R-ICE Over Radiation?

Day 146, Friday, October 20, 2017

For anyone who has to make a daily commute to downtown Los Angeles from the Inland Empire…I am so, so sorry…that commute is AWFUL!  Tim and I had to make the trip from Menifee to West LA in order to get to my bone marrow/stem cell transplant consult appointment.  Even though we left early, we still had to sit in 2 hours of stop and go traffic – which was okay only because we took the time as husband and wife to ask each other questions like what a perfect date with other would look like, what we would do if we had a million dollars, and who we would swap places with for a day.  The time passed quickly enough and we got there a little after 10 a.m.

We met with Dr. Farol, who will be my bone marrow/stem cell oncologist and although Dr. Jang is a very good doctor, I wish that we had started with Dr. Farol to begin with.  MUCH better bedside manner and he really took the time to explain to both Tim and I what to expect in the next chapter of killing George.  He even drew us pictures, a graph and a timeline just to be extra thorough.

So here is where we stand: Dr. Farol is recommending that I get one more PET scan and a biopsy of the tumor done before we move forward.  He wants to be ABSOLUTELY sure  that the tumor is still active before we keep going with an invasive treatment plan.  .

If the biopsy and the PET scan both come out negative (meaning that the tumor has truly died and I am in remission) then I will be doing radiation and no transplant.  Radiation in the area where the tumor is poses the risk of a 5-10% chance that I will have breast cancer 3-5 years post treatment and also the risk of developing something called radiation-induced carotid artery stenosis….

umm…English please?
Carotid artery stenosis = plaque build up in my arteries which leads to heart disease

If the biopsy and the PET scan are both positive (meaning the tumor is active and still aggressive) then I will need to start the transplant process. If the PET scan is negative and the biopsy is positive, I’ll still need to start the transplant process.  The risks factor for stem cell transplant is a 3-5% chance that I will develop leukemia. I will need to have a series of tests run including: bone marrow biopsy, cardiac stress test, echocardiogram, 12-lead EKG, lung test, blood/urine tests and a dental clearance exam.  I’ll need to have two cycles of R-ICE chemotherapy (3 days in the hospital in Riverside getting chemo and 18 days of rest in between).  After the 2 cycles of R-ICE, I’ll need to start getting daily injections of Zarxio/Neupogen which is used to boost my white blood cell production.  I’ll have to have a Hickman catheter implant which is what they will use to harvest my stem cells after 7-10 days of starting the daily injections.  The stem cell harvest process takes anywhere from 2-5 days.  City of Hope will house Tim and I at the City of Hope campus while they are harvesting my stem cells so they can freeze them at their lab after they are collected.  Once Dr. Farol has enough of my stem cells (about 4 million are needed), I’ll have a week to recover at home before I will need to be admitted to the City of Hope hospital.   Once I’m admitted, I will be given another chemo regimen called BEAM chemotherapy.  This is an extremely high dose chemo protocol which will be given to me everyday for 7 days.  I will then be allowed to rest for 24 hours before they infuse my collected stem cells back into my body.  I’ll need to be in the hospital for a total of 3 to 3 1/2 weeks from the time I am admitted and will be discharged once stem cells start producing white blood cells, red blood cells and platelets on their own.

While I am at City of Hope, Dr. Farol is encouraging me to have visitors (adults only).  My immune system will be at zero, so I will have my own room with a special filter to keep germs out.  Visitors who come see me will need be sure they are not sick at the time and will only be allowed in with mask, gloves and gown on.  Visitors will also be able to donate blood to me since there is a high chance that I will need blood transfusions while my stem cells are building up.  My kids can come see me occasionally and COH will be providing our family with social workers and a team to help the kids handle what is going with me while I’m in the hospital.

Dr. Farol believes that I have Primary Mediastinal Large B-Cell Lymphoma which is a rare Non-Hodgkins Lymphoma subtype and accounts for approximately 2% of all NHL cases.  He will be consulting with the doctors at City of Hope to discuss my case and confirm what the best course of action should be.  I should be hearing from Kaiser next week to schedule the biopsy and PET scan and then go from there.

I know I just threw up a bunch of technical medical information at you – trust me, Tim and I took a long nap as soon as we got home because of the information overload and stress and anxiety of the appointment.

So how am I feeling after today’s appointment? Relieved that the appointment finally happened.  Annoyed that I have to have another biopsy, PET scan and possibly more chemo.  Freaked out by the risk factors of either options.  Frustrated that either option is going to pose its own challenges during and after the treatment ends.  Happy that there’s a high chance that I’ll still be home for Thanksgiving and Christmas…but most of all at peace with the whole situation in general.

