the autumn rains. In August we picked wild blackberries. We got snow in the winter as we had hoped, which blanketed the property in a beauty that we could not have anticipated. We smell the pine trees. That is, when we can breathe. The beauty of the area in which we live still takes our breath away.

In December, we added two new family members, Gypsy and Bluebell, both female Nigerian Dwarf goats. Bluebell had been bred a few weeks earlier, but we would not know if the breeding was successful for several months.

As the days grew longer at the end of March, something else was growing too. We noticed Blue’s expanding girth and udder. It was a sign that babies were on the way!

Her due date was Thursday, April 27th, a date I needed to be in the Bay Area for an important doctor appointment with my new oncologist. Luckily for me, on Wednesday afternoon the 26th, she became restless and appeared ready to bring her new little ones into the world. I began watching her at 4:30. By 5:30, she was pushing.

As I expected, the first baby began to emerge inside a sac as if in a sausage casing.  Howard likened it to the tube he had used as a drive up teller to receive deposits from customers inside their cars. As the new little being struggled, I helped Blue tear the membrane apart, awaiting the first precious breaths.

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The ‘Birthday’

 

The firstborn was a girl, or doeling, colored just like her mom. A few minutes later, a tan boy, a ‘buckling’, appeared, with a white spot on his head. Shortly after, another doeling was born, tan with a white ring encircling her body. By 6:00 pm, she was all done. Our temporary names were Blackie, Spot and Ringer.

Unlike puppies and kittens, baby goats, or ‘kids’, are born with eyes open and the ability to stand within minutes of birth. I have seen why they need to stand, as the mama goat does not lay down and allow them to nurse at leisure. They compete for the two available teats and grab on forcefully in the limited time Bluebell has patience for feeding. It seems to be a minute here and there and then she walks away!

After watching the newborns for a while, we realized ‘Blackie’ was unable to stand. Her right foreleg appeared to be stuck in a bent position and we were unable to dislodge it. A call to the vet sent us to Tractor Supply for a needle and syringe, and to our goat mentor’s house for a medication to give by injection. A selenium deficiency was suspected, but it was later determined that this was not the case. It appears to be a birth defect of some kind. Perhaps being crammed in the womb with two other babies had caused it. Fortunately, she learned to stand within a day of her birth. Several days and numerous phone calls later, it was determined the next course of action will be a consult with the large animal veterinarians at UC Davis. We have an appointment coming up on May 23rd. She is getting stronger each day, only lagging behind the other kids in development by a day or two.

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‘Cassidy’

The babies now have real names. Our little ‘hopalong’ who now gets around quite well on three legs, is named ‘Cassidy’. The buck is called ‘Cyrus’ and little Ringer is ‘Cecelia’ or CC.

We were prepared for cute, but we are on cuteness overload. There is cute, really cute and super cute. And then there is ‘stinkin’ cute’. Bingo! Baby goat videos don’t lie. Several times a day, I have to stop whatever else I am doing and hike out to see the goat family.

Gypsy is a good auntie for the kids and gets along well with them and Bluebell.  We have started letting them free range to eat the growing greenery, the product of this last wonderful rainy winter. Their silly antics make me laugh and force me to let go of anything negative that could possibly be on my mind. I’ve had some stressful moments lately and this little family has been just what the doctor ordered!

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The kids with Aunt Gypsy

We think we may keep all of them. Howard loves the idea of these little automatic lawn mowers and I can say the idea of never having to say goodbye to any of them suits me fine. We had originally planned to start learning the fine art of goat milking by now, but life has sort of gotten in the way temporarily. ( We have a son who is keeping us very busy this month with major life events!) Fortunately, there is still time to master the skill.

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The landscapers at work on the front lawn

Stay tuned for more adventures from Heather Hill. I’m sure there will be many!

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The Dream Run

I haven’t written about the 2016 Boston Marathon. It was in April.

The day after our return flight home, we were signing papers on our new house. It was a whirlwind of activity that only got more blustery as time went by. I was unpacking and transitioning to running a business from 120 miles away. But here goes…

It did happen. (It was on facebook, after all.) I was able to realize my dream, that of running this race with my best friends Paula and Erin. I didn’t have a great training cycle going into it, however, distracted with the remodel and sale of our Concord home. Still, I felt all along what many qualifiers feel, that the marathon itself is a victory lap. To be able to enter this race is the prize. Running it is the icing and the cherry on top. It was that feeling that carried me through, even when I was discouraged after some of my runs in training.

