Of Pokes and Ports and Pools

It’s been a couple of months now, and I’m pleased to say I am tolerating the new drug, Carfilzomib, brand name Kyprolis, very well. I’m now on the ‘Dara’ (Daratumumab AKA Darzolex) just once a month, but I’m getting the Kyprolis 6 times every three weeks, so I am getting to know my nurses very well! The Kyprolis visits are relatively short, lasting an hour to 2 hours each time, depending on whether we are doing lab work, etc. On the Dara day each month, the Kyprolis adds another 10 minutes onto the 5 hour visit. The Dara days are the nap days. I’m still getting nothing done, but it is incredibly relaxing as the Benedryl takes hold and I’m off to a delicious dreamland for an hour or two or three.

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I’m struggling with a lot of swelling and weight gain. My nephrologist increased my diuretics, but with that came a drop in my potassium level. No matter how much extra potassium I took, I could not get the level back up again. And it’s not fun to take those pills. They are so big, they could have their own zip code. So, I’m temporarily off the diuretics and my potassium has now gone back to normal. And I am getting ‘fatter” by the minute. I’m sure we will get this resolved by changing the drug. It’s just frustrating.

In November Dr Choi asked me if I would like to have a port installed. This would mean I would have a device under my skin that would provide easy access to my vein. It would eliminate a nurse needing to find a good vein each time. Being as how my treatment may go on indefinitely, we both thought this would be a good way to preserve my veins. They are good now, but how many pokes can they take on a regular basis? As usual, my insurance approved it right away and before I knew it, I was being prepped for the procedure. As with everything else, I was having it done in the Bay Area. Howard couldn’t be there, but my dear friend Paula could be. She stayed with me up until they wheeled me away. Then I was picked up by my sister Joanne and pampered the rest of the day. I’m a lucky girl.

I was sore. That was for sure. The port is in my chest, with a tube that leads into a major vessel by my heart. It is similar to the central line I had for my stem cell transplant in 2014. So I had a realistic expectation of how I would feel after. And as before, I was pretty much back to normal in a couple of days. But I have a bump. Silly me, I didn’t think to ask if it could be seen once it was in. Not that it would have mattered, but I have an extra little bump now. It’s still a little itchy and it bugs me now and then, but all in all, a small price to pay. The needle sticks I have now aren’t exactly painless, but they are quick and there are no extra pokes trying to find the vein.

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(If you look closely, You can see the tubing that goes to the major vessel)

So each time I have an infusion, they insert a needle through my skin, into the port and tape it up for the duration of my visit. On the days where I am there back to back (right now, Tuesday and Wednesday) the nurse will sometimes ask if I want the needle left in for the next day. They can tape it so I am not poked the next day. I always decline. With my active, busy lifestyle, it never seems like a good idea. And a couple of weeks ago, this truly came to light.

It was a Wednesday morning. I was taking care of two dogs at around 7 am on a cold frosty morning. One of the dogs, Gatsby, loves to play ball. On my last throw of the morning (it’s always the last throw!) I tossed the ball and it landed, of course, in the pool! I tried swishing the water to get the ball toward the edge of the deep end in which it had landed. Making little progress, I grabbed the Chuck-it, the device I had been using to toss the ball farther. If you aren’t familiar, it’s a long plastic handle with a ball shaped cup at the end…it can make a pitcher out of the lousiest throwers (me). As I was leaning over the water, mentally congratulating myself on my ingenuity, my cell phone, which had been in my jacket pocket, took a flying leap into, you guessed it…the pool!

Oh no! No water proof case, no nothing. I watched as my poor little iphone dove to the bottom of the deep end. Net? Where is the net? This was a very nice home with a large yard.  They have a putting green near the pool. Surely, they have a net. I ran frantically through the yard, knowing seconds counted. Did I have insurance on this phone? How mad would Howard be when I recounted the tale of how I lost this one?I had flushed one down a toilet in 2010 and shortly after I lost one to a cat water dish. I had thought my days of death by drowning for my phones were over.

