Saturday, June 27, 2009

Got some rides in

Man it's good medicine! Got out on the mountain bike Friday . I was wondering how that would work out, since there's always hard work to be done. I was able to recover enough between the climbs and such to make a good time out of it. Not fast but capable

And then today on the road. Hit a stretch of road half way through and felt like turning it on a little. THAT felt good! Tried not to overdue it. My Dr. always looks at me funny when I tell her I was out for an hour and a half. I don't think she believes it when I say that IS an easy day for me.

If I'm not carefull I might come out of this with some fitness. AND a good climbing weight!

Wednesday, June 24, 2009

Back up for air

Feeling like I've turned the corner about on schedule. The MO seems to be 4 "feeling kinda crappy" days after Friday treatment, and then getting back to normal around Tuesday or Wednesday. Did a bike ride the Saturday after treatment (the really "crappy" stuff kicks in on Sunday) with no apparent ill effects so I'm going to try to continue that. I suspect it could only help metabolize the chemo out.

Starting to get pretty conversant on the blood work that gets done a couple times a week - looking at WBC counts and liver function enzymes.

I think I've finally learned not to plan any visits early in the week after treatment. I just never feel good enough to pull it off. An unexpected bonus has been reconnecting with folks from the past, and making some new connections as well.

Monday, June 22, 2009

My brother Jon just left for home

He had made his second visit from Utah in a month to help out and spend time with me. He gave up a week long cycling vacation in Colorado to come here. Yet another example of extraordinary efforts from many folks to help me get through this.

Friday, June 19, 2009

A rough day at Chemo

Chemo Breakfast 1

Only 1 doughnut!

Turned the corner on the mucositis

Looks like I've turned the corner on this. Didn't NEED any drugs overnight to deal with the pain and I'm reducing the Oxycodone today without any problems. I'm still getting my outstanding prescriptions filled while I'm here at the Hospital Center today. I do NOT want to get caught short should it (or something else) come up again.

Wednesday, June 17, 2009

Insurance/Pharmacy Rant

Needed 2 drugs. One (for pain) Giant can't fill until Monday or Tuesday. The other (highly marketed heartburn drug) needs special insurance pre-authorization. Called CVS and they won't even deal with the pain medication. WTF?? It's your JOB to fill prescriptions. Some treatments CAN'T wait 5 days!!

Tuesday, June 16, 2009

More side effects - bad

Mucositis: inflammation of a mucos membrane.

Sounds fairly innocuous, but I can assure you it's not. It started out as a couple sores in the mouth - result of a compromized immune system not able to fight off common viruses.

On Sunday it started to become a real problem. Went to lunch with my brother after a bike ride and had a real problem eating a sandwich because of the pain in my mouth. Got to my mom's and raided her leftover Vicodin. Ate them like candy that night trying to relieve the pain. Marginally helpfull.

Had a Dr. visit anyway the next day. They wrote me a bunch of prescriptions for percocet refills, washes to numb the mouth topically, and stronger anti virals.

Went to work for a couple hours and suffered through 2 hours while I waited for the local pharmacy to fill what they could. At the pharmacy I got a call from the Dr's office. My liver function was elevated so I should NOT take any more percocet which has tylenol in it. They had an Rx for Oxycodone that I would have to swing by the hospital to pick up. Got the prescriptions that were ready at the parmacy and used one of the washes immediately, getting some relief. Made it to the hospital in time to get the Oxy Rx.

Headed over to Bethesda to meet my cousin, and fill the Oxy prescription at a local Giant. When that was filled, I drove over to the restaurant. Parked, downed 3 Oxycodones and used the wash again. Dinner was still painfull to eat, and half way through I went back to the car for another wash.

At home I continued with the meds but had a hard time getting to sleep. Finally went down after 12:30 am.

Today woke up before 6 with my mouth on fire. Absolutely the most discomfort I've had in this entire experience including the 2 surgeries. 8 out of 10 on a pain scale. Hit the wash again, and took more oxycodone. Emailed my Dr's office (she has a Nurse Practicioner) and let them know about my pain. Even with all the meds I was not getting ahead of it. She called me back shortly after 8. Told me to up the dosage of the Oxycodone and continue with the wash. Offered to write an Rx for liquid Morphine if my meds on hand didn't get the job done. It took a while but the meds finally got me a little bit ahead of the pain.

Wound up taking a nap between 2 and 4 pm. Needed the sleep but woke up behind the 8 ball again. Everything had worn off. Started all the pain meds and washes back up and took hours to get enough on board that I felt ahead of it again. Mouth pain is the worst. There have to be tons of sensitive nerves and each one of them felt irritated.

