Okay, so yesterday wasn’t the best day, but so far today is going much better!

Jonathan and I arrived at Vanderbilt at 7:30 am yesterday morning.  I had labs drawn, a thorough appointment with my Lymphoma specialist to go over the week’s plan, and then headed onto radiology for my PICC line placement – the IV needed for 5 days of chemo infusion.

After the PICC line, we were checked into our beautiful suite-like room. It is really state-of-the-art minus the telephone (see the picture.)  They had to check my heart before the chemo, so I was taken to the 1st floor for a MUGA scan – which checks heart function.  That was a long process, but it got even longer when it was time to head back to my room.  I was warned that “transport” was way behind on moving patients around, and then I was wheeled out into the hallway with a miniature-sized Sprite in hand.  It felt like I was out there for an hour. It was a busy hall and I saw many people passing by.  As each passerby approached, I had to choose whether to acknowledge them or stare at the very small can of Sprite.  I often tried to nod and smile, sometimes I said “hello”, but I can tell you all of the ingredients in Sprite, where it is canned, and what ingredient is responsible for the 2% of your daily allowance of sodium.  🙂 Finally, the kindest man rescued me to take me back to my room.

A little while after settling into my room, my Lymphoma specialist walked in.  She said she was here for a reason (her partner is supposed to be making rounds).  She told Jonathan and me that there is a nationwide shortage of one of the drugs I need, and I will be unable to have it. She had already ordered it twice that day for other patients, but when she ordered it for me – it was out! What? Does this happen? No. This is very very uncommon.  So we had three choices. Don’t start treating. Omit this drug from the prescribed regimen. Or substitute with a similar drug that’s never been tested in combination with the other ones we will be using – so we don’t know the side effects.

What? We were in shock.  Jonathan said, “I feel like we’re about to fly in a Jet and we have to choose which fuel will fly the plane.” Yeah, that’s what it felt like.  We were flabbergasted.

We took a deep breath, said a prayer and called my cousin who is a pharmacist (thank you, Jenise).  We knew we needed to get on with treatment – I literally see the daily growth on my face.  So to omit or replace?  The doctor can’t ultimately decide for us.  We had to sign a consent form for our choice (and the pharmacy needed our order by 5pm if we want to start treatment today). Between our doctor’s advice, my cousin’s advice and a peace within us, we decide to replace with a similar drug (it has been used for 30 years, just not in this combination.)

We finally began the infusion at midnight.  I did fine.  I had some severe restlessness and agitation from the pre-meds of high-dose prednisone and benadryl, but otherwise I can’t complain, and there are drugs to counteract those effects.

I couldn’t ask for kinder, more attentive staff.  Jonathan and my Dad independently asked me today if my eye was opening more – and indeed it is!  Jonathan and I, and my family have even wondered if this medicine substitution isn’t a “God Thing”?  What if this is the best treatment for me?  You never know!  Maybe it is! This whole thing has been covered in prayer by all of you – down to the last detail!

As I said, today is much better.  I’m handling the treatment well, the kids are getting great care from Jonathan’s mom, and our faith is unshaken.  As we drove to the hospital yesterday, the song below was playing which is one of my favorites.  Good motivation to get this going and begin the fight.

At the moment, I’m surprisingly calm.  It truly must be your prayers and the peace that surpasses understanding. I met with my Lymphoma specialist at Vanderbilt this morning, and round one of our game plan is set.  On Monday morning, I’ll be admitted into Vanderbilt to begin cycle 1 of my R-EPOCH chemotherapy.  I will stay there until sometime on Saturday.  I can probably expect to see the swelling on my right eye and forehead begin to subside after this first course.  And as most ladies can understand, the challenge of hair loss comes to the forefront of concern – although nothing compared to the hopeful anticipation of being cancer-free!  If you know me at all, you know that I have the thickness and coarseness of hair equivalent to two or three women – often a blessing and about as often a curse. 🙂 I also have eyebrows of about the same description.  My unibrow has been an ongoing challenge since age 10. . . Therefore, to lose both is losing a little bit of my identity.

