Thursday, December 10, 2009
To be perfectly honest, I had been mentally composing a "Lather, Rinse, Repeat" blog entry for the past two weeks. My chest hurts, pains sparking on the left and right sides of my abdomen and my cough is getting old. The Onc appointment today was just a formality to confirm what I already knew, relapse. I have been trying to keep a brave face for Laurie and the kids, often waking early in the morning to roll around and fret about my next round of chemo. Today couldn't come soon enough to relieve me of my stress; at least I would know.
Interestingly enough, a blizzard kicked in so driving to LHCP was exactly like last year, treacherous. We left early to make sure we were on time and fought our way down the freeway with everyone driving very cautiously. After sign-in, they immediately called my name for a blood draw. The phlebotomists are still having some difficulty finding veins. She poked me only to have the vein roll away. She queried, "How's the weather holding up?" while tipping the needle around under my skin trying to snare the slippery tube. Blood finally shot up the tube and we were in business. I filled out the "How are you feeling today?" paperwork and they called me back. The dreaded weigh-in, gained 4 lbs and high BP (145/93). Wouldn't anyone's blood pressure elevate given the possibility of relapse? Deep breath.
In the waiting room, Laurie and I have a laugh about this and that until my Onc enters the room. OK, don't mince words, let's have it...
"CT was clean as a whistle." Huh? Are you sure you have the right results? No Evidence of Disease (NED). What? 100 lbs lifted from my shoulders and suddenly I am in a different world. I'm still cancer free. Yeah baby Yeah!
He did the normal groping for swollen nodes, nothing. Lungs sound clear. I asked several questions about my mental state and the pain which can all be attributed to my Thanksgiving cold. The Onc explained that my lymphoma will take several weeks to present symptoms so I should just relax and only get uptight if strong symptoms arrive (night sweats, fever, extreme malaise, swollen nodes, etc.) but otherwise, enjoy a chemo free Xmas. I will.
"Lose some weight, buy a BP cuff for home use and monitor it for a while. Keep up the good work. See you in 3mos."
Thursday, December 3, 2009
Tuesday night I was instructed once again to figure out a way to drink another dose of Barium Sulfate. They have a new fangled bottle shape and have tried to mask the chalky taste with an artificial orange cream flavoring. Forever the food tinkerer, I decided to try a frostier approach. I left the bottle in the freezer a little too long forcing me to churn it with a spoon to dislodge the icy chunks from the sides of the container. Instead of chalk, the slushy substance was chock full of ice flakes and olive-sized blobs.
The next morning, for the second bottle, I opted for the straight approach. Guzzled half the bottle and set the rest aside for a little pre-scan refreshment.
I should also mention that I started coughing late on Saturday and should have secured a power dose of Echinacea but a warm bed and sleep seemed prudent. The cold took its usual course but I can't help being reminded of my respiratory condition at exactly this time last year. Saturday (12/5) signals the one year anniversary of my foray into NHL.
The scan was uneventful. Normal niceties with the Tech and a brief synopsis of my journey followed by the ritual stabbing of the needle and subsequent introduction of another 120 mL of contrast and saline. That wonderful internal heat wakes your mouth, chest and then your loins. The CT machine began to accelerate as I was inserted into the "donut." Several "hold your breaths" and in-n-outs later, I'm back on my feet as contrast odor begins emanating from my pores.
My Onc visit is next Wednesday and I really hope that I do not hear from them until that time. If the caller ID displays "Cancer and Hemat" anytime before next week, I will panic slightly. Repeat after me, "NED...NED...NED."
So now I wait.
Tuesday, October 27, 2009
So despite a few coughs and some passing bouts of suspicious pain, I seem to be getting back to a normal state. I've managed to abstain from processed sugar since early June; eating lots of fruit which is easy in Michigan during the summer. My cancer well-fit class from July thru September was just what I needed to get moving again and wake up some dormant muscle fibers. The basement weights are once again thumping and clanging a few times each week. All in all, things are coming along.
We scheduled another CT scan for the first week in December unless I want to do it sooner to ease the aforementioned anxiety. Stay healthy.
Saturday, September 12, 2009
The second annual “Pink Arrow” football game occurred last night.
Quick brief: My children attend Lowell Schools whose mascot is the Red Arrows. In 2008, the football coach decided to create a game dedicated to those fighting cancer, survivors and those who lost their battles. The football players wore pink jerseys with names on the back to honor friends or family members. Attendees were encouraged to purchase pink game t-shirts as a donation to support cancer charities. It was a great success earning over $90k.
The second annual event was bigger. The tennis teams, cross country team and volleyball teams joined in the festivities. My daughter plays volleyball and they constructed an outdoor court at one end of the field to play prior to the game. Summer asked me to show up for a special seat only to find that between games they honored a few cancer survivors with a small pink and white volleyball signed by all the players. After the game, Summer was interviewed by the Grand Rapids Press…
“An estimated 3,000 fans watched Michigan's first outdoor high school volleyball match. The Pink Arrows swept Forest Hills Northern in three games played on a court set up in the high jump area at the north end of Bob Perry Field.
The volleyball match, which was sanctioned by the MHSAA, was particularly significant for Lowell junior Summer Moore. Not only did Moore, a backup setter, see her first action of the season, she played in front of her father, 44-year-old cancer survivor Paul Moore.
Moore was diagnosed with non-Hodgkins Lymphoma before Christmas last year and began chemotherapy the day after Christmas.
"He always stayed positive through the whole thing," Summer Moore said. "At the end of May and beginning of May, he was in remission, and he is doing better now. To have a parent go through this, and then to play in something like this, with him here is amazing.
"Ever since I was young, he got me involved in a lot of sports. Playing here today I am supporting him. I feel like I am giving something back to him."
Paul Moore's final two scans have been clear.
"So far so good," he said. "I had my last chemo in May and my hair started to grow back. The whole thing that Lowell is doing is something special, and the girls playing volleyball outside today was special."
Read the entire article here: Pink Arrows 2009
I was trying to think of something clever to say but there was so much happening that I felt humbled by the madness; emotions welling up, thousands of people, pink everywhere, lots of encouraging words.
