More details from PET Scan

Andrea was kind enough to call and explain in great detail the results of the PET Scan and future visits.  My original diagnosis in July was Stage 4, Grade 1, B Cell, Follicular Non-Hodgkin's Lymphoma.  Yesterday's scan showed that I'm in remission.  That's a HUGE, HUGE step!

The PET Scan showed the following:

• The once football sized tumor (in my retro-peritoneal space) is now smaller than a penny.  Just as important is the scan showed "no significant hyper-metabolic activity"; meaning no cancer activity.
• The pleural effusion is still there, but "markedly decreased" and, again, no significant hyper-metabolic activity.  The measuring stick I use was the ability to carry my golf clubs up the hill during last week's warm weather without any shortness of breath.
•  The report stated the "previously noted extensive hyper-metabolic skeletal lesions involving the proximal humeri, scapulae, sternum, ribs, thoracic spine, pelvis and proximal left femur have nearly completely resolved."

Beginning January 5, I will be getting immuno-therapy every two months at Northwestern.  The goal is the immuno-therapy will, at the very least, keep these "hot spots"  from increasing in size and numbers.  Ideally we'll see these "hot spots" disappear.

I will continue several of the medications to protect me from infections.  A result of the chemo was the break down of my T Cells.  Until this is resolved, I still need to protect myself from infection.

reMISSION ACCOMPLISHED

As I was boarding the train home,  Dr. Ma called to let me know the PET scan showed the "positive results we were hoping for". I am in remission. It was difficult to talk, so I will call back tomorrow and share more details once I know.
Praise God and pray for a long remission.

No Shave November finally coming to an end

Here's my report from No Shave November:

• I wasn't a handsome man to begin with, then I lost my hair from chemo and it got worse.  If I wasn't ugly enough, I decided to take part in No Shave November for the first (and last) time.  Ugly just keeps getting uglier.
• Caroline kind of liked the mustache and goatee.  She's being kind calling them a mustache and goatee.
• Melissa didn't care how I looked since she lives 120 miles away.
• Claire was embarrassed to be seen in public with me.  She called me her chia pet. 

The purpose of No Shave November is to raise awareness and money for cancer.  I'll make my donation, shave, and bring on December.

As far as the hair on top of my head, there's something there.  I'm not sure I can call what's on my face whiskers nor can I call what's on my head hair.  I'm guessing I won't reach my goal of sporting a Man-Bun by Christmas.

Time well spent

Eastern Illinois University's Fall break was the entire week of Thanksgiving.  It was great having Melissa home for over a week.  Like most college students, she spent her time wisely.

My Best Friend Turned 55

Thanksgiving 2015

I have many, many things to be thankful for.  At the top of the list was the chance to celebrate Thanksgiving with my three girls!

My Baby Turned 18

Here are a few of the many Senior pictures she has to choose from:

The Wizard of Oz

Claire took part in her last theatrical performance of her high school career.

UNCLE HENRY

THE EMERALD CITY GUARD

PROUD DAD

ISU

Today Caroline, Claire, and I made a college visit to Illinois State University.  It was time well spent.  Claire really liked what she saw and heard at the School of Communications.  She's got some tough decisions to make.

Perfect Timing

I figure since I ended chemo last week, this would be a good time for me (and my 26 facial hairs) to take part in No Shave November.

St. Ambrose University

Last spring Claire, Caroline, and I made a college visit to St. Ambrose University in Davenport, Iowa.  We really liked what we saw.  Today we made another visit, only this time we took Melissa to help us see things through an experienced set of eyes.  SAU is still looking like a good fit for Claire.  She has already been accepted, but wants to do an over-night visit at SAU and also make a visit to Illinois State University before deciding.

And now for the rest of the news...

Since I took my last treatment on Tuesday and there shouldn't be any medical news, I figured I'd take the time to share other news.  For example:

Claire's volleyball team won the regional championship in Farmington. Congratulations to the coaching staff and all of the girls.

Tuesday night Sectionals at Knoxville.

6th out of 6

Amtrak let me down for this treatment. There were no trains between Bloomington and Chicago for two weeks because of high speed rail enhancements. I find this amusing that they want to get the train up to 110 mph just so they can stop at all of the prison towns: Pontiac, Dwight, Joliet....

