Infusion #9 – A very long day

8:30 am – My earliest appointment at SCCA yet, which means no time for a morning run and we couldn’t take the HOV lane today.  As typical, I had my blood drawn first and 30 minutes later was brought back to see the doctor.  Unfortunately, I’ve been experiencing right hand swelling (see picture below) and arm pain for nearly 2 weeks (the swelling started the day before my last infusion, but the pain started 3 days later).  With that and my delayed hypersensitivity reaction to Bleomycin, causing abdominal pain and fever/chills, we had a lot to talk about and changes to make to the game plan.  Additionally, my ANC (absolute neutrophil count) was only 200 (the lowest Ievel I’ve experienced; normal level is 2,100-7,000).  Despite our original conversations (back in January) of not proceeding with chemo when my ANC dove below 250, my Monocytes were very active which shows that the marrow is working well, so we elected to proceed with today’s infusion, acknowledging that I would need to be extra diligent with monitoring temperatures and avoiding illness.  Many people have asked about using GCSF (a bone marrow stimulant) to help promote the return of my white cell count, but the reason we don’t utilize it, is because it vastly increases the risk of lung toxicity when administered with Bleomycin, something I can’t risk as it is often permanent. 

Given my Bleomycin reaction was not pulmonary related and the sensitivity reactions can usually be managed with Benadryl (diphenhydramine), Tylenol (acetaminophen) and Zantac (ranitidine), we added these 3 meds to my premedication routine.  This, of course, extended my time with the doctor and prolonged my infusion (since it’s up to 9 intravenous medications now and the pharmacist needed to prepare the new ones).   We started infusion around 10:30 and ended at 1:30.  But, wait, there’s more.  My arm swelling and pain still required addressing.  The differential diagnoses most likely for this problem is either a blood clot (DVT) or a port issue, since it’s only in the arm/hand on the side of my port.  An appointment was made for an ultrasound at 2, with check-in at 1:45, which meant we had 10 minutes to grab some lunch at the cafeteria.  Fortunately, because of the late hour, lines were fairly nonexistent and I obtained my Thai Mango salad and Chris a pepper steak stir fry with 5 minutes to spare.  We took our lunch up to the Diagnostic Image waiting room and ate while waiting. 

The good news:  I didn’t have a DVT and thus would not have to worry about being on anticoagulation for the remainder of my treatment and beyond.  Unfortunately, the alternative is a problem with my port, requiring removal of it.  Going under the knife and having a PICC (peripherally inserted central catheter) line introduced into my other arm somewhat disheartens me, as I fear that it may cause swelling in my other arm too.  On the flipside, the port is a constant irritant and still quite tender, making sleep difficult at times.  Yet, the PICC line will be along my inner arm and dangling into my elbow region which may be irritating with running and sleep as well.  But, I can do anything for a couple of months.  Yet, I elected to give it another week to see if it resolves or may be related to my fall on the treadmill or lifting bags out of the car.

After the ultrasound, it was back to the doctor to discuss the plan and we finally returned home a little after 4 pm.  With Benadryl on board, my eyes were heavy and I craved sleep.  Coming home to packages on the doorstep, kept me from falling asleep.  One package was a photobook that took me the last 3 months to complete (from our summer 2015 travels).   The other one was from a neighbor and friend and consisted of a cooler filled with ice packs, whipped cream and berries (blackberries and raspberries) along with an angel food cake and some yellow tulips.  That simple, loving gesture not only removed any worries and distress from the day, it lifted my spirits and I tossed out the idea of a nap and watered my plants and grass outside to experience a little sunshine and fresh air.

Although it was a long day, Chris and I always make the most of our visits.  Yes, he may sleep during some of the time (he says it was the Benadryl that put him to sleep today…see below).  It gives us time to talk, plan, play games or even just catch up on our email or his phone games.  Emailing will be limited now that Benadryl is added to my regimen.  With eyes half open and the brain at 50% power, I can’t promise my email responses will be intelligible.  So, if you don’t receive a response for some time, you’ll understand why.   That being said, I hope that the Benadryl is worn off enough to make this blog post coherent.  It certainly hasn’t lessened the steroid-induced insomnia.  That being said, I need to replenish my sleep to survive this busy weekend filled with a funeral and of course, Mother’s Day.  Happy Mother’s Day to all my beautiful, motherly friends! 

If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do, you have to keep moving forward.  ~ Martin Luther King, Jr. 

Difficult to see, but my right hand is so puffy that I can't completely make a grip. 

 

A long day for Chris...the Benadryl made him very sleepy.  The mutterings he made were very entertaining to my infusion nurse, Kim.