Friday, October 4, 2013

B Day

It's biopsy day! Some new developments have occurred leaving me with mixed feelings about today, and what will happen from here on out, but I'm pretty much going to be the mistress of my own care and not let this get me too upset for too long. Had a great crying jag and lots of rage last night.

I've covered the story enough times that I'll give you bullet points to bring you back up to speed.

- Endo heard symptoms that weren't in her area and said I should see someone else.
- Made appointment with family practice doc who found several enlarged lymph nodes (not huge, but enlarged) in my neck and face. She asked me about the ultrasound and whether it would be a biopsy, and that we should talk afterward because some lymphomas can cause the symptoms I'm having.
- I asked the endo to change the ultrasound to a 'biopsy if needed' based on those comments and just realizing that if there's something to see, let's just get the information ASAP and not drag this out any longer than we have to.

I emailed my FP doc and told her that I"d made this change and asked her to get in touch with my endo or radiology or whomever she needs to in order to make sure that the biopsy is looking for anything she thinks we might find (i.e., the lymphoma you mentioned, thank you!)

She didn't reply to me for five days, at which time I wrote a second email, feeling nervous now (getting her on the phone is impossible because of the way this system is set up) that I haven't heard from her, so the LPN responds to acknowledge my email and that my doc will reply asap.

Here is the message I sent her:

Hi Dr. B,

I have asked Dr. (the endocrinologist) to update my order for the neck ultrasound to go from surveillance to a biopsy if needed. I want to make sure that if there's something you want them looking for in a biopsy that you have a chance in advance to get that communicated through whatever channels are necessary. 

The ultrasound is scheduled for 10/4 at {}. I am not interested in having two biopsies so if you think there's good information to be gleaned, please do communicate with her about the order, or however that needs to happen. Thank you! I'll talk with you after the ultrasound.

After now, a week of no response, increasing anxiety about this biopsy, and of course all of the 'what if' scenarios that play out for someone who is on this side of a major test, I get this response from her last night:

Hi Kristina,

You just had mildly enlarged lymph nodes and mild fullness in the area of your thyroidectomy, I did not feel any dominant masses that needed attention. Your labs were unremarkable.

Dr. B, MD

I was totally livid and didn't know why at first. I went back and read it a few times and I realized that all of the concern and intensity that she showed in our face to face, was complete lacking in this email. "Just" have mildly enlarged lymph nodes- Dude, you dropped the word LYMPHOMA on me. You asked me about BIOPSY and said you wanted a phone visit with me after that happens so we can do further tests, like chest x-rays. WTF!! "Just"?!

I lost my shit last night. I really did. I fell apart driving my son home from his girlfriend's house when he asked me what was wrong. He put his arm around me and I just started crying because when did he grow up enough to comfort me like that?? And goddamnit this SUCKS and I don't want it to suck in front of my kids, but I'm almost having to pull over because I'm crying so hard and he's just got his arm around me, letting me work it out. We get to the house and get out of the car and he grabs me and hugs me (he's giant) and tells me how great a mom I am, and how proud he is that I'm his mom, and how strong I am and how much he values that. I am just kind of shell shocked in many ways. LOL It's such a beautiful moment and I'm mad that it takes THIS to bring it forward.

I cried some more and just had to sort through it- suddenly I felt abandoned by my doc, that she is dismissing what is happening for me and doesn't have a CLUE what the use of her language means for her patients. I wrote many drafts and finally set her this reply:

This is very unhelpful to me, the (very stressful) night before my ultrasound/biopsy. Your response below leaves me to believe you are unconcerned about the 'mild' symptoms I described to you at my visit, and on the night before my ultrasound/biopsy this is a stress I absolutely do NOT need. 

Please help me by telling me the next steps you foresee now that you have my blood work back. You asked me in my appointment if I was having a biopsy more than once, which led me to believe you felt this was important. Your message below leaves me wondering if I misunderstood. I am feeling very lost in what is happening now, that I lack your support and clarity on what we are looking for and how we're looking for it. Something is wrong. We need to figure it out. I need to know what we are looking for and how we are doing that. 

Please also know that saying words like 'lymphoma' in a visit, asking about a biopsy and then following up with language like "just had mildly enlarged lymph nodes" sends very conflicting messages to a patient, and causes tremendous stress and worry. Are we looking to rule out lymphoma or not? Will the biopsy address this or not? What is the next step you and I are taking together on this issue?

At this time, I just needed a PLAN. What are we DOING?? So I made the decision. I am having a biopsy. I will talk with them today and make sure that if there is some kind of other cancer issue, that they will be able to find it because they are looking for it. I will have one more face to face with this doc and if she doesn't absolutely 100% get on board with me, I will find someone else. Which sucks, because in the day-to-day, she's a decent match for me. But when it comes to this stuff I don't think we're a good team.

So I got absolutely shit sleep last night, my brain was spinning out of control until 2am but I woke up in a good mood. I feel relatively relaxed right now. I'm just doing one thing at a time and not thinking too far ahead. I'm sleepy but I can nap later, so right now it's get the girl off to the bus, go have breakfast with my husband, and then head to the ferry. Just one thing at a time. I feel like Chandler at his wedding to Monica. ;)

I'm going to bring a little piece of a cedar tree with me to hold, and headphones so I can try to listen to music too, so hopefully just tune out and get through it. Randy is the perfect doula for me- he knows what to do, what to say, and he's very tuned in to me so it's never bumpy. There is a lot of touching and not a lot of platitudes which is great because I've kind of heard/said it all in my line of work and I really don't want to hear it used on me. ;) lol

Once I know more about timelines, when results come back, etc., I'll update.

Thanks for holding me in your heart today. xoxo

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