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time to hold my beer

FYI - it's the start of a crazy week! Grab your drink, take a sip, and hold on tight - this week is going to be brutal! 

I am scheduled for doctor's appointments every day this week - plus, it is my long 2 chemotherapies & immunotherapy treatment week on the same day I am flying to Houston, TX for my MD Anderson testing/doctor meeting week.

Check Out My Week:

I am going to need every bit of strength and energy I can find to get through this week. Originally, I was stubborn and said I could do the MD Anderson by myself... I reconsidered. While I could do, should I do it? I decided it was just too much for me while already in the throws of cancer treatment.

MONDAY

First off was the Oncologist. It is funny because I am excited when I learn something new... and no matter how many times you do this, each cancer gives you some lessons. Today, I learned something about my Port. 

I am getting labs on Monday and treatment on Tuesday. Part of me didn't want to get poked in my port two days in a row (plus, the pokes coming from TX. However, the Lab Tech offered me a solution: to leave the Port IV in over night. This was news to me. 

Here is what I learned: you can leave it in for up to a week, you can take it out yourself (and they will teach you how though I don't think I want to do that to myself), you can travel with it in, and another facility will not accept the Port IV line that they do not put in (while my lab tech told me the opposite - that MD Anderson could just use the one they put in, but my Oncologist told me that another medical facility will only accept one's they do, so I will get it out after treatment tomorrow). It makes sense when you think about it, but I was hopeful.


Here's what keeping the Port IV Line in Over Night looks like!


So, I had a brief glimmer of hope that this was going to be the only stuck with a needle one time. Instead, I would at least get today's labs and tomorrow's treatment with one punch, but MD Anderson would be more pokes.  (The biggest issue with keeping the Port IV in overnight... is sleeping. It is uncomfortable.

I think my mind was also like what if this comes out or my cute mini-dachshund decides to chew on the line... he has been known to chew on cords before. Look at that face... you may be fooled by he's cute face... thinking he would never cause mayhem. Suckers! 

Of course, nothing happened... however, knowing the Port goes straight to my heart makes a girl wonder, worry, & maybe even question. In the end, the Port was more uncomfortable than normal, but I slept and it was exactly the same for Tuesday's chemo. My thoughts on keeping it in: Convenient, but Uncomfortable.)

Back to Monday - if you haven't read my previous blog post a quick summary- I had a CT done on 10/5 and wasn't told the results until 10/17 by the NP who said I fluid around my left lung and heart that looked and suspected cancerous though doing a biopsy would probably collapse my lung and didn't think I could.

Now, in my current appointment, I was annoyed that the Oncologist told me I could get a biopsy of the suspicious fluid around my lungs and heart (medical names: Pleural Effusion, Pericardial Effusion, & Atelectasis). I asked if I could use a Interventional Radiation Group (like who I used to get my successful port) to do the biopsy. And his response felt like polar opposite than the NP visit last week, who told me doing a biopsy had the risk of collapsing my lung. The Oncologist acted like it was no big thing and I could have one if I wanted one. Then why did the NP not say the same thing last week when I asked?!? I have no idea why they are so disjointed, but now feels almost too late. I am leaving tomorrow to go to MD Anderson as soon as I finish chemo... so now I have to wait another week and set it up for when I get back. I still don't understand why no one called me or scheduled an appointment in now almost 3 weeks they had since they found the area on the CT! But, they didn't!! 

Now, I may never know if it this fluid is cancerous. I will have had three to four treatments and if it was cancer... it should be shrinking. It was a small amount of fluid. I am pretty sure they messed up and now it will be too late to determine. The main issue and question will be if it improves then there is a greater likelihood that it is cancer since treatment would make it shrink, but then again if it was something else it may would have improved on it's own anyway. All of this just frustrates me... we could have known for sure if they did the biopsy between 10/5-10/23... I bet you feel why I am frustrated and are right there with me!

I am not sure, but there is a real lack of communication between doctors, patients, care teams, and overall generally in the medical field. It is very different than 10 years ago, and not all for the better. I have seen and been on the wrong end of this type of situation throughout my entire 2023 cancer. So much of the responsibility falls on the patient - even though I am not a medical doctor. I have an MPH which has been beyond helpful in regards to knowing a bit of what should happen verses what is actually happening. It actually makes me more annoyed at the lack of professionalism and care that is happening. It is beyond advocating for yourself... it really feels more daunting than that.

Later that day, when MD Anderson called me for my afternoon appointment, I stressed this information again. However, the person was more on the insurance end of things. They would relay the message to my care team, but I was flying out tomorrow. I am not sure anything can be done at this point. My TX appointments are set. I am doing a ton of things while I am there, but I am hopeful that we will leave with a few more answers. Maybe confirming that my treatment plan matches what we are doing here. I always said that if I had to do this again, I would get a 2nd opinion. So, here is me doing what I said I would do. 

Inspiration - Of Monsters and Men, King and Lionheart
(their videos are always amazing too)

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