oncology part 3 and chemo part 1

First things first - I met a new oncologist yesterday at KU and I adore him.  He was kind.  He gave me more information than I knew I wanted to know. He had printed (and annotated in blue ink prior to our meeting!) relevant articles on the treatment on Hodgkin's to help ground our conversation (conversation!!) about the best treatment strategy for me.  And, on a personal note, he wrote lots of stuff on the exam table paper - which is something I like to do (shout out to Dr. JC Cowden who taught me this valuable method of communication).   And he wore a sweater-vest.

As I have walked down my long path to become a physician, I have always worked hard on my communication with families and patients.  Just providing medical facts and medication prescriptions is not as satisfying as cultivating a relationship with a patient for me.   And, more than a family just  "liking" me, I need to know that we are exchanging information in a productive way.  Sometimes this is hard work because we all come to the table with different styles and different goals.   Needless to say, I am thrilled that I have found an oncologist who will help to guide this crazy journey I am on.  And to all my doctor friends - all those times you sat a few minutes longer than you wanted to or explained things a 3rd time just for good measure - it really did matter, even if the patient didn't jump off the exam table and hug you (I'm saving that for my last clinic visit...)

So what did this wise sweater vest wearing man have to say?  Nothing that different.  2 months of ABVD chemo - then repeat the PET scan.  If PET scan is negative (no tumors, absolutely none) then I will have 3 weeks of radiation and be done. (really?!?)  If the PET scan is positive (even a tiny spot - which he pointed out could just be from residual inflammation) then I do 2 more months of chemo - then repeat the PET scan again.   If necessary, repeat once more, but he thinks 2-4 months of chemo and a little radiation should take care of this thing.    He is very proactive about his patients not throwing up (I am a huge fan of this idea) - resulting in prescriptions for 4 anti-nausea medications to take the first few days after chemo.   I have a pill sorter - my mother is proud.

This brings us to today - Day 1.  Chemotherapy. Holy shit....this is really happening?

John took me ( he was post call, bless his self sacrificing little heart).  We got all checked in, re-measured (I have been measured 5 times in the last week - 5'3" every single time...) and offered a drink nine thousand times - they love to offer drinks there.    The nurses accessed my port for the first time which hurt just for a second or two.  I kept asking the nurse if the port was working OK (yes, yes, yes!) because I have a huge amount of unfounded doubt about this little device implanted in my chest.  If I spend to much time thinking about a tube or medicine going to my heart, I admit I feel a little really grossed out.  I may have asked John if he has ever heard of someone's "vein exploding" from one of these - insert incredulous look from john.  This is one of the many reasons that I am not a surgeon or a cardiologist.    Next comes blood counts (all good).  Then more anti-nausea medications through the IV.  Then begins a 4 hour parade of the 4 different chemo medications that all run individually and each on a different time interval.  Before each medication I have to re-verify my name and date of birth - which seems super safe, but a little over the top.   Things went slowly but smoothly, best case scenario for first chemo, I think.

Since coming home I have been tired and a little achy- kind of like right before you figure out you have the flu.  Very little nausea and NO vomiting!  It sounds like the next few days could be rough, but I plan to stay on my medicine schedule and hope for the best.

Thank you for all of your emails, text, messages, facebook love, calls, books,  flowers, cards, banana bread (cara hoffart is my idol), and positive thoughts/energy/prayers.  Everyone has been so very nice.

port

A week ago, if you asked me to use the word port in a sentence, it would have been something like "Yes, i would like some port with my creme brûlée".

But the times, they are a changing.  On Friday, I had my port placed.  The procedure itself went smoothly - it did take 2 tries to get an IV, which I think is probably standard protocol for people about to get ports so it makes the port seem more important and you actually sign the consent form.   Then I took a quick break from reality with some fentanyl and versed.  Half an hour later, when I tuned back in, the procedure was done and it was time to go home.  I made John drive us to Blanc burger so I could eat a cheeseburger.