There was no net. At least not in any practical places. But I did find a long handle that looked like a net belonged on the end. It was tedious but I managed to move the phone along, gradually toward the shallow end. It would slip and I would lose ground but for every step lost, I eventually gained two. I managed to get it over to the shallow end, which, it turned out, was not all that shallow. There was a gigantic step before the true shallow end of the pool. There was no way my ‘handle’ could ‘handle’ that! So, I braced myself to reach in the water. My arms could not reach. Maybe if I put my head under the water, and leaned over all the way, I could reach it. Thus required a serious ‘talking to’ to myself as to just how much retrieving this phone was worth…on a cold January morning, in an unheated pool. And after this long, underwater for maybe 10 minutes, without oxygen, was this phone likely to live? Ultimately, I went for it. But in spite of submerging my head in frigid water, I could not reach that ‘blanketey blank’ phone.

I thought. And I thought. I thought all the the thinks I could think. It was a Pooh Bear and Eeyore moment. Surely, there was a way to retrieve that jar of honey….I mean, phone. But no. I came to one conclusion.  I would have to get in.  All.  The.  Way.  As in, my actual body.

So I did. The only way I could rescue my phone was to completely submerge my body in the water. My own little Polar Plunge, just like the one across the street when I lived steps away from Ygnacio Wood Swim Club. The screams of the little children still echoed in my ears. And I had now done it myself.

Fortunately for me, I had a change of clothes in the car, being the nomad that I am two to three days a week on my treks to the Bay Area.

But back to the phone….I rushed it with sirens blaring to the pantry of my clients. What they lacked in nets, they made up for in rice. I had heard that putting a wet phone in a bag of rice can bring it back to life, although my brave little phone had never lost consciousness, bravely keeping its light on throughout the whole ordeal. I stole the bag of rice, notifying my clients of course, and then proceeded to put it on the dash of my car with the defrost on. It was working, although the screen was somewhat blurry, with weird little lines going across it.

Arriving at my scheduled infusion a few hours later, ( I asked for a blanket right away this time, still a bit chilled) I reiterated to my nurse… “Yes, I have an active lifestyle…. that is why you should not leave the needle inserted into my port over night!”

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My phone…warming up with our ‘blankey’. By the end of the day, all was right in its world. Back to normal!

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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!

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!

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(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.

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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!

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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!

 

All Over!

The original title of this post was going to be “Utah!”, as in an ad I’ve seen for said state. But I realized that I’ve been a pretty busy traveler this last month, so there is more to the story than that.

I belong to an organization called Pet Sitters International. They hold annual conferences around the country and this year, the location was Myrtle Beach, South Carolina. I was especially happy to be able to attend this year, as I was in the hospital at the time of last year’s meeting, and I had really missed seeing everyone. I flew in on September 11th.

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Friends and fellow sitters Cathy from Texas and Amy from New York

I was part of a panel discussion with two other sitters, answering questions from the audience. I also attended some great sessions on animal behavior and business issues. My favorite part is always seeing my friends from around the country. In addition to offering continuing education for sitters, we as a group always raise money at our auction to benefit a local animal charity. This year we raised $30,000! Pictured below is a somewhat pricey chicken that ended up in my suitcase and was part of the cause…thanks to a little help from my sweet ‘other Kim’  from Ohio!

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I had such a great time that I just did not get to that 16 miler that was assigned until the last minute and ended up doing it on a treadmill. Yes, 10 miles more than I had ever run on a ‘mill.  Mental toughness, we meet again!

The first full day I was home, the 16th,  was a busy one. I had to go to my oncologist’s office to have blood drawn, then down to the imaging center for an MRI my neurologist had requested. I get them yearly to monitor the cervical stenosis in my spine, but really, I just like lying there in a tube for 45 minutes with the sound of a helicopter landing on my head!

The irony in all of this is that before my other appointments, my most important job of the day was to register for Boston.  I am officially in!  My dear friends Erin and Paula are also signed up and it is part of my dream come true!

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Next up was a day trip on the 19th to take Rory off to college at UCSB. A hard day for her mom, but very exciting for her! (And it should not have been a day trip…’twas a very long day in the car!) Good luck to the best daughter ever!

