One Patient's Positive Perspectives

valet parking sign

stopped at the valet

Today was my last Benlysta infusion of the year, and I was the last infusion of the day at the hospital’s cancer infusion center.  As I arrived, I stopped at the valet parking station and headed right in.  In the waiting room the discovery of my Nook tablet battery on empty made me wonder what I would do for the next couple of hours.  Soon, I was distracted into a Christmas mood by noticing wreaths, a Christmas tree and other colorful holiday decorations bringing cheer to the infusion center suite.  The nurses welcomed me with offers of goodies and an invitation to sample the contents of a generous spread of treats.  The nursing staff and a couple of patients had all contributed to a bevy of sweets.

brownie with walnuts

sampled a brownie

As I sampled a soft, gooey brownie filled with walnuts and chocolate chunks, I started craving some coffee, and made a note to myself for next year to bring something to share at my December infusion.  While the staff prepared my IV infusion set up, I dropped my purse and jacket at the infusion chair closest to the coffee station and brewed a single serving of some surprising great coffee, complete with my favorite hazelnut creamer.

hand veins

vein on top of my hand

Although I have easy to find veins, the nurse had trouble run getting past a valve in the vein on the top of my hand, just as we both remembered she had the same problem in the same spot once before.  She explained that some patients are what she called “valvy” explaining some people have more valves than normal.  The unusually uncomfortable feeling of pressure in the vein had me communicating my discomfort with conviction, as the nurse commented the IV had just blown out.  Pulling the it out, she and I both agreed she would have to toss it and try another IV in a new vein.

infusion glucose bag

got the infusion going

Soon, she got the IV successfully in place and started the Benlysta flowing.  I settled in to read a novel I had borrowed from the book cart on the way in, not sure it was going to be one I would want to read through to its end, but its early pages sufficed to keep me amused, sans my uncharged techie toys. The short one-hour infusion time passed quickly.  Most infusion days, I arrive at around 3:00 p.m. and am usually walking out by 5:30 p.m. or so. Today was no different, except for stopping briefly to exchange Christmas wishes with the nurses and saying goodbye until “next year.”

five dollar tip

cash for a tip

The infusion center validates valet parking for patients at the hospital, but I realized as I left the building that I did not have any cash for a tip.  I left my keys with the valet, and let him know I would be right back.  I headed for the main hospital building to find a teller machine.  Just inside, I found one, pulled out some cash and went to break a twenty at the gift shop.  I found a cute battery-powered necklace made of miniature Christmas lights, thinking it would be fun to wear to work next week, and calculated the cost just was enough to break a twenty with plenty of change left for the tip.

Once back in my car, I headed out toward the street, suddenly realizing I had forgotten the file folder I brought with me, expecting a call from my financial adviser.  I remembered I had left it on top of the teller machine!  In a panic, turned my car around at the light and rushed back to the valet station.  Handing my keys back to the valet, I hurriedly explained I had left some very important papers and had to go get them.  I literally ran back through the hospital entrance, glad I was wearing sneakers, and uttered an audible thank you prayer as I spotted my pink file folder atop the teller machine.

Power of Attorney

Catastrophic in the wrong hands

Inside the file was a receipt, super bill and lab orders from my rheumatologist and my medication list, but more importantly, it also contained my father’s bank statements and the durable power of attorney for handling his business affairs.  This week, I have worked with the bank to restructure some of his maturing investments.  The file contained all dad’s bank account numbers, statements, account balances, addresses, etc.  This information, together with the details in the power of attorney documents, could be catastrophic in the wrong hands, potentially providing everything someone would need to commit bank account takeover fraud.

Slowing down abruptly to stop the pace of my pounding heart, I retrieved the file with a deep sigh, took a couple more intentionally deep breaths, and whispered another short  prayer of thanks.  Instinctively, I clutched the file tightly to my chest as I slowly walked back outside.  Thanking the valet once again, I was back in the driver’s seat and finally truly headed home.


lupus and short-term memory deficit

As I pulled away, I noticed my heart was still pounding and grumbled to myself.  I was extremely frustrated that lupus and my short-term memory problems from CNS lupus caused me to forget something so important!  I was also angry at myself for being careless with the file.  At the same time, I was extremely thankful I remembered it in time to prevent financial disaster.

My favorite expression from the famous Charles Schultz cartoon character, Snoopy the dog, was on my lips as I drove toward the freeway, voicing a deep guttural “aarrgh!”



