An Appointment

Finally, we have an appointment to see the oncologist.  After a week of trying to facilitate communication between Johns Hopkins and the doctor's office here, we had a breakthrough today.  I started the process by calling Johns Hopkins to ask if they had called the oncologist's office as that office requested last Friday. 

Johns Hopkins said they had never seen such a problem in scheduling an appointment.  The administrative assistant there said that she already called early last week and then sent a referral letter as well.  She was quite surprised that another call was necessary.  She also informed me that the doctor here in the valley had emailed Dr. Schoenberg to say that they had not heard from me yet!!!

The nice lady at Johns Hopkins said she would call the oncologist's office.  Ten minutes later she called back to say that I had an appointment with the oncologist on January 26.  I am very thankful to her for jumping in to help. 

Now we are hoping that treatment can begin soon.  We are so thankful for all your prayers.  We're so grateful that SOMEthing is happening.

Specific Prayer Request

My son Ben, the pastor, tells me that it is helpful to have specifics when praying for someone. While we are so thankful for the prayers for healing coming our way, we are beginning to feel the need for a prayer that I will be able to get an appointment with the medical oncologist here in a timely fashion.

So far we have not been able to schedule an appointment here to get the chemo started. Dr. Schoenberg emailed me that he spoke at length with the doctor here and that a plan has been created for my chemo. That was on Tuesday, the same day that I saw Dr. Schoenberg. However, we have not been able to get an appointment because the office here needs an official referral. That was to have arrived Friday morning. Friday afternoon I called and was told that the office here also needs a phone call from Johns Hopkins, so the scheduler can ask some questions. I relayed that to Dr. Schoenberg's office late Friday afternoon. Not surprisingly, we have not yet heard anything.

I spoke to Gaye Blevins from Westhampton Christian Church last night. She is a breast cancer survivor who was willing to share information about her experience with chemo. She also suggested that the need for referral and phone calls has to do with insurance requirements. She also shared that she had to cancel her first appointment with the oncologist and was not able to get another appointment for a couple of months. That gave me an insight to how busy his schedule is.

That is the reason I am requesting specific prayer that we are able to get a timely appointment. Dr. Schoenberg told us on Tuesday that "The house is not burning down" as far as the cancer is concerned. However, I feel like I am not being diligent if I let that "short in the wiring" just stay there until it does catch fire.

A Guide to Living With Bladder Cancer

Monday morning, I got a call from my financial planner (That's a joke - me not him!) He wanted to share a book written by the doctor that I was going to see at Johns Hopkins. I did not get a chance to look at it until we got to our hotel about 10:30 last night. I stayed awake until 1 a.m. devouring every page I could get through. It was the best information that I have read on bladder cancer. It answered many of my questions and gave me ideas for questions that I should ask.

One chapter that I did not read was on chemo. I did not think that would apply to me, but I can assure you that I will read it tonight.

By the way, Kelli is an awesome partner in life's adventure. She is very good to me!

The News: From Kelli

 

Well, I think I may be taking the news a bit harder than Ray; I'm not sure why.  We talked with Johns Hopkins this morning, and were very impressed with Chief of Staff, Dr. Schoenberg.  He was kind, thorough, clear and helpful.  We thought, at first and prior to reviewing any lab work or CT scans that we'd brought, that Ray might be able to have a partial bladder removal, which would only be a couple of days in the hospital.  We were overjoyed and indulgent in our excitement for about 30 - 45 minutes, before the doctor returned after viewing Ray internally, and telling us, it wasn't an option.  

We explained that Ray's tumor is larger than would have been able to be removed that way -- and it's not exactly in the right part of the bladder as he'd hoped.  We're not sure why the tumor is larger.  Had it grown since UVA?  We don't know.

The doctor then explained that Ray would need the intense massive surgery.  With such a surgery, he'd be 85% likely cured.  With adding chemotherapy before surgery, we'd be able to add an additional 5% -- as documented in medical studies.

What this means is that Ray will begin chemo ASAP.  We've called the local oncologist and they are wanting a referral, so it may be a couple of days before our first appointment (grrr...).  Ray will take chemo once a week for about 3 - 4 months.  Just as a point of honesty, chemo scares me to death.  There are a hundred horrible side effects, and I'm already trying to research ways to anticipate problems and then fend off any issues that arise.  Any chemo advice would be greatly appreciated.  I about began a return to panic attacks when I saw on the list of side effects: death.  Generally, I'm wanting to joke to keep things light as I post, but I'm deeply terrified.

Okay, back to the timeline.

So Ray will do chemo for 3 - 4 months, then contact Johns Hopkins.  At that point, they will do a quick re-examination, and then schedule him for surgery -- the same surgery of removing his bladder, prostate, a lymph nodes, then removing part of the intestine and creating a "neo-bladder."  

