The South

For those of you following my NHL Adventure, we buttoned up shop, sold most of our goods and the farm/business in Lowell, Mi and are now settling in near West Palm Beach in Wellington, Florida.

I'm currently on the hunt for a new Onc as I'm scheduled for another CT Scan in December which will mark year 3 since diagnosis. No troubles to report at all and my decidedly unoriginal LIVESTRONG band will continue to grace my wrist until I'm declared "clean."

Although there is some discussion about when/if NHL folks can indeed be "cured", my mental mark is 5 years from April '09. As the months roll on, I still wonder about the long-term affects of so much radiation with the ongoing scans. I allowed the allopathic method to handle the crisis and have taken a more osteopathic approach on my own which hopefully bolsters the treatment so that I may usher this hiccup into the history books. Yes. No treatment would be the best scenario.

Filling out the paperwork for the new onc has made me relive the parts of chemo process and to marvel at how difficult it is to remember dates and specifics.

This blog will continue to remind me of those things I am thankfully forgetting.

<< Grin>>

Another visit

The summer started off full of relapse anxiety and has now tapered to a calm cicada buzz. I completed yet another round of CT Scan and review with the Onc.

All is well. He stated that the nodes have had no changes and the reviewers did note a small spot on my liver that they attributed to a glitch or a small fatty deposit. I've come to the conclusion that after you have been scanned as many times as I have in the past three years, you are bound to find some nuances.

On another note, my painful left shoulder has me at wits end. After a few weeks of PT, that only served to aggravate the joint, I paid a visit to a new joint Dr. recruited from the Atlanta area. Seems like a decent dude and he ordered up an MRI.

Had the MRI on Monday which served as another adventure in medical procedures. My CT Scans are remarkably quick. I'm usually walking out 10 minutes past my appointment time. After quite a delay in the waiting area with other vocally irate patients, a lead covered nurse brought me to the "numbing room" where I put on a gown and a radiologist used a low frequency xray to properly insert a needle into my glenohumeral joint. These two stay in the room while the xray is rolling which is a little strange but their lead lined clothing and throat shrouds bring out a wonderful sci-fi thrill. The needle was also used to inject contrast directly into the labrum. Although locally numb, the radiologist said, "this will feel like a little bee sting" to which I thought, "What? Bee Stings hurt!" During the burning and anticipated pain, I could still hear the needle squeak into place and relieve the dull pain I have felt for months.

After staring at the needle sticking out of my shoulder for several minutes, I was deemed ready and the needle was withdrawn. I gathered up my belongings and headed down the corridors to the MRI room. Incidentally, this was right across the hallway from one of my mother's office spaces while serving as an infection control nurse for years at Blodgett; a crazy flashback.
The MRI attendants didn't provide much detail about what was to happen. They strapped on a support to keep my shoulder stationary and sent me into the tube with a set of can headphones playing pop music. Although I wasn't claustrophobic, the space was very tight. I tired to relax and started to nod off. Unfortunately, the hypnic jerks paid a visit and we had to keep redoing the long scans because I moved. The timeframe of the scans was not explained and I had several 5 and 2.5 minutes scans which doesn't seem alarming but I was attempting to take shallow breaths until it became necessary to breathe a little deeper. They would interrupt the sappy beat with a crackle, "please try not to move. We need to do that one again..." or "it's important that you stay very still Paul." When they finally hauled me out, they asked if I would go back in with the left arm over my head for two, 5 min scans. Nada. Hurt to even attempt the position let alone 10-15 minutes worth.
Three hours later I walked out of the hospital with a numb shoulder and lots of catch-up to play. Still awaiting results...

The Next Best Thing to NED

Inconclusive.
Laurie and I joked about this response from the Onc while reviewing how we would react to the PET results. What if he says, "The results are inconclusive". That's rich.
Although the radiologist indicated a very small uptake in one of my abdominal nodes, it is currently too small to biopsy and could be a false positive on the PET.
Overall, the sites of enlargement from my Spring scans have reduced in size which is a great sign.

So, where does this leave our hero?

They scheduled yet another CT scan for late August and we will go from there. The Onc said that he would have expected to see more site involvement if I was truly relapsed and that we just need to take a "wait and see" attitude for now.
I believe the kids call this, "dodging a bullet."

PET CT Scan

I learned last week that the PET scan is actually two scans in one tube. The process involves yet another CT scan and the PET portion is attached to the CT; extending the tube about 36". In preparation, I was instructed to follow a strict protein diet 24 hrs before the scan. Those of you who have been following my Primal exploits will understand that this was a breeze. Additionally, I was only allowed water 6 hrs prior to the scan.

The PET scan involves starving the body of sugar (glucose). They introduce a radioactive, fluorescent glucose solution which any highly active cancer cells immediately draw on for fuel. This consolidation of glucose is then caught with the PET scan using 3D triangulation to determine if you have relapsed.