A few months ago after telling my hairdresser that my chemo wouldn’t cause hair loss, she assured my that even if it did, it would be okay.  She explained how she has helped several women transition through it.  After knowing my new treatment has a 100% chance of hair loss, her words came to mind, and I knew I needed to see her.  Today she cut my hair above the shoulders and gave me some bangs to cover what the doctors in Houston described as “impressive assymetry” of my eyes and “deformity” of my forehead.  Amazing how a little haircut can make you feel better!  She also prepped me for picking out my wig at the hospital, and how she and her hairdresser friend will make it look just like my hair.  Such a sweet relief! Plus, who knows maybe after a little re-growth, I’ll embrace a short hairstyle.

I’m thankful to God for all of the tremendous support from my friends, family, “prayer warriors” and medical team.  As I awoke to the scripture-of-the-day this morning (which in timely fashion was also mentioned by my mom as I went to bed last night), I was reminded of how so many of us suffer in so many ways. And often times in ways that are worse than I can imagine.  But despite how hard it can get, God promises us that He is forever faithful, and we can put our full hope and complete trust in HIm. No matter what.

We will be flying out tomorrow for Nashville.  Today we collected medical records and tied up some loose ends by gathering needed information before transitioning to the physicians at home.  I have requested my first return visit with Dr. Reddy, and hope to get that lined up tomorrow.  We are anxious to get the treatment started and healing underway.

I will post again after that appointment and let you know when we get moving onto the next steps – which I’m guessing will be next week.  We are looking forward to being back with our babies, and are very thankful for the good care of our kids by my Mom and Dad and all of the planning and funding they did for this trip.

Well, today has been another long day, but we are very grateful for the expertise and care I have gotten.  My original biopsy slides from last August and October were mis-diagnosed by the Vanderbilt pathologists, so basically we’ve been treating my cancer with the wrong kind of medicine.  Instead of a slow-growing , low grade MALT Lymphoma, I have either a mix of that type with large B-cell Lymphoma, or the MALT Lymphoma has transformed into Large B-Cell Lymphoma.  The characteristics of my Lymphoma are fast growing, aggressive and in need of a complete eradication.

My treatment will include EPOCH chemo.  This will require a 5-day hospitalization each cycle, and it will have the typical chemo side effects of hair loss, lowered immunity, fatigue, etc.  After 4+ cycles, I will most likely have a stem cell transplant followed by radiation.  The goal is cure.  Because of this cancer’s aggressive nature, it is important to completely destroy it – which will involve this rigorous treatment, but more than likely take care of my cancer.

As overwhelming as that information was to us today, we are grateful that the scans did not show any spread to other areas of my body.  We are still looking at just the forehead, right eye area and right frontal sinus.  I will also be able to return to Vanderbilt and begin treatment there.  The Lymphoma specialist at MD Anderson has already spoken to my Lymphoma specialist at Vanderbilt. It is a relief to finally have a clear diagnosis (that’s correct!) and a treatment plan in order.

We are so tired.  Please pray that we will be refreshed and ready for this next phase that we are about to start.  It will be a rigorous journey, but we will remain focused and trust God with each step.

Saturday and Sunday have been quiet days of rest.  As expected, the biopsy from my eye area has left me with swelling, bruising and stitches under my eyebrow – basically it looks like I’ve been in a fist fight. On top of that I have a big area of swelling on my forehead – pretty hard not to feel self-conscious.  I had to get out of our room today, so I sported a low visor and sunglasses – even inside.  Jonathan, in his complete support, tried to convince me that walking around the hotel and inside shops/restaurants like that is completely normal. 🙂

Tomorrow will be another busy day with at least 3 appointments at MD Anderson.  We will meet with a radiation oncologist (surprisingly, we’ve never met with one before), the Head and Neck surgeon again and then follow-up with the Lymphoma specialist who is coordinating all of my care.

