Wednesday, December 31, 2008

Even Keel

Rancho Timberlane Farm is now free of moldy, stinky carpeting. The last bedroom was completed yesterday. The place is still in shambles but a whirlwind of family activity has filled a 20 yard dumpster and now the smell of paint hangs in the air. The basement is also cleared. Too many helpers to thank.
On the health side, my energy is returning and stays on an even keel as long as I graze. If I go too long without a morsel, I hear, "Are you OK, you look yellow/white?" Sleeping several hours at a time during the night which may be the result of the completing my first dose of Prednisone. I was tasked with consuming 100mg daily. After chemo #1, I took a dose in the evening and followed that regiment for 5 days. Unfortunately, that may have been a bad decision so if you are seeking lymphemo tips, take Prednisone early in the day.
We took a quick break last night to see a movie. Typically, we decide based on showtime convenience and we landed in an 8pm showing of "...Benjamin Button". It was a curious yarn with a narrative conducted in a hospital room by the daughter of a woman who lays dying from CANCER. Sense of humor, don't fail me now.
"You never know what's comin' for ya"

Saturday, December 27, 2008

Feeling Logy

Many people have asked me how I am feeling. This question comes from a position of concern and curiosity. Although I have heard from those that have been through lymphoma chemo (lymphemo) and we compared notes so far, the first striking thing that you learn is that it is a very personal journey. There are very few established norms, namely the hair loss, but some people don't lose it all. The effects you may have heard about appear to be resolved by modern chemo techniques but the medical staff goes to great lengths to make sure you understand EVERYTHING that could possibly go down. I may amend this observation down the line but so many anecdotes online support the notion of lymphemo as a nuisance. Despite the hours of introducing cancer killing medication into my system, when friends ask, "How are you doing?", I want to say, "I'm feeling logy" I'm just a little off. Cautious eating, lots of water, quick catnaps have all added up to a strange fogginess that I hope to stave off with daily walks as opposed to a run up to the corner store for a low-carb Monster.
I'm also working hard to accept help from family and friends. Laurie and her mother have orchestrated a Ty Penningtonesque descent on the Timberlane Farm ranch house. I hope to see the progress today but we all felt it best for me to seek refuge from particulate matter at my parent's home while the old carpet is removed. A fresh coat of white paint will grace the bedroom giving it a rest from the infamous lemon/maroon scheme. I owe much to everyone already for the gifts of time and concern...I'm less than a week into my 18 week journey.

Friday, December 26, 2008

P is for Prednisone and Presents

For those keeping track, I almost forgot the P. I have to take these with juice because the pill dissolves almost immediately at the back of my tongue and my first dose was the consummate "bitter pill". Christmas was great. My folks visited in the late morning for excellent strata that Laurie worked on long after I crashed Xmas Eve. The kids are excited about their newfangled gadgets and I rec'd 8 hats in anticipation of my chrome dome. Ironically, some people don't lose all their hair but something tells me I will be a little disappointed if I don't; gotta be the whole ride, right? I ran out of gas late in the evening after a classic turkey and mashed potatoes dinner with Laur's family. I'm not sure if food just tastes better or Laurie's Dad performed a Christmas miracle because the turkey was amazing. Laurie's brother and nephew were able to make it from Portland, OR despite a "no show" flight attendant so the evening rang out with the peals of joyous children and a spot on acapella rendition of Devo's "Whip It" by master Oliver on his High School Musical 3 wireless FM microphone.

The Miller clan has plans to attack the master bedroom floor today and dispose of the carpet in favor of a surface less likely to collect indoor pollutants. The dumpster arrives this morning.

Wednesday, December 24, 2008

Feeling Radiant

It's Christmas Eve, the day after Chemo #1, and I feel warm to my own touch, like I'm a little sunburned, but do not have a fever..strange sensation. Had trouble sleeping but I have never been one to fret about getting my beauty sleep. I tend to feel more productive with less sleep on occasion. Still drinking tons of water to flush out the toxins but otherwise I feel pretty good. I have been receiving advice to make sure that I visualize the meds attacking the cancer cells and after my annual viewing of the "Wizard of Oz", I can't keep the Alphaba melting scene out of my head. "You cursed brat! Look what you've done" All this water is certainly having an affect on the "wicked witch" cancer cells; no, my cancer cells are not feminine it just seems to work best for the analogy.