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On the 22nd, I met with my doctor and got the results from my lab work. As I had hoped, the numbers still show that I am in remission. Sigh of relief! My kidney numbers, however, are still high. It is a source of frustration, but I can hardly complain. I am living my life quite happily. When and if my kidneys become an issue, I will deal with it then. And my neck is in a holding pattern. It’s all good there. Back to our regularly scheduled program….

A few days later, Howard and I were off to Tahoe to celebrate September 25th + 33 years. A little cycling, a little running, kayaking and mini golf. We had a really nice time, just the two of us.

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And now, it was down to a few days before my St. George trip with Pete and Erin and this one entailed, yes, another marathon! We left on the 1st and our race was the 3rd. I was feeling a little frazzled going into the trip and wondering if my training would suffice. Coach Andy knows me well and his advice this time was to “chill out”. I tried, I really tried.

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Pete snapped a photo of Erin and me keeping warm by the campfire at the race start. It was dark…and early.

I can’t say I skipped the pre race jitters the day before, but I was so relaxed the morning of the race I told my buddies I just didn’t feel like running at all. They did remind that we had been bused 26 miles out of town.  There was only one option to get back, so like it or not, I was going to have to get back on my own two feet. Fortunately when the gun went off, the running switch flipped over to on, and it was game on!

There is a lot of downhill on this course, even more than at Mountains2Beach. But there was some pretty decent uphill too, and it wasn’t easy. I hit 20 miles at 3:01. Not as fast as my last race, but still in the game to come in under…you can probably guess by now….4:10.

Then at 20.5, ouch! Leg cramp! It stopped me in my tracks. Fortunately there was a volunteer nearby with some “Icy Hot” which is good for sore muscles. I was counting on the placebo effect, if nothing else. A minute later I started running again. I cramped up again and had to stop about 5 more times, but convinced myself that when I wasn’t stopped, I had to be running.  There was no time to walk this one in.

In the last half mile, I could see the balloons at the finish line all the way down the street. It seemed to take a lifetime. But I finally made it with 99 seconds to spare. Hello 4:08:21!

It was a great race and well organized. Everyone we met in town seemed really supportive. The best part was that I was once again racing with my ‘partners in crime’.  Erin ran a 3:45! Pete ran a 4:14! PRs for both!

We were all pretty sore Sunday, but still managed a short hike. Monday was set aside for two national parks. We visited Zion and Bryce Canyon. Amazing! I must go back and hike among the hoodoos!

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What a way to cap off a great trip!

I’m back in Concord for now, except for some short little hops here and there. I’ve had a great time.  I am so thankful to be healthy enough to be able to travel.  Still, it’s good to be home!

Day +365

In some ways, it has flown by. It’s been a year now since I had my transplant. The day we call day zero was August 19, 2014.  Last year, I arrived at the hospital on the 15th, had chemo for two days, then a day of rest. The 19th was the day my cells were returned to me, and sparked the beginning of what we hope is a brand new healthier immune system.

So far, so good.

I could only think of one way to celebrate.

I made the trek to Stanford to visit my old hangout, the E1 unit. My friends Kerry and Jan, both of whom had visited me there last summer, came along.

I was a little nervous at first, because I didn’t want to be in the way. That fear lasted about 2 seconds. As soon as I got there, a crowd gathered around. It was the nurses’ idea to get a picture, so we posed. They remembered me… “You were in 124!”. Yep!

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I had a bag of goodies which included some cookies for the nurses. In addition, I tried to think of things the patients might like. One of my favorite things I had while there was the soft blanket that friends Gina and Fatma had given me, so I brought a couple of those I had purchased, along with some colorful scarves. I washed some of my hats and brought those too. They have a basket where patients can choose hats to wear. I took a few of the chicken photos from last year and made some cards for the patients too. I received so much last year and it felt good to be on the giving end for once.

