Port Access and Blood Draw Appointment
I saw my port nurse at 11:00 to get my port accessed and blood drawn. I told her about the
interventional radiologist not wanting to re-open and re-suture the port incision. She nodded her head decisively and said she agreed. I mentioned how I just hope they can get a clean closure when my port comes out, and she suggested I ask about whether or not a plastic surgeon could do it. I don't know how the scheduling works for these port appointments, but I guess it wouldn't hurt to ask, when the time comes.
Medical Oncologist Appointment
After a little wait, a medical assistant took my vitals, and I was taken to an exam room to wait for the medical oncologist who was filling in for my regular oncologist, who was
out sick. The substitute doctor was young and friendly.
She asked me generally how I'm doing, so I jumped into two recent concerns I've had. First, a couple weeks ago, I noticed my legs feeling tired and stiff. Literally any and every time I shift my leg position, or stretch them out in any way, I think, "Wow, that feels good, I really needed that." I mean, maybe it's just aging, but it seems a bit much for 43 years old. The doctor said she's about my age, and kind of laughed at the idea of being considered "old". But the only thought she had was that maybe I was feeling some kind of bone or muscle or joint pain from the
Lupron.
Also, just within the last few days, when I wake up in the mornings, my hands feel like they've fallen "asleep". That feeling passes after a few minutes, but my fingers feel numb and tingly and "thick" for quite a while longer, sometimes as long as a couple hours. This morning I got so nervous about my wedding ring getting stuck on a swollen finger that I took it off, with difficulty. Once I'm up and moving around, my fingers feel better, but a mild tingliness and "thickness" linger kind of on and off all day. The doctor thought the swelling sounded like fluid retention, again from the Lupron. She also suggested trying a wrist brace, like something used for carpal tunnel syndrome, to see if that helps with the numb and tingly feelings.
(Back at home, a Google search told me that not only is fluid retention a possible side effect of Lupron, but it's also a possible symptom of menopause, which is relevant because Lupron puts me into a chemically-induced menopause. Even more specifically, both
swollen fingers and
tingling in fingers could be symptoms of menopause.)
While doing my physical exam, the doctor of course noticed the unhealed port incision. I gave her a quick run-down of the history of the incision. To my surprise, she asked if I've considered taking the port out. I told her I had mentioned it to my regular doctor, who
didn't think it was a good idea. But this doctor thinks that maybe the port itself, being a foreign object so close to the wound, is what's preventing the incision from healing properly. If I took the port out, I would finish my Herceptin treatments via a regular IV inserted into a vein. She agreed that with 5 lymph nodes removed from my right arm, she would want to be cautious about
preventing lymphedema and limit the use of IVs to my left arm. I guess I'll think about it, but my first instinct is to just leave it alone. The port works, after all; it's just an ugly wound.
Finally, the medical oncologist prescribed the
exemestane that my regular oncologist and I discussed at my
last appointment. She made sure to mention that if the price is outrageous, I shouldn't pay it; I should call the Cancer Center, and they can help figure out a way to get the price down. Apparently, if the prescription has already been picked up and paid for, it's harder for them to manage.
At this point, I figured the appointment was over, but the doctor said she had one more thing to talk about. My regular oncologist
is leaving the practice! Ahhhh!!! The substitute doctor said my usual doctor really is out sick (who knows...) but she's also taken another job somewhere else as an in-patient oncologist. Sigh.
She said she could take me on as a patient, and I said that would be fine. From this one appointment, I like her well enough, and I don't know any of the other oncologists at all. Looking back on the appointment, I kind of wish she had led with the possibility of changing doctors because if I had known, I think I would have approached the appointment differently. I definitely would have answered some questions differently. I feel like I was kind of dismissive and not as thorough as I would normally be in some of my answers because I figured, "This substitute doctor doesn't really need to know everything, I'll just give her the gist of it, and catch up my regular oncologist at my next appointment." Oh, well.
At first she said our next appointment would be in 9 weeks. I hesitated a bit; she noticed, and encouraged me to say what was on my mind. I said I've had regular oncology appointments every 2-3 weeks since I started treatment, so having 9 weeks until my next appointment seemed like a long time. Without a thought, she said, "Okay, let's make it 6 weeks." Well, that really made me feel better, that she was so responsive on the spot.
Targeted Therapy Appointment
When I got to the infusion room, the usual medical assistant wasn't at the front desk. I was directed to a bay, and I got myself settled with a warm blanket.
When my infusion nurse came in, the first thing she did was sit down and say that my social worker had told her about my mom. I teared up, and she was very sympathetic. I wasn't really sure how much I wanted to talk about it, so I turned the conversation to how I was sad about losing my medical oncologist. She said she knows the doctor I saw today, and she thinks I'm a good fit with her. She went on to say that she also knows the doctor who is coming in to replace my old oncologist, and she thinks I would be a better fit with the doctor I saw today than with the new doctor. So that was reassuring.
We talked about the future appointments I need to have set up. When she started to confirm that I like my appointments in the middle of the school day, I said, "Well...." and told her about my dad's daily radiation treatments. I said early morning appointments would be better now, so I could get back in time to drive my dad to his appointments. She was immediately sympathetic again, and said she'd do her best to get me appointment times that make my life easier.
I told her about the stiff legs, and the numb and tingly fingers. She didn't have much to say about the legs, but regarding the possibly swollen fingers, she said we should ask my physical therapist to take measurements of both my arms. I guess those
baseline measurements she took before will be put to use after all.
My infusion nurse also asked for an update on my port incision. I told her about my interventional radiology appointment, and also about the new medical oncologist's suggestion to remove the port. The infusion nurse took a look at my left arm - confirmed that the whole arm did look puffy - and said it "wouldn't be a breeze" to use my veins directly, but it was doable. She said it's not something that needs to be decided right away; I can think about it for a while, and re-visit the idea later as the weather gets warmer (at which time I may want to wear cooler tops that would expose the incision site).
My physical therapist came in at 12:45, just before I got started on the Herceptin.
Physical Therapy Appointment
My infusion nurse and I got my physical therapist caught up on my numb and tingly fingers. She took measurements on both arms; from my wrist to my shoulder, every 4 cm, she measured the circumference, for a total of 11 measurements on each side. She had a printout of my previous measurements, and wrote down each new measurement alongside the old one; every single measurement was bigger this time.
So we knew for sure that both arms were a bit swollen, but she also wanted to see if one arm was bigger than the other, which would be a sign of lymphedema. She went back to her office to put the numbers into her computer, and she came back to report that my right arm is now 7% bigger than my left arm. That's still within the normal range, not quite the 10% that would indicate possible lymphedema. She said she even called up a colleague who is a lymphedema expert, and they agreed that given my description of the problem, it doesn't sound like lymphedema. Most notably, lymphedema tends to get worse during the day, whereas my swelling starts first thing in the morning, and gets better during the day. She said we'd keep an eye on the swelling, and she'd continue to do measurements.
(Later at home, I realized I never asked anyone what I should do about the fluid retention. Google tells me I should drink more water, eat less salt, and keep active.)
The physical therapist also worked on my cording. During this time, she told me how she has a blood condition, and my new medical oncologist is her hematologist. (Hematology/oncology is one combined specialty.) She talked about how much she likes this doctor, and it was definitely reassuring to know that this doctor is someone her colleagues would trust to manage their own care.
The Herceptin infusion finished first, and the infusion nurse let us stay in the bay until we were done. I left at 1:30, making my visit 2 1/2 hours.