I look forward to hearing the final $$ tally as there are plans to create a Gilda’s Club in Lowell.
Thursday, July 23, 2009
Last weeks scan results are in and there are no changes from the April ‘09 scan. Although I still am experiencing little transitory ”sparks” of pain in my chest and abdomen, the computed axial tomography doesn’t lie. I’m still remitting.
I’m also back to being muscle sore thanks to the fine folks at East Hills Athletic Club. My Cancer WellFit class is a little slow for me as we are still reviewing the machines and their various settings. After class, I typically toss the iron around and then run/climb/row to nowhere until I’m breathless and sopped. Good times.
I’ll try to get some new paintings posted soon.
Thursday, July 16, 2009
Having said that, this week has generated some lymphoma related activity.
On Tuesday, I met with the Onc for my first follow up. The appointment was moved up from early August because I was unsure what aches and pains should be a concern and what I should look for as a warning sign. They performed a blood draw and my veins are still shot; "thin and deep." Despite this fact, the phlebotomist stabbed into my inner arm at an unusually steep angle to reach pay dirt. The bruise is about the size of a 10p nail head. Here's a downer: I have sworn off processed sugar for the last 5 weeks. After the initial cravings, it's surprisingly easy to avoid. Lots of fruit has replaced the sugar that I was convinced was making chemo bearable. I jumped on the scale anticipating a stunning loss only to be mocked by a 2lb drop. TWO pounds! Ridiculous. I've been hitting the free weights again so that might account for some imbalance but good grief, that's discouraging. On the bright side, my BP was a respectable 118/78.
The Onc said the blood work and chemistry look better than normal and that all my little aches and pains are common. Most likely accentuated by a heightened sense of self given the past several months. In order to give me some peace, he thought that a CT scan was in order.
Wednesday evening signaled the first night of my Cancer WellFit course. For 10 weeks, I have access to a health club and a personal trainer who will help me fashion a proper program for my recovering coil. Laurie is also invited as my "Supporter" to help me stay motivated. It will be a symbiotic motivation given Laurie's unpredictable schedule. After riding several horses and teaching all day, the idea of driving to a building to push weight around or walk/climb in place seems irrational but she's game. We performed some basic balance and strength tests to create a baseline and hope to see some improvement in a couple of months. Later that evening, I had to mentally prepare myself for the first of two bottles of Barium Sulfate in preparation for my morning CT scan.
This morning I popped out of bed at 6am to choke down another half bottle of BS and headed off for the scan. After entering the room, I warned the technician that veins were going to be hard to come by so she fingered around my inner left elbow and said, "I think we need to try your hand." Oh boy. See my port removal entry for me thoughts on hand pokes; it stings. She rooted around with the needle under my skin for several minutes muttering and sighing until she finally gave up while apologizing for the unnecessary pain. "The veins kept rolling away from the needle." She moved to the right arm and found a thumper just below my blood draw bruise. I had visions of my arm filling up like a contrast water balloon but that old metallic taste filled my mouth and that crazy heat ran through my body signalling a successful poke.
I should have the results in a week but anticipate no problems.
Friday, June 19, 2009
First, I need to thank my family for being brave. I have a tendency to lace most circumstances with humor in order to take the edge off. The kids continued to excel academically and in their afterschool activities despite the gloom which made me feel better. Laurie proved once again that I had terrific foresight when we met in high school. She has been the best partner in this journey and I will never find enough words to express my gratitude and love for her; "in sickness and in health".
Early on, Gay stepped in and offered to organize meals for us; 3 days a week. This was the best strategy for everyone who wanted to help us. Laurie's brother, Dave, assisted with the calendar app and everyone below deserves my gratitude:
Betty Jo C. (for including the kids)
Deb C. and Family (for ad hoc shopping too)
Laura & Don F. and Family (for meals and sisterly concern)
Greg & Kristen and Family (for meals and brotherly concern)
Lynda & Bill C
Pam & Don W and Family
Myra & Tina
Sue C & Family (Sage's home away from home)
Connie & Jim O
Elaine M & Family
Special thanks to my parents who graced me every Weds with housework, laundry, great comfort food and good humor. I'm lucky to have such wonderful role models.
In January, we spoke to a cancer researcher who emphasized that I make sure to get a lot of calories and I took full advantage. I'm paying for it now as the lbs seem to come off slower than I packed them on but I'm working on this.
After I was diagnosed, we overhauled the house between Xmas and New Year's day with the help of my extended family. The wood floors have made a huge difference in our ability to keep the house tidier.
Dave M (for figuring out how to cut the curve)
David M (for visiting at the right time) & Oliver (for entertainment with pop tunes)
Lionel & Annie R and Family (for ongoing support)
Carla MG (for motherly support & C advice)
Whitney & Todd
Ally Y & Dana C (Summer's friends)
I have also received gifts from friends and family including:
Schwinn Johnny G Spinner bike from Julie B.
Dreambook by Mark di Suvero - signed no less :)
New Yorker magazines from grandpa Carl G
Miracle Berries from Gabi H.
Several art books and catalogs from Heidi H.
The Four Agreements and an inspirational DVD from Kamila D
The Shack and The Secret from Elaine M
Several books(Sanibel Flats, Empires of Sand, A Dirty Job) from Connie O
and the continued comments from Friends and Family on this blog. It's entertaining to read your responses to my entries. Many thanks.
Wednesday, June 10, 2009
Despite that, this week I celebrate my son's 12th birthday and prepare for my daughter's graduation party. The time off allowed me to add two more additions to my horse series...
Thursday, May 21, 2009
My Onc said that I could schedule my port removal at any time as he didn't think I would be needing it soon. Although it was nice to have during chemo, the claims about using it for the blood draws never panned out because a nurse is required to perform the draw if you have it done through the port. I was willing to put up with the little pokes in my arm every three weeks as I really wanted to get out quickly. If you wait for a nurse, you have no way to gauge the time required.