Comments on: "Benlysta infusion and forgetting something" (11)

  1. the Wicked ##### said:

    I took methotrexate til my liver quits… Prednisone to me is like taking a flintstone vitamin for a broken leg. Benlysta seems to have helped my appetite.. My digestive system is in ruins… it seems that the good days are better and the bad days are worse than that all the time yellowish sick feeling you get from methotrexate… They give me 800 cc of prednisone, Tylenol, and benadryl before my benlysta because it puts such a strain on my system… For some reason my ol ticker and lungs are holding strong, but the combination of all that medicine at infusion time packs a punch, my chest hurts something awful… The infusion makes me knocked out for a little while, then the prednisone makes me wide awake, mind racing all night but I am too weak to move so I just sit here and think. I joke about it turns me into a dragon because you can imagine how mean you CAN be with that much steroids.. It’s best to let me just sit in a corner and don’t poke the bear for a day or two. Headaches, muscle cramps and a constant cheat pain are the only lingering side effects I notice.

    • You might try asking your doctor about trying an infusion without the steroids and benadryl. I can’t imagine it being the cause of feeling bad. When I took Rituxan infusions, they felt like water going in, and didn’t make me feel bad, either. The biologics are vastly different than the methotrexate and imuran that I took for ten years. Those drugs make you nauseated, and kill every cell that gets in their way. The new biologic drugs like Benlysta and Rituxan only target select cells and leave the rest of your body alone. I hardly can feel that they have given me anything.

  2. the Wicked ##### said:

    Pardon my typing… It’s one of those foggy days and I don’t WordPress on my phone often, I don’t know how I edit. I’m actually an author… Sorry for all the typos!!!

  3. the Wicked ##### said:

    Oh, honey we all do those things! This month marks a year of my infusions as well.. The 27th… It actually fell on Christmas but of course they had to move that. You should be proud of yourself not beating yourself up! I am amazed that you can DRIVE after benlysta! I completely messes me up.. I mean i am a zombie for the rest of the day! This fascinates me… Do you have to take the Benadryl-prednisone cocktail first? I think that’s what messes me up.

    • Thank you so much for your comment, and congrats on the “Benlystaversary.” Actually, I have ABSOLUTELY no adverse affects on the day of the infusion. I do NOT take any pre-infusion cocktails. The only time I had prednisone and benadryl was before my two Rituxan infusions years ago. My doctor said that the risk of allergic reaction was vastly reduced, because Benlysta is a human monoclonal antibody, not a murine (mouse) monoclonal antibody like Rituxan was. Therefore, I have never had the benadryl or prednisone with my Benlysta, and have never had a problem. The only mildly adverse reaction I do have is that I am very sleepy for two to three days after the infusion day. Other than that, I am clear headed and feeling physically fine.

      • the Wicked ##### said:

        The effect I has very well could be the level of disease we have, as well… I’m real messed up. They wouldn’t even let me have benlysta when it first came out because I was a ‘likely mortality.’ I have 9 autoimmune disorders.. The ANA level tha is supposed to be below 600? Mine runs 3200-4000… It’s never tested below 2000. I am nine years in for sure this February.. I have SLE, discoid, MS, scleroderma, RA, reynauds, autoimmune liver disease, autoimmune pancreatis, and anorexia.

  4. I know this sounds terrible but, somehow, I find comfort when I hear of other Lupus sufferers running into the same situation of being ‘absent-minded’. I always feel so bad/worried each time I do something that causes me to also reflect on this aspect of the disease. I’m glad you shared your experience. 🙂 Merry Christmas and many blessings for a blessed New Year!

  5. Oh thank God the file was there! Don’t beat yourself up for this, although I know that’s easier said than done because I get so frustrated at the forgetfulness, then mad, tears of frustration at times! But God saw the beauty of your heart, making the effort to give the tip & helped you remember it’s location as well as protecting the file!! You help so many as you live with Lupus so gracefully, thank you!

    • JM: Thanks for your kind words, and for praising the Lord with me for his goodness. LA

      • the Wicked ##### said:

        She knows.. I have great rheumatologist… The way I understand it, it’s similar to what you said about the preventing a reaction because my ANA stays so high.. It affects a lot of my system when they do it? It’s nothing I can’t take… When you have what we have, a day or two of side effects once a month is a walk in the park. Yea, it’s a way better set up than the methotrexate all the way around… Man, do I hate that stuff!! Its glorified rat poison in small doses. I have judy garland dreams for benlysta, I know.. But so far it seems to be hanging in there, and my liver seems to be handling it well too. And after a year we haven’t grown horns or anything, so…

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