Wednesday, February 24, 2016

A new path

A very long day at Huntsman Cancer Center.

It was surreal sitting in the hospital.  I sunk down in a cozy seat of denial.  Even two hours into the appointment, I was sure Shelbie didn't have cancer.

I have been talking to Shelbie about trying to take on a little more responsibility in her own care.  It's time she start finding her voice and expressing her needs.  That experiment started today.  Her dad and I let her go back alone for the blood work.  It was hard.  So hard.   They had to take 13 tubes of blood!  Of course she did fine.

I really loved our new doctor.  He is from Lebanon and has the best bedside manner and sense of humor.  He is quiet and then just interjects a joke or sarcasm, completely out of the blue.  Totally our type of doctor.  It felt amazing to be listened to and not brushed off as being crazy, dramatic or making stuff up.  He was kind, gentle and very much like our doctor from Seattle.

Prior to seeing him, we saw a Fellow.  He too was very impressive.  He too listened and was so patient.  There was a point when Shelbie got a little emotional and anxious and he just let her have a moment.  He left the room to let her process things for a minute and then came back in.  He said, "Shelbie, I know this is all really hard to talk about over and over.  I appreciate your tears.  I can understand what you must be feeling and I know it feels weird to cry in front of a doctor but I am glad you felt you could be honest with your feelings."

I have never heard a doctor say that and it was very tender and empathetic.  After awhile, I wanted to ask him if he was from Canada.  I had no reason to ask that but felt impressed to.  It turns out he was born in the same town as me and we lived a block from his uncle!!  His grandpa's brother was best friends with my parents!  It's unbelievable really!  And...his aunt's daughter is my sister's friend!  This is the third time we have been led to a doctor who has ties to our family.  I am so astounded by this.  It blows me away.  One doc was even found all the way in Seattle!

He believes it is possible that Shelbie has a rare cancer of the lymphocytes BUT until more tests are done, he can't say for sure.  She has most of the hallmark symptoms of cancer- pain, nausea, night sweats, day sweats, enlarged liver, enlarged spleen and atypical and large lymphocytes, increased monocytes.  The name of cancer he suggested was the very same name that Dr. S suggested three weeks ago.  I found that interesting.  He is also planning a conference call with Dr. S in Boston and Dr. Savage at the National Institute of Health!

Our new Oncologist also wants to bring on some other specialists since this is so complicated.  So, we will be meeting those new docs in two weeks as well as our Cardiologist.  He said he has spoken to the Cardiologist and they feel strongly we need to address her heart situation and those faulty valves.   He also feels there is an underlying genetic disease that is attacking all of her organs.  He has some ideas of what that might be and after listening to the symptoms, it sounds identical to Shelbie.

So, the plan is this...We will be here at least another day or two.  She has some more testing to do including a PET scan and some flow cytometry testing on her blood and some specific bone marrow failure testing that I have never heard of before.

In two weeks, we come back to meet with him, and three new docs and get results from the PET scan.
Shelbie is doing so well all things considered.  I did really well today as well until about 7pm and I had a little fall apart.  It's been a long, hard day.  Oh...did I mention my car died while sitting on a steep hill at a red light, 10 minutes before our appointment!  I'm so sick of this darn car but I really can't afford a new one.  It's 10 years old and nearly 200,000 miles!  Anyways, that was more frustrating than anything.

My biggest feeling tonight is anger.  I'm angry with myself and angry with our provider at home.  I am so angry that for over a year, they have done nothing but blow me off.  We have always been accused of worrying too much, even suggesting that I just want something to be wrong with my kids; making mountains out of molehills!  It has been so hard, that I stopped taking my kids to the doctor because I couldn't stand feeling like they just looked at us as a big joke.  I have become embarrassed to even admit the kids are sick.  They never took Shelbie's complaints seriously.  So, now we are a full year later and these are problems that should have been addressed last year.

I felt like a totally incompetent mother when the doctors today kept saying, "So, when they found nodules in her lungs, who did you follow up with?"  No one...because I was told I worry too much!  I hate seeing a doctor's jaw drop when I admit I didn't follow up.  It's going to take me a long time to work through these feelings of guilt and shame.

If I never see our specialist back home, it will be too soon.  A doctor should never make you feel like a loser!  Never.  They shouldn't have a license if you ask me.  And...I hate myself for feeling that too.

 Tonight, I'm struggling.  An hour ago, I was fine. Having a really hard time as I process the gravity of this.  Even if we dodge the cancer bullet...her body is breaking down and her organs are not in good shape.  We are in a very serious situation.

Despite those struggles, I know that God was with us today.  I know that we were led here and this is where we need to be.  I know he will help me work through the dumb car issues, the jobs I am bogged down with, the focusing problems I am having and even  help me find peace in the discord I am feeling for the doctor that I put all my trust in and he chose his ego over being a doctor.  And...I know he will take care of Shelbie.

PS...Sam and his group did such a great job on their presentation, the Mayor asked them to present their idea for updating the crosswalks in our city to the entire City Council!  I am so proud of him for working so hard and doing his best.

Well...more tomorrow as this story unfolds. Thank you so much for the prayers and concerns.  It means a lot to me.

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