When Nurse Christi came in to the begin the first chemo treatment, she put on full protective gear, and placed a bio-hazard marked syringe filled with bright red liquid on the table. Measured poison to go into my husband's body. Very surreal to think about.
He is a champ, he does whatever they ask of him, answers every question no matter how often it's repeated, and never complains. He is in terrible pain due to his weight loss. The combination of these cancers have cost him all his muscle mass, but we know once he is past this he can put it back on again.
He says he is "fat" but the shape of his stomach is enlargement of the spleen caused by Myelo Fibrosis. As the blood-making factories in his bone marrow burn out, they replace themselves with small scars of collagen. The spleen reacts by taking up the job of making healthy blood, and when it becomes overworked, enlarges. The JAK inhibitor's job is to decrease inflammation and shrink the spleen. Then, it's the stem cell transplant that will fix the bone marrow scarring.
The doctors decided initially to go after the Myelo Fibrosis first using a JAK inhibitor pill called Pacritnib (or Vonjo). The cost of one month of Vonjo is $26,000. Without our insurance coverage, we'd never be able to afford it.
They believed this was the smartest plan and that they had time to deal with the Indolent Lymphoma second. However, they realized with further testing this was not the case, and that the lymphoma was aggressive, and the ALCL needed to be dealt with immediately. The ultimate goal for both of these cancers is to get a stem cell transplant, and knock them both out.
Andy, who was an excellent boxer in his hey-day, tries visualizing knockouts, and I think it really helps him.
It turns out that a childhood friend of mine, Stephanie, also had ALCL and received the same chemo cocktail Andy was getting. It's something called CHOP:
CHOEP is an intensive chemotherapy combination that adds the plant-derived topoisomerase inhibitor etoposide to the standard CHOP framework (Cyclophosphamide, Hydroxydaunorubicin/doxorubicin, Oncovin/vincristine, Etoposide, and Prednisone/prednisolone). It is primarily used to treat aggressive types of non-Hodgkin lymphoma and specific T-cell lymphomas.
When she had her treatments, she ultimately left UMass to go to Dana Farber, since they had the Etoposide in clinical trials. Since UMass has a close relationship with Dana Farber, Etoposide has now been approved and is now part of the ALCL mixture.
The doctors decided to hold off on administering this last part, E, until we know more about how he is responding.
. . . . . . . . . . . . . . . . . .
I hated to leave him, and have been spending many nights at the hospital, but I worry about burning out and getting sick myself. If I get sick, I won't be able to see him at all, and that would be worse. So I came home to do laundry and try to relax.
It's very difficult for me to be in the house alone when he is in the hospital. I am prone to panic attacks, long bouts of crying, pacing and insomnia.
I know he is suffering, too, and there isn't much I can do about it.
The kids have taken our dog, which helps because sometimes she barks at 5am, but the quiet makes me very depressed. I hope she remembers us when we get back.
. . . . . . . . . . . . . . . . . . .
I love these pictures of Joe and Andy's mom, who came by with fresh coffee and a nice chat. We were happy Matt and Krystine also came by with fun gifts and moral support when Andy had just finished the infusion.
Joe and Nana should have their own grandma-grandson buddy comedy series
I was so happy at lunch time today to hear a cheerful "Hey!" and see it was Jessica, who is one of my oldest and dearest childhood friends. She was working at the hospital that day (in the ER) and gave me a big hug (perfect timing) and gave me a boost on her lunch break. She drove me home after her shift and even checked in before bed. Turns out our other friend, Paula, (same group from 35 years ago) was also working at the hospital, on the night shift.
It amazes me that while we had lost touch for many years, now, at the darkest point of my life, my oldest friends reappear like magic. We reconnected a couple years ago after a long stretch away, and now they are here for me like nothing changed at all.
Nurse Natalie, Nurse Michele, Night Nurse Ryley, Nurse Christi
No comments:
Post a Comment