Recovery from the port placement has been slower and more painful that I had hoped for - but I am starting to feel better today.  Lots of sore muscles in my neck and chest - but not needing anything more than Aleve now for my discomfort.

I will use the port for the first time this Thursday for my first round of chemo.  I will have chemo every 2 weeks with doctor visits weekly to check my blood counts.  I'm anxious to get started on my chemo so that we can start shrinking this tumor.  I am also eager to see how good/bad I feel after chemo so that we know how much help we are going to need around the house.   Everyone has been so generous with offers to help and support the family during this time.  Thank you.

Today we had family pictures taken.  If you have ever thought to yourself  "the only thing more fun than family portraits is having all of my teeth pulled" then you and John think a lot alike.  Nevertheless, I wanted to have pictures taken before I started to look "sick".    Everyone was a good sport.  Hudson was complaining about his outfit and I overheard John saying "this is just part of having having your mommy for a mommy, sometimes we are going to have to wear things we don't like".   Love it!  :)   Finn melted down about half way through - so fingers crossed we got some good pictures.  And if we all look really, really happy and perfect - you will know the secret back story...

Enjoy the sun and snow today!

oncology part 2

Another day, another exciting list of tests and doctor visits.  Today I had my PET scan and received more good news - the only spots that show active disease are my chest mass and the place in my neck where the lymph node was located.  While my bone marrow results are still pending, my oncologist feels like I most likely have stage 2a Hodgkin's.  This means that I will hopefully be able to have a shorter than "normal" course of chemo and possibly less radiation.  There is a big push for oncologists to limit treatment to what is necessary in young (that's me!) women - so that I don't increase my risk for other health problems (breast cancer, heart disease) later on as a result of the original treatment.

I will have my port placed tomorrow and I am not looking forward to that.  More than dealing with the pain, I have a hard time giving up control in the hospital.  I am used to being "in charge" in clinic and the OR, so it is hard for me to just let go and put my trust in others for a change.  But, I have no choice - I am now the patient - and all I can do is hope that everyone is paying attention and doing their best every single day. Already, I know I will walk away from this experience with a deeper respect for my patients and the burdens that they carry.  That two lab draws in one day can be a big deal, and that "routine" procedures can still scare the bejesus out of some people...

We made plans to start chemotherapy next week.  I will get 4 different chemotherapeutics every 14 days for 2 months (ABVD protocol).  Then we will repeat the PET scan and hope that my chest mass has disappeared - if that is the case, then I fall into the lower dose treatment group.  70-80% chance....only time will tell.

I have Hodgkin's Lymphoma.....YAY!!

Today I got the news we have been hoping for - the pathology from my lymph node looks like Hodgkin's Lymphoma.  This is the best case scenario, as Hodgkin's is very treatable.  I was literally dancing around my office today when I got the news.  Its amazing how quickly your perspective can change!  We are just thrilled.  I know I can do this- its just a matter of getting through the treatment.  To determine the best course, I am having several more test this week and a meeting with the oncology team tomorrow afternoon to make a plan.  I am having a port-a-cath placed on Friday - so should be able to start chemo in about a week.

Today I had a bone marrow biopsy.   To be brief and not overly dramatic, it was not fun.   If I never hear another person say "I'm just tapping my needle on your bone" again - it will be fine with me.   John was there to hold my hand - and he took me out for ice cream after - so it all turned out ok.

My parents are here to help with the kids and the house for the next few days of testing and recovery from my port placement.  I about lost my mind when I was told that I wouldn't be able to life anything for 7-10 days after my port is placed.   It will be hard to resist Finn's newest phrase "up, pease?" but with a couple of extra hands in the house, he will be well snuggled and loved.

oncology part 1

We met with one of the oncologists at KU today.  Not much to report - still waiting for pathology on the lymph node.  I am having a bone marrow biopsy tomorrow and a PET scan to look for cancer in other parts of my body on Thursday.  Hopefully that means we will have the diagnosis by Friday.  

Thank you to everyone for your kind emails and messages.  It means more than you know!

The facts, as we know them

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.