I am a cold weather runner. I love hot dry summers, but when it’s time to run,  I will take 40 degrees over 65 any time. Boston can do all things in April. In the 120 year history of this race, runners have had everything from blizzards to heat waves and everything in between. This year looked a bit warm. Most marathons start early in the morning. Boston has a tradition of starting much later. Being an older female, my time dictates that I’m in the last ‘wave’, translating into an 11:15 start time.

Speedy Erin was in an earlier wave, and as Paula and I walked with the masses to the start line, I felt a sense of dread. It was about 70 degrees. If I’m not shivering before the start of a race, it’s way too warm. Coupled with less than stellar workouts the previous few weeks, I was just hoping to get through it.

My own attitude disturbed me. I had waited months, make that years, to run this race again. Just getting there, even without all the medical obstacles that had been in my way, should have been enough to make me incredibly happy that day. I knew it was up to me to make or break this day. Would I be able to shake off these feelings and enjoy it? I was hopeful. I had 4 hours to turn myself around. As a little way of giving back to the Amyloidosis community for all their support, I had written the names of patients and caregivers on the inside of my race bib. I had a responsibility to run a good race for them. I know how lucky I am.

When the gun went off, I tried to focus. The first few miles are slightly downhill and I kept on a good pace in spite of feeling a little ‘off’. As always, the crowds were fantastic and I wanted very much to have fun. I wasn’t quite there yet. I have always equated my faster runs with the good ones and the slower ones with being disasters. I usually don’t run races ‘for fun’. I like to set time goals. Hence, the struggle.

At about mile 9, I tripped on something and went down, hitting the same knee and elbow I had bruised two weeks before, while falling on a training run. I had barely hit the ground when two male runners, one on each side, grabbed my arms and stood me up. They asked  if I was OK, then quickly took off, resuming their pace. Frustration in my clumsiness (what I tripped on was probably air) quickly turned to admiration. That is what runners do, that is who runners are. No wonder I love the running community.

I was a little sore, but this is a race, so I didn’t stop long enough to see how much blood there was.  It wasn’t dripping on my shoe, so it couldn’t be too bad. As I regained my form, it was as if some sense had been knocked into my head, via my knee. I had a light bulb moment with myself. This is your day! Enjoy it! Get into the crowds! Take the orange slices and high five the kids along the way!

So I did.

And a funny thing happened. I started to feel the joy. I appreciated all the thousands of spectators who came out to see the race and cheer. I laughed at the signs. I anticipated the “scream tunnel” that was coming at Wellesley college. It would a be a good run. Not my fastest, but why not one of the best?

I hit the half mark right about 2 hours, but I knew I couldn’t maintain that pace to finish in 4. I set an attainable goal of finishing in under four and half hours. I had built in time to get tired, but still finish in what I thought would be a respectable time. And I could have fun.

So I did.

Finish Boston

I crossed the finish line in 4:25, happy and smiling that I have been blessed enough to run this race 4 times. Howard was there in the crowd just before the finish and I was elated to see him!  After  wading through the crowds, my friends and I were reunited. Paula and Erin had had good races too. The knee was wasn’t very bloody. I would survive.

I learned a lot that day. That run taught me more than all the graphs and charts of my running history on Garmin Connect ever could.

(“And there is always next year” said the competitor within…I can use my time from CIM in December…signups were this last week!)

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How I Woke up in Pollock Pines

Yep! One day the ol’ phone alarm went off and as I gazed out the window, I had an urge to tell Toto we weren’t in Kansas anymore…or was it our dog Stacy that I needed to tell we were not in Concord? Confusing times, these are!

Because, if I’m not mistaken, someone replaced my familiar suburbia with a whole bunch of pine trees where my sidewalks used to be.

In reality, this transition has taken months, but at times it does seem as if it has happened overnight and I’m still wondering how I got here.

Back in 1988, Howard and I had moved from our hometown of Salinas to begin a new adventure in the Walnut Creek/Concord area, sparked by a job change for him. We had barely settled in to a rental condo and it seemed that another opportunity with his company could take us to Sacramento. We spent a few weekends driving around the Sierra foothills in awe of the beauty. Ultimately, for reasons long forgotten, we decided to plant roots, (and dig deep we did) in Contra Costa County, bypassing the move northeast. Happiness ensued.