Although the pathology results most likely will not be in yet, we hope to get some good insight from the scans, blood work and combined input from so many medical specialties.  I’m sure that there will be discussion on whether additional tests will be needed, and if surgery, radiation and/or more aggressive chemotherapy is the best treatment. We will be sure to post another update tomorrow evening.

If you wonder what in the world that picture is that Jonathan posted for Day 5 – that’s just a little taste of his artistic and humorous personality. That is simply the blood pressure cuff I had on my arm.  I think he thought the illustrations were intriguing.  🙂

We are overwhelmed by your love and support!  Thank you for the many many prayers and the comments of encouragement.  Love, April

p.s.  I may be clothed with a hat and sunglasses today, but my long-term goal is from Proverbs 31:25.

I can definitely say that MD Anderson is thorough and very willing to schedule as much as they can in a short period of time.  We have had a 7:30a-9:30p day, with continuous shuffling to accommodate different tests, consults, and convincing insurance to pay for new scans.  Today we:

• Had the pre-op physical with the ophthalmology nurse practitioner.
• Had more blood tests – didn’t know there were anymore to be had. 🙂
• Had a consult with the Head and Neck surgeon
• Had CT of my head through shoulder area
• Had a full body PET scan
• Enjoyed a great meal after fasting all day with some pretty good company (Jonathan). 🙂

Today I kept thinking of the Apostle Paul and his request to God to relieve him of his long standing affliction over and over again.  I remembered God’s Promise of Grace in 2 Corinithians 12:9, My grace is sufficient for you, for my power is made perfect in weakness. This is such a great reminder that my (and your) true strength is in Him and not measured by my strengths or limitations.  God is good.

Tomorrow, we check-in at 5:30 am for my surgical biopsy of the mass near my eye.  Thank you for your prayers!  We should have some answers from everything on Monday.

I had an appointment today with a world class Opthalmic Plastic Surgeon at 12:30, but somehow we did not leave the appointment until 5:15.  Needless to say, we are exhausted.  It was very thorough, so of course we are grateful for that.  Here’s today’s synopsis:

• All TEN tubes of blood were normal.
• Today’s MD agrees with scans and biopsy being needed to see if this is truly the type of Lymphoma that we think it is, or if it has “transformed” or if it is a completely different cancer all together.
• Scheduling is a mess, but we are trying to get a CT scan & PET scan tomorrow, a consult with the Head and Neck Surgeon, and a pre-biopsy physical and anesthesia consult (and I thought today was long).
• We have a biopsy scheduled for Friday with today’s doctor.  She plans to only sample the area near my eye – a tumor on the lacrimal gland.

Thank you for your continued prayers and encouragement.  We are so tired, and we appreciate your uplifting words.

Here’s a quick bullet point synopsis of our first day in Houston.

• Met Lymphoma specialist, Luis Fayad, MD and his P.A. this afternoon
• They both listened to my history from where we started last spring/summer until now
• Had TEN tubes of blood drawn for varying tests
• Scheduling is pending for:
• A new PET and CT scan (insurance wants a peer-to-peer review, because initially denying again)
• Head and Neck Surgery Consult for biopsy ( to see if original diagnosis is correct or if it has “transformed”) and “making me pretty” – wants to fix the asymmetry to my eyes
• Ophthalmology Consult for blurry vision and mass near eye
• We were encouraged to know that my treatment at Vanderbilt parallels what they probably would’ve done at MDA
• All of the consults and imaging/testing results will help Dr. Fayad determine the next best steps for treatment

We feel very blessed to be in an amazing medical center area.  We had no idea that not only is MD Anderson in this proximity, but many many other high level hospitals and research centers.

Thank you for all of the encouragement and prayers!  We are trusting God one day at a time to give us a clear path for answers and the best treatment.