I have 30 minutes left of this final treatment, then the truck ride home.

Weight: 209 lbs

This morning's blood work came back looking good.

Exit plan:

• Blood work in Eureka for the next 3 weeks.
• PET scan the 2nd week of December.  No bone marrow biopsy needed!
• Receive results  a couple of days later.
• Start immuno-therapy after New Years.  Once every two months for two years.  Amtrak, don't let me down!

Bratfest 2015

A few of the attendees of Bratfest 2015

Senior Night

It was Claire's last home volleyball game at Eureka High School.  It was a special night and probably the best game she's played.

EIU Family Weekend

Saturday, we drove to Charleston for Eastern Illinois University's Family Weekend.  Claire had to be home for a dance, so it was a quick trip.  It was great seeing Melissa and her new apartment.  Joining us was Dan & Gail, Pat & Maria, Deane & Nita, and Jamie.  I don't think anyone went home hungry.

Honored to be Honored

Over the weekend I was chosen to be the Honorary Captain at the EHS football game.  I had the privilege to speak to the team Thursday night prior to their "Real Champions" meal.  Friday night I handled the coin toss prior to the game.  We lost the toss and I therefore take the blame for losing the game.

#5

Thanks to Mike Z. for not only getting me to the train station this morning, but also picking me up from the station tonight. Treatment got a late start, so I'm going to be sprinting to catch my train.
I saw both Andrea and Dr.  Ma today. Both are very pleased with progress. Labs look good. Lungs sound good. Started talking  "exit" strategy. We'll finalize on my next treatment. My last treatment!

More Test Results

I had blood work done this morning.  Everything came back looking good, especially my creatinine level: 0.97.  That's the lowest it's been in years.

I also had a kidney scan yesterday.  It was pretty cool because I could watch it in real time.  They injected me with a lot of fluids with radioactive isotopes.  I could watch my kidneys fill with fluid and then watch the fluid leave the kidneys and fill the bladder.  I read the results and it read very positive.  I haven't heard from any of my doctors about their interpretation.  Here's what I read:

History: 56 year-old male with a history of left renal obstruction secondary to lymphoma involving the left perinephric region diagnosed in June 2015, with proximal left ureteral narrowing demonstrated on cystoscopy and ureteroscopy, followed by left 
ureteral stent placement and subsequent removal; assess relative renal perfusion and function and assess for obstruction

Comparison: CT scan of the chest, abdomen and pelvis 8/24/2015

Technique: A flow study was performed following intravenous administration of the dose. Sequential images were then obtained for 30 minutes. Time-activity curves were generated from background-corrected renal regions of interest.

The patient was injected with 40 mg of furosemide intravenously, and an additional 30 minutes of imaging was performed.
Wash-out curves were then generated from background-corrected renal regions of interest.

Findings: The flow study demonstrates minimally delayed, but symmetrical perfusion to both kidneys, which appear normal in size. Serial static images demonstrate prompt initial uptake bilaterally, with normal tubular transit time and prompt excretion 
into the bladder. There is only minimally prominent uptake of the calyces and right renal pelvis, with visualization of activity within both ureters, and with progressive partial clearance of activity from the upper collecting systems bilaterally 
throughout the remainder the baseline study. Further partial clearance is noted on an upright post-void image. Quantitative analysis demonstrates no significant asymmetry in renal function. Post-diuretic images demonstrate prompt clearance of remaining 
activity from the upper collecting systems bilaterally, with normal clearance half-times from the left and right kidneys of 9.2 minutes and 5.8 minutes, respectively. These values are valid, despite the fact that the patient was unable to tolerate the 
entire diuretic imaging sequence. There is minimal cortical activity bilaterally remaining at the conclusion of the study.

IMPRESSION: There is essentially normal renal perfusion and function bilaterally, as described above, without significant asymmetry noted. There is minimal prominence of the upper collecting systems initially, but there is no evidence of significant 
drainage impairment on either side. See above.
***Final Report***

Treatment with a twist

Since my bladder is no longer calling the shots, I decided to shake things up. Sunday I drove to Ingleside. Sorry,  Melissa, I didn't have time to stop by CHH. I spent the night at  Bob & Holly's.  Monday I went to work with Bob and met his staff. I drove into the city and spent the night at my favorite Botel.
I'm in middle of my 4th (out of 6) treatment. Dr. Ma just left. She had some good news:

• My blood work came back normal. The creatinine was 1.08.  With the stent being out, this is great! It means the kidney (s) are functioning well. Hopefully tomorrow's renal scan will prove the same. 
• The fluid drained from my lung last week came back fine. No malignancy! Even though there was a small amount of malignancy in the fluid from the first drainage, it's good to hear there is none, now. 