Lake Tahoe became a favorite destination of ours, especially after my parents bought a condo in Kings Beach on the north shore. Although we loved where we lived, every  time we drove up or down, we felt a pull to the towns along the way…what would it be like to retire in Auburn or somewhere up there?

But 2013 came along and I was diagnosed with Amyloidosis. My world came to a halt and I felt that I no longer had any choices. The Santa Paula Drive house, which we purchased in 1998, would be my last, the house in which I would die. I had no visions of being able to work enough to help us qualify for another mortgage,  and moving became the last thing on my mind. As treatment progressed, I was told that my prognosis was not so grim, and fear was replaced with contentment. I realized how happy I was there. I resolved to stay, not out of force, but because I loved it there. We had a full life with many friends.

We began making improvements for the long term, such as wiring underneath the pavers we had had installed in the yard for a future backyard kitchen.

Then one day I was running along with my best friend Erin and she casually mentioned that she and her husband Pete would be moving to Bend, Oregon some time in the next year. Her casual attitude about the whole thing was somewhat of a shock. I managed to keep running with her for about 7 more miles and have coffee afterward too, without shedding a tear. When I got home, it was a different story.  The floodgates opened. All I could do was hope their house wouldn’t sell! I later learned that she had tried to tell me several times before and could not bring herself to do so. This made me feel a lot better, but the fact is, I was still losing her to another state.

Just as I was getting used to that idea, during a coaching session, my running coach Andy told me he was moving out of state as well.  I knew he would be going back to Colorado at some point, but kept hoping it would be a long time away. That would be ‘no’.

I came home and blurted out to Howard “Well, everyone is moving, we should just move up to the Sierra foothills now.”

That is how it started!

No, two couples moving is not everyone. There are many people in my life with whom I’m close. I would still have my friends Paula and Mary Ann and my sister Joanne near by, along with many other friends. It was a silly thing to say, but you have to watch ‘silly’ around Howard.

Before I knew it, he had contacted  real estate agent. We both love house hunting. I knew this was a very dangerous thing. Howard had always talked about buying me “Kimmy’s farm” and I had been having dreams of goats dancing in my head. But I didn’t want to move! I kept asking him if he had told Chris, our agent, that I really was not at all sure I wanted to do this. At the same time, I was spending all my free time on realtor.com.

Here’s the thing. I really balk at change. I am a creature of habit. I tend to stick with what works. All of my cats as an adult have been orange. My personal dogs have all been English Setters. Cars?  Hondas, and make it a stick shift.   I mean,  I have been married to same guy for almost 34 years. Living in Contra Costa County was working for me.

I was torn. I struggled constantly with the decision. I didn’t really want to leave, but when a job opportunity opened up for Howard, it seemed to be a clear sign. I felt we should take the chance while we could. I am doing well health wise, but one never knows what it is around the next corner.

There is a side of me that loves adventure. And the dream of the farm. And those damn goat videos. If it were not for goat videos, I’m not sure if I would be writing this right now.

Then there is the fact that our move from Salinas had occurred at age 28. We were now turning  56 this year. Obviously we were supposed to come here and stay until the age of 84.

I was hoping to find something on our many scouting trips with Chris, because I wanted to know there was a place for us up there. At the same time, I was hoping we would not, as our house was not ready to sell. Just as we got to the point where I thought we should stop looking and work on our house, there it was. I had expanded my search to Pollock Pines for a better chance of…wait for it…snow!  The first photo that came up was a traditional looking white house with a dusting of snow on the roof. It didn’t just have a pretty face. It was beautiful on the inside too. It was all over at that point.

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Chris cautioned me this was short sale, the house was somewhat remote and it had a gravel driveway. I was not to be deterred!

What followed shortly after was the world’s fastest house remodel and a lot of work to get our house sold. Buying the new one was no walk in the park. It wasn’t easy.  It wasn’t a whole lot of fun. In the end, however, it was ours!

We are settling into small town life.  No sidewalks. No milk from the store just down the street. (Goats may solve the milk problem in the near future) ) It’s quite a hike to take the garbage cans to the pick up spot. We have to worry about bears. But then again, our driveway functions just fine. We have a seasonal stream on our property and nightly visits from the neighborhood deer. The sounds of crickets and frogs have replaced the roar of cars and BART trains. Checkers at the market call me “honey” and “sweetie” and the PC police are nowhere to be found. I like that. Small town life agrees with me. There are benefits to being here that I had no idea I would find. I am making friends.