There are timeline consequences that have Ray and I unsure of the future as well.  This will put Ray's surgery in the summer, months past his general deadline for deciding whether or not to retire.  It would put his recovery time heading into the beginning of the school year, which means he may miss the beginning, which is an important part in setting the tone for the year with students.  Selfishly, it means that the children will not be in school and will be requiring more attention and diversions, while school routine would have allowed me to have more chunks of time to nurse Ray and offer TLC.  

Ray seems to be taking this all fairly well.  He may want to post more when he gets home from Matt's basketball practice.  I don't know if there's anything I'm forgetting.

Thanks for all your prayers today.  

Heading to Johns Hopkins today

We're leaving shortly to go to Johns Hopkins and speak with the creator of the specific type of surgery that Ray needs.  We're hoping he can let us know directly if we should schedule surgery with him, or continue on with UVA.  We're also hoping to hear from UVA with a final surgery date.  We'll hopefully be in a much better position when we return tomorrow night, knowing exactly where we'll have surgery, and when.

Surgery on January 18? Maybe

UVA called on Friday to say that they MAY be able to do the surgery on January 18. They wanted to alert me because I would also need to go to UVA this Friday for pre-operative stuff.
Of course this is great news!

I had also been looking forward to my appointment at Johns Hopkins on Tuesday. By the way, we are keeping that appointment, especially since the UVA surgery in still scheduled for March 4 at this point.

My sister Gayle got me in touch with a man who had the same surgery as mine in August. His surgeon was the same doctor who I will be seeing at John's Hopkins. He was very enthusiastic about the outcome of his surgery and the whole medical team there. He said it was very difficult at first but that he is back to work as a dance instructor after only four months. I say "only" because most of what I have read says it can take a year to retrain the new plumbing that the surgery entails. Anyway, I was feeling very good about John's Hopkins. We really like the doctor at UVA also, so I guess we will just have to see what the next few days bring.

I would like to thank everyone who is praying for us. I am sure that is the reason that UVA found a possible earlier date after telling me that March 4 was the earliest possibility.

I would also like to thank Alan and Michele Seibert who will be taking care of our boys while we go to John's Hopkins. They have extremely full lives. Alan is our superintendent of schools and Michele is a psychologist at Virginia Tech. They also have three boys of their own. We are so thankful for their act of grace to us.

I am also overwhelmed by the Facebook page that one of my students set up called "Pray for Mr. Moore." Kelli and I are being wrapped in prayer. We are thankful.

So many others have offered to help in so many ways. Once again, thanks to all.

On a totally different note, Matt had his first basketball game ever. About half of his practices were cancelled because of snow, so we weren't sure he even understood offense and defense. At the beginning of the game, he seemed lost - for about 30 seconds. Then he took over the game. He was the smallest kid out there, he was stealing the ball, dribbling through crowds, and taking shots over larger kids. Twice, he even used a spin move to drive to the basket elliciting shouts of amazement from the crowd. I think he might have a gift. Thanks for indulging a proud dad!

Love and joy,
Ray

Loop-de-Loops are Less Fun on Wooden Roller Coasters

Excuse all of my mixed metaphors, when I tell you that Math would be less of a nuisance if I always had the answers to the variables.  Figuring out what values are x and y, is precisely what I hate about the subject entirely.  Unknowns are lousy.  


Likewise, if you can bare through my analogies, wooden roller coasters are really fun when you're younger.  The older you get, the more they just beat you around and hurt your neck.  


*sigh*  Unknowns and wooden roller coaster beatings are part of the general structure of life, but I maintain that they are still NOT my favorite -- particularly when it all begins to get complicated. 


I finally make my way to the point:  Ray's surgery is scheduled for March 22, a long ways from now.  As his cancer began to make its presence known in November, the five month delay in removing it feels far too long.  We've been told via the doctor and through our research online, that ideally, you want to extract the cancer no later than 3 months from diagnosis.  Ray and I talked briefly over the phone and plan to keep the surgery as scheduled, but also keep our appointment with Johns Hopkins for Tuesday, a week from today.  We'll see if there is a chance at getting surgery sooner there.  We also will be researching another doctor, a friend of a friend, who called Ray from the Goshen Cancer Center in the mid-west to give an over-the-phone consultation of sorts.  He may also be available for the surgery sooner.  


We are so fortunate to have such wonderful Christian friends.  Mrs. Ellouise, a pilar, emailed me this morning and said: "When we face something as major as this, it is so comforting to know that nothing comes into our lives that isn't first sifted through the loving fingers of our Heavenly Father and then be able to rest in the ultimate purpose of bringing honor and glory to Him.  I pray that our Heavenly Father will give you both a supernatural measure of strength as you walk this journey.  I am thankful for all the marvelous medical technology that is available now."


Indeed.


**UPDATED** I called Johns Hopkins and the scheduling personnel said that typically they can schedule surgery 4- 8 weeks from consultation.  Best case scenario there is possibly getting Ray into surgery around the beginning of February.  We're still looking and talking, but that's the update.