Mazel Tov

Writing to you while I admire the view of lovely Woodland Avenue outside the cancer center. I returned home Thursday after a stellar birthday trip, and did a quick turn around up to Maine to celebrate Sharyn Rothstein and Jeff Lesh joining in wedded bliss. Although Mom was unable to attend, Gwennie and I returned home with our hearts full of well-wishes and prayers, and one stunning center piece from the head table, where Mom would have been sitting if she'd been well enough to attend. The center table's name was "carpe diem," and if anyone seizes the day, it's my mother.

We're one week out of systemic chemo round 3 (I believe Gwennie may have said round 2 in her post), and the side effects are taking their toll. Because the systemic chemo is a combination of 4 drugs over two days, Mom's immune system takes an extraordinary hit. Sores run from her lips through her mouth right down to her stomach, making it impossible to swallow. If anything is lucky enough to get to her belly, the reflux causes her to regurgitate and spit constantly. She also experiences generalized mucositis, meaning all of her mucus membranes from head to toe can be swollen and tender.

Mobility is our greatest challenge. Thanks to research and hard work, her friends hooked us up with a lift chair, which is a nifty gadget that lifts her almost to standing, making the transition both getting up and sitting down much softer (on her and the person helping). Even so, just rolling over in bed requires complete assistance, which presents many challenges. First being Mom's safety, because there are safe ways and unsafe ways to move her. If she's not moved correctly, the pain is excruciating. And if not done properly by whomever is helping her, the caregiver can cause themselves serious harm as well. With her immobility comes less circulation, risk for bed sores/pressure ulcers, muscle deconditioning, increased risk for aspiration and pneumonia, the list goes on and on.

What may be second nature to me as a nurse, certainly is not to others. It is hard for me to not be with my mother at all times: nurse, oldest daughter, type A, control freak, obsessively tidy, etc. You get the picture. But it has been incredibly therapeutic to have such willing friends and family to take over and give Gwennie and I breaks. For example, Paul has taken over most nights so Gwennie and I can have breaks in the evenings. And Lissa spent most of the weekend at our house learning the ropes allowing Gwennie and I to go to the wedding. It is beneficial for Gwennie and I to be able to step away and find some solace, as well as for others to have a place in caring for Mom. Everyone is doing an exceptional job. I still bark orders (I like to think of it as "advocating") because as the obsessive/anal/daughter/nurse, there IS a right way and a wrong way, but people humor me and pick right on up.

Her counts will likely be too low today to receive intrathecal chemotherapy, but we're no strangers to this situation. We'll be on extra high alert for infection control, and keep her well hydrated at home while her immune system recovers from this chemotherapy. As she doses, she's got Mrs. Ogelby's shawl on her lap, a shawl from Amy and Allen around her shoulders, some horribly ugly Halloween socks on her feet (who's taking credit for these, by the way???), and a smile on her swollen mouth.

Hold the phone...

We just got her counts back: her platelets (for clotting) and white blood cells (for infection fighting) are virtually non-existent. Her red blood cells (for carrying oxygen, nutrients, and a million other treats) are also on the verge of too low. We've scored ourselves a platelet infusion, and two to three nights in Hotel St. Frannie. The risk of bleeding is very high, not to mention her risk for infection. God forbid she spike a fever in the middle of the night and we end up in the ER. This way, they can monitor her blood levels regularly, and treat her symptoms aggressively.

Although she's not thrilled, she knows this is for her own safety. We've gotten admitted on week two after every other cycle, why would this time be any different? We're all about consistency around here.