Going back to the Dr. tomorow for blood work. If tomorow morning is anything like today I'll hit the pain meds first thing and have my brother drive me down. At this point I'm eating Oxycodone almost like M&M's and having marginal success dealing with this discomfort. If it is bad tomorow I'll take the Morphine script home and hope that works better until this resolves. They DO have me on stronger anti-virals and another medicated wash to treat this topically as well.

Saturday, June 13, 2009

Aftermath - Second treatment

Well, this time it was seemingly a longer "feeling bad" period, but not quite so intense as the first time. I tried to go to work on the Tuesday after (treatments on Friday). My dad drove me in, but before we even got half way I had him turn around. Took a 2 hour nap when we got back to his house. I think I need to turn off the alarm clocks for the duration. If the body wants sleep, it should get it. Felt like I was a day or 2 behind on my "chemo recovery" from the first one.
Also, I didn't do any riding the weekend of this time. The first time that Saturday bike ride may have helped metabolize all the chemo out of the body. I'll have to give it a go next time if I'm feeling up to it. Had a bad riding jones by Wednesday and dashed out for a 5:30 group ride only to have the sky oipen up with thunder and lightning.
Finally got out today for an hour and a half. Slow, but worth it. Hit the spot!
Got treatment partners lined up through the middle of September now. My brother in law set up a shared calendar and folks have been lining up to come on what I call the "cancer field trips."
Headed over to a family gathering shortly. Unfortunately Johnny's family has to stay away. One of his kids just HAD a fever and one currently HAS a fever. Can't risk the chance of infection given the WBC roller coaster ride I'm on. Good news on that front at least. Those numbers were back to the low end of normal on Monday's visit.

Wednesday, June 10, 2009

Treatment - cont V

June 6

Thursday I actually had to leave work early. I had an onset of pretty sever joint pain - lower back, hips, etc. and thought I felt a fever coming on. I don't work in the best part of town so if I had to go to the hospital with a fever it was going to be in my neighborhood. Got to my parents house and the temp was OK so I downed 2 emergency percocet I kept on hand. Joint and muscle pain is a known side effect of the neupogen. I could feel it the next day (Friday) but not enough to warrant any more meds. Asked the nurse in treatment if it was OK to take some advil if it flared up again and she said that wouldn't be a problem.

Round 2 in the books as of Friday. So far so good. No problems with breakfast and the OJ keeps the "taste" down. They did a repeat on the CBC and the neutrophil component of the WBC is still down, so I go back in on Monday for more blood work and possibly another neupogen shot.

Treatment - cont IV

June 3

White Blood cells dropping like flies! The important count, the neutrophil dropped way down just between Monday and today. This is where the risk of infection goes up. Gotta be extra careful and they gave me a booster in the office, neupogen (sp?). Still going forward with treatment on Friday. My LPN told me “The nurses might freak out when they see the blood counts but we’ll make sure they know the treatment goes as scheduled.” On my regimen, ABVD, the best outcomes are achieved when the treatments are given on time, every time. Feeling better and better this week.
Got another bike ride in today. (Thanks Michele!). Bonus of the 1:00 appointment – the rest of the day is free!

Treatment - cont III

June 2

Got my 5 pounds back. I was hovering around the low 160's but after the first round I dropped down to 156. When I went in to see the doc Monday she said "You are NOT on a Diet." Doing my best and back up to 161 tonight.

Another Surgery picture

Another Surgery, another pic.

Last thursday they put an access port in. Small incision on the other side.


Treatment - cont.

May 27:

Bonus! Had good blood work today. They're gonna let me bag the Friday labs!

