I was much less nervous as we headed to the cancer institute for my second chemotherapy yesterday. I was pretty sure they were going to be able to use my new portacath (and there were a few nerves about that, but it seemed like a good thing), and having now gone through one chemo treatment, I had a much better idea of what to expect.
This visit was organized a little different from my first one, though it will be the typical schedule moving forward.
My first stop was the lab to get the line installed in my portacath. It’s basically just like an IV line with all the hook-ups and tubes and stuff, it all terminates at a very fine needle that gets inserted into the port. I felt a little like Kareem Abdul Jabbar with my 6’0″ frame TOWERING over my lab nurse, but we hit it off right away. Comforting to have a good first impression of people who are going to be sticking me with more needles, right?
The insertion of the “Huber Needle” into the port was pretty simple. Take a deep breath in, hold it… now let it out slowly andddd hold it there. And it’s a small stick with a needle. Nothing fancy. No digging around in my wrist, no passing out, and over-all? A pretty happy me.
Here’s an animated video of how it works – pretty cool if you ask me!
My nurse pulled whatever blood sample they needed to test to be sure that I could handle chemotherapy for the day, and then button up my shirt and off we go.
Next was down to talk with “Erin”, the Nurse Practitioner who works closely with Dr. Dreyfuss. I hadn’t met her before, but she was great. Readers of the brain tumor book are all too aware of my general dislike for Nurse Practitioners, right? But this one was different – she knew what she was talking about!
There were two topics I wanted to ask about:
- First, my upset stomach. Yeah, I knew that I was going to feel like crap for a couple of days, but I also ended up with a really SOUR stomach. I can deal with the “Will I or Won’t I” barf in my lap thing. But to still have a nagging pain in the pit of my stomach was a bummer.
- Solution? Sure, we can tweak your anti-nausea meds a little. They are probably interacting with some other meds you take on a regular basis and causing that discomfort!
- Second, is there any reason I can’t do the Cancer Bike Ride in Aug? There’s absolutely no reason I couldn’t do it physically – riding 80 miles with 4 months to train is nothin’…
- Answer: ABSOLUTELY NOT. NO WAY. SORRY BUDDY.
Dang. That was disappointing. But I understood her point of view. They are fully focused on getting me cured of my cancer. That’s it. I need to be fully focused on that as well.
She did offer me a carrot to go with that disappointing stick, however…
She said she’d get me a ride on their team for next year and I could ride the full 2-day ride (almost 200 miles) with all the doctors from their department. Meh, works for me. Consider me appeased.
I’m going to keep getting my exercise on the bike, though. I think raising my fitness level through all of this will help. Besides, I have to be ready for the “VICTORY RIDE” next summer, right?
She also asked about the size of the swollen lymph node that had started all this. I thought I noticed it significantly smaller a few days after my first chemotherapy visit, but I hate to be a hypochondriac – so I wanted to get some confirmation before I said too much. She agreed that it was smaller, and would get so small with either this or the next treatment that I probably wouldn’t be able to feel it anymore. She said that my belly would also get less distended. Here I thought it was just all beer and peanut butter cups!
I considered this very good news!
Then it was time for my infusion. I had the same nurse for my infusion as last time, which was really comforting. Outside of that whole IV incident last time, I really felt comfortable with her. She’s very friendly and easygoing, and does a great job of explaining everything to me and answering any questions I might have.
There was a distinct look of relief my nurse’s face when I opened my shirt to show her my portacath set-up. She was able to get me hooked up to the infusion pump and get me started on a bag of saline right away while we waited for the ABVD to finish being prepared.
Whole thing went without incident (aside from the people one curtain over discussing their ghetto trash cousin who was currently “dancing” down in FL somewhere to get enough money together for a bus ticket to her next domestic disaster… Freakyyyy!). Same deal with the peach colored urine. A nice sandwich and fruit-cup for lunch – thank you to any and all of you who volunteer in hospitals doing meals, books, greeting, and all the other great volunteer work you do!
I felt good on the way home – still on the happy drugs that they gave me, of course – and had a small dinner with the Lovely Bride without issue. No illness on the way to bed, and woke up this morning feeling pretty good.
I had felt okay on Tues morning last time, as well, but today is really even better than that. I’m hoping that “better” trend continues. I’ll keep you informed. I’ll also see if I can find some documentation on the changes in meds that they made so that patients who are suffering from nasty side effects could at least ask if it would be an option for them!
I woke up this morning after a good night’s sleep – to find Nurse Bogey dutifully performing his most important task. Snuggling with Patient Daddy!
Today I need to try to get more on top of my hydration (just a little behind this morning) and make sure I stay up on the meds to help my body’s “plumbing”. Can someone get me a water? In the coming week or so, I’m guessing that we might see some changes in my hair. But we’ll take that a day at a time.
If I feel good enough later today, I’m going to try to get on the bike for an EASY spin session.
In Other News:
The Lovely Bride and I had an interesting discussion about this “Living With Lymphoma” project. The original plan was to do exactly what I’m doing – writing web articles to share my very personal story as I go through treatment for my Lymphoma. They are free and easily accessed for anyone who might be able to make use of them. I am really happy with the outcome so far. I think it is starting to reach out to more people who might need this type of information! And again, keep sharing so that people who could be helped by this info can see it!
The second piece of it was to write another “medical memoir” style book like the brain tumor book. My comment to Lovely Bride was that I should start getting my outline together for that book and get it organized. She asked an important question…
Why write the book?
My brain tumor book had two goals. First, there was so little information out there from a patient’s point of view that I wanted to add an honest and real account from one person’s experience. It has received great reviews and feedback from general readers, and the feedback from the Acoustic Neuroma community has been overwhelming.
The second goal was to dip my toes in the publishing world. After my brain tumor experience, I decided that it was time to do some of the things that I had always wanted to do. WRITE A BOOK – was at the very top of that list. Obviously, the brain tumor book wasn’t the “Book” I really wanted to write, but I thought it would be a good way to test the waters of the process. It’s been a huge success for me. The book has sold well, considering the subject material, and the publication process was basically painless.
But do I need to write the Lymphoma book? Is there a need? No. There are TONS of books about cancer experiences. Some well done, some not – but, unlike the brain tumor book, my book would add absolutely nothing. So, for now, we’re going to skip the book idea. If something really interesting happens along the way? We can always change our mind.
More importantly, the Lymphoma writing is taking away a huge amount of my time that could be spent getting my damned novel finished! The word count for this article alone is over half of my daily writing goal when I’m working on my fiction (fiction obviously takes a little longer because of the research and story planning, but still…).
So, I will continue to take the time to write these articles in the hope that they are offering information, hope, and a sense of camaraderie to other cancer patients.
And also get back to work having my fictional hero, T.R., save the world!
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