The port is placed just under the skin on top of the muscle. The little tube is fed upwards over the collarbone and into the jugular vein.
Before: If you pop open the image you may be able to see the tube just under my skin.
The removal was scheduled to occur at the LHCP and once again, checking in was a cinch. LHCP really have their act together. I changed into the standard issue surgery gear and hoped they would be able to find a vein for the blood draw. No problems, blood draw went off without a hitch even though the vein was tough to locate. The prep nurse entered again and explained that she would have to poke me for the IV. We discussed the fact that my veins were getting harder to find and we decided to try the back of my hand.
From my cell phone…I know, not so flattering. Laurie tells me that my frames mask the lack of eyebrow hair. I also look very swollen.
Anyway, you can see the IV line and I must say, despite the prep nurse warning me that the back of the hand is more sensitive than the inner elbow, the pain from this poke ranked up there with the bone marrow sample only it didn’t last as long. Felt like a long bee sting so I wouldn’t recommend this to anyone. The site still smarts two days later. Although they used conscious sedation during the surgery, I took advantage of the legal high and drifted off blissfully. There was only one incision so I questioned how they pulled the line from my jugular vein without a spectacular internal bleeding event. Apparently direct pressure for a short period gives the jugular vein enough time to self heal. Pretty cool.
So here is the aftermath so far:
and the best part: They let me take the port home as a trophy:
I keep it in a plastic sample jar …it smells a little like rotten meat.
My lower left leg blew up a little yesterday afternoon and I have been feeling some pain along the inside of my knee. I called LHCP just before 5pm to see if I should be worried and they suggested that I go to ER in case I may have developed a blood clot. I had been experiencing this edema since the Fall before my diagnosis so an evening in the ER only to have them say, “lay off the salt for a few days,” wasn’t on my shortlist so I’m monitoring the situation today. I know, I know…when did I get my medical license?
Still waiting for the Cancer WellFit course to start.
Next up, more healing.
Tuesday, May 5, 2009
It is odd to be in this position because it is good news to know that NHL is temporarily taken a hiatus, but the thought of it coming back and haunting me any time soon is taking a bit of the joy out of today's discovery.
Whenever I'm faced with odds like these, I pull a scene from Dumb and Dumber between Lloyd Christmas and Mary Swanson:
Lloyd: What do you think the chances are of a guy like you and a girl like me... ending up together?
Mary: Well, Lloyd, that's difficult to say. I mean, we don't really...
Lloyd: Hit me with it! Just give it to me straight! I came a long way just to see you, Mary. The least you can do is level with me. What are my chances?
Mary: Not good.
Lloyd: You mean, not good like one out of a hundred?
Mary: I'd say more like one out of a million. [pause]
Lloyd: So you're telling me there's a chance... *YEAH!*
Over the next few weeks, I hope to gain back some strength and begin making enough changes in my physical activities that the distance between NHL and PMoore becomes an insurmountable gap.
Thanks for your continued cheers, positive thoughts and prayers.
Hip hip for remission.
Tuesday, April 28, 2009
On a brighter note, I've started to go on the offensive against post-traumatic stress by learning to meditate. My last class is tonight and I have taken a shine to meditation. In the mid-90s, my wife and I moved into a funky enclave of Grand Rapids called Eastown. We lived in a huge 1900's beauty and were pleased to find that our next door neighbor was the local TM training center. We quickly befriended and enjoyed the 3 couples who lived there during our 5 year tour but I never participated in the training. I mentioned in an earlier post that my Onc suggested that I check out the work of John Kabat-Zinn and his mind/body approach to disease so I decided to contact the national TM organization through their website. They gave me a local number and I left a voicemail. A woman returned the call and after chatting for a few minutes she shouted, "I know you, Paul!" Jim and Kathy were one of the couples that lived in the house next door to us and I've had a great time catching up with them and how the other two couples are doing. I look forward to continuing meditation as part of my healing process. Here's hoping that this will lower my blood pressure, reduce my stress level and assist me on my road to recovery.
Stay tuned as I get involved in "Cancer Fit," a local post-chemo fitness program.
Wednesday, April 22, 2009
I had blood work yesterday and my neutraphils were 240. That is the lowest since my first chemo back in December. When I visited LHCP for the blood draw yesterday, for the first time they had me wait in the infusion center for the results. I must say, I was very uncomfortable and started to get nauseous just being there. I have heard stories about this but every treatment seemed to go fine and I started to feel welcome in the my little cubicle for the day.
I need to pick up a LCD BP monitor. My parents loaned me an old school version and just trying to read the dial while releasing the air and listening for the heart beats increases my BP. I end up doing it 3-4 times just to get a reading.
After a brief discussion with a colleague, I decided to slowly move my blog to a recovery blog and record my "return to normal". This will give me an opportunity to list all the steps I'm taking to rewire my physiology after months of poisoning. Laurie and I were discussing this because I'm convinced that my body has accepted the wave of medications as the "new normal". I'd prefer the normal to be more in line with the "no cancer" normal I was accustomed to during the majority of my days.
For now, I'm hoping to avoid catching a virus or an infection while my blood levels get back into fighting shape.
Last note: As we were walking out of the infusion center, I remembered to ask for my 2 liters of barium sulfate required for next week's final CT scan. To my delight, the nurse entered a closet labeled, "Cleaning Supplies." She exited, handed me the two bottles and I smirked, "How apropos..." She laughed.
Wednesday, April 8, 2009
Felt queasy the rest of the day so I just layed around the house glad that the easy part is now over and the tough work of healing is starting again. Blood work in two weeks, final CT in 4 weeks. It is winding down folks.
Tuesday, April 7, 2009
We discussed a few things with my Onc:
- Get out and get moving this high BP may be coming from the weight gain.
- The edema in my left ankle and foot is back and more pronounced in the evening...we should keep an eye on that
- I should secure a portable BP cuff and regularly take my pressure to make sure I don't have white-coat hypertension something that was suggested in my past.
- Look into programs by Dean Ornish and John Kabat-Zinn
- Look into meditation classes to reduce your stress level.
