Tuesday, February 24, 2009

Lymphemo #4 B

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.

Lymphemo #4 A

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

Voicemail 2.20.2009 6pm

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.”


CT Scan Midway

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

So strange...

My blog output has dwindled as I am getting into the chemo groove and battling my persnickety bowels. I have held off going into a lot of details in this regard to avoid the cheap laughs. Let's just say that this is turning into an ongoing chemistry experiment that I would be willing to spend time perfecting 30-40 years from now. You know that you have crossed into a strange place when you shush your family during laxative-related pharmaceutical commercials in order to hear all the features and benefits of a new drug while taking mental notes about the side effects like temporary blindness or frequent nosebleeds. I am willing to consider most possible side effects no matter how dire.

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


Didn't think it was possible but I took high calorie intake advice to heart and have actually gained 6lbs. I'm not happy about this but the Onc shrugged it off. The pros keep telling me not to go on a fitness regiment or restricted diet because weight loss raises eyebrows in oncological circles. Last week, we received a surprise offer from Julie B.; a spinning bike. I've never participated in a spin class because they were a tad intimidating. Dark rooms, loud music, shouting, profuse sweating...I'm quite introverted when it comes to exercise. Laur and my brother Greg made a trip to pick up the stationary vehicle. The Schwinn Johnny G Spinner is now taking up a 24 x 48in space behind my desk challenging me with it's low-tech heft. No fancy dials or readouts, no brakes, just an uncomfortable seat atop tube steel with toe-clipped pedals, racing handlebars and a heavy flywheel. I've perused stories online of sessions that induce fainting and vomiting on these bikes but staving off those effects from chemo only to induce them through exercise seems silly.

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

Lymphemo #3 B

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.

Lymphemo #3 A

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

3rd Week Observations

Lymphemo #3 is scheduled for tomorrow morning and I'm looking forward to the midway point of my treatment. The past week has been uneventful and I'm feeling great. I've been relatively successful dodging sniffles and runny noses. If I hear anyone cough or sniff, I spy the offender and turn heel toward the opposite direction. I have found that the 3rd weekend has been filled with an unusual feeling of exhaustion. This may also be a byproduct of no power naps during the week. I have been feeling so well that the evenings have been too busy for a nap.

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.