Tuesday, December 23, 2008

H is for Adriamycin (i know) and O is for Oncovin

Just finished three syringe fulls of the "Red Devil" (Adriamycin)...looks like red Kool-Aid and apparently I'll be seeing this later. This was followed by a small syringe of Oncovin. Feeling fine with a couple of new scripts, Zofran and a topical numbing cream for the skin above the port.
No, I won't be selling any leftovers and you can stop asking about the medical weed (I will resist naming names). Although I voted enthusiastically this Fall to pass the bill, I won't be exploring that avenue anytime soon. Keeping an open mind though...
We are done with the first round. Despite the hiccup with R, the day just floated by and I'm ready to continue the battle at home while celebrating Xmas with the family.
5 to go. Whew.

C is for Cytoxan

I have been on the C drip for about 30 mins. They decided to move this slowly due to my reaction to R. This will be the one to cause nausea but so far I'm feeling a little sweaty, otherwise not a big deal. The IV pump actually has a little 4/4 beat that I just started listening to, complete with a little hi-hat sound. Laurie and I just finished looking through some pictures we rushed to take on Sunday afternoon, to capture my locks just in case. Laurie's sister, AnnieR, always captures the best shots.

I have been able to look out the window and all day the windows have been an enormous snowglobe.

My world feels a little shaken.

Bring on the R-CHOP

I had plans to send an update every hour or so but I had a late start. We had a quick meeting with the Onc who helped clarify where I stand. The last CT scan displayed a few enlarged nodes around my intestines so the full diagnosis is high-grade Large Diffuse B Cell Lymphoma - Stage 3.
Although it was a little discouraging to learn that it moved below my diaphragm, I'm still considered a score of 1 on the IPI...if you follow the link don't be so alarmed by the numbers because the disclaimer under it explains the significance of the R (rituximab) in the R-CHOP treatment.
The cancer is aggressive but that actually bodes well for my "cure rate".
This brings me back to treatment. They started the R flowing and 4ccs later, my head was itching like crazy, sweating and my throat felt like it as drying out by the second. Allergic reaction.
They hung a couple of bags of Tagamet and a steroid. 30 minutes later, I was back under control and they started the ritux again and I fell asleep from the allergic shock.
Feeling much better as they increase the dosage by the hour.
Next up, C, H and then O. P(prednisone) is oral so I just swallow some pills for that. piece.
Laurie has been a excellent and welcomed chair side assistant. More soon.

Monday, December 22, 2008

The Port

My parents volunteered to taxi me to LHCP for the port installation. My father recently had a procedure under conscious sedation and he has no recollection of the time after the procedure through the afternoon. I found this striking so we decided to experiment a little and see what will happen to me. While waiting for the surgery we were able to catch up and have some laughs. The nurse asked me what side I wanted the port to be placed, right or left. After I gave her a quizical look, she said, "Do you hunt? It's important to most guys" My shrinking manhood made an audible squeek. They installed the IV and eventually wheeled me in early no less. I chatted with the nurses who were prepping me because I enjoy the fact that talking about cancer and all the procedures with them is what they do. They don't shy away from much and that provides confidence to me.
They covered up my head after starting the push which felt cold compared to the contrast during CTs. I was awake and thinking that they were just prepping the device for insertion. It certainly didn't feel like a 45 minute procedure but I didn't feel a thing nor did I feel exceptionally groggy. They wheeled me back to recovery and my parents came over. I explained that I felt remarkably lucid. I ate some crackers and guzzled a large glass of ice water. We chatted for about an hour. I got dressed and walked myself out. This was nothing.

The image shows the bandage and I'll post an update when you can actually see the little device under my skin. The insertion doc explained that they will leave it in for as long as it is required because they don't want to install another one later. So I am now the host of a little, plastic, purple port.
I just called my folks...what did we talk about this afternoon?


At the risk of seeming creepy, I dug out a self-portrait from a few years ago. I started the painting and didn't want to figure out the hair so I decided to visualize...maybe I'm a Hero.

As a distraction, here are some other pieces

Saturday, December 20, 2008

CT Scan and Echo

Spent the morning choking down two bottles of Barium Sulfate in preparation for my "throat to knees" CT scan to help determine my stage. I wouldn't want to drink that everyday. many of these new experiences will be met with the comment may onc made when I asked how bad the bone marrow biopsy would be. He said, "I've had two and it isn't unbearable but I wouldn't want to do it very often." Most painful experiences can fall into this category. Ask most women with children immediately after giving birth and they would probably say they never want to go through it again and yet they do.
Back to our story...we had a terrible snow storm so I was one of the brave few on the road. The fairly new Tahoe (Big Red), despite being the least fuel efficient car we could have selected in this day and age, eats through the deep snow like no one's business; a beast. Made it to the hospital with plenty of time to spare. I was escorted to the CT room, fitted with yet another IV and pumped full of additional contrast material. When i looked at the bottle hanging on the machine, I thought, they aren't putting that whole bottle in...the tech was clever enough to warn me that the contrast would make me feel warm all over and that the warm sensation in my nether region was not due to a loss of bladder control. This was helpful advice as the tip of my nose to my ankles were suddenly flush with heat. A couple of "hold your breaths" later and I was done.
Now off to the heart center for an echo.
This test was more confusing because you have to orient yourself to the "fan" of the scope as opposed to the traditional cross-section view. I asked the tech to look for plaque build up so we could kill two birds with one stone. The valves seemed to be functioning normally and the coolest view was the blood flow. They actually show the blue blood and red blood flowing through the heart valves. Love that visualization technology. After the procedure, we discussed the strength children seem to have after surviving life threatening illnesses. they seem to come through the other side with such wisdom...The tech mentioned that her most difficult echos involve teenagers and young adults who have destroyed their hearts from drug use. Amazing.