- The adriamycin can cause long term effects on the heart muscle. My genetic proclivities lean toward heart disease and diabetes so I need to be more attuned "heart healthiness"
- Tonic water has a little quinine so that may help my night time foot cramping. These bouts have me waking up with a start in the wee hours of the morning only to find my toes trying desperately to form an OK sign. Me = Yelping and struggling to find my contorting appendages. Agony.
We pulled the blood work from my port and it appears that my stats are better than Lymphemo #5 so we are good to go. On to the final RCHOP while trying to stay very relaxed and peaceful all while Howard Dean's infamous 2004 primary primal scream is looking for overdue release "YEEEAAH!"
Thursday, April 2, 2009
After tightening the band around my upper arm, the phlebotomist slapped my inner elbow a few times and felt around for some good veins but the right side was not cooperating. I offered the left arm and she was still finding it tough to locate a proper target. Eventually, she shrugged and took aim. She drew my blood into a large syringe instead of the two vaccumn tubes normally used. After withdrawing the needle from me followed by the obligatory Looney Tunes band-aid, she stuck the needle into each of the test tubes to fill them up. This was a new approach and it made more sense because no matter how careful they are when switching the tubes with the needle in your arm, there is still a little pain that is avoided with this new technique. Bravo to nuance.
Several minutes later, Liz emerged with the results. All the numbers were as expected but my neutraphils are down to 700. Those who have been taking notes know that this is too low. Normal is in the 3500 range. After my first chemo treatment, this plummeted to 180. Neutraphil levels indicate your ability to fight off infections. The number will continue to climb over the next week and I have yet to wander around with a mask on. The work I do does not require me to leave the house and I'm a habitual hand sanitizer now so my threat level is probably BLUE.
Looking forward to Lymphemo #6.
Thursday, March 26, 2009
I'm looking forward to a good third week in anticipation of my last treatment. As with most milestones in my life, I tend to avoid any fanfare because I have other milestones to reach before I can be confident that this little lymphoma hurdle is history. I may draw a bold line on the calendar when they remove my port. That just might be the proper time to say, "good riddance, you tester of will, you disruptor of plans, you sweller of body, you mortality questioner, good riddance"
Tuesday, March 17, 2009
The rest of the treatment went off without a hitch and I even took a leisurely stroll on the outdoor deck as promised. Noisy downtown.
All is well despite the fatigue today. I trust this will go away quickly and then I will look forward to THE LAST ROUND. One more to go baby!
We are expecting warmer weather today(mid 60s) with lots of sunshine and I hate to miss that shot of vitamin D. I may haul the Flo-Gard 6201 out on the balcony just to say I did...
I have mentioned before that the benedryl makes me quite tired and during my semi-reverie, Liz came by to make some adjustments and suggested to Laurie that they cover me with a blanket. "He always turns yellow," I heard them say. Suddenly images of characters from the Simpson's started flooding into my head. Ah, chemo brain.
Monday, March 16, 2009
Speaking of lymphoma, I AM feeling the treatment. Not in a debilitating way but it is definitely affecting my stamina. Yesterday the weather was so nice, I decided to pull a wheelbarrow up to the house and start Spring clean-up. I removed an old satellite dish from the side of the house and ran out of gas. Boom. After 15-20minutes of removing bolts and screws, my hands were shaking and I couldn't grip. After a rest, I hauled the wheelbarrow back to the barn and returned to the house a little winded. This was a bit of a shock. To be brutally honest, I'm a little disappointed that it hasn't been harder. I really geared myself up for the fight of my life only to be surprised by how quickly my routine absorbed chemo like just another task. No big deal. Knock on wood. People usually comment on my appearance and demeanor because I don't look gaunt or withdrawn nor have I been totally derailed from my daily activities at all. I count myself lucky that my constitution has held fast and while writing this post, I'm actually getting a little nervous for some reason.
Two to go dammit.
Tuesday, March 10, 2009
My college roommate was in town to get a photo of a horse bridle for a stereoscopic art project and we had some belly laughs over cancer, life, liberty and the pursuit of happiness. Commiserating with an old friend and revisiting youthful indiscretions, if done correctly, is one of life's great pleasures.
A longtime family friend was suddenly stricken with a terrible infection this weekend and has been on life support. We paid a visit on the way home from my blood draw and she was finally coming out of the fog. They were anticipating her removal from the ventilator today and she is hopefully on the mend. It seems that every other post involves a story that makes my cancer journey seem mild. As I mentioned early on in this blog, cancer is a sloth. It gives you time to plan your defensive tactics so when friends suddenly fall ill or are involved in accidents, slow burning lymphoma is certainly a highly reflective hurdle. If your spidey sense tingles a little when sending me all your positivity, just know that over the next several days I am working hard to divert your thoughts and prayers her way.
Wednesday, March 4, 2009
Finding it hard to be profound…my energy level has taken a hit over the last several days. Noticed a big gap in my right eyebrow yesterday so hair loss continues…I’ve stopped counting; not really, I haven’t been counting.
Heard about another past workmate with a recent breast cancer diagnosis so the stats keep mounting. I’m bouncing some of your positive energy her way.
There is light at the end of the tunnel. I certainly realize that I’m on the back half of this journey and I continue to receive comments, cheers and dinners from all of you and that has made a huge difference. Here’s to 2 more treatments. Hip Hip. Hop.
