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