Treatment - the marathon week

May 26

Last week was 5 straight days at Washington Hospital Center.
Monday: Consult and blood draw.
Tuesday: Bone Marrow Biopsy. This is done from the Pelvis. My Doctor actually performed the procedure. They start with IV Fentanel to “take the edge off.” Had to ask how long that would last since I drove in from work! (Mom followed me home after all was done). Then a local anesthetic at the site. They use a stiff big bore needle to aspirate the bone marrow. Better than the drill I had in my minds eye. Just some dull pressure and burning for the procedure. Then they sat me up for an hour just to watch me before going home.
Wednesday: Fast Day #1 for the PET scan. 8:00 am. They use a radioactive glucose solution to measure metabolic activity so they need you fasted so that the cells suck it up. It’s like a CT scan except it takes about 20 minutes. Worst part is they have your arms over your head. If they are not perfectly supported (and mine were not) it quickly feels like you are being crucified with your arms just hanging off your shoulders. I held out for most of it but they had to talk me through for the last 4 – 6 minutes.
Thursday: Fast Day #2 for the medi-port insertion. 5:30 am at the hospital. That’s basically an easy access port that lives under the skin – accessed by a special needle. Placement is just below the collar bone. Surgical orders said “Left, maybe right.” I reminded the surgeon when I saw him that the left was still recovering from two biopsies, and right would be best. It wasn’t general anesthesia, but as far as I was concerned I was out. Only one hour total in the OR.
With the 2 early fasting days by Thursday afternoon I was done. Crawled into bed by 8:00 pm to get rested for …
Friday: Day 1 of chemo. My twin brother Jon and family was in town and he went down with me. He’s a biologist by trade and basically knew more about the drugs than the nurses. He was all over his laptop looking stuff up in the morning. The treatment is 4 drugs, all given in sequence. 2 by IV push, one 20 minute drip, one 2 hour drip. They loaded me with 2 bags of saline for hydration and gave me a small test injection with one of the drugs in my belly to test for allergic reaction. Burned a bit but nothing remarkable. Good to go. Nurse showed up gowned and gloved with the first drug. I asked “Is that for my protection?” already knowing the answer. “No, it’s for mine,” she told me.
First three drugs went in with no noticeable effects. The fourth one, Dacarbazine, took 2 hours to infuse by IV. This one, on occasion, was a bit “burney” going in the vein. I let the nurse know and she upped the saline to dilute it and it helped a bit. Apparently this will ruin a peripheral vein, as happened to a friend of Claire’s who is currently under treatment for the same disease. We were done by 2 and out by 2:30.
Saturday: Slept in for the first time in a week. Didn’t feel great but felt good enough. Took the nausea meds and called my brother for a ride. I had him captain my tandem for a 22 mile ride through Patomac. He did most of the work and we took about 1 hr. 20. That MAY not have been the best thing to do (more coming up). Later, went out to dinner with him and another friend downtown. Ethiopian. Not the best. Also, MAY not have been the best thing to do. Still feeling tired, taste is off. Bed by 10:00 pm.
Sunday: The bad day. Woke up at 7 feeling about the same. Well maybe not quite the same. Tried to eat a pancake for breakfast. By 9 I was having stomach cramps and had vomited twice. Called the On-call doc and he sent me to my medicine stash for Compazine, which is specifically an anti-vomiting drug. It also tends to knock you out. I spent the rest of the morning and most of the afternoon stretched out on the couch. No energy at all. Around me an army of family was taking care of the kids, the house, me, and everything else. Fortunately, the drug did it’s job. In the meantime, I’m feeling a bit warm and they’re taking my temp every couple hours. Well it hit 101 around 4 or so, just as I was coming out of my Compazine stupor (and taking another go back in). Automatic fever protocol. This was made VERY clear by my Doctor. Go to the ER, where they do blood counts, cultures and Chest X-ray looking for neutropenia (low WBC) or infection. Nothing found, just orders to follow up with my Doc. Today. ER trip was 5 – 8:30. Got home and actually had a bit to eat before going back to bed. You see I was all tired out from laying on the couch all day.
Monday: Woke up. Took my Compazine. In and out until 3. Felt good enough in the afternoon to walk the dog.
Today: Decided to try work. Felt a little shaky in the morning but it worked out alright. Left at 4 to beat the traffic.

This weeks adventures:
Wednesday: Surgical Follow up at NIH, then a trip to WHC for blood counts.
Friday: More blood work at WHC.

I have to say I’ve been very impressed with my Doctor, Vera Malkovska. She’s the chief of hematology at WHC and was highly recommended by the Lymphma team at NCI/NIH. She seems to be a strong patient advocate. Her philosophy about the nausea is that it SHOULD NOT be a problem with the drugs available now. And if it is, call her or her team. She was there Tuesday to perform the bone marrow biopsy, and she stopped by Friday during treatment. Funny story – she said if I go out riding with friends to tell them I might “check out” half way through the ride if I felt tired. She’s from Eastern Europe (Czech?) and wasn’t familiar with THAT colloquialism. I couldn’t help telling her the OTHER meaning of “check out!”

Treatment - cont II

May 22

First day of Chemo

I think I've already figgured out that drug #4, Dacarbazine, is the nasty one of the bunch. It's a 2 hour infusion, diluted by saline, and still can cause pain at the infusion site as it goes in.

Treatment - cont.