I still wake up and wonder how I got here. One thing is for sure. I am happy I am waking up here.

 

 

 

 

 

The Love of a Cat

 

I lost a good friend a couple of weeks ago.
It was my cat, Sherman. He was a good cat.
We were very close.

Our life with Sherman began in 2003, when we were providing daily feeding and litter box service to an elderly gentleman named Nick. He had eight cats when it became clear he would need to move to an assisted living facility. Nick would need to place all of them in new homes. My hubby Howard, who was the most frequent sitter there, called me and told me that Nick had an orange cat named Pepe that I would surely love. I didn’t know how Autumn, our female orange cat, would feel about it, but we decided to give it a try.

Autumn had been a solo cat for nine years and didn’t appreciate the change, but there was no bloodshed. Life with two cats progressed in a natural evolution. Growls at each other turned into ‘dirty looks” in passing and finally acceptance. The biggest hurdle for Pepe, who soon became ‘Sherman’, was the kids. Lots of them. For the first month we had him, Sherman stayed in my office closet by day and ventured out only when the ‘wee’ ones, then ages two, six, eleven and thirteen, were all in bed.

One thing cats have taught me, however, is that they can take months or years to adapt to new companions. I didn’t feel close to Sherman at first. He was somewhat shy and a bit standoffish. Fortunately, that would change. It took  about three years, but his true personality eventually came through. He adjusted to the kids and not only tolerated them, but he began to love them too.

He seemed to take a special liking to me and I was quite happy about that. In his later years, he followed me around. We used to allow him access to the front yard and if he was on the porch when I was gone, he would walk down the sidewalk to greet me in the driveway, when my car pulled in. On more than one occasion, he followed me on walks around the block, more than a quarter mile in length. When he wasn’t sitting in front of my monitor or walking on my keyboard, he was sitting behind me in my office chair. I would often forget he was there and look around to see him there. Yes, he had been there for hours while I had been working.

Autumn passed away and two more orange cats came on the scene. That was another adjustment that was still ongoing, but progressing well. Hissing turned to tolerance and finally acceptance. The three existed in what could loosely be termed harmony.

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He participated in the planking challenge I did in 2013.

 

When I went to Stanford for my stem cell transplant two years ago, I tried to prepare my family for my absence. There was not, however, very much I could do for my cat. Toward the end of my stay, Howard gave me increasingly more concerning reports about a very distraught cat at home. Apparently he did a lot of wandering around looking for me. On the day I got home, we had a good long ‘sit’ on the sofa and he was a happy boy.

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Always a good sport, he consented to posing with Georgia the hen on New Year’s Eve 2013.

Last year, he seemed to be losing weight. We had him tested for all the usual old cat maladies and nothing definitive came up. In January, just as we began prepping our house for sale, he began having explosive diarrhea in some very inconvenient locations. It was off to the vet again! We got him started on some meds and the vet said it could be either a form of irritable bowel syndrome or lymphoma. He responded to treatment so we thought it was IBS. He did great for a while and made the move to our new house.

His appetite had been ravenous this entire time, but a few weeks ago, he stopped eating. We quickly found a new vet in Placerville who diagnosed kidney failure. Whether or not it was acute and could be turned around, or end stage failure, was something only time would tell. We opted to treat him with subcutaneous fluids twice daily. Having a scheduled trip to Tahoe that week, I simply packed him up and took him along. I wanted to be sure he got his fluids, but more importantly, I wanted the time with him. I knew it might be our last week together and I was right. My ravenous cat never took another bite and after a week, it was clear his time had come. Pictured below on his last outing outside. He was 15.

 

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I miss you Sherman. I’ve been holding back the tears but I knew writing about you would flood my mind with memories and the precipitation has begun.

 

You were a very good cat.

 

 

 

 

 

 

Hats are for Amateurs and Other Tales of TMI

Every so often in the land of medical adventures, there are times when one has to pull out the TMI card. You know, more than you may have wanted to know. But having the choice between laughing and crying, I think you know where I fall on that one. And laughing alone isn’t as much fun as sharing it.

And such is the case, with the beloved 24 hour urine test. Fellow Amyloidosis patients know of what I speak, but I think this secret is too special to keep within the confines our select little group.