I asked if any of the patients might want a visitor and they had someone in mind. I spent some time with Theresa, who had been there six months! She was dealing with “GVHD” which is Graft vs Host Disease. This is a potential complication of an “allogenic” transplant, the type where a donor’s cells are used. (I had an autologous one, with my own cells)

Theresa told me she had an almost 2 year old son at home and I felt like my heart was going to break for her. I cannot imagine what that must be like. We talked for a while in her room, after she did a few laps around the unit. She hoped to be home for his birthday at the end of the month. In spite of her rough road, she had the most beautiful smile, especially when talking about her son. I have been thinking of Theresa each day since. If you are the praying type, please say one for her.

The drive back in commute traffic made for a long day, especially after parting ways with Jan and then Kerry. But it was one of those days I realized I would not have wanted to be anywhere else. It just seemed right.

I have had a terrific year. Good by any standards, not just for someone recovering from a stem cell transplant. I am not sure why I am so blessed, but it has made me grateful for every day. I think there is more I’m supposed to do with my life. I’m excited to see what the next year brings, one day at a time.

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And yes, Erin did this to mark my first re-birthday!

Of Bumper Stickers and Light Bulbs

Let’s get this out of the way first. I was in my favorite place when I wrote this post.  Lake Tahoe. The first one is across the street from Safeway, which is ALWAYS my first stop, to buy milk for the kids, of course. The second pic is Squaw Valley along my running route on Saturday. I just got back and I’m missing it already.

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Squaw

I wasn’t going to do it. I wrote a long blog post about all sorts of things related to dying and I changed my mind.

I didn’t want to get bogged down with that. I mean, “The sun is shining, the day is young, we’ve got our whole lives ahead of us and you’re worrying about a burned out light bulb?”

Oh, you probably wouldn’t get that…it’s from “How many dogs does it take to change a light bulb?”, and that’s the Golden Retriever’s response. I’m feeling like a Golden today.  Light bulbs, dying….that stuff can be put away for another day.

Oh, but I changed my mind again. That’s because I think it’s only natural to contemplate one’s mortality when one has lost several friends in rapid succession.

In addition to losing my dad recently, I lost a friend who had breast cancer. She was just 47. Then I lost a friend from my Amyloidosis support group.  She was 52 and had it in her kidneys like I do. That was followed shortly after by the death of Brad. I didn’t know him personally but I followed his blog. I thought of him as a friend. He was tough and strong. Until Multiple Myeloma took him out.

I’ve been existing in a pretty happy place for a while, where I have felt that I’m going to be OK for a long time to come. And I still am. But in light of these recent tragedies, I’ve been doing a lot of thinking about how I ‘should’ feel. Which is really ridiculous, because there isn’t ever any way anyone ‘should’ feel. But I’m caught in between wanting to have the most hope for the future and the reality that remissions do not generally last forever with this disease.  I want to live a normal life like everyone else, but I don’t want to be in denial.

These thoughts bring me to a bumper sticker I recall seeing a while back. “You cannot simultaneously prevent and prepare for war.” It’s a little gem from Albert Einstein and it makes sense to me. When I was first diagnosed and all kinds of thoughts were swirling around in my head, I thought about that concept, replacing the word ‘war’ with ‘dying’. I wondered if you could fight the good fight (so as to prevent dying) and at the same time have a calm acceptance that it might happen. I mean, would acceptance be giving up? Would you lose the ability to fight? Or could they coexist? My brain started to hurt. I was not used to getting all philosophical.

I decided that you could. You have to. Or, specifically, I had to. I knew I would always do whatever I could to fight. But it was when I felt I had an acceptance that I might die from this,  that I was able to move on and be happy again. It’s hard to explain unless you’ve been there, but I think it freed me up to be the person I was supposed to be, expiration date or not.

We all die. If not sooner, then certainly later. One of my favorite (?) expressions is that we can all get hit by a truck tomorrow. There are no guarantees. I can be taken out by a standard issue truck tomorrow like anyone else. But I also know there is a truck out there with my name on it. (It’s probably teal in color) And I can’t lie. That changes you.