From today's x-ray, there was a small amount of fluid around the left lung. Bummer. Dr. Ma isn't too concerned. 

Marathon Tuesday

Thanks to Tim for getting me to the train station Tuesday morning.  Thanks to Barb for not only getting me home Tuesday night, but didn't complain as we went floor to floor getting all the procedures done.  The drive home took longer than expected.  A semi turned over on I 55 so it took over two hours to get from the hospital to the Lemont exit.
I'm not sure anyone has noticed, but the names of the people I've thanked for transportation is different each time. I'm very blessed for the family and friends that have helped us out.
I've read all of the written reports from yesterday, but hoping I can talk to Dr. Ma or Andrea to get a true interpretation.  Here's what I can tell you about yesterday:

1. 8th Floor.  They, Dr. Gillespie, his fellow (did all the work), and a nurse, drained another 1.9 Liters of fluid from around the left lung.  Barb and a medical sales rep watched.  Everyone was surprised when I told them I had no symptoms, shortness of breath, dizziness...  After the drainage, I had one symptom, sharp left sided chest pain on each deep inhalation.  The Dr. told me to expect that for a few days.  The left lung hasn't fully expanded in months and now that it is, it's crashing into the chest wall when it's been used to being "cushioned" by the fluid.  I couldn't lay flat last night so I slept in the Lazy Boy.  The chest pain isn't nearly as bad as last night, so it is improving.  Not sure where I'll sleep though.
2. 4th Floor.  Chest x-ray.  They'll compare that to a chest x-ray I'll take next week.  Hopefully it will look the same.  If the fluid returns, then another drainage.
3. 21st Floor.  Blood work.  From what I can interpret, everything is normal
4. 19th Floor.  Echo cardiogram.  Again, from what I read, everything looked normal.  If the Docs agree, then no adjustments will be made to the chemo regimen.
5. 20th Floor.  THE STENT WAS REMOVED!!!!  They were an hour late getting me back there.  The procedure took less than 2 minutes, but it was 2 minutes from Hell.  He placed his scope in my bladder, found the stent and pulled it out.  It was at this point I screamed like a (sorry, sexist comment) school girl.  He asked me if I wanted to see it and I of course said no.  I'm convinced it looked like a spiked dog collar.  Since its removal, I'm a new man.  Since I've had this in, I was warned that I would have "frequent & urgent" urination.  I'm not sure if there are adjectives that better describe my frequency and urgency.  But now... I walked around the block tonight for the first time in months!  I see golf, and mowing, and many other things I haven't done in months in my very near future.

September

Every cause has its month and every month has causes.  Guess what September is?

The Illini are not a a cause, YET.  I still have high hopes for basketball and golf.

I have extra Lymphoma car/refrigerator magnets if you're interested.

Yes, Cancer Sucks

You've probably seen the t-shirts and bumper stickers that say "Cancer Sucks".  No argument here.  I know I'm very blessed and very fortunate when it comes to my diagnosis, treatment, and prognosis.  The support from my family and friends has been out of this world.  Insurance has made this stressful time much easier.  Regardless, Cancer Sucks!

Without going into great detail, my family's cancer history was/is pretty scary.  With that knowledge, I've made several decisions.  I don't drink.  I don't smoke.  My diet has improved with time.  I exercise 3-5 times per week.  I stick with my annual physicals.  Monthly self-exams.  Routine colonoscopies. I wear sun screen and broad rim hat when I golf and mow.

You might attempt to read between the lines and come to the conclusion that I'm suggesting that if you're going to get cancer, you're going to get cancer; so go ahead and enjoy life's pleasures. On the contrary.  Do everything you can to avoid this despicable disease!

Lots and lots of good news

Thanks to Ty for getting me to the train station on Monday. As always, thanks to Bo for a place to stay. Thanks to Danny for getting me home, today.

I've started round 3 of 6. This round is supposed to go a little quicker, 4 to 4 1/2 hours.