Back in 2013, when it was first discovered that I had high levels of protein in my urine on a “spot check” with a dipstick,  I was told that I needed to do this test. I was to collect all of my urine (OK, I’m just going straight to the potty talk here) OK,  pee, for an entire 24 hour period and store it in a jug to be taken to the lab. This is how they determine how much protein is spilled from my kidneys every 24 hours.  I was a little shocked. Drawing my blood was fine with me, but this…I found to be somewhat embarrassing, intrusive, and not what I had in mind to do when there were perfectly good toilets just about everywhere I looked!

But hell, I figured, I’m a runner, I’ve peed behind bushes out on the trails. This should be a piece of cake. I could do this once, right?

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(Above, keeping my sample cool in the fridge, I just had to make sure my kids knew not to grab a swig out of this one.)

So, at the lab, they give you this handy little aid to catch the pee, so you can easily pour it into the jug. You put it on the toilet seat. It looks like a hat, so, what do you know, they call it a … hat!

The results of the first test showed what they suspected, that I needed to go see a nephrologist, the kidney specialist. I was then scheduled for a kidney biopsy.  The results of that were inconclusive at first. They called and cancelled my appointment to get the results, since they still didn’t know what was wrong. So to keep me amused, they had me do another 24 urine test. I didn’t think it was funny at all. But I needed a laugh, so I got a cool pic of me and my hat.

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What I didn’t know was that they were using the extra time, 5 days,  to do a special staining with one called Congo Red, just to be sure it wasn’t Amyloidosis. But it was Amyloidosis. And that has sealed the deal on a whole lot more 24 urine tests in my life.

After about 3 or 4 of these tests, I managed to meet my ‘disease friend’ Kathy Koontz, online, and we started sharing the good times we have with all this testing stuff. By this time, I was feeling quite proficient at skipping the hat, the middle man, so to speak, and going straight to the jug.  So was Kathy,  having been diagnosed in 2013 as well. She told me a story of once when her husband caught her, shall we say, finishing up one of the procedures, at a time when the lab had forgotten to give her a hat, and let’s just say she coined the term “Hats are for amateurs.” That’s been one of my mantras now. In the voice of Forrest Gump, I can here myself saying, “It’s one less thing, ya know?”

I have enough stuff to carry around, you see. On long  work days, when I’m doing a test, I have to take the jug and keep it in a cooler in my car. The protein molecules are destroyed at higher temperatures and if allowed to get too warm, the test will not be accurate. Say what you want about this blog, but it IS educational! So, at Howard’s request, I use my own little cooler. Nope, I don’t think he wants his beer in THAT cooler anymore!

It definitely has gotten easier to have a rather casual attitude about the whole thing. Like my daughter’s schedule at UCSB, my 24 hour tests are now on the quarter system. If my kidneys would ever get their act together and go back to normal, like other good little kidneys, I could stop this nonsense. But for now, it’s every three months. I just finished my tenth one.

The lab usually gives me the jug ahead of time, so I can bring it in when I have my blood draw, a week before my doctor appointment. They give it to me in a bag. I don’t even bother with the bag anymore. It’s just an empty jug. I have, however, always returned the filled container in a plastic bag. I still have a little class, after all.

Until last time. I had no bag in the car. I needed to get my sample in, so the results would be ready in time for my appointment. I arrived at the building where my lab is on the second floor. It’s a pretty busy cancer center, but the lobby is often empty. What would be the harm of dashing in and running up the stairs with my jug?

I walked through the doors, only to discover they were having some sort of reception in the lobby, for about 50 people. I’m not sure how many were medical professionals, but I’m quite sure a few of them knew what I had in my hand. They were all dressed up, munching on yummy little appetizers, and I was weaving my way through the lobby with a jug full of pee.

As soon as I got that sprint of shame done and was in the stair well, it was almost too much. I was bursting with laughter by the time I got up to the second floor and met up with the receptionist at my doctor’s office.

I told her my new expanded mantra: “Hats are for amateurs, bags are for sissies!”

 

Jug Incognito

(I suppose one could come up with a clever disguise if they felt the need…)

As far as my results are going, well, I’m flunking the pee tests. My numbers started out at 2200 mg (2.2 grams) of protein in 2013 (normal is less than 150 mg) and have progressed steadily up to the 4000’s. I dipped to 3000 in June,  but was back up to 4000 in September.I scored a 4500 in December and just pulled off a 4300 this March. So, long term it has been trending up, although it would be better for my kidneys if the numbers started going the other way. I see the nephrologist at Stanford in a few weeks for a check up.

