March 4, 2019. Monday already. Having a week off was heaven. Seven chemo treatments in, and I still have a hard time believing I have cancer. But it must be true. All the tests say it’s true. Why else would I have a bulging port under my skin? There is no sane reason to have chemo therapy if you don’t have cancer. Who would ever willingly choose to be poisoned on a weekly basis knowing that it leaves you (especially after 7 treatments) with a dripping and bloody nose, no energy, balding, nauseous, numbing fingers, aching joints, and a compromised immune system. Shit. Intellectually I know I must really have cancer. And yet, I still don’t fully believe it.
Tuesday, February 26. I had an MRI. The last time was on November 30 before I’d had any type of therapy. I wish I could tell you that this MRI went as smoothly as the first, but no such luck. My MRI tech (whom I will call Mr. MRI) was not on his game (it was a woman who administered the test in November). Mr. MRI didn’t remember I had already told him my name and birthday the second time he asked just minutes later. He then complained about UCSF’s paperless system. That made me a bit uneasy. I asked him how long he’d been doing MRI’s and he said about 12 years. He then started prepping to give me an IV. I told him I had a smart port. Mr. MRI didn’t want to use my smart port for the contrast IV because he’d never used one before. Clearly, I surmise, Mr. MRI does not like change. Instead he wanted to poke my vein and insert an IV. I didn’t know what else to do except say, “Okay?” He remarked what great veins I had, and then proceeded to not be able to hit my vein even after two attempts (and he had on reading glasses). I swear I could have hit the vein myself without glasses, that’s how chubby my veins are. Fortunately, the two failed attempts rule kicked in, so Mr. MRI went to get his colleague so she could try. To my relief, she was the same tech from November.
She looked at me and said, “Don’t you have a port?”
“Yes. A smart port.”
“Is it accessed?”
“Yes. I just had a blood draw before I came here and the access line is in place?”
“Then we’ll just use the port. You don’t need an IV.”
“Thank you. No, really. Thank you.”
Mr. MRI did not look happy. He questioned whether that was a good idea since I’d be face down. She told him it was not a problem. They had done a breast MRI just the other day using a port just like mine.
So, off we went for the MRI. But now I was feeling a bit anxious. Mr. MRI asks me what kind of music I want to listen to. I tell him blues. He says like bluegrass? I say no. Blues. Like Clapton or Taj Mahal. He says he’ll put on Taj Mahal. He had me put earplugs in, and once I was all situated in my face down position, he put headphones over my ears. Then Mr. MRI said he wanted me to position my breasts in a certain way. I said, “Look. I’m an old woman. Just feel free to put my breasts in whatever position you want.” I’m thinking to myself, how am I supposed to know how my breasts should be hanging? Inside, my anxiety is growing.
The imaging begins. First 30 seconds, after which he says the next portion will be 6 minutes. I say, “Uh, were you going to put some music on?” Mr. MRI apologizes all over the place, and soon Taj Mahal is playing in my ears. Oh, boy.
The 6-minute imaging cycle begins. When it ends, Mr. MRI tells me he doesn’t like the position of my right breast, and that he needs to reposition me. Which he does, and then we have to start the entire sequence all over again!
I’m trying to stay calm. This is supposed to be a 40-45 minute session. My infusion is scheduled for 130p. Already I know that I’m going to be late. Dammit.
And so we proceed. One 30 second cycle. Then a 6-minute cycle. Then another 6-minute cycle. Then another 6-minute cycle. Then another 6-minute cycle. Then a 10-minute cycle that included contrast. Each cycle, I would count the number of Taj Mahal songs that had played knowing that the average song is somewhere around 3 to 3½ minutes. So two songs for the 6-minute imaging cycle and 3 to 4 songs for the 10-minute one. I had such a headache by the time we got to the final 10-minutes, that I started counting my toes just to get my thoughts as far away from my head as I could. Agony. As I counted my toes first from left to right, then right to left, then by twos, I was also thinking don’t move, don’t cough, don’t sneeze, don’t twitch, just let this be over. And please, please, please let the images be good. I just couldn’t handle another do-over. And never again with Mr. MRI.
