Sunday, October 6, 2013

Endocrinology appointment tomorrow

Tomorrow I will have the phone appointment with my endocrinologist. She will explain my labs and in concert with my ultrasound I expect to hear that I am still clear of thyroid cancer. :)

After we have that phone conversation I will have to figure out what to do about the other symptoms I have and who I'm going to see about it. I wish that my care wasn't fragmented, and that physicians in the same HMO would just talk to each other and see if we could get a full picture of what's up. Maybe it's something small, I no longer feel all whipped up that it's something awful- but I don't feel resolved that it isn't, either, so I have to just see what is in the realm of possibilities.

It's nice to not have my days filled up with worries and cycling thoughts. If nothing else, the ultrasound was a milestone I could reach and pass and even if the information I gained didn't give me much to work with, it was enough to calm my mind. That's enough.

Friday, October 4, 2013

After appointment

So here's the news you came here for - after the ultrasound, the radiologist did not feel that a biopsy was needed. Basically I have a few enlarged lymph nodes but not significantly enlarged enough to be of concern, so I walked out with no bandaids and a lot of confusion.

It's good news- we're basically ruling out thyroid cancer all together. I remain in remission, 16 months. Woot! Still, I stood there feeling very conflicted and confused. I have spent all afternoon reflecting on this and I realize that the lack of biopsy means no thyroid cancer, but doesn't rule out anything else really. Which is okay too, I think... I'm not sure. I'm sitting with it.

It makes me feel like maybe I'm just making mountains out of molehills, it makes me feel bad for worrying people before knowing for sure there was something truly to worry about, and it leaves me confused about where to go from here.

I did get a response back after my strongly worded email to my doctor- from her LPN, who suggests that I call to make a phone appointment with my doctor to discuss my concerns. I have to admit, after the message I sent, I kind of expected a little more than that and I'm pretty angry to be left flapping in the wind with worries and pushed through the system like a number. Am I wrong to think that a little personal involvement, especially after my concise statement of concerns, would be appropriate? I don't think so.

I woke up this morning thinking that I should just switch to a doctor who has a little more sensitivity. Dr. B really has great qualities and for the day-to-day stuff I've been pretty happy with her care. She's not the best doctor I've ever had but come on, no one's perfect. However, the struggles I've had now, twice, in dealing with her or her office, is really over the top and over the line for me- so I think I will move on to another family practice doc and try my luck elsewhere.

What I wanted at some point, in retrospect, was for one of these providers to say, "Here are some of the things that could cause the symptoms you're having." I didn't get that, not even a guess. No one even said, "Do you have cold symptoms?" My enlarged, achy lymph nodes were a concern to everyone until the night before my ultrasound when suddenly they became unremarkable.

This is the kind of emotional roller coaster no one needs. So now I wonder, and worry that I'm wondering too much, if we're missing something. I want to sit down, paint the whole picture for someone who is willing to think through what might be going on, and run the tests necessary. I want to talk to someone who is okay talking with other people on my care team to get a bigger picture. I want to talk to someone who understands the significance to dropping words like lymphoma casually in an office visit to a patient who has symptoms of it, and who doesn't fall back to medical lingo when questioned. I feel like those are baseline things to look for.

So that's where I'm at. I'm happy it was not lit up for cancer, very happy. At the same time, I still don't know where to go with this, and I'm not sure if I should just let it go, see how I feel in three months and come at it again, or if something is going on where that would be some serious lost time and be impactful. I don't know! I just don't know.

For now I have a follow up appointment with my endocrinologist on Monday where we'll talk through my labs and ultrasound. She'll surely tell me that I'm clear of cancer and that maybe my meds need adjusting or something. I guess after that, I find another family practice doc and lay it all out to her and see what happens from there. Yay! and... ???!

In the meantime, I feel somewhat relieved, I got to the milestone. I got to the ultrasound and even though I was so scared I thought I was going to faint while walking down that hallway, here I am, with a little more info, a little more piece of mind. It's a good day.

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

Tuesday, October 1, 2013

Floating on

It's a weird day. I'm sort of counting down the days in my mind before Friday. I'm running through possible scenarios which helps me feel better until I hit a place where it's all bad, awful news, and then I rewind and start a new one.

I am watching Orange is the New Black and there are several scenes where Piper, the main character, is floating up and out of her body and something shifts inside her as she realizes what she's coping with. Her eyes are wide and her mouth sort of hangs open and her hands are limp at her sides and she walks along in a daze. (Maybe this is why I'm reading zombie stories again...) I totally feel this sort of shock and wonder and curiosity, and fortunately the gaps of that are large between the terrible fear of what is to come.

There are times when I see 'signs' that things will be okay. When I drove past that car that said Cancer Free Mom and Wife, that felt like a message. I mean, how random was that? I was reading an article completely unrelated to anything health related and she mentions delaying getting into a relationship because she was undergoing testing for cancer- and that after she found out she did not in fact have cancer, dived in. I thought, (how can you help yourself), maybe these are signs?

It reminds me of that joke:

There is a flood and some people are trapped on a rooftop. Some people go by in a boat and offer help and the family says, "Oh no, God will save us! We'll wait here." Other people come by to help in a helicopter, and it is the same response. "God will come for us and rescue us, but thank you anyway!"

The family dies, and when they get to heaven they ask God why he didn't help them. God replies, "I sent a boat and a helicopter, what more should I have done?"

It's a great joke and definitely has solid truth to it. Am I helping myself? Am I missing a helicopter? I'm letting those messages be the boats that I need to feel hopeful that maybe I am okay and that something easily fixed is causing all this ruckus. Or that, if I had to have some cancer, that maybe it is more easily treated with a good prognosis.

It's hard to sit here and have life be normal and at the same time if it's not, what else am I supposed to do? It's not like last time where everything felt so weird, out of place. I felt differently, and today I was wondering about that and realized that SO much has happened since early 2012 when I started this whole journey (cancer treatment, going to Uganda, my mother dying of an overdose), that I am changed, I am different, and my response will be different as a result.

I appreciate that I can always marvel at myself. :) Chalk one up for the easily amused!

In the meantime I'm trying not to be cranky. I'm tired all the time really, I go to bed so early now and wake up tired, tired all day- nap, still tired. I don't know if that's an emotional response but whatever, I'm working with it. I'm making some changes to my work load and just enjoying the periods of time when I can just be home, alone. It's quiet. No one is asking anything of me, that time is so precious.

My birthday is coming up in a couple of weeks. How weird is that? This time last year I was in Uganda. I miss it. The first anniversary of my mother's meaningless death is coming up in 12 days. Fall has become a weird season for me.

On we float... riding the waves that crest underneath us and hope to not topple over. So far, I'm hanging on.