Even though it feels like we are taking baby steps towards my goal of full remission, they are still steps forward…

“But now, God’s Message,
    the God who made you in the first place, Jacob,
    the One who got you started, Israel:
“Don’t be afraid, I’ve redeemed you.
    I’ve called your name. You’re mine.
When you’re in over your head, I’ll be there with you.
    When you’re in rough waters, you will not go down.
When you’re between a rock and a hard place,
    it won’t be a dead end—
Because I am God, your personal God,
    The Holy of Israel, your Savior.
I paid a huge price for you:
    all of Egypt, with rich Cush and Seba thrown in!
That’s how much you mean to me!
    That’s how much I love you!
I’d sell off the whole world to get you back,
    trade the creation just for you.”
-Isaiah 43: 1-4

 

 

Hill Meet Mountain…

Day 131, Thursday, October 5, 2017

This week has been a long one…waiting anxiously day by day to get results from Friday’s PET scan has been challenging to say the least.  The Enemy never misses an opportunity to find a weakness and attack and so the last few days have been a mental and spiritual battle.  It’s like that one annoying string on a sweater that if you keep pulling and pulling on will eventually turn the sweater into one big ball of string.  As much I tell myself to be strong and even though I have a team of cheerleaders who constantly pump me up and encourage me…I am only human and sometimes I let the wall come down.

What if the tumor didn’t shrink?
What if George is spreading?
What if you will never be back to normal?
What if you need surgery?
What if…what if…what if…

I kept myself busy this morning by going to work and then doing a little grocery shopping after.  By the time I got finished, it was almost time to pick up the kids from school and head to the appointment.  We sent the kids with the Norton’s (thank you Jesse and Sheila!) so we could head to Kaiser in Riverside.  Traffic was heavy headed toward that way, even taking the back roads, and so I took the opportunity to take a power nap because I had worked myself up all morning and was already mentally exhausted.

Awhile ago, at an earlier follow-up appointment I had hoped that George had shrunk only to find out that he did….but just a little…it was like climbing a hill only to reach another hill…well:

Hill meet Mountain

The tumor shrank just a little more…not enough for me to go into remission and not enough to be under 3 cm.  So what does that mean? It means that right now the plan is for ONE MORE round of R-CHOP to “buy a little more time” as Dr. Jang put it to us this afternoon.  My case is being referred to the Kaiser Sunset Hospital in West Los Angeles who currently collaborates with the City of Hope.  Dr. Jang is recommending that I be evaluated as a candidate for bone marrow transplant…to be more precise they want me to have an autologous transplantation procedure.

Doctors will harvest my own stem cells from my blood stream.  I’ll then be treated with extremely high doses of chemotherapy and possibly combined with radiation.  The high dose chemo kills the cancer cells, but will also kill the blood-producing cells that are left in the bone marrow.  The collected stem cells will then be transplanted back allowing my bone marrow to produce new red blood cells.  My immune system will be completely wiped out and I will need to be kept in isolation to prevent any chance of infection until my red blood cell, white blood cell and platelet counts go up.  It is going to be a long, hard process in which I will most likely need to stay in the hospital for at least 4 weeks and at the most 8 weeks.

Not quite the news we were hoping for, but we knew deep down that the process wasn’t going to be a quick one.  In the grand scheme of things, this route makes the most sense: hit it hard while my body can take it versus doing maintenance therapy and risk the tumor coming back later on with a vengeance.  Since I’m young and healthy, aside from the tumor, Dr. Jang thinks that I’m a good candidate for the transplantation process.

The ride home was rough.  I didn’t say much in the appointment room since Dr. Jang likes to talk fast and very technical and since Tim was asking most of the questions for me.  I was trying to hide my disappointment and frustration and not cry in the hospital but on the way home in the car I couldn’t hold back anymore.

THIS. ABSOLUTELY. EFFING. SUCKS.

Tim pulled into the nearest Starbucks on the way home since coffee usually makes me feel better.  As we pulled into the handicap parking space, I lost it completely and had my breakdown.  A few minutes into my crying fit, we heard a tap at the window on my side of the car.  A police officer noticed that we had parked without seeing our handicap placard and then realized I was crying and wanted to make sure I was ok.  As I rolled down the window, Tim said that I blurted out: “I have CANCER!”  To which, the poor officer replied, “Oh, well I was just going to mention the placard…but um…I’m not going to say anything anymore..I’m so sorry ma’am” and walked away.  My husband, always doing exactly what I need, took my hands in his and started to pray.

That’s all we can do right now.  Pray.  Pray and trust that this is in His hands.

This monster inside of me…feels like Mount Everest.  But mountains were made to be climbed, right?  So I’m going to climb to the top…I’m going to place my cross…and I’m going to shout to the world that I beat cancer not because of how awesome I am…but because of how awesome HE is…