*Nothing but a G Thang – Snoop Dogg/Dr. DRE
Tuesday, February 24, 2009
Two to go! I was a little queasy the whole session today. I was fasting to get a fair glucose number from the blood draw. It was 127 which isn’t alarming but a little high (norm=65-110). I have some diabetes history on my Dad’s side of the family so I wanted to make sure I wasn’t exposing yet another health concern. I took the P on an empty stomach but had a P&J as soon as the blood draw was done. Not sure if this affected the overall experience but I was very tired the whole day and my stomach was not cool. Anyway, it is in the books, no other complications except one…
When I'm receiving the drugs, my feet get tingly and hot…then the odor begins. My feet stink to high heaven for some reason and no one else can smell them. What the...?. I have survived most of my adult life with a rather compromised sense of smell. It is a joke with my family because I can smell what I call low tones (rotten garbage, wet dogs, flatulence, etc.) but have a hard time smelling high tones (perfume, hand lotion, flowers, etc.). Since chemo started, I have a new lease on life with an added sense of smell. Of course, I’m taking the good with the bad. Our black lab, Poppy Seed Gelato (Poppy) found a deer carcass in the field next door and spent the better part of last week eating between meals. I couldn’t be in the same room with her given the smell of death. The gas was “to die for”; does that phrase work here? We took a family hike on Sunday to locate the beast and most of the hind end was missing. I pried it from the ground…someone had extracted the antlers with a hacksaw and I wasn’t in enough of a CSI mood to determine the cause of death. Eric, barn help extraordinaire, and I hauled the carcass to the dumpster and loaded the frozen mess into the safety of a temporary tomb to avoid any further desecration. I think that is illegal but Poppy’s rank scent could also be considered illegal so we are even.
Having said all that, I forgot to mention that the Onc said, “Don’t be surprised if you lose your new found sense of smell after the treatments.” Great. That’s one side effect I would like to keep…along with a lack of ear and nose hair.
Spoke with the Onc this morning and he is pleased with my progress. As he mentioned in the vmail, everything is shrinking as expected. My occasional cough is most likely allergy related and not lymph node related. We discussed the ongoing frequency of appointments following the last treatment (#6) and other minutiae.
I will have a final CT scan 3 weeks after the last treatment to make sure everything is reduced to the point that we are all comfortable. I may not receive a PET scan. We have to play that by ear. I will have appointments every 3 months for roughly 2 years. The frequency will change to every 6 mos until year 5 p.c. (post-chemo). We then go into yearly visit mode. If I can get through 2 years, prognosis is good, if I can get through year 5, chances are, if I get cancer again, it will be another site or flavor.
One thing we discussed was my displeasure at not being allowed to give blood. I also mentioned donating organs. His responded with a slight grin, “that wouldn’t be a good idea.” So I regretfully scratched off the little heart sticker on my driver’s license.
We forgot the Prednisone (P) script again so my Dad graciously drove to the pharmacy and brought it to me just before my treatment. “Have a good infusion,” he said as we parted. Rituxan is flowing at 50 ml/hr with 7 ml to go before they up the flow. The entire bag is 250 ml. R is the juice that caused me to react allergically so they step the rate of flow to give my body time to adjust.
Very crowded in at LHCP today. They are keeping Liz hopping.
Saturday, February 21, 2009
“Paul, Onc here, nothing urgent. I just wanted to call to say the scans looked really, really good. You’ve had an excellent response. The lymph nodes in the chest are completely back to normal and the other nodes are significantly smaller. I just thought I’d give you some good news with all the bad news these days…you have some good stuff. Have a great weekend and I’ll talk to you on Tuesday.”
Again, I should apologize for my withering blog activity. Certainly it is not a sign that I am headed downhill. Quite the opposite, as I feel much better headed into the third week. I arrived on Tuesday for the CT Scan that will show my treatment progress. This is routine now. Choke down a liter of barium sulfate. The first half liter I tried to flavor with some instant tea flavoring we had in the house, Tangerine whatnot, to reference the ‘08 election, “lipstick on a pig.” There is a business opportunity for someone to improve the flavor of this barium sulfate drink and to coat prednisone pills with something. I finished the final swallows as we drove to LHCP. As always, very little wait time, and I climb aboard the rolling plank. After you are under the sheet, they ask you to slide down your pants. At least she asked me to…hmmm. I’ll have to ask if that is protocol. The technician and I discuss whether or not to infuse the contrast through my port or through the traditional inner arm bruise method. A qualified nurse will need to be called in if I want to use the port and we cannot leave the line in for my blood work upstairs so I opt for expedition and choose inner right arm bruising. She did not disappoint as a quarter size bruise popped up almost immediately. Nice.
125 ml of metallic tasting, body warming sensation later, I was holding my breath at the direction of the robotic voice and sliding back and forth through the doughnut hole on the flannel sheeted plank. 10 minutes tops.
We head upstairs to the infusion center and yet another blood draw. In no time, Liz heads out to say hello and everything looks great. The neutro count is 1.24, on the low side but remember, after Lymphemo #1 I was down to .15. We will see her in a week for Lymphemo #4 and to discuss my progress.
Oh, one more thing, I’ve lost most of the hair inside my nose so my nagging allergic drip has taken a surprising turn. With no speed bumps along the way, every quick flip of the head can produce a lawn sprinkler like response. Eh, maybe TMI.
Friday, February 13, 2009
Slowly recovering from a slight chest cold that settled in last weekend. In times like these, any pain or cough starts the "what if" machine but over the last two days, conditions have improved. This week I received sad news that a longtime family friend had cancer return after 6 years in remission. I haven't heard all of the details about her next steps but she is a pragmatic fighter of whom I have a lot of respect. She called me after my diagnosis to provide wisdom about the chemo process and the insights were just what I needed to hear.
Looking forward to my CT scan on Tuesday but the comparative results will not be available until right before Lymphemo #4 commences a week later.
Friday, February 6, 2009
My first 15min session was just enough to get my heart pounding and I'll work my way up from there. Looking out into the frozen pastures while pumping along on the bike seems fitting. I'll see how far I can go without actually going anywhere.
As with the other treatments, my first few days are filled with intestinal shock and a witches brew of laxatives, tums, anti-nausea meds (just in case), prunes, tons of water and chemo brain. Feels better with lots of little meals which accounts for the weight gain which leads to spinning.
Tuesday, February 3, 2009
Happy to say that the treatment went off without a hitch. I’m feeling a little worn out after this one. Liz brought over the bloodwork and some of the numbers have changed quite a bit particularly my neutrophils. They are over my pre-chemo baseline so that means my body is bouncing back quickly. Good sign. My glucose levels were a little high(200) so i am going to fast before the next chemo to determine my true glucose level. This treatment went a little quicker than any others because the Rituxan flow was increased and that doesn’t seem to have added any adverse effects to my well being. We did do RCHOP as opposed to RHOCP.
