BIOPSY SCHEDULED!!!

Well, everyone knows I was feeling a bit...EH...about my ultrasound the other day.

I reached out to my GI doctor down in Mayo to see how he felt.  One of his staff called me back and said that it wouldn't affect anything they are doing, so it's not something they would really want me to have looked at before doing the surgery. They said that for peace of mind and not having worries would be about the only reason they would say to get it done, but nothing medically.

 I, then, talked to my primary doctor who I LOVE and has had my back through and through with this whole CDH-1 bit!!!! She said it would be completely up to me if I wanted to do the biopsy or not. She said she could really understand wanting to get it checked out before surgery because there are no guarantees the inflamed lymph node is nothing. However, when she talked to my radiology doctor, she felt comfortable waiting until after surgery to have it done, too. She had suggested that she talk to my radiology doctor, again, and see if it would be possible to do another ultrasound before surgery in July-ish. I thought that sounded pretty good!!!

THEN....I sit and sit and sit and think and worry and talk to friends and family and my counselor.   I decided, although, doing another ultrasound in July SOUNDS like a good plan, it just doesn't appease me. SO, I let my primary doctor know that I feel like I need to the biopsy and she said that's just fine and a great idea if it will, hopefully, help ease my mind. The radiology department called today and BIOPSY SCHEDULED FOR MAY 17TH!!! I feel SO much better about this. THANK YOU to those who listened to me about this AND for pushing me to decide that YES, I need to be on top of this, too!!!

COUNSELING (even when, at first, you think you DON'T need it) IS A GREAT THING!!!!

When I was first told by my primary doctor to start seeing a counselor even if I think I don't need to, I thought just that....ya...ok. I listened, though, and started going. I'm thankful for the time I get with her even if today I felt like a kid doing an art project. Haha!

I feel like I've been pretty darn head strong, but there's one specific family member that has me beyond bothered and for what??? Totally not worth it, but since this whole CDH-1 get up, this person I thought I was pretty close with no longer talks to me or has anything to even do with me. I wrote a letter to this person about a month ago with one last shot and trying to fix our relationship and so far have gotten nothing back. I know I need to keep my head up, but this really bothers me!!! This person saw what my grandpa and mom went through so for that alone, I don't understand. Fine if you don't agree and wouldn't do what I'm doing, but I thought we were closer than that and supported each other through anything and everything.

Anyway, I need to move on and prepare myself mentally for this big surgery I have coming up. The pictures attached is my craft from my counseling meeting today. She had me write down EVERYTHING that I would want to say to this person and she told me not to hold back. Each phrase or word written with a different color. Then, she had me scribble over it with Sharpie and rip it up. I, then, glued pieces to that beautiful flower. Even the bad can become good....it's just a matter of how you look at it. Is this person worth it? No...and if I can keep a good focus I'll find a beautiful outcome.

This project actually felt good and it was nice to write down sooo much onto my sheet of paper. What's crazy though is the one word that stands out from all of that....I cropped it. I won't say what that sentence said, but what I wrote with that word was a powerful one and crazy it stood out even after the fact!

 

 

ONE YEAR LATER

 

Today is ONE YEAR since I was seen down in Mayo for my Genetic Testing consult and blood draw for the test.  I was given an abundance of information on anything and everything related to the CDH-1 mutation and Hereditary Diffuse Gastric Cancer.  I got statistics on the possibility of my test coming back positive for the CDH-1 mutation to statistics on if I test positive, negative, or inconclusive.  The whole way back from Mayo, while Sean was driving, I was google searching as much information as I could and everything Geoffrey, my Genetic Counselor, told me was what I was finding.  I knew during our consult he had mentioned IF you test positive, you can have some of your stomach or all of your stomach removed, but that would be further discussed with the GI department IF my test comes back positive.  I remember taking in everything I could, but thought, “Ya right….you can’t LIVE without your stomach.  How is that even possible??”  Sure enough, I found a ton of information regarding this and that you CAN live without your stomach, as you guys know.  I didn’t know how my test would come back, but I wanted to be prepared to hear my results whether positive, negative, OR inconclusive.  I did the blood test right away that day and had to wait for the pre-authorization to come back from insurance and then the actual test to be done.  Right before the Fourth of July, I called to find out if any results were back.  I remember Geoffrey’s receptionist telling me sometimes you get a call, but most times you just get a letter.  Then, she looked further into my chart and told me I’m marked to get a call.  I asked her how it’s determined if you get a call or letter (even thought I had a feeling if you test positive, you probably get a call) and she kind of stumbled over her words and said she wasn’t sure, but he’d be in touch with me shortly.

Here we are to current day…one year later.  It’s crazy the amount of information I’ve gained about this crazy little CDH-1 mutation and as much as I wish that CDH-1 stood for Courtney (my sister), Darla (my mom), and Heather (ME!) are #1, I’m just thankful to know all that I do and be able to be preventative and never have to worry about Hereditary Diffuse Gastric Cancer taking my life!

EH.

Had my follow-up ultrasound from my breast MRI this morning.  I guess you could say it went ok?  I’m not sure how I feel…the ultrasound tech was super sweet and kind.  She asked about a billion questions regarding this crazy CDH-1 mutation and my upcoming surgery in August.  When the doctor came in she said that the lymph node is still abnormal and they didn’t notice it when I was in for my mammo back in September and they did an ultrasound then, too.  At the same time, she said I have a lot going on right now and have been on frequent antibiotics with infections.  She felt safe just watching these lymph nodes and when I come back in October/November for my next mammo to do an ultrasound at that point.  If they have stayed the same or grown, then we would need to do a biopsy.  So, I guess because of the unknown I’m feeling a little unsure.  I am thinking I’m going to reach out to my GI team down at Mayo and see if they feel comfortable going into surgery this way or if they would prefer an biopsy done now.  So, that’s where we are…..not good news, but not bad news either….just eh news.

LAST DAY OF MEDS!!! and MRI RESULTS

LASY DAY OF MY 4X/DAY FOR 14 DAYS MEDS!!!!!!!!!!!! WOOT WOOT!!!!  I COULD NOT BE HAPPIER!

On a separate note, got a call from the clinic and my MRI came back showing NO lobular breast cancer! YAY! On the flip side, they found an enlarged lymph node near my armpit and would like to do an ultrasound and possible biopsy depending on how the ultrasound goes. They said not to be alarmed as enlarged lymph nodes could come from the body fighting an infection (had bronchitis in January, strep throat in February, and of course this h-Pylori in March), side effect of meds I'm on (which I've been on quite a few with these stupid sicknesses I've had over the last few months....ESPECIALLY the h-Pylori), or it could be a cancerous growth. Because of the first & second being VERY possible, I'm crossing my fingers for those. BUT...will have to wait do the US and possible bx until I'm cleared of meds for 3 weeks. They have me scheduled Tuesday, April 26th. I'll keep you guys posted!! :)