I returned to the United States two days before my visa expired. I had my last two chemos in San Francisco. I do remember it being very different (and chaotic) in my eyes, but since my last infusion was August 2, 2012, I kind of put it out of my mind.
I was officially diagnosed with metastatic breast cancer on January 2, 2013, a mere four weeks after my last radiation treatment. Due to the extent of disease found (in 23 vertebrae and a rib), my original diagnosis was revised to metastatic de novo (from the beginning).
I have gone to this infusion center almost monthly since January 2013 to receive my Xgeva shot. It's a quick in/out procedure that happens in a corner room for people just like me ... no time and/or attention needed. Just a shot, nothing but a shot, and slam, bam, thank you ma'am!
Last week I had to receive my very first blood transfusion. This, unlike my shot, is an all-day affair. It put me on edge to think of this and I was less than thrilled at the prospect. I hung on to the encouragement I received from others ... that the transfusion would help me feel so much better.
Off I went. I arrived at 7:30 a.m. and was eventually brought in for the cross, type and match portion of the day. While sitting in the chair, another woman was brought in and was being set up for her chemo. This was not her first chemo, but for some reason, she seemed completely unaware of how much time it would take for her to go through this process.
"I have to catch a plane out of Oakland at 1:00! You can't keep me here until 12:30! This is so wrong! My doctor said only two hours! Why are you doing this to me?"
Yes, she was very demanding and yes, she was yelling. Didn't help my stress level very much.
Her infusion was supposed to take three hours, followed by an hour of observation. The nurses asked if she could book a different flight. Her husband replied, "No, we can't. They're all sold out. There are no other flights and we have no place to stay tonight."
The woman continued to yell about how the nurses didn't know as much as the doctor and they had to do her infusion in a much shorter time period.
The husband got on the phone.
They were booked on a private plane that was not definitively tied to a schedule. My nurse and I looked at each other rather askance. Really? A private plane? But she claimed to be tied to a schedule?
By this time, my veins had been found, blood had been drawn, and I was sent off to eat some breakfast. When I returned, the woman was not there, so I don't know what happened with her story.
As I got settled into the room, a man from southern China was told his kidney functions were compromised and it was possible he wouldn't receive chemotherapy today. His son was translating for him. While they were speaking in Cantonese, I talked a bit with them in Mandarin and the man in the chair lit up. "It's not often I hear a white woman speaking one of my languages." They ended up filling him up with IV fluids and proceeding with his treatment.
Another woman was receiving herceptin for HER2+ breast cancer. They used a vein for her infusion so I asked her why she didn't have a port since Herceptin is usually given for a year. She told me she was diagnosed metastatic de novo TWELVE YEARS AGO! and has been receiving herceptin only as maintenance all that time (following her primary treatments). Wow. I asked about where her mets were and she said that it was a single superclavicle lymph node and that she has been no evidence of disease (NED) this entire time. Her doctors here in San Francisco (she was diagnosed elsewhere and lives elsewhere) say that she was likely to be Stage IIIC at diagnosis rather than Stage IV and have told her that she can stop receiving herceptin, but she told me it was her security blanket and that she wasn't giving it up. She's planning a move to Italy as she finally arranged to have her care transferred to a clinic there.
An elderly woman filled the herceptin woman's chair. While she had vibrant speech, she moved slowly. She was well known in the infusion center and a lot of nurses stopped by to say hello to her. She had Christmas gifts for them all. She talked of her husband being in a care home and she talked of this maintenance chemo being her last treatment option and that when that treatment failed, she was prepared to enter hospice. She was concerned about her husband, though, and didn't know what would become of him if she died first. A social worker came in to talk further with her.
I had brought along a lot of desk work to do while in my chair and had been writing during most of these interchanges. I can multi-task, though, and listen, watch and write at the same time.
My phone rang. A casual friend who has had Stage 1 breast cancer was on the line. She's a chirpy kind of gal who believes that healthy eating and healthy living is all that's needed to stave off metastatic disease. She doesn't follow my story, but heard about my transfusion from a mutual friend and decided to call. Because she doesn't really know me or keep up with me, she was out of the loop that I have had disease progression over the past few months and am dealing with new treatments and side effects.
"But you're okay, right? This transfusion is all you need, right?"
"Well, no. I have disease progression and I'm on my eighth treatment protocol. The seventh one failed after only four months and we don't know what this eighth one is doing. It landed me in this chair."
I was still too tired to manage others' emotions and reactions to what's happening in my body. To be honest, I end up doing a lot of that, but I was just in no way, shape or form to do so while sitting in that chair.
The woman next to me (who hadn't said a word up to that point), talked to me after I finished that call.
"Please don't take this wrongly. I can't hear your story. I just can't. I don't want to know anything else about you so I'm going to draw this curtain between us closed. You are not doing anything wrong and you are not talking too loudly (in fact, that phone call was the first time I had spoken to anyone in over an hour), but I just can't handle your experience."
She was an early stage breast cancer who was aware of the chance of recurrence.
"I understand. Please, get some rest."
I didn't answer any more phone calls while she was in the room.
I was let go at 3:45 p.m. I was the only person in the room at that time and my head was spinning a bit. What a cross-section of society!
Everyone has emotions and everyone has a story. Each story is an important one and each voice needs to be heard. In spite of the entire range of needs expressed in that room ... from anger to desperation to fear to acceptance ... the nursing staff was nothing but kind, loving and caring.
I can't imagine doing their job.
I started the day with pale cheeks and left with some color in my face. I'm waiting for the results of today's blood work to confirm that the jumper cables (transfusion) did its work and that I'll be able to start treatment again. But then again, I don't want to be back in that chair any time soon.
I am feeling much better. Life goes on. I'm grateful for today, so I'll simply be glad in it.