The Roller coaster continues

The last few weeks have been anything but smooth.

Jen finished her whole brain radiation on Friday the 21^st.  That allowed us to head up-north to see her family and mine for the holidays.  We enjoyed a great weekend and Christmas eve with everyone.

Unfortunately, Jen began getting short of breath on Christmas day.  By the morning of the 26^th, she was Very short of breath and had trouble speaking.  We immediately drove back to Milwaukee and headed directly for the Froedtert ER.  They did a chest X-ray and CT and determined that the plural effusion of the Left lung was collapsing it.  In addition, blood clots were forming, further compromising her ability to process oxygen.  They performed a thoracentesis and drew off approximately 950cc of fluid.  That’s a lot.  After the procedure, she was %1000 better.  Over the course of the day (Weds) her lungs got steadily better.  On Thursday afternoon, she was released and we went home with an Oxygen condenser, and twice a day injections of blood thinners to combat the clots. 

Whew.  OK, we’re home.  Relax. ... Right?

Friday the 29^th was a relatively unremarkable day.  Jen camped out on the couch with her oxygen, books and the remote.

Saturday morning was a completely different story.  At 6am she work me up, and she was in obvious respiratory distress.  Her breathing was shallow, labored and fast.  We called 911 and the Franklin paramedics came out.  Both ambulances.  Good to know we’ve got that kind of response to our neighborhood.

They confirmed her shortness of breath, loaded her up and took her back to the Froedtert ER.  Again chest x-rays and CTs.  Again, a remarkable plural effusion of the left lung. Again, a thoracentesis, and  almost 1500ccs of fluid were drained.  But this procedure didn’t produce the dramatic recovery of last time.  Her blood oxygen saturation level did not recover like it did previously.  She was not talkative and laughing.

Based on the very short amount of time she accumulated fluid, it was determined that a “permanent” catheter would be placed in Jen’s left plura.  Unfortunately, that can’t be done until Monday the 31^st.  So, with all immediate treatment options exhausted, the ER gave us the option of going home.  Jen and I believed she was not ready to go home, so we elected to have her admitted, in the hopes that she might get better over the afternoon/evening, and could THEN go home.  It’s a good thing we stayed in the hospital.

Jen was completely and utterly exhausted.  To the point of being unable to stay awake during a conversation.  This is most likely due to the effort required to breathe, the heavy medication, the procedures performed on her, the sleep deprivation, and the cancer.   It has me rattled.  Over the course of Saturday Jens’s blood oxygen level did not increase.  Increasing the volume of oxygen she was getting didn’t have much effect either.  So late in the evening, they prescribed a pressurized oxygen mask to help blow air into the lungs, in the hopes of forcing them open, decreasing the effort required on her part while increasing her blood oxygen.   That helped, and her oxygen levels increased to the mid 90s during her sleep.

On Sunday morning, they took her off of the RPAP mask and back on the regular cannula.  While she’s on a pretty high volume of oxygen delivered, her blood oxygen is increasing, but very slowly.

So now it’s Sunday afternoon, and I’m sitting here bedside.  She’s still VERY tired, and sleeps constantly.  But that’s good.  I sit here and watch her blood oxygen level like a hawk, and every once and a while glance at the Bears Lions game on the TV. 

We’re here through Monday afternoon, certainly.  When Jen goes home will be determined by how well she recovers after Monday’s procedure.  The hope is that by that time she’s recovered from all that’s happened this weekend and can be cared for at home.

There isn’t anything more I can do.  We're both pretty sleep deprived. All I can do is sit here and hope that things get better.

1 Week of Treatment and Good PET results

Last week Jen underwent her first five of ten whole brain radiation treatments.   She tolerated it very well.  We all continue to hope and pray that this treatment addresses the new tumors that the crizotinib can't reach because of the blood brain barrier.

Dr. Santana pulled us in on Wednesday to discuss the preliminary results of the PET scan.  He was smiling and happy which is hos MO for good news, and it was.  Overall, the lung and adrenal tumors have not increased in size.  So it can be said that the crizotinib continues to work against those.  In addition, there was decreased glucose uptake within the lower spinal column.  This means that the cancer has decreased in its activity.  Further, there was no uptake noticed within the liver.  So it's possible that those smaller metastases are gone.  The only new feature was increased fluid around the lungs (a pleural effusion).  It will need to be watched but for now it's not a big concern.  That might change in the future, but for now they aren't concerned enough to begin treatment for it.

Jen's week consists of another 5 treatments of whole brain radiation and rest.  So far she's doing great.  They've warned us that the hair loss and extreme tiredness will occur around the holidays.  We'll see what happens, but I hope that Jen can enjoy some good food and company during the next few weeks.

Not what we wanted to hear

Over the past two weeks Jen had been suffering from “sinus infection” symptoms.  Nausea, sinus pressure, headaches and cough.  Wednesday, her nausea was beyond bad, and we called it in.  In the afternoon an MRI was performed on her head.  Today, the doctors confirmed the worst, the cancer has spread to her brain.  There are multiple locations ranging in size from barely detectable to 15mm.  There is remarkable inflammation within the rear of the skull, and that’s what’s causing the headaches.  She's been placed immediately on anti inflammatory medication.

Wow, this changes the game. 

Why didn't the Crizitinib prevent this?  The blood – brain barrier.  It’s the mechanism that keeps blood borne infections and foreign bodies from entering your brain.  Unfortunately, this also keeps any oral or blood based medication from acting within the brain.

So there are two treatment options at this point: 1. Surgical; 2. Radiological (Chemo)

Multiple surgeries on the brain poses more short term risk than the cancer, so it’s out.  Therefore, Jen will undergo specialized chemotherapy.  She’ll receive daily, whole brain, chemo therapy treatment beginning Monday Dec 10^th and running through Dec 24^th. 

In addition, a PET scan has been ordered for Monday.  The returned cough has caused concern, and the Oncology team wants to get another complete picture of what’s going on.  Monday’s going to be a long day.

This type of treatment has a relatively high success rate for treating the cancers in the brain at this stage.  However, unless there is a progression of symptoms, or the need to confirm a complete recovery diagnosis, another MRI of the head will not be conducted.  So as long as it doesn’t get worse, we won’t be actively scanning it again.

We tell the kids tonight.  Basically we’re going to talk about the outward effects of the treatment, not the detailed reasons behind it.  There’s no reason to detail how it’s spread. 

This feels like a huge setback.  I’m at a loss for words.  We had all believed that we were on a positive path. 

Happy Holidays Everyone.