The past few days have been some of the scariest, most frustrating days I have experienced. I have talked to many of you about what has been going on- but thought that a blog where I can post updates makes the most sense to keep everyone in the loop. So for those of you who are new, let me catch you up.
I started feeling a lymph node behind my left clavicle about 5 weeks ago. In medical school, we spend time learning that this was the most worrisome location for a lymph node as it frequently signals metastatic cancer or lymphoma. So, like a good doctor, I tried to ignore it. I blamed it on a virus I didn't have. I hoped it would go away. But to no avail, the thing just stayed. So, I saw my internist this week where I had labs (all normal!) and a chest xray (....not normal.) Um....WHAT?
On Friday I had a CT scan of my chest and learned over the weekend 2 things. 1) I have a fairly large mass of lymph nodes in the part of my chest called the anterior mediastium and 2) I am blessed with the most wonderful family and friends. The CT scan findings and my neck lymph node mean almost certainly that I have lymphoma. (insert major crying breakdowns while attending H's basketball game, yoga class, grocery store, bath-time, bed time stories, middle of the night, etc) We do not know for certain yet what type of lymphoma I have, so don't know as much as I would like about treatment and prognosis. Most likely this is Hodgkins lymphoma which is almost always treatable, fingers crossed.
Today I went to KU where a very lovely surgeon removed the lymph node from my neck to send to pathology so we know what I am dealing with. It has helped that I have stitches on my neck to start to broach the subject of my being sick with H. Not sure how much we will share, or when, but he will certainly know. As one of my friends pointed out, F is blessed in this scenario - he will toddle through all of this with a smile on his face and not know enough to worry about his momma. He does like to point out my 'ouch' every few minutes - so we will see!
Tomorrow we meet with the KU oncology team - likely I will need more tests and procedures before we know all that we need to know to make a plan. Pathology is not supposed to be in till the end of the week at the earliest, so we have more waiting to do. I am so ready for a plan - I have never craved information more in my entire life.
Since I heard the news on Saturday from a very kind and gentle doctor who could teach a class (and probably does) on how to break bad news, I have had a sensation of floating just outside of my body. Even as I write this, I still don't feel like it is 100% real. The prospect of becoming a patient in a hospital with a medical record number and "no known drug allergies" is horrifying to me. The fact that all this is happening because I have cancer, is truly too big and bad on an idea to fully process at his time. To those of you who have hugged me, cried with me, cooked for me, talked with me, worried for me, prayed for me and loved me, I am moved more than I can ever express. This is going to be a long journey, and I promise to take every single one of you up on your offers for help - because we are going to need it. Thank you, I am a lucky girl.
I would be remiss to not devote an entire paragraph of this first update to the love of my life, John. In all of the storm of the past few days, he has been my calm shelter. This has always been the way for us, where I am anxious and excitable, he is steady and strong. But now, more than ever I am so grateful that I have him to walk with me down this scary, unknown road. He also made a kick-ass grilled cheese today which was just what my post-anesthesia body needed. So, give John a hug too - and buy the guy a beer - because he is carrying a lot in his heart right now
That's all for now. Will keep you posted.
Julia
PS - sometimes I feel like answering texts and emails, and sometimes I feel like pretending that none of this is real and just playing with the boys. So, if you don't hear back from me right away, please know that it because I get overwhelmed sometimes and need a break from talking about all of this.
We have beer! xo
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