Lymphemo #3 is in the books. Halfway through this mess and only looking forward.
Here’s the process we follow on Lymphemo day:
Blood draw – They perform a blood draw and run it through the lab to make sure that I am not too depleted to receive the hard stuff. The draw can done through my port but I was told this morning that if you have it done in the lab either with a finger poke or an arm jab, the results are available sooner. Now this is amusing because they typically get your labs back in minutes but the infusion center nurses are required to perform the port draw and they are typically very busy. This morning it was easy because there are few customers in this early. Liz did the deed.
Meet the Onc – A nurse records your temperature, weight and blood pressure (My BP always runs a little high…maybe I’ll be blogging about that after all of this. Sheesh.) Onc meets with us to discuss where we stand and he does the once over checking for lymph node enlargement. We discuss my chest pain concerns (normal), my occipital lump (didn’t concern him because we lack a baseline…could just be a cyst but we will wait and see), my high calorie intake (don’t do that, “getting fat isn’t healthy either”), should I expect changes in my reaction to the chemo (“no, you may see a little more fatigue”), massage (“no it won’t move the chemo around. Do anything that relieves stress”), etc. Now i say “etc” because we peppered the guy with questions until he finally stood up to leave. “Look, you are doing fine. Relax, it’s just NHL.” He didn’t say that but we were joking about how relentless we were with the questions and he seemed to tire quickly of the inquisition. We scheduled a CT scan for two weeks from today to check progress.
Carve out space in the infusion center – We found a new spot in the back and set up house. Hooked up the Flo-Gard 6201 and started the inebriants flowing. Today we are going without one of the steroids to see how I react to R. So far, no problems but the Benadryl consistently knocks me out for about an hour.
Monday, February 2, 2009
My eldest daughter turned 18 on Saturday and we arranged a little surprise courtesy of her fellow thespians and friends. She felt a little duped that all the planning was happening under her nose but that's why we call them white lies. She was thoroughly surprised.
The last nagging thought I have involves a lump on my right-side occipital lobe. Although I have been unsuccessful in locating a lymph node diagram that illustrates a lymph node here, I wonder if this is related. Since this area has been covered by my ofttimes long hair for years, it may be a just a benign lump that a phrenologist may tell me indicates a "long life." I plan to ask the Onc if it is significant.
Who knows what lurks in the infusion center tomorrow? Look for the play by play.
Tuesday, January 27, 2009
When I have contacted people lately and they say, “How’s it going?,” it seems easier to say, “OK” as opposed to “Well, in December I found out I have blood cancer”. This is just too dramatic for me because if I were in their shoes, it would ruin my day. Period. It feels less dramatic to say “…i have Lymphoma” hoping that the inquisitor doesn’t know exactly what that is and more exchange can happen before I ruin their day. Speaking of a ruined day, I have been donating blood regularly for years with my obscure A- blood type and was closing in on the 5 gallon mark only to discover I may not be able to donate again. I need to dig deeper about this because they consider the 5 year mark after chemo with no reoccurrence a “cure”. I didn’t think this would preclude me from anonymously helping my fellow A- humans but I’m really bummed out.
Donate blood. It’s easy, doesn’t take enormous commitment and is a free method to spread the Hope. Someone has to fill my void!
Paid yet another visit to LHCP this morning to check out the status of my cancerous blood. Levels are better than the draw on 1/6
2 wks > #1
2 wks > #2
I will keep you posted on the numbers but , as a reminder, this is the number that indicates my infection fighting ability. Theoretically, it should start climbing back up before Lymphemo #3 next week but I continue to “coat sleeve” my hands when touching anything in public. The family continues to complain about finding fine little hairs in their food but I still have eyebrows, lashes and enough arm hair that I fit into the fairly ubiquitous, “bald guy” look. I may not experience the full Judge Holden (McCarthy’s Blood Meridian1) effect.
Last thought: Please divert some of your positive energy to Bob G. who is recovering from extensive shoulder surgery following an epic, wipe-out at the local ski hill.
1hey kids, you don’t need the Saw movies with books like this around, trust me
Sunday, January 25, 2009
Over the past couple of days I have been coughing more and experiencing some mild chest pain. My thoughts immediately gravitate toward, “Is chemo working?” This may seem silly given my hair loss and other concrete reactions but when they describe a cancer as “aggressive” could it be working faster than the chemo? I decided to call Liz to tap her knowledge bank. As always she is positive and full of info. It could be three things: slight pain from the chemo working, pain caused by anxiety about whether chemo is working or maybe a viral infection or more bronchitis brought on by reduced immunities. I should confess that I have rarely run to the medicine cabinet to resolve my health issues. I’d rather sleep it off and complain to my family. So this new phase in my life, “better living through chemistry”, is a change I have yet to wear comfortably.
Liz called in a script for Ativan. I decide to add yet another pill to the regiment but to be safe, I will start dosing at night. Saturday morning I wake refreshed and look at the clock, 8:30am; almost an adult record. I’m cursed with a Moore gene that makes me feel sluggish if I’m not up by 7am regardless of the time I climb into bed.
No pain. As the day rolls on, I run some errands with Summer and by 2pm I am asleep on the couch. The pain is creeping back but Ativan seems to help me sleep.
I venture online Saturday evening looking for anecdotal “chest pain” comments from other NHLers and can’t find anything positive. This stinks. More pre-, post- and during chemo pain stories that bring me crashing down. Although his goes back to one of my early blog comments that everything comes with a price, I’m done with anecdotes until I’m finished with Lymphemo. Two other thoughts to consider: my lymph nodes are now overtaxed with more dead cells than they ever would have imagined and they are letting me know their pain. Two, the necrotic tissue in the center of the lymph nodes could calcify so whenever I jump rope, I sound like a marble bag. I know, i know…just don’t jump rope.
