Rare Disease

Of Pokes and Ports and Pools

/ Kim Ottone Tank / 2 Comments

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!

Here We Go Again…

/ Kim Ottone Tank / 1 Comment

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

/ Kim Ottone Tank / Leave a comment

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!