I strive for the balance all the time. I plan to be around for a long time. I want to see my kids get married and have kids. I’m pretty confident I will. But when I think about the deaths of my friends, I see how things can change, and sometimes pretty quickly. So I try to live like I don’t have 30 years, even though I promised Howard I wouldn’t go anywhere for at least that long.  That’s not to say I’m going crazy. I’m not spending every dime I have to get out there and travel the world…yet…anyway. I’m just very aware that as things become doable, they should be done. (Hoping that trip to bike through France becomes doable if you know what I mean….) I find great comfort in the fact that I’ve been on the right track all along. The things I want now are very much the same things I wanted before, so I feel I have always had a clear perception of what is important to me.

And as far as how I am doing now, the answer is… very well. When I’ve brought up concerns to my various doctors lately, I have to qualify everything, as in, “Yes, my ankles have been very swollen and I’m retaining a lot of water, but I kinda sorta ran this marathon that went really well last month. You can put me at a 10 on your ‘quality of life’ scale that I know you have in the chart.” Yes, I am grateful. The joy from my last race has not exactly worn off. I know I’ve got it good. I don’t forget that for a second.

Speaking of ankles, I did get in to see the nephrologist (kidney specialist) at Stanford who is on the Amyloid team. I’m not going to have another kidney biopsy anytime soon. He just feels my high level of proteinuria (protein spill into the urine) may not resolve itself, although it is possible it still could turn around. About half of patients in remission continue with nephrotic syndrome (that’s what chronic proteinuria is called) and half of those go onto kidney failure at some point. I can go on diuretics to treat the symptoms if I like, but the one drug that might help control the spill will lower my (already low)  blood pressure too much. I’d rather not faint while out running. Thanks,  but no thanks.

So I didn’t hear what I wanted to hear. Discouraging? A little. Knowing this, and thinking about my friends who have passed away, is just a little reminder, that this thing that I have managed to store in the back of my head, is, in fact, something real.

But I keep in mind the bumper sticker. And the hope. And the sunshine. And how I’m not going to change any light bulbs today.

And how, if worse come to worse, hold onto to your kidneys. Because I may be coming after one of them!

Just kidding, I’m going after my long list of family members first. 🙂

But wait,

How many dogs DOES it take to change a light bulb?

Greyhound: It isn’t moving. Who cares?

Siberian Husky: Light bulb? I ate the light bulb. And the lamp. And the coffee table it sat on, and the carpet underneath the table…..

Pointer: I see it! There it is! Right there!

Irish Wolfhound: Can somebody else do it? I’ve got a hangover.

Border Collie: Just one. And I’ll replace any wiring that’s not up to code.

Cocker Spaniel: Why change it? I can still pee on the carpet in the dark.

Australian Shepherd: First you put all the bulbs in a little circle…

Poodle: I’ll just blow in the Border Collie’s ear and he’ll do it.

Rottweiler: Make me!

There’s more, but I think that’s enough for today. Carry on!

Beauty on the Beach

I should be finishing my French homework right now, but I’m taking a break. This week, we are assigned a movie to watch…Les Mis. And get this…it’s in French! I’m catching about one word per sentence at this point. I keep yelling at my iPad, “Slow down, you’re talking in a foreign language!” I am thinking if I have enough time, I should watch it in English too, so I sort of know what’s going on. But I’ll have to answer questions about it in French tomorrow night. It’s all good, though. It’s not like I have to pass the class to pass high school. I’m just working on a bucket list item. I enjoy it and I love the instructor and fellow students. (And I’m having a good year for bucket list items.)

It has been a month of highs and lows. I was called to Salinas, as I got word my dad was not doing well. We were headed to the area for Tristan’s graduation from CSU Monterey Bay on Saturday the 16th anyway, but I got there Friday night. Surrounded by 5 of his 6 children, he passed away on Saturday morning just before I needed to get Tristan out to the campus. It was an emotional day. Being there for my son, being so proud, and mourning my dad. I take comfort in the fact that I think he was ready to go to be with my mom. But it is never easy to say goodbye. They are together now. The two partners in the greatest love story ever. That was my mom and dad.

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A bittersweet moment

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How I want to remember them

His funeral was on the following Friday and  we gave him a good send off. The night before we shared many stories and I learned some new things about my dad that I hadn’t previously known.