• My blood work came back looking good. Red, white, and platelets were good. Kidney numbers were good, too. 
• Yesterday's CT scan was good. The fluid around my right lung is gone. The fluid around my left lung is still there, but "significantly" less. At my next visit, if it's still there, they're going to go ahead and drain it. My left kidney is back to normal size.  That news and the news of the good blood work, the stent will likely be removed on September 8th instead of November 6th. The size of the tumor has shrunk significantly! The day before I started my first round, the tumor was the size of a football. Today, after two rounds, the tumor is smaller than a baseball. 
• I met with Dr Ma and she is very pleased with the response, especially since it's only been two rounds. 

CT Scan Scheduled

A CT scan has been scheduled on 8/24, the day before my 3rd scheduled treatment.  The purpose of the scan is:

• Check the size of the tumor
• Check the amount of fluid left on the lung(s)
• Check the kidney function. My blood work shows very good kidney function. If the scan shows the same, then a discussion will be had to remove the stent sooner rather than later. 

...gone tomorrow

Look for our house on the next Swiffer commercial.

Round 2

I'm about finished with the second round of chemo. I came up yesterday by train.  Spent the night at Bo's. (If she ever started charging rent, she could own her boat instead of leasing it.) Mary Lou is here and will be taking me home.

Four more to go!

Blood work came back looking very good.

Hair today...

My hair started falling out yesterday big time. So today, I got my boyhood haircut otherwise known as the "West Point".

Urologist

Thanks to Ed, I got to my appointment today at NMH.  The urologist asked a few questions, answered a few questions, and scheduled a time to remove/change the stent.  That will be done November 6 as an out patient procedure.

Also had blood work done.  All the important numbers came back normal.

I'm heading up Monday by train for a Tuesday morning treatment.

Two diets I do NOT recommend

On June 1st I weighed 215 lbs.  When I was admitted on July 10th I weighed 205 lbs.  That was my Stress and Anxiety Diet.
My two week No-fat Diet ended last night.  This morning I weighed 187 lbs..  Thank goodness that's over.  My in-house nutritionist suggests I slowly reintroduce fat back into my diet.  I shouldn't have any problems eating pizza and chocolate chip cookies slowly.

Weekly Tests

Twice a week I'll be getting my blood tested. The two things they're monitoring are my kidney function and blood cell counts.  My kidney function looks good. My red cell and platelet counts look good.  My white cell counts are low.  I'm told this is not unusual at this stage in the chemo cycle.  I'm being put on antibiotics and being told to keep my distance from the possibility of infection.

Many, Many Thank You's

Now that I'm home and feeling pretty decent, I have many to thank:

• My family, friends, co-workers, community, and even strangers
• Thank you all for your acts of kindness.  Kind thoughts, words, cards, notes, and especially your prayers.  Even the cookies; they'll be etched in my memory since I'm currently on a two week no fat diet.
• Special thanks to:
• Karen and Craig who have done EVERYTHING
• Bob and Cindy for getting us out of the house when we needed to get out of the house
• Mike Z. for his many visits
• Barb and Dan for their shuttle service
• Danny for his timely visits and shuttle service
• Aaron for keeping the seat of my Cub Cadet warm until I'm able to ride again
• Bob and Holly for their hospital visit.  They came during my first treatment and it was good to have my mind on other things.
• Brianna for her surprise visit and special gift from the Vatican
• Elizabo! It's amazing the generosity she provides for me and my girls.
• Lisa, continue to help keep Caroline's chin up
• Melissa & Claire
• Missed a Florida vacation because of this
• Missed Melissa's Birthday
• Missed Claire's volleyball game
• I can't tell you how patient, understanding, and cooperative they've been and thankful for them
• YWABMLG
• YAMSEAN
• Caroline
• What can I say? She's my rock and this family's glue
• Northwestern Memorial Hospital
• What a remarkable place.  The staff is remarkable.  I left feeling much better, with hope, optimism, and less fear.  We were sent to the right place.
• God
• I've known too many cancer patients that had to choose between treatment and quality of life.  Some that weren't even given a choice.  I thank God I've been given the chance to treat with a very good chance for a positive outcome.

HOME!

 The best medicine I've received all week.

The day after

The foley is out.  The kidney functions are good. Only a few side effects so far. Looking forward to being home tomorrow night.

