9: Rough ride

“Sometimes it’s just going to be fucking hard.” (Loni G)

I was going to post an update last weekend but just found things a bit overwhelming. So, I’m going to be brutally honest here – this past week or so has been rough, and finding the bright spot I usually like to end the update with has been difficult.

On Wednesday, I was prescribed a third daily prophylactic (an anti-fungal) because my WBCs and neutrophils are still in the toilet. I picked up the RX, but when the pharmacist warned of serious complications (irregular heartbeat in particular) because of all the other meds I’m taking, I chose not to start taking it on a Friday because I didn’t want to deal with complications on a weekend. Silly me – there were other things to worry about!

The day before my legs had started swelling, so I was told to keep my feet elevated as much as possible and to start wearing compression socks. (I actually don’t mind wearing compression socks, so went ahead and ordered some fun ones from Amazon. Plus, they keep me warm.) Then on Friday I got home from the blood draw and running errands, went to the bathroom to wash my hands and saw that the right side of my face was swollen. (That “fat face” I’d worried about when taking the steroids early in the game never came about, but now – here it was.) I left my oncologist a voicemail, then sent them a picture. At 2:30 I get a call from someone in the office wanting to know how quickly I could get to a hospital to have an ultrasound, and how far I was willing to travel. At 2:50 I got a call that they could get me in at 4:00 into the UC Health hospital in Greeley – could we make it in time? Minutes later we’re in the car headed east. Even though an accident and attendant looky-loos delayed us, we made it, arriving at the front entrance at 3:50. Seems they were seriously concerned about a blood clot from my newly - installed port. Good news/bad news - no clot was found.

The next morning (Saturday) both sides of my face are now swollen. Of course, it’s a weekend. I called the on-call oncologist because my med paperwork warned that swelling of the face can lead to blocked airways. She advised I go to the ER for more tests, including a CAT scan. So, off we go to the PVH ER - again. Four hours and many tests later, results are all negative so we go home. But at least I’m not worried about my airways closing up. (Small wins – we take them wherever we can find them.)

On Monday I get a message from the doctor’s office checking on the swelling, and I end up telling them about some other side effects I’m starting to experience (I’m really starting to feel like shit at this point.) I tell them I haven’t wanted to start the anti-fungal, and get a stern response that if I don’t take it and do get an infection, it would be very difficult to treat and could be very serious overall. In fact, infection is the leading cause of death for people with AA. So, now I’m on yet another med. Total: 8 medications, 6 daily intervals, 16 pills/day. And I was the person who barely remembered to take my daily vitamins!

The Phoenix

Here is the bright spot. I have an artist friend, Vickie Krudwig, (https://www.harmonyhousestudio.com) from whom we’ve bought quite a few paintings. This is how she describes her art: “Harmony, Peace, Love, and prayerful meditation are what I hope art lovers will feel when looking at my art. Whether my art is impressionistic or abstract, it’s purpose is to heal hearts and transform the spirit.” So when she sent a note out to a few of us that she was cleaning out her studio and was looking for new homes for a few of her unsold pieces, I gasped when I saw this one…

She calls it, “Morning Gathering” and is about how all of us are connected to the earth, but I saw it as my phoenix – my talisman for this journey. To me, it signifies rising from the fire, a rebirth, and all the small figures in the piece are all of you who are supporting us as we make our way to recovery. (Thank you, Lauren, for that incredible insight.) Vickie says that her paintings are “… meant for certain individuals, who connect intimately with the paintings. I like to think my paintings find their owners!” And the moment I saw this piece, I knew immediately that it would be an important part of our lives.