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All of his grandsons

Once again, I had to shift gears. (I guess I love that term, since I drive a stick shift)  I said goodbye to my siblings and steered my little Fit to 101 south. I had to put my game face on. I had a marathon in two days. Friends Pete and Erin were already there in Ventura, and had a space for me in their motor home, affectionately named the ‘Ritz’. It worked out well that I drove down on Friday, because I could just relax on Saturday. We picked up my number at the Expo, played some miniature golf, ate an early dinner and then had plenty of time for me to suffer some heavy duty pre-race anxiety. I know now that that is normal for me. But it’s not getting any funner, if you know what I mean.

On Sunday we had an early morning wake up call at 2:45. I had a 4 AM shuttle to the start in Ojai. The course runs from there to Ventura and finishes on the beach.  I brought my oatmeal with me on the bus, because I can only eat so early. This time, I remembered a spoon! I didn’t have to eat it with my fingers like I did on the bus at SLO in April. Yay Kim! Erin was on the 5 AM bus but I found her right away at the start. Pete was running the half, so he was bused to another spot. While keeping warm in the Ojai post office, I wrote on my hand. This one was for my inspiration. The guy who started it all.

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And all of a sudden, it was 6 AM. Time to execute the game plan that Andy had laid out for me. In spite of feeling really nervous Saturday evening, I once again was able to focus and feel positive. Today was going to be the day. Goal = 4:10 or less. I figured I would probably need a 4:08 to actually get into Boston.

So, I ran. It felt good. I started out aiming for around a nine minute per mile pace. At mile 4, someone held a sign that said “San Diego 222 miles, Boston 22” I liked that. I thought, “yeh, that’s not that far!”  After the first 9 miles, the slight downhill on the course made an 8:45 pace feel easy, so I was able to maintain that for quite some time. Downhill in a good way, but not so much that my quads were on fire. I just kept going. I knew my goal was there, on the beach. But like Andy said, I would have to chase it, it wasn’t going to lay down for me. I felt like I was being pulled into it. I would glance at my left hand every so often, and think of my dad. And then I would hear Andy in my right ear, telling me emphatically that “I WAS GOING TO DO THIS!”

When I hit 20 miles in about 2 hours and 57 minutes, I knew that was two minutes faster than when I hit 20 miles in Boston 2009, my one and only sub 4 hour marathon. I wasn’t thinking PR. I was thinking how much cushion I had to meet my goal. This course evens out at about mile 22. There is no more downhill and I’ve been told it would feel like uphill. And I’m a “fader”. I’ve yet to meet the last 6 miles in a marathon, saying “My name is Kim and I really want to run 6.2 more miles!” As expected, I did slow down, but not as much as I had thought I would. I saw Pete at mile 23 and I know he was not expecting me at 3 hours and 25 minutes. It gave me a rush to know someone knew I was doing OK, as the last timing mat was way way back at the 10K point. At that point, it was about maintaining and not cramping up or tripping. I did slow down to 10 minute plus miles the last couple. But I have never had a race where I knew I could walk the last mile and still meet my goal. I saw the 25 mile marker at 3:45. I was tiring. But I KNEW I had it. That beach was BEAUTIFUL!

I crossed the finish line at 3:58:32. I missed a PR by only 57 seconds, and I got my BQ! It was 11 and half minutes faster than needed and my second sub 4 in 10 marathons! Check off another bucket list item. Elation doesn’t even begin to describe it…

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To add to the awesomeness,  Erin totally killed it with a 3:49 and change, and Pete posted a big PR in the half marathon with a 1:52!

Immediately after I stopped running, I collapsed into a cramping blob of painful muscles and so did Erin. But it was the most ecstatic agony I’ve ever experienced. We were trying to save ourselves by taking in electrolytes and massaging our muscles but the giggles were overriding the moaning and groaning.

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Eventually, we were able to walk. So, we did what we needed to do. At this marathon, you get to bang a gong if you qualify for Boston. Like a lot of things we do, we did it together.