Wednesday, January 21, 2009
We have a horse farm at our humble abode where Laurie operates her dressage training facility, Timberlane Farm. Typically, activity slows down in January and February to give the horses some rest and the past few weeks have been brutally cold which also takes some fun out of riding for both parties involved. The natural break, as well as my unexpected change of condition, has given Laurie time to “get organized”. This organization could not be possible without the continued assistance of Whitney P. The adage, “When momma ain’t happy, ain’t nobody happy,” seems to be true at Timberlane Farm so anyone who can help make momma’s life easier is welcomed and appreciated.
Having said that, my newfound shut-in status has given me more time to consider painting; something I have not made time to do. I approach painting in marathon sessions where paintings are completed in huge blocks of time often into the wee hours as opposed to a disciplined series of sessions. I came across an image of Picasso’s Le Reve (The Dream) and really wanted a copy for our bathroom so I cranked out a copy to get the ideas flowing. This is the $50M painting that Steve Wynn put his elbow through and had to cancel the deal to sell it for $139M. Although I’m a geek for contemporary sculpture and work by “minimal” artists, I started a project several years ago to produce 100 horse paintings in order to better understand the aesthetic side of my wife’s passion. I’ve never sold any of the work aside from some greeting card reproductions that we produced as gifts in 2007. Laurie asked me to produce one for Whitney as thanks for all the work she has done to help get Laurie organized.
So that is, “To Whit #30” and Whitney doesn’t even know yet.
On the health front, still steady. I have been noticing more stray hairs on my desk, around the bathroom sink, etc…although I have heard that many people lose their hair in quick clumps, mine seems to be clinging on. Everywhere the hair gets rubbed by clothing, there are large bare spots. I’ll keep you updated as the shedding continues. Secondly, the cough seems to be hanging around. Not as debilitating as before the diagnosis but a persistent cough none the less. Coughing makes me anxious to get through the next Lymphemo on Feb 3rd in order to a get “progress report” CT and a full work up by the Onc.
Saturday, January 17, 2009
Some of you may not know that I am a reader. I have spent thousands of dollars in my adult life purchasing books. I like everything…Fiction, Poetry, Graphic Novels, Art books, Magazines, How-to Tech books, etc. I savor reading and rarely can read a book in one sitting. This has more to do with priorities than any other excuse but my books are my friends. They are stacked and hidden around our house with more book boxes stored in the basement. I often crack them open to find familiar words and phrases or to look up an image or reference. I just spent the past few hours galloping through Schimmel’s Cancer on $5 a Day* *chemo not included. He is a stand-up comedian who was diagnosed with NHL Stage 3 in 2000 and recounts a harrowing journey through chemo treatments that I have yet to experience. He had so many setbacks that if any of you picked up the book, you would have cause for concern. You may question my reporting accuracy and truthfulness.
I will take this tidbit away. After receiving the news, he was having night sweats, chills and they found enlarged lymph nodes under both arms, he called his doctor at home in the throws of an anxiety attack. He was pleading for a single Xanax and his Onc said, “No.” The Onc explained his rejection. “If you were asked to fight Mike Tyson you could hire a trainer, a nutritionist, order tapes from all his previous fights, begin road training, establish a fight plan and start training for the fight of your life OR you could take a Xanax. Go home, get on the Internet and become an expert on NHL. Read forums, blogs and research sites. Start training.” Now that’s wisdom.
Schimmel’s tortured journey is yet another example of how unique life’s experiences must be. Singly enjoyed or suffered by each of us in order to give our short time here meaning.
My mouth is a little tingly, my stomach was a little queasy today and I’m shuffling through various laxatives like a man twice my age but this is all manageable.
Friday, January 16, 2009
This go round has been uneventful although I thought I was running a fever this morning; the baby thermometer says otherwise. Although I am not diligent about the Compazine, I do have some bouts of queasiness that I seem to be able to will away. I have been able to keep a respectable level of energy as long as I perform a power nap after an early dinner. I’m really into grazing these days. By following fellow Lymphomaniacs who suggest that you eat 6 small meals daily, I seem to be on a manageable routine.
Kudos have to be passed to everyone working with Gay Sykes on the meal deal (see link at right). Gay has organized many friends and family to prepare meals twice a week. This takes so much off our mental plate and there are always leftovers on which I can graze. My parents have also made time to visit every Wednesday to cook and clean which is even more heroic given the fact that they are supposed to be in Sarasota, Florida basking in sunshine and collecting shark’s teeth. It’s comforting to have family so close and concerned friends checking in.
Tuesday, January 13, 2009
Second point: Chemo is an inexact science. We uncovered some funkiness today in the anti-nausea meds. Make sure to be very curious with your attendants because, like ER, they have more street smarts than the Oncs when it comes to pre-flight medication therefore they have enough latitude when it comes to adjusting your drug regiment.
3:55pm - So another long day ends in the LHCP chemo room and once again we seem to have outlasted all my fellow passengers. The room is quiet which brings me to my final point.
Final point: Chemo and television don't mix. Each of the stations have their own HDTV and remote. Many passengers come in and immediately turn on their "stories" or some reality show where hoes be screaming and beatin' down hoes...it's just not conducive to your mental state. Now I'm no TV snob, I don't claim to only watch PBS and I watch my fair share of TV at home but in this environment, not cool. I suspect they might be saying, "Look at that workaholic. Can't he just leave his laptop at home?"
Final final point: Kidneys are processing as expected. The Red Devil has started it's exit and combined with my daily multi-vitamin, that is high in B complex, has managed to prove the color wheel theory by producing a nice, popsicle orange hue, a detail only a painter could appreciate.
The Aloxi is now flowing in place of the Zofran to stave off the nausea. I'm not above acting pre-emptively when it comes to nausea or hair loss...although I'm not gonna shave my body like a swimmer; and no waxing - no Brazilian waxing, please. If you see me and my arms look like a mangy dog, you'll know why. I'll start popping Zofran which dissolves on your tongue very quickly as soon as i get home; tastes a little like Pepto Bismol if you like that kind of thing.