Thursday, December 18, 2008

The News

Broke the news to my work associates who have responded with lots of good thoughts.
The support is comforting.

Laurie's customers have also been very concerned and want to do everything to help.
She was planning to spend several weeks in Florida this winter training and connecting but all of that is now cancelled. I feel bad.


Early appointment 8am with the thor surgeon. He comes into the room, "So, how are you feeling today"? Paul answers, "Actually, I feel great coughing a lot less than last week and my energy is back" Doc says, "Well, I don't know why that would be..." Gulp. Heart sinks. "You have B Cell Lymphoma".
They scheduled an appointment right away with an Onc in our new Cancer Center and I was able to see him after a couple of hours. "Large B Cell Lymphoma".
He described the treatment, Chemo, and some possible side-effects. He also wanted another blood draw and a bone marrow biopsy. I have seen enough House and ER to know that this is not a painless procedure. He numbs me up and makes a small incision on my lower back behind my hip bone. My wife moves to the front of me as I grit my teeth and begin sweating as he starts cranking on some tool to get through my hip bone. Hurt like hell. Apparently I am at prime bone density age which makes it difficult to get into the bone.
Next, met with the chemo nurses who reviewed all the side-effects and gave us a quick tour of the chemo zone. I receive my port on Monday and treatment starts Tuesday. Stay tuned.

Tuesday, December 9, 2008

Thoracic Surgeon's Office

Rec'd a call from the thoracic surgeon's office rescheduling for later on Weds morning. Nurse asked all the normal "are you allergic?" questions and some of my surgery history. Really want to know more about this...I continue to cough quite a bit and the cold weather appears to exacerbate the cough.
Last night I heard another relative just found out he has prostate cancer. Merry Xmas...ugh.


After running through 100 scenarios in my mind over the weekend and trying to figure out how to tell family and friends, I spoke to my GP on Monday.
He was pleasantly surprised to find LDH levels just out of normal (192; norm range 110-190) and normal WBC. So now what? Why are my freakin' chest lymph nodes showing so large on the CT. They scheduled a biopsy for Weds so we will wait to see those results before determining how to react.

Saturday, December 6, 2008

Now it begins...

(Mom's BDay) I went to my GP on 11/14 because I was experiencing a weird cough since returning from a biz trip to Nashua, NH. I had written it off as a bad cold some fellow traveller transferred to me via the stale air. The GP prescribed an initial course of Azithromyicin (Z-Pak) and a bronchial dilator to see if we could get rid of this "Bronchitis". I felt better a few days into that treatment so I was on the mend. The Friday after Thanksgiving, the cough came back with a vengeance and my father(retired microbiologist) suggested that I might need another round of abx. I called the GP back on Monday (12/1) and asked if they could prescribe a refill or another round. They said they would call it in to the pharmacy. I called the pharmacy hoping to get started as the cough was getting painful and more frequent but nothing was called in. I called the GP back on Tuesday(12/2) and they wanted me to get a chest xray too. I hustled over to their office between calls, confirmed that the abx were called in and received the xray in the same building. Easy.
Yesterday (12/5), I called to ask about the xray assuming that they didn't find anything and that I should just work through the abx course. The GP couldn't see any pneumonia but ordered a CT and a blood draw just in case. I drove downtown to the Lemon Holton Cancer Pavilion for a 2.30 scan session. The technologist asked if I wanted to wait in the building for the results or wait for a call. I figured that they wouldn't get to it until Monday so why wait around. At 4pm I rec'd a call from the GPs office asking if I could come in at 5pm to discuss my CT results.
I was hoping for some pneumonia news but my GP came in the room and as he lowered the blinds said, "I was hoping you would bring your wife". Doh. He said the radiologist described the lymph nodes in my chest as "deeply concerning" and that he felt he was looking at Lymphoma. Ah crap. Now I have to sit through the weekend waiting for a call to schedule a biopsy and then wait to see if the preliminary diagnosis is true.