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the best laid schemes...

You make a plan, thinking it is all good... then bam, you wonder how you could be so stupid?!?

So, it is my third week on chemo and it seemed like the perfect time to bring my daughter. It is early enough in treatment that I am not feeling as bad as I know I will. I know chemo treatment is cumulative, and I will feel worse as I go along. Plus, the Urologist gave me a copy of my CT results a few days ago. They didn't say anything and the Oncology group hasn't called me to say I have a problem. So, I'm going with the "no news if good news" theory. 

I have warned my daughter multiple times about how boring going to treatment is... now she is about to find out what a boring long day of medical crap looks like. I warned her.

I should have known it would be one of those days, since I was scheduled for an afternoon appointment. Treatment generally takes me at least 5 hours... so this seems like a bad scheduling issues before we even start. After getting my labs done and before treatment, I had a quick stop with the Nurse Practitioner (NP). I let her know some of my main issues: some shortness of breath (especially while walking), nerve issues, balance issues, exhaustion, and some general I feel like I am on chemo side effects. I expected to hear the general - yep, it sucks to be you response. Instead, she lets me know there was actually some issues found on my CT scan from 10/5. The CT showed the fluid around my left lung and heart looked suspicious.

At this point, I have an "oh, crap... I brought my kid to an appointment where she is going to hear more concerning news." And I had. The fluid around the left lung and heart could be my cancer has spread. I guess I was thinking the fluid wasn't cancer related, and more an issue from when the doctor did the failed port attempt. I really had thought maybe it was damage from that, especially since the fluid/breathing issues had been gradually getting worse for a few weeks prior to any cancer treatment. I think that was also concerning to them - this is not something that started when I got on treatment. It was starting prior. Of course, if it gets better then there will be the concern that it validates the possibility it was cancerous since it improved with chemo. 

When I asked the NP about doing a biopsy, she said that it would be too risky to do a biopsy as it would likely collapse my lung. Well that doesn't sound promising! Plus, I don't know when I could get in to do a biopsy or if I should risk the possibility of them collapsing my lung since I am headed to MD Anderson next week. 

Unfortunately, I did not think about it at the time, but I am upset and not sure why they waited this long to tell me. They could have called me with the results or told me that I needed an earlier appointment. Waiting almost two weeks is really bad on their part. I could have had the biopsy during this time... and at least I would know if it is Stage 4 or not. Now, I will not really know and will have to be extra diligent about my health after I finish this treatment. I am actually really disappointed about this... but at the time, I didn't think to complain or ask about this. Honestly, I was more shocked and worried about my daughter and her reaction to hearing this.

Later, I spent all week trying to get MD Anderson to schedule a biopsy of that fluid, but no one there responded to my calls or concerns regarding this. It is hard since I am not established with the doctors yet. I am very upset and frustrated at the entire situation, but there is only so much I can do.

Back to Daughter Chemo Day! One good thing, is I have a great relationship with my daughter. And she is used to these unexpected medical new/situations happening. So, it would take a lot to surprise her at this point (well, that goes for either of my kids or husband too). We put the semi-bad-news or news-that-isn't-news-news aside and spent time hanging out.

She agrees that chemo treatment is quite boring. The first part of treatment is a bit of warm blankets and small talk while they give me a ton of anti-nausea medications. Then they put my hands and feet in ice for a few hours while I am passed out on Benadryl (and other anti-nauseous meds). I wake up cold... wanting warm blankets. Then we finally have some time to talk a bit and share some time being creative together. She is very talented, and she drew in her own notebook alongside me. Plus, she also took some video of me, as she is working on a film about our cancer experience. 

Art Journal Entries for In Treatment Chemo #3 & Week 3


Flashback Memory! It was funny, but her being there reminded me of when I took my son 10 years ago. He was 13 at the time, but it was his first experience at chemo (if interested, read about his visit at my 2013 treatment here). During his visit, I played a tiny trick on him. I was thinking of what I could do to my daughter, but it turned out I didn't have to come up with anything on my own...
They had scheduled me for an afternoon treatment - bad decision. Since I was nauseous, they had to slow down my treatment. Now, it was very late, and we were one of the last people in the building. There were only two nurses left, mine and the one other guy still getting treatment too. At this point, I really needed to pee, so I got up to go. Of course, I had not checked my chemo bag since it beeps and carries on when low. However, what I didn't know was that it was essentially empty. So, as I was headed to the bathroom, I looked down and the blood was seeping out of my port and headed up the IV line towards the bag. I definitely didn't like the look of it. I changed directions from the bathroom back to my daughter, calling out for her (she was on the phone with my mom). She realized I was serious by my tone, hung up on my mom, and looked up to see the blood going up the IV line. Her face looked horrified. She immediately got the nurse, who clipped the line so I could go to the bathroom. I felt that after that, she didn't really need me to play a trick on her. One happened naturally... it freaked me out too!

Inspiration for this Week:

"The best laid schemes o’ Mice an’ Men
          Gang aft agley,"

- To a Mouse by Robert Burns

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