Monday: Fertility Fail
I guess not every appointment can be stellar, but this one was just particularly bad. The first 30 minutes seemed fine - we went through all the normal intake measures, and then the nurse explained that with the treatment protocol we would be following, there would be a slightly increased risk of early menopause afterwards. Since I am still very young, this isn't an issue we would have to be terribly concerned about right away, but she still walked us through the options for freezing eggs in case we were interested. We were thinking that we probably wouldn't want to do anything since it was a low risk scenario and were feeling pretty good about this all until she said something about treating Hodgkin lymphoma. Here's how the exchange went:
Me: No, I have non-Hodgkin lymphoma.
Nurse: *looks at me. looks at computer. looks back at me* What? My notes say Hodgkin lymphoma.
Me: That's not right.
Nurse: *looks at computer again* What was your diagnosis?
Me: Diffuse large b-cell lymphoma. Non-Hodgkin.
Nurse: *still looking at computer* I need to go talk to the doctor.
Me: No, I have non-Hodgkin lymphoma.
Nurse: *looks at me. looks at computer. looks back at me* What? My notes say Hodgkin lymphoma.
Me: That's not right.
Nurse: *looks at computer again* What was your diagnosis?
Me: Diffuse large b-cell lymphoma. Non-Hodgkin.
Nurse: *still looking at computer* I need to go talk to the doctor.
So yeah. Somehow, they had the completely wrong diagnosis and treatment plan in their notes. After a hurried discussion with the doctor, the nurse comes back to tell us that there isn't enough data about the effects of the treatment protocol I am *actually* getting on fertility to really recommend anything one way or another (most people diagnosed with this are much older, so fertility isn't an issue for them). Two of the drugs in my protocol are "more likely" to cause problems, and two are "less likely".
We have decided that we are just going to see what happens. We were leaning this way anyway, and there just isn't enough information to prompt us to act. Plus, even if we were interested, we do not want to postpone treatment long enough to go through freezing eggs (the process takes an absolute minimum of 11 days, but when you factor in pre-approvals and scheduling, it's probably more realistically 3 weeks). All we decided to do was gather some data: they did some tests to measure my baseline fertility, and then we will recheck after treatment. Even though it is a gamble, the one thing that we do know is that age is on our side. As much as it sucks to be dealing with all of this so young, being young should help. So right now, we are taking the "whatever will be, will be" approach.
And are not recommending this clinic.
And are not recommending this clinic.
Tuesday: Port ... on the starboard side?!
For whatever reason, I was pretty sure that my doctor said the port would be put in on the left side of my chest. I made a joke later about how that made sense, because if you put it on the right, you'd have to call it a starboard. Turns out that it does go in on the right unless there's an issue with the vein on that side. So ... everything went well with my starboard insertion ;)
The nurses loved me - apparently I had a little smile on my face for the whole procedure. One of the nurses said that I should be the poster child for sedation. Totally fine by me, since I'll take sedation over general anesthesia any day!
After having a harder recovery from the biopsy than advertised, I expected to have more pain from the port right away. The next day was actually not bad at all! The most uncomfortable part is where the catheter runs over my collar bone. I am actually more sore today than I was on Wednesday, and I think that I have probably been over doing it. Fortunately, it is finally the weekend and I will be able to rest up.
The nurses loved me - apparently I had a little smile on my face for the whole procedure. One of the nurses said that I should be the poster child for sedation. Totally fine by me, since I'll take sedation over general anesthesia any day!
After having a harder recovery from the biopsy than advertised, I expected to have more pain from the port right away. The next day was actually not bad at all! The most uncomfortable part is where the catheter runs over my collar bone. I am actually more sore today than I was on Wednesday, and I think that I have probably been over doing it. Fortunately, it is finally the weekend and I will be able to rest up.
Wednesday: #shorthairdontcare
Since I will be losing my hair, I wanted to cut it off before it started to fall out.
Since I will be losing my hair, I wanted to cut it off before it started to fall out.
I have never cut my hair this short before - the shortest I have ever gone is chin length. Plus, I had most recently been growing it out, so this was a pretty drastic change. I ended up with about 10" to donate to Pantene's Beautiful Lengths, the partner program with the American Cancer Society that provides wigs for women with cancer. I am still getting used to the new style and the lack of hair. In case anyone was curious, phantom ponytail syndrome is a real thing. But I am actually loving the change! I think it is cute and fun and I never would have tried it on my own (thanks for the moral support, e!).
Thursday AM: We can be taught
I know I said it before, but I'm going to say it again: I love my medical team! We had our teach session with my nurse, and it was really good. We covered the major side effects (nausea, constipation, aches, mouth sores, changes in tastes/appetite) and what we can do to combat them. We talked about the things that I need to avoid (alcohol, getting pregnant), the things that I can still do (pretty much everything else, assuming I feel up to it), and the things we need to watch out for (fever, shortness of breath, signs of infection around the port).
She was appropriately appalled about how poorly the fertility visit went. She was also pleased with our current habits of drinking tons of water and eating frequent snacks and meals, and I think she was somewhat impressed with the questions we had and how prepared we were.
We got lots of handouts, reference materials, and resources. We also walked out with multiple different prescriptions to have on hand in case I need them. I am now feeling fairly optimistic about how things will go.
She was appropriately appalled about how poorly the fertility visit went. She was also pleased with our current habits of drinking tons of water and eating frequent snacks and meals, and I think she was somewhat impressed with the questions we had and how prepared we were.
We got lots of handouts, reference materials, and resources. We also walked out with multiple different prescriptions to have on hand in case I need them. I am now feeling fairly optimistic about how things will go.
Thursday PM: Nerd Alert
The last thing on tap for the week was the muga scan to look at my heart. As much as I dislike having to have all these tests done, I also find them very fascinating. This test looks at how well your heart is pumping by measuring your ejection fraction (how much blood is pumped out). Being the nerd that I am, I had to ask the nurse how it works. For all you other nerds out there, first they give you an injection of sodium pyrophosphate, which binds to your red blood cells. About 30 minutes later, you get an injection of a radioactive tracer (this time, it's technetium!), which binds to the pyrophosphate. They can then image the blood moving in and out of your heart. So if you've been keeping score at home, I've now had radioactive iodine, glucose, and technetium. No results from this test yet - we should get those at our appointment on Tuesday.
Friday-Monday: Rest
Four days in a row without an appointment? No pokes, prods, or tests until Tuesday? What is this?!
Much needed, that's what it is.
The last thing on tap for the week was the muga scan to look at my heart. As much as I dislike having to have all these tests done, I also find them very fascinating. This test looks at how well your heart is pumping by measuring your ejection fraction (how much blood is pumped out). Being the nerd that I am, I had to ask the nurse how it works. For all you other nerds out there, first they give you an injection of sodium pyrophosphate, which binds to your red blood cells. About 30 minutes later, you get an injection of a radioactive tracer (this time, it's technetium!), which binds to the pyrophosphate. They can then image the blood moving in and out of your heart. So if you've been keeping score at home, I've now had radioactive iodine, glucose, and technetium. No results from this test yet - we should get those at our appointment on Tuesday.
Friday-Monday: Rest
Four days in a row without an appointment? No pokes, prods, or tests until Tuesday? What is this?!
Much needed, that's what it is.
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