However, my light chain numbers look good. The Kappa Lambda ratio, an indicator of the producers of Amyloid, is something we watch and it’s looking great. My oncologist is going to let me get through April this year without a bone marrow biopsy! I’m pretty ecstatic about that. Now the only thing after my blood this next month is the IRS!

Scan_20160321 (5)

(I wanted to be cool like my friend Kathy, so I made a graph, but since I’m computer illiterate, I had to draw my own))

 

But overall, I’m a happy girl. I know how fortunate I am. I have a major move in my life coming up, which I will start talking about soon. I’m busy training for the Boston Marathon, my dream come true…that once in a lifetime thing I’m going to be doing for the 4th time on April 18th. I’m so excited to be going with Erin and Paula and our husbands, Howard, Pete and Mike. And since my next pee test isn’t until June, I get to pee in toilets the whole trip!

 

Hey, She Got to Fly Off to DC Again!

As I have attempted to play catch up, I have found the best way to talk about my trip to DC in November is to let someone else do it. Kathy Koontz  will be my guest columnist, so to speak. With her permission, I have provided the link to her blog. In it, she describes the amazing meeting that took place with the FDA in DC on November 16, 2015. She summarized the events in greater detail and far more eloquently than I could have done. Thank you, Kathy!

It was a meeting with members of the Amyloidosis community:  researchers, doctors, patients and care givers. It was part of a plan to meet with various groups, especially among those of the rare disease world, to better meet the needs for new drugs and treatments. The difficulties in obtaining new treatments in the ‘rare community’ are many. There are fewer people for studies, and fewer patients who need drugs to be developed that are incredibly costly. It’s one of those things I had little interest in, until it became a huge part of my life!  When I got the word that I would be able to go, I got my plane ticket and planned a very fast trip there and back.

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(I had a 22 miler to run that morning, and I was on a red-eye that night…it’s all good!)

 

I was excited to be part of something this important. And very excited for another reason as well. I was going to be able to meet Kathy in person! We had met on facebook and found we had so many things in common, in addition to the fact we both have Amyloidosis. Kathy is an accomplished cyclist, and has ridden  180 miles in one weekend to raise funds for cancer, more than once, and this is after her stem cell transplant in 2013. Truly a soul sister! And then there is the fact that she has a cat named Rory and I have a daughter Rory. I could go on and on…she’s a real badass on skies too. Meeting her was everything I hoped it would be. We had a great time during the little over 24 hours we go to spend together.

KandK

Kim and Kathy, at last!

I was very excited to meet Carole Harber and Joanne Campbell as well.

The stories told at the meeting were, as Kathy said, both heart warming and gut wrenching. I thought I had heard it all before. That’s not even close to reality! There are so  many variations and experiences, even though we have the same disease. And there is so much to be learned. And I think the FDA learned a lot too. That’s a very good thing.

I was told by Dena Heath, the leader of our local support group, that the FDA considered this meeting, organized by the Amyloidosis Research Consortium,  to be one of the best organized of all the meetings they’ve had with various disease groups. It will be considered the standard by which all meetings in the future will be formatted. It was a success on many levels!

DCMeeting

 

So, for more in depth coverage, here is the link to Kathy’s blog:

http://www.katseyeview.blogspot.com/2015/11/36-hours-in-dc.html

 

Thank you Kathy!

 

The Best Mother-in-Law Ever

I’m way behind.

If 2015 was a pleasure cruise, 2016 is a freight train. It’s been roaring in, fast and furious, with what I believe will be many good things. But for now, I’m just trying to apply the brakes for a bit.

There are many events I’ve wanted to write about. The longer I put it off, the more thoughts inside me are building up. It’s time. I need to start.

We got a call while at a party on New Year’s Day, in the evening. Howard dropped everything and went to be with his sisters and his mom, who was not doing well. She was failing fast and they knew it was time. Thankfully, he was able to arrive in Fresno before she passed away in the first couple of hours of January 2nd. She was born 4 days before my dad, on September 21, 1921. She was 94.

Audrey was a very special person to me. When I met her, back in 1980, I liked her instantly. I knew my new friend, Howard, came from good stock. His parents were good people. My mom always told me that you don’t marry the man, you marry the family, too. I liked this family. And that’s good. Because I really liked Howard.