I arrived at the LHCP with a couple of books, a mix CD with several cuts from the Beach Boys "Pet Sounds"(see previous post) and a few CDs just in case the mix disc wouldn't play. I was escorted to a private waiting room(see image) where Todd, my concierge, explained absolutely everything to me. He wears a radiation ring and a radiation badge that is sent in every month in order to track the amounts of radiation to which he is exposed. This tracks lifetime accumulations and at some level, you may need to find another line of work but so far, his levels are negligible thanks to the protocols they follow. Since this is also a CT scan, he had me drink an alternative to the BS solution I have blogged about previously. This step was much less involved than the normal consumption expectations and he started an IV line that would usher in saline, the radioactive glucose and the contrast solution. Todd also made me aware that during the scan they would play any of my CDs or they had access to satellite radio. He was a DJ while in college in Iowa and suggested the station FirstWave. Recommendations of books and music are always a welcome surprise and keep me out of my comfort zone.

Todd also brought in a small lead toolbox containing the glucose. The actual syringe is housed within a thick, tungsten cylinder with the plunger sticking out one side and the IV connection on the other. Todd explained that this cylinder is very difficult to construct due to the material properties of tungsten. This is Iron Man territory.

Todd tested my glucose level (78...ahem, thank you Primal) and injected the glucose. Now I wait for 90 minutes for the glucose to properly steep. Todd offered me a selection of movies, TV, music or a laptop. Laptop? 90 minutes to browse the Web was an ideal way to dwindle away the time.

What seemed like moments later, I was escorted to the scanner (see photo) and asked to relieve myself of any extraneous radioactive glucose (to pee). I then removed all my metal and climbed into the scanner. BTW, this is only one of four in Michigan plus another 2 portable machines. Apparently there were more portable companies traveling to rural areas of Michigan but their business models collapsed with the ridiculous price of fuel so only two portable PET machines survive.

They had me hold my arms above my head the whole scan which didn't bode well for the shoulder but I survived. They then added contrast to the IV and that old familiar metallic heat spread through my chest, neck and face. As I entered the tube, FirstWave thumped out the Clash's "I Fought the Law". The scan took about 20 minutes and as I exited the tube the Pretenders "Don't Get me Wrong" faded from the speakers. I was led back to the room to collect my things and was greeted with a hospitality cart filled with everything I don't eat (see waiting room photo). Damn you Primal.

Results should be ready on Weds during my Noon appt with the Onc. This is a big one.

Three Yawps for Science

After visiting with the Onc last week, he felt NO external issues (looking for swollen nodes in all the typical locations, even in my guts) and said it would be OK to bump up the CT Scan if I wanted to as the changes would be as apparent now as they would be in 3 weeks.

As we exited, the receptionist noted my new insurance carrier and that we most likely would be able to scan at LHCP as opposed to my normal routine at Spectrum across the street. She asked if I could come back down in a few hours due to an opening at 1pm. I agreed to the appointment in order to get the results sooner. I had to immediately drink a bottle of the much blogged Barium Sulfate and take a bottle home to consume an hour before the scan. I came back downtown and was out of there within 15mins. Multiple jabs were not required as my veins acquiesced but the IV contrast was much warmer this time around. A polite "good luck" from the tech and I was on my way.

I called the Onc on Tuesday to see if they had results yet and didn't hear back. Wednesday morning I checked my voicemail and the Onc had called late to say we should, "catch up tomorrow". The last time I rec'd a call from the Onc he had nothing but good news so a mysterious lack of info sent a shock wave through me.

I had a PT appointment for my lingering shoulder pain so the whole drive was nauseating while Diane Rehm's firm, quivering reparte tried to distract me. I felt like I was floating in a quiet, thick, "what the hell" miasma.

After arriving back home, I called the Onc's office and was told someone would get back to me right away. Laur came in for some lunch and asked if I had heard anything and I relayed the Onc's message from last night. She turned a little pale and had to sit down. As we were discussing all the potential scenarios, the phone rang and the callerID listed, "CANCER AN". I answered with confidence and a nurse explained that there was "minimal enlargement indicated in the scan" they would like to schedule a PET Scan.

This should be a positive next step as the CT Scans are not able to determine if the enlargement is due to relapse or just normal fluctuation. Keep in mind that in 2005, I had the whole lymph node chain removed from the left side of my neck after an inconclusive needle biopsy found unusual cells; forensics proved the nodes to be benign. The PET will actually highlight overly active cells (cancer cells) in my body using a fluorescent glucose mixture. If it turns out that there are dark spots in some of the lymph nodes, then I suspect that we successfully caught the relapse early and start a plan of attack. If there are no spots, then we might conclude that the enlarged nodes are nothing more than my "cured" body back to normal function.