Cycle one complete

I finished the first cycle about 30 minutes after midnight with no problems...so far.
Wednesday the foley comes out and I need to relearn how to pee. They'll want me up and around without oxygen. They're also going to monitors kidney functions. If all goes well then maybe a Thursday discharge!

And so it begins

After nearly 7 weeks of Dr's visits, consults, tests, and procedures; R-CHOP has begun.

Happy Birthday

YWABMLG

What a day

I was in the OR by 7:30. They placed a stent in the ureter between my left kidney and the bladder.  There was defenitly blockage. The stent will remain in for 3 months. I also got a foley. It will remain in for 48 hours. That should cut down on my nightly trips for a couple of days.

I also had a chest xray, an echo-cardiogram and yes, a bone marrow biopsy.

Treatment plans have changed. The team sees no evidence of this being aggressive, but agrees the treatment should be: R-CHOP (look it up) Stronger side effects, only 1 day treatment every 3 weeks for 6 cycles.

Tomorrow, back to the OR for a dual port, then hopefully a treatment.

More

The last time I was hospitalized was in the mid 1960's.  I'd like to wait another 50 years before the next.
They removed 2 liters of fluid from around my left lung. It's off to pathology. I feel like a new person. Maybe I WILL golf in the Hornet Open on Monday.
They also did a sonogram on my testicles (and found no problems) and took another chest xray. I'll be getting another CT scan soon.   An electro cardiogram is also in my near future. They will also scope my left kidney since it is being compromised by the tumor. For that reason they'll likely keep me through the end of next week so they can monitor my kidney output during the first chemo treatment since that is how the dead cancer cells will leave the body.

Long Day

I had the PET scan today. Showed two things. First, the amount of fluid around my left lung has increased. Because of this, I've been admitted. I had to go through the ER to get admitted. A Chicago ER is nothing like I've ever seen. The second thing found are some "hot spots" in several lymph nodes and in the bone. The lack of "brightness" in these spots suggests they are low grade NHL. Treatment plan not changed.

The short term plan is:
Have the fluid drained tomorrow.
Be observed Sunday.
Bone marrow biopsy Monday.
Hoping to start the first two day treatment on Monday or Tuesday.
Out of the hospital and home after that.

We're all a little scared but hope your prayers will lift us up.

NMH is confirming the diagnosis of a low grade Follicular NHL.  We've scheduled a couple more tests to rule out other surprises: a PET scan and a bone marrow biopsy.  Once the PET scan is done they can hopefully get me started on a steroid with the hopes of shrinking the tumor that is compromising my left lung.  I'm still impressed with the attention I'm getting from Dr. Ma and Andrea.

Happy 4th

Uncle Sam rides again.  20 years and counting.

Golf

I've been asked several times about my golf game. When I first met with my local oncologist a couple of weeks ago, he told me to stop playing. He said the torque would be risky. He said I could chip and putt, though. That was great news since I couldn't chip and putt before. I asked the oncologist yesterday. She said I could golf as long as it didn't hurt. Obviously she has never seen me golf.

Northwestern Memorial Hospital was an impressive place.  I wasn't sure at first.  The place is huge and I felt like livestock getting around.  Once we got back to the examination room, that changed.  Dr. Ma and Andrea, her ANP, took their time and answered all of our questions.  We have a pretty good idea of the plan of attack.  The only thing we're waiting on is NMH to review the pathology results.  The pathology results will determine which "flavor" of chemo to use.  I have my first treatment (cycle) scheduled for the middle of July.  Each cycle will consist of a two day treatment.  The first day will be chemo and immuno-therapy.  The second day, just chemo, then a month break before the next cycle.  They're talking about 6 cycles depending on how things look after the CT scan after the 3rd cycle.  Right now, we're planning on the first 3 cycles being done at NMH.  The next 3 might be done locally.  I'll be having a PET scan done locally soon.

Sitting in the waiting room of a cancer center can be a humbling experience.

Meeting with Dr. Shuo Ma of Robert H Lurie Comprehensive Cancer Center this week.

NHL is taking on a whole new meaning.

We're waiting to hear from Northwestern Memorial Hospital.  We are to meet with their Lymphoma Team.  The first thing I'm going to ask is "Isn't there a better name for your team?"