Barb favors the reverse chemo method so she will push the Adriamycin (H) next and then the Oncovin. These are the harsh ones so she feels it better to get these poisons sloshing around my system for a while before releasing me to the wild. If you recall, the Adriamycin comes out later in a brilliant, pink hue. My brother suggested that I draft a message in the fresh snow, photograph it and post it for you. Logistically, this might be a difficult gag to pull off given the fact that the Cytoxan (C) has yet to hang but they do have a nice rooftop deck outside the chemo delivery room. My fellow passengers might be disturbed if I wade out into the snow with my battery powered Baxter Flow-Gard 6200 IV pole(see pic) and my camera. Ah, forget it, it's in the teens outside.
Blood analysis came back with decent counts so I am good to go.
10:45am and still getting Benadryl, Steroids and Saline on board before R (see previous) begins. If you recall, this was the med to which I reacted the first go round.
10:55am R begins very slow. Now waiting for the other shoe to drop...is it a boot or a moccasin?
Had a pic but forgot my camera's interface cable. Will post some images later to set the ambiance.
Last note for this entry. Saw "Gran Torino" on Sunday afternoon and I can't recommend it enough. Eastwood is a force in these types of roles. After you get over the uncomfortable racism, the film is a charmer with some bursts of laughter. The Detroit setting also brings the subject matter to the forefront in proximity and economic relevance. Stick around for the credits to roll as Eastwood was nominated for the song. he croaks out the first verse but Jamie Cullum brings it home.
Monday, January 12, 2009
Sunday started off with a bang as my arm hair started coming out. Not as drastic as my melon but the reality of having less hair than my 11 yr old son is amusing. The other byproduct of hair loss is that my facial hair has adopted a snail's pace. In 7th grade, I started shaving my peach fuzz hoping that I would soon have the full scratchy face my father possessed. I knew it would only be a matter of time but I just needed to shave. The outer reaches of my eyebrows grew close enough to my hairline that I was compelled to shave a little space in order to play down my simianess. Today, my Thursday shave has kept my whiskers at an acceptable length. After 30 years of facial hair decisions, through disposable, single, dual, triple, quadruple blades, I may be blessed with several months hiatus and that brings joy.
Lymphemo #2 tomorrow. Expect a flurry of reports.
Tuesday, January 6, 2009
My lymphemo nurse reviewed the results with me and all the values were as expected. WBC is low and my neutrophils have hit rock bottom. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections. This is called Neutropenia. In layman's terms, my ability to fight off infection is so low, I'm susceptible to almost any crazy bacteria that strolls along. I'm walking around like Howard Hughes or Howie Mandel. As if cancer wasn't enough, I'm now being driven to OCD what with all the washing, hand sanitizing and lack of door knob touching.
Next up, more hair loss and lymphemo #2.
Monday, January 5, 2009
Sunday, January 4, 2009
Found a quick video that graphically sums up NHL.
Thanks to all the notes of concern and support via email, phone calls, prayers and blog comments. It makes my day.
Thursday, January 1, 2009
Although we had plans to attend another family dinner on New Year's Eve, I ran out of energy. Power naps appear to be my saving grace and I missed it yesterday. Laurie and I decided to break out a copy of "WALL-E" (xmas gift from Santa). Santa's intentions were good but he didn't check the list close enough because he delivered the Blu-Ray version which is useless to me. If anyone is interested in a brand new copy of this apparently delightful film on "high definition" Blu-Ray, please let me know...and give me a synopsis. Never fear, there was a back up plan as I was gifted a copy of, "There Will Be Blood". I didn't catch it during the initial release and read great reviews. The title seemed fitting for my journey. Manipulation, deceit, fear...many of the current feelings I have had about my condition are expressed in the characters and situations in this film. I have been reflecting on the Daniel Plainview character all day. My lymphoma is now Daniel Plainview. Overconfident, successful, mean, and now angry at my challenge to usurp his power and cast him out. Imagine, a defect in my system that allows one process, lymphatic drainage, to convince another that an internal attack is in order and that without intervention, my body would continue fighting with itself to the death. It's as if I caught my body doing something that it shouldn't and now it is embarrassed and lashing out.
A friend sent a note with some good questions that I wanted to pass along because he may not be alone in his curiosity. He experienced some awful stuff in Iraq; at least cancer is a sloth.
On the sliding scale of treatment -- meaning: no treatment, partial treatment, full treatment -- what's the prognosis and survival rate/s ? Years, months etc.
No treatment=death successful treatment=death (eventually)
No seriously, looks to be in the neighborhood of 80-90% cure...not just remission. I have to crawl through a fairly decent sized field of glass to get through this but there is an endpoint.
How much treatment do you have to endure before results are expected - and what kind of results signify success ??
If I get through the chemo and tests are still showing disease, they may change tact and head toward bone marrow techniques. It isn't currently in my marrow so this is a good prognostic indicator. They consider 5 yrs out with no bloodwork evidence, a cure. This is not to say another cancer may crop up but it won't necessarily be related. My onc thought I would see results in 2 weeks and they will take periodic CT scans along with bloodwork to see how the treatment is working. The tough part will be that getting better will be masked by the massive poisoning that occurs every 3 weeks.
Are the treatments progressively stacked or linear, meaning just one after the other.
Treatment builds on itself. Word has it that by chemo#4 or #5, energy wanes. Again, this is such an individual deal that I refuse to lay around and hope. I march on, come hell or high water.
Is there a particular cause for your condition -- or is it just plain bad luck --
Genetics, exposure to something ?? Did you eat paint chips ??
They are not able to pinpoint any real cause. Interestingly enough, I am the first person within my immediate family with any published cancer so there is no genetic predisposition. One of the early surveys I filled out was embarrassingly blank as they probed for family ties.
How long have you had it -- do you think ??
I think the October bronchitis uncovered the cancer. I asked the Onc how it would have manifested itself and his answer was, "it would be painfully obvious by now" He said I would have had chest pain, shortness of breath, other pain, etc.
I'm an open book at this point. Internet privacy be damned. If you have any questions, don't hesitate to ask. I can't think of any questions that would be too upsetting or uncomfortable to answer.
I did see the ball drop so 2009 has officially started.