We finish. An assistant comes in to lower the table, help me sit up, put a gown on, and walk me to the dressing room. I gather my things from the locker. Drink a huge gulp of water. Try to quit shaking. Wondering what the hell just happened. This is UCSF, right? I have never had a bad experience here. Ever. I look at my phone and there is a text from Steve asking where I am. I let him know I’m changing clothes and ask where he is? He texts right back and says, “Here.” I text, “At infusion.” He texts, “No. Here.” I text back, “Good.” As I start to dress I discover they have not taped up the access line to my port. It is just dangling there. Are you kidding! There is tape in place, so I do it myself, but it was almost like the last straw. By the time I see Steve I am in tears. It was all just too much.
We get to infusion. They take my vitals, which are good. I’m the same weight I was two weeks ago…90.4. We wait quite a long time. A medical assistant to Dr. Rugo finally comes out and lets me know that my white blood cell count is below the safe range. That they will still give me the infusion, but I need to come back the next day for a shot of Zarxio. That I will need these shots the day after chemo from now on.
I tell her no. It’s a 6-hour round trip drive, and we will not make that trip just to get a shot. She tells me that if I do not have a confirmed appointment for the shot, they will not give me the chemo treatment. I say that there must be another solution. I ask if I can get the shot at the infusion center in Ukiah. That I was a patient of Dr. Wang there prior to coming to UCSF. She tells me I need to call Ukiah and ask if Dr. Wang will allow it. I shake my head in dismay, but I tell her I will do that. So I call and leave a message. She also calls Dr. Wang’s office to plead my case. My treatment notes need to be faxed to Ukiah. Thus begins a more than 2-hour saga of getting an appointment for a simple shot to boost my white blood cells. In the end, after many phone calls, I was able to get a Thursday morning appointment. Going forward the pre-filled syringes will come in the mail and Steve will give me the shots.
I finally sat down in the infusion chair at about 430p, three hours after my appointed time. My nurses were Larraine and Sam. They were wonderful, of course. We left at around 7p. Steve had to once again navigate an atmospheric river to get us home. Exhausted, we walked into the house around 10p having left at 830 that morning. I was beginning to feel like Dorothy.
“Click your heels together three times and say ‘There’s no place like home’ and you’ll be there.” — Glinda the Good Witch of the North – The Wizard of Oz
7 Replies to “There’s no place like home”
Now I know you’re not only the bravest person I know, but also a saint? How you could keep your cool through all that inept bungling, I do not know. It was inhumane, the way Dr. MRI treated you. I wonder if you’ll make a complaint or just try to keep it positive and make it through this whole ordeal. If you don’t complain, you could end up with him again?
I sure hope tomorrow goes waaay better, that you get your infusion and home in reasonable time, and Steve excels at giving you your shot. Courage to you too, Mr. Steve, as if it hasn’t been tested every week already.
You both go forth with my love in your pockets.
Love you tons
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I am flabbergasted with this account of Mr. MRI. How you managed to get through that is beyond me. You have amazing determination, stamina, and smarts. You are such an advocate for yourself. Steve, you are so essential to Lana’s well being. I cherish all that you’re doing.
I just watched the series, Beyond Chemo. It just ended and I ordered the series which comes with DVDs, a written text, and some bonus materials. I know some of the doctors and was introduced to several others. I would like to loan it to you if you’re interested. I think you’ll find some very valuable information. I learned a ton and am very impressed with all that integrative oncologists and naturopaths are doing.
Glad you can get the shot at home. Lizard had to give me a ton of shots after I got home from the clinic for Lyme. Some were excruciatingly painful. I assume yours won’t be.
Counting down right along with you…5 more.
Sending a bundle of love to you both. 💞
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Dear Lana, I just read your February 26 entry. As I read I kept saying “FUCK!” over and over again under my breath. Even my eye started to twitch, a sure sign of stress. You go ahead and be a saint; I’ll be angry enough for you all on my own. You deserve the absolute best care and love and that didn’t happen. As I write, it is chemo Tuesday again at 1:30 and if as in the past right now you’re infusing at UCSF. I’m lighting a candle and sitting with you, holding your hand gently with love and golden, healing light.
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I’m just starting my infusion. It’s always an hour or two late when I see Dr Rugo. Thanks for your love and the golden, healing light. ❣️
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