May 21

I'll be in the hospital all 5 days this week.
Monday: Consult with my doc.
Tues: Bone marrow biopsy.
Wed: PET Scan - 2 bottles of Barium Sulfate contrast for breakfast.
Today(Thurs): Medi-port insertion (minor surgical procedure) for the Chemo.
Friday: Day 1 of chemo.


May 18

Met with the treating doc this morning. I have a couple of baseline tests this week and then Chemo starts Friday. Every other Friday for 6 - 8 months after that.

Diagnosis - Final

May 13

Got the word today. It's Hodgkin Lymphoma. About what we expected. Treatment sounds pretty standard. They've been using the same chemo drugs for about 25 years on this. Time to move on to the next set of Doctors.

Diagnostics - continued III

May 8
Back home from second biopsy. They got a lot of good tissue for analysis. Worn out and going to sleep in front of a movie. More details later.

May 9

So Thursday I had a second biopsy surgery. The reason for this is simple. They could not get a definitive diagnosis from the tissue taken durring the original procedure. Nothing my surgeon did wrong, just bad luck on what he collected. This time it was performed at the NIH. The surgeons worked closely with the Lymphoma team and the pathologist to develop a surgical plan that had the best chance of getting a good enough sample from the tumor for a definitive pathology/diagnosis. They decided to go through the same incision but lenghthen it and remove some cartilage from between the ribs for better exposure. It was definitely a more invasive procedure. If the first one was like getting stabbed, this second surgery was like getting stabbed with a wooden stake. I spoke to the surgeons in recovery after it was completed and they and the pathologist were very pleased with the tissue that was recovered. They indicated that they collected samples from at least three different areas of the tumor. In fact they communicated with her while I was on the table in just in case they had to take a different approach and go in from the side (thorochotomy).

The recovery was most definitely reflective of a more invasive procedure. The original surgery was an outpatient procedure. I showed up at 11:00; surgery at 1:00, and by 6:00 I was on the way home. This time they sent me to the ICU to recover, and kept me overnight. And it was a LONG night. The pain was significant, and they had me on a continuous morphine drip plus an on demand pump I had a button for. That pump would give me a dose every 6 minutes if I hit the button and I was watching the big clock on the wall to make sure I hit that button on the minute.

The real dificulty in recovery began when my catheter (sp) fell out. I discovered last time that IV narcotics make my bladder clamp down, so even if it's full, it won't release. So not only did I have the discomfort of the surgery to deal with, but I could barely pee, adding a second discomfort. At some point after midnight it got bad enough that I agreed to let them put in antother catheter. My night nurse tried, with no success. Then some of the back up ICU staff tried, also unsuccessfully and with a bit of bleeding as well. At this point they paged the surgeon on call (NOT the one who had done the procedure). He wanted to try again but I had had enough. The first two hadn't worked, and I began to feel like I was working with the "B" team. He went over the various risks of not being able to drain and such trying to convince me but I wasn't having me. Based on my previous experience I told them I wanted to get off the IV morphine and also get on my feet and start walking around. Their way hadn't worked, and I was insistent to try it my way at this point. So they turned off the continuous morphine drip and let me up to walk around. I had a LITTLE success afterwards, putting out a small amount. It wasn't close to empty but it got me a small amount of relief. The nurse wanted me to try to fill her beaker but I told her I was lucky to get anything out, and my comfort was gonna take precedence over her record keeping.

At this point I tried to get a little sleep. The problem now became all the alarms they had me hooked up to. My oxygen saturation sensor kept dipping below 90% which would trigger a bell. I suspected it was not working great, but it could have been my depressed breathing from the morphine so it was hard to tell. Every time I would get close to a cat nap the thing would go off. At one point they put me back on the nasal oxygen. Then the monitor dropped below 80 and I knew something was wrong with it. The nurse changed it and, surprise, my oxygen saturation went back over 95% and stayed there for the duration.

Around 7:30 they finally took out the morphine drip for good and disconnected me from the IV. They switched me to percocet for pain. I had been really laying off the pump for most of the night since I know it was contributing to my bladder problems. Now I was able to get up at will and wallk around, but was still barely moving any urine. When my surgeons came by in the morning we discussed the situation and he indicated that at some point they would have to look at retrying the catheter if things didn't improve. At least there would be a urologist available now to handle it since the nursing staff had such a dificult time of it. My belly was really disteded from the full bladder and they gave me a bladder volume test (some kind of ultrasound machine) that showed I had about a liter retained. I was just about resigned to the catheter when things started to move along It wasn't emptying but I was