This may be long (If I can stay awake)

Aaaand I'm done

I did it! I finished round one of chemotherapy today. WOOHOO!!!  Dance with me!!  I'm feeling good - started my nausea meds yesterday, as usual. I continue to be amazed by the fact that the fatigue seems to set in earlier and earlier with each treatment. Today I was in bed within a couple of hours of being home and I slept until after 6. Bobby woke me for dinner. 

Since I completed the first step in the process, it's time to up date the tracker.  

Now let's transition into today's clinic visit. What an interesting day it was. I had a lengthy chat with both the doc and his nurse (separately). First let's breakdown the information on the next round of treatment. I will be changing up my drug cocktail for this round so we get to say GOODBYE to The Red Devil.

Chemotherapy - Round 2

So, speaking of The Red Devil, I thought this one was going to be the worst of the drugs I would be taking. Tax (abbreviation) comes next. I heard it was "easier" and that's why it can be given weekly instead of every 2 or 3 weeks. OK, that sounded good to me. Then, in the same conversation I was told that the first dose needs to administered on the hospital campus in Lexington.
Wait...what?!?
Well, they said, there's a chance of a reaction and we like to have you close to the hospital facility.
Wait...what?!?
The details, up to now, had been sketchy so I asked my nurse about the gory details. She said there is more of a risk of a reaction - more details please - well, shortness of breath, increased heart rate, increased blood pressure, that type of thing. It's just important that I be there and I should be OK but we'll have access to the hospital's Rapid Response Team, if needed.
Wait...what?!?
This is quickly increasing my anxiety about it this particular infusion session. THEN, one of the other nurses says "if the nurse doing your infusions seems nervous, tell her to hold up."
Wait...what?!?
My medical team, who has thus far been stellar, is going to be nervous?? Holy crap! Nurses are always in the know because they are in the details and the day to day so, I have to admit, this raised the needle on my Weird-Out-O-Meter.  When I talked to the doc he said, "Tax is easier, side effects are less but fatigue will continue to be an issue. We'll get the first dose out of the way and you're going to do great." I'm going with that plan. Keeping my attitude up and thinking positive. I'll take any prayers and positive thoughts you can spare. I know I ask for a lot but I could use the support through dose #1 (July 8 for anyone who's playing along at home).

Flattered and Broken Hearted All At Once 

Let me start by saying that no privacy breaches occurred during the conversations referenced below. They didn't share any details about the other patient and they advised that they did not share details about me with the other patient. Of course, as you've probably guessed by now, I told the doctor and the nurse they could share the blog or, if they thought it would help anyone else, I would be happy to talk to anyone who was interested. Now, on to our story.

I had a great chat with my doctor's nurse today. She asked how I had been doing and answered a lot of my questions about Tax. She then proceeds to tell me that she used me as an example last week. She said that she met with a woman last week who had been diagnosed @ age 38. She didn't share details about stage or anything else, but she did say that they had recommended the same course of treatment that I'm going through and she was basically refusing. From what I could tell at that point, she was made aware of the risks and side effects and she was going to refuse treatment. Let me go ahead and put a disclaimer here. Though I do not understand this decision, I do not judge. Everyone has to take their own path but even with very limited information, this made  me very sad. There will be more info provided during the recap of my discussion with my doctor. Now back to our story. She said she mentioned me and told her (these are her words not mine) that I was going through the treatment and I always "bounce" in with a smile on my face, that the side effects had been manageable and I was functioning pretty well considering. Not sure if she told her I sleep for days on end but whatever works.  Now, remember, I don't know any contributing factors for this patient - here just a few things I don't know...

• Has she had surgery yet
• If so, lumpectomy or mastectomy?
• Staging
• Have body scans been completed?
• If so, is it anywhere else?
• Is she married?
• Does she have children or want to have children?
• Family history?
• Does she know someone who had a horrible experience with chemo side effects?

There is SO much that can impact your choices. 

So a while later, my doctor comes in the room. When he arrived I was playing Fairway Solitaire (I have a problem) and he walks in and says, "Hi Andrea, what are you playing and are you winning?"  :-) We talked for a minute about the game and then moved on to business. He asked how I was doing and I believe I replied with, "Just fabulous, how the heck are you doing?" He said fine. He moved on to the standard questions he asks on each visit. 

• Do you need any refills on anything?
• How are you feeling? Have you been sick?
• Are you keeping active at home (translation, I'm asking if you are laying around being pitiful or doing what you can between treatments - and sleeping - because he does not want you curling up in a ball and giving up. No worries here!

We then briefly talked about Tax but he quickly moved on to tell me that he, too, had mentioned me to another patient. Mind you, they don't see patients together so this poor gal had to hear about me twice in one day. She doesn't even know who I am but I'm wondering what her reaction might have been. Was she thinking, "Well good for her! (with sarcasm)" or "Really?"  He said he told her I was tolerating treatment well, had a positive attitude and always had a smile on my face. Anyway, he proceeds to explain the situation a bit more. He said he suggested the same course of treatment for her that I'm on and she basically said that she loved her hair and nails, couldn't imagine losing her hair and was going to refuse treatment.  He seemed genuinely concerned about this patient and her decision. That tells me (without him stating it) that he feels like she really needs the treatment.  Another disclaimer here. This is where I have a really hard time. The hair will grow back...the loss is temporary. I cannot seem to wrap my mind around valuing my hair more than decreasing the risk of a recurrence, or worse! Remember, both the doc and I know that everyone is impacted very differently so, like Gabriel and our micro-preemie experience, we can be used as examples/success stories but we are not the norm. It's a very tough position to be in. I could go on about my feelings of guilt when it comes to the preemie thing but that's for one of the other blogs. Anyway, my doctor said it was so tough because he could have 5 people with the same diagnosis, give them all the same drug cocktails and all 5 would react completely differently. He said he thought that factors like age and genetics could play roles there but he continues to say that attitude seems to make a huge difference. 

This post has gone way long and my eyes are heavy but here's the point here. I've used a concept I borrowed from LeanIn in work situations and I feel like it applies to this situation as well. The concept is, "Don't leave before you leave." What the heck does that mean, you ask? The LeanIn example is that in the professional world when women decide to start a family, they sometimes tend to start making decisions based on what they will do...possibly years down the road. They don't pursue promotions or additional responsibility because they think they will walk away or have to less responsibility when they MAYBE have a family SOMETIME in the future. I've also used the concept in talking with people I knew weren't happy in their current work situation. It's fine if you decide that what you're doing now isn't the right fit for you. By all means, look for something else BUT as long as you're here, be here. Don't leave before you leave. Work hard and do your best while you're here, you'll feel better about yourself, you'll likely leave on good terms...I know...blah blah blah. But the point with regard to the story above is give yourself a chance. Everyone has the strength within them and it's a choice. A diagnosis is not an automatic death sentence and there are worse things than losing your hair and having soft fingernails. There is so much in this world to live for and to fight for. Don't leave before you leave - take control of what you can control and don't give up.
Reminder, I do not know this woman, I know nothing about her attitude, her history, her medical situation...anything BUT it saddens me to think that someone so young is not taking the bull by the horns and fighting.  Again, please don't leave hateful comments saying that everyone can make their own choice and not everything that seems right for one is right for another BECAUSE I AGREE.  My point is that it just saddens me. Does that make sense?

Feel free to leave comments below, if you wish. 

Love to all,

Andee