She was always kind and thoughtful. I know that her son could have married a better housekeeper, but Audrey either seemed to understand me or was very good at forgiving me for my failings. She never made me feel like I was lacking. She simply dived in to help when she was visiting. Always ready to hold a baby, to fold laundry, to help cook.

She was one of the most positive people I know. She battled breast cancer in 1983, and I don’t think I can recall one day when she wasn’t more concerned about everyone else than she was about herself. She just gave of herself all the time. She made it through that tough time, and I think that positive spirit fueled her recovery. I learned a lot from her.

My parents became friends with Audrey and Will, my father-in-law,who passed away in 2007. It was just another thing I loved about my in-laws. It’s as if Howard and I got to be ‘match makers’ in the friends department. They did things together…without us.

Audrey made the most amazing lemon meringue pie. I didn’t realize how good it was until I tasted other lemon meringue pie. Audrey made hers from scratch. It was the best. She always said she was a ‘plain cook’, nothing fancy, mostly meat and potatoes. And I will give her that, there were not a lot of exotic meals. But oh, was her food good! And there was always plenty of it. You could not go hungry when you were at Audrey’s house.

Audrey

We were going to my brother’s house in Chico for Christmas this year, so we made a trip to Fresno on the 16th of December to have a little Christmas dinner-in-advance. This would give us time with Audrey, and Howard’s sisters, Heidi and Nadine. It turned out to be a busy time for my business, although we don’t normally get really busy until about the 20th. Howard said he understood if I couldn’t make it. It would mean 6 hours travel time alone, in addition to our visit. I told him there was no way I would miss this. That’s why I have a staff. Family is important to me. And she was the last parent we had. I’m really glad I went. Rory was home from school for Christmas break and she got to come too. We are pictured above on that day. It was our last day together.

Sweet, wonderful Audrey Ann Tank, rest in peace. I loved you so much.

Just a hug for 2015

I was sitting here tonight, taking a break from a decluttering project that is 17 years in the making, and I realized that maybe I will just write a blog to top off the day.

It’s been a productive day, digging out of lots and lots of stuff, for a reason that I’ll elaborate on in a future blog. Just know, a new adventure appears to be on the horizon.

I’m overdue. I still am going to write about my latest trip to DC, (Yeh, I went AGAIN!) and I have another posting, one of those philosophical ones I write when I have just too much time on my hands, but I am feeling the need to talk about 2015.

Because, I almost can’t believe it.

I had a wish in the beginning. I wished for the two R’s. I wanted to be in remission all year. And I wanted to run all year. I wasn’t so sure it could happen. But it did.

I didn’t spend a single night in the hospital in 2015.

I didn’t get any bad news about my health.

For the first time since I started training with my coach, Andy, in April of 2012, I have gone 12 straight months without taking a break for injury…or worse.

And it’s been amazing.

It was the year of making up for lost time.

In a typical year, I might take one plane trip. My record is 2. I flew 5 times in 2015.

I have usually run one or two marathons, tops, in any calendar year. This last year, I did 4.

It was just so special because I know now how easily it is for things to fall apart. And so grateful when they don’t.

I enjoyed getting back to work. I love what I do. And I love it even more now. I just finished a really busy Christmas season as a pet sitter and even on the longest days, I had a huge sense of satisfaction that I was providing peace of mind to my clients.

It’s a good life.

So, I wanted to start the new year off right.

Last year I posted about how I ran the Brazen race on New Year’s Day because that’s what I do every year, and I was happy that I crossed the finish line with my good buddy, my brother-in-law Randy.

Well, Randy was off on a cruise this year, and I was celebrating my 5 year “friendaversary” with Erin. The first time we ever chatted was while running the Brazen New Year’s Day Half Marathon in 2011.

Pictured below, me in mostly black, Erin in the FMRC shirt, we are crossing the finish together, not because we ran together, and had a leisurely chat along the way, but because we both ran our hearts out, as fast as we could, and ended up at the finish together. (OK, ignore the guy in between us) It was a pretty special moment, and one I will never forget. Both of us ran our fastest time ever on that course, which is not, I can assure you, a 10K for sissies. (Clock is for the Half marathon time, 25 minutes+)

KandE

So, welcome 2016!

I’m ready for you! Hopeful for good times ahead. I’m aware that not all times are great, but I feel I have the tools to deal with what life brings on!

Let’s do this!