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Getting another BQ is something I have thought about every day for the last three years. I came to Andy with this one goal in 2012, not knowing the bumps that were coming my way. I sometimes think that the road to this race has been paved with shards of glass.  As the medical adventure took on a life of its own, I googled all kinds of things about life after transplant, running and qualifying. I couldn’t find anything to support it being possible. But I didn’t find anything about it being impossible, either. So, I forged ahead, hoping for the best. I figured I would just have to write my own story. And this chapter has a very happy ending. Because, you know, those shards of glass sparkled in the sun. 🙂

Beauty and the Beast

It’s getting closer now. The transplant.  I can feel it. It had seemed so far away. Now things will start happening late next week.

I am very well informed. I have known this transplant was a possibility for almost a year. Since the decision was made in May, I have done my homework. I know this procedure can be tough to get through. While I don’t know exactly how I will do and if there will be complications, I do know exactly what the plan is. I am ready. I have never been scared about this and I am not scared now. However, the mind is a mysterious thing. Since Friday I have had a vague sense of fear. It’s more of a physical sense than a mental one…I can feel it. I know I have felt this way at least one other time. In 2010, I almost had surgery on my broken finger and the 24 hours before, I seemed to go inside myself, seeking a quiet place to take it all in. I was nervous about it. It was ultimately cancelled as the surgeon decided it would heal on its own. But it was a close call, and I remember that strange way I felt. The first step in this next adventure is over a week away and I guess I have that feeling now because this is a much bigger deal.

On July 24th, I will have my central line put in. It’s a catheter that will go into one of the large veins near my heart. It will be used for blood draws, transfusions, and the actual transplant. This way, I will not have to have an IV in my arm the whole time. I could have the central line for as long as 6 weeks. After mobilization and apheresis (the collection of the cells), I get a short break before being admitted on August 8th. Chemo is scheduled for the 8th and 9th and the transplant will take place on the 11th. Oops, I have forgotten to explain how this works. I’ll back up a bit. This is an Autologous Stem Cell Transplant. My own cells are harvested and used. In theory, these cells are healthy. After my immune system is wiped out by chemo, and the bad cells are gone, it is hoped that after these cells are put back in, they will begin to rebuild a new healthier system. It is kind of a “reboot”. The goal is long term remission. I will be in the hospital 2 or 3 weeks and then I need to stay near by until at least Day 30. (Transplant day is referred to as Day 0) When I come home, I will go about the business of recovering. I will not be able to do a lot of things for a long time. One is to care for animals. Last I checked, that is how I make my living. So there you have it. This is life changing for me…at least in the short term. That’s why I am trying to cram all of 2014 into 7 months!

I need to do the things I want to do very soon. I’m running out of time. I’ve been eating desserts. I’ve said yes to every dinner and coffee invitation that I can. I’ve been to the movies twice now since May…incredible as I go whole years without doing that! I’m going to go out and run and bike and swim at least one more time…I have to, whether I am supposed to or not. And through it all, I am trying to take in any joy and beauty that I can.

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I planted flowers this weekend. I haven’t done that in ages. I am not sure if it is the need for beautiful things around me, or the need for dirt. The more I think about it, the more I realize it must be the dirt.  I will not be allowed to garden for 6 months. I must garden now!

I have told my son Trevor, and his girlfriend Brooke, that I would appreciate it if they would hold off on collecting the eggs from the chicken coop. That needs to be my job for now. It is a ritual that I really enjoy. Even when someone has already gotten the eggs, I take special care with my “girls” each day to clean the chicken poop out of the nesting boxes. I won’t be able to do that for 6 months either. I won’t be able to collect the eggs. Livestock care is completely off limits.

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I’m feeling all this sense of urgency and yet I feel like I’m moving in slow motion. My regular life goes on. I have to work. I have to get the business ready for my absence. I have doctor appointments.  I have to occasionally clean the house. (Although I do not feel the need to dust and vacuum, more activities I will not be able to do…not sure why that is…)

Still, I will continue to search for the beauty in my life while I can. I want to breathe in all the fresh air I can and feel the sun on my shoulders. This “Beast” of a hospital stay is a comin’ like a freight train. I can hear the first few lines of “Band on the Run” playing in my head. “Stuck inside these four walls…”. Although I won’t be “sent inside forever” and I’m quite sure that I will see someone nice again, I know I am facing a challenge.