Hopefully the new insurance company will see the logic in this step and agree to pay for the scan.

Should have the scheduled scan date this week. It takes 3-4 weeks to get a scan appointment.

Prednisone

Although my shoulders have been taking a beating from 12 solid months of pull-ups and push-ups to compliment primal changes in my lifestyle, I typically just take a few days off and the pain goes away. About 6 weeks ago, my left shoulder started complaining a lot. I mentioned this to Laur more than a few times until she finally recommended that I go in for a massage to see if that would help. My last and initial massage adventure was undertaken during a vacation to St. Thomas. A couple of days snorkeling without adequate protection left my back aflame. Let's just say the lidocaine they used prior to the massage did little to comfort my burning skin which afterward felt raw...but I digress. The massage was great and when the masseuse worked on the tendons around my shoulder I buckled under the pain. She thought it seemed more tendonitis related than any cuff tearing but suggested that I see my GP just to make sure.
Made an appointment with the GP and he ordered an x-ray just to see if it was something minor or major. He also prescribed a steroid to reduce the inflammation. They called a few days later and told me that it appears I have a little arthritis to contend with and we will see how the steroid and some physical therapy might alleviate the pain. It was welcome news considering the day-mares I had been conjuring about metastasizing cells.
I made time to cruise by the neighborhood pharmacy only to find that the steroid was my nemesis, P...Prednisone. I've waxed on about my feelings towards this little pill in previous posts during lymphemo. Those who have been following my little cancer tribulation will undoubtedly wonder how might this impact any potential lymph node flare ups I may be experiencing. I would imagine that this short course would reduce any swelling in my system and might mask a new occurrence.
Well, I have an appointment this week with my Onc. Although I wasn't scheduled until the end of the month, some slight pings of pain in my chest along with a not-quite-so-clean CT scan a few weeks ago have me in the YELLOW.
Anyway, P is still bitter and tough to swallow. Hopefully this is just a blip and I regain a relatively pain-free glenohumeral joint.

Setback?

Paid a visit to the Onc today as a follow-up to last weeks CT scan. Laurie had an appointment this morning and the plan was to meet me there. When she took off in the truck, she noticed that it didn't feel right. Her return to the barn revealed a complete flat. Trusty Nick agreed to change the tire and make sure the spare had enough air but this put me 20 minutes behind schedule. I was doing a lot of active meditation on the drive downtown as I know how late patients can wreak havoc on an office.
Checked in, started filling out the "wellness" form, gave my blood sample and completed the form only to have my name called right away; less than 5 minutes. Weighed in, BP was 132/82 and temp was normal.
The Onc entered the room and asked how I was feeling and said there was some enlargement in the mesenteric lymph system around my intestines but that the enlargement was not cause for alarm. This was a change from my last scan so we will need to schedule another scan in 2 mos for a comparison.
Needless to say, I was a bit bummed as this 2 year appointment marks a crucial milepost in the success of the treatment.
I have been worried about all the CT scans as I cannot imagine that the excessive radiation exposure is good for anybody but the other side of the coin is uncertainty. My intuition tells me that catching this sooner than later is a better strategy. We can deal with the radiation issues later...it didn't work out so bad for Spiderman.
So...here's hoping that 8 weeks from now we discover this was a normal fluctuation and the enlargement was just a temporary reaction to some other invasion.
Knock knock.

We meet again old friend

Yesterday I had a CT Scan that will mark the two year anniversary of my chemotherapy treatment for NHL. I will meet with the Onc in a week to hear the results.

I was hoping to include a picture here of the scanner but my cell camera apparently didn't get the message to "take" the picture. Maybe, just maybe, I'll never see that machine again.

I spoke to our local holistic doc and asked about the effects of all these CT scans on my system. He suggested that I take a supplement called "Methyl-B" which essentially consists of three folates that purportedly rebuild DNA that is broken down during the scanning process. So I've now added that to a list of daily vitamins I now take:

• Methyl-B - 800mcg
• CoQ10 - 100mg
• Magnesium - 400 mg (vivid dreams on this stuff)
• D3 - 6000 iu (until the sun is more plentiful)
• Omega 3 Fish Oil - 3000 mg
• Centrum

Still eating Primally and the rest of the family has jumped on board with crazy results. Sage is the lone hold-out but when I cook steaks and spaghetti squash, he eats it...he is getting benefits without fully embracing the theory. Summer, Sage and Laurie are all more consistently physically active with lacrosse, track and riding respectively but I am still churning out body weight activities between calls and my weight has really evened out after losing over 50lbs.

My total cholesterol numbers in my bloodwork is still a challenge based on conventional wisdom due to my eating habits but my ratios are quite good. Make sure you do proper research on your numbers before agreeing to take statins. Total calculated cholesterol will be the next sham.

All in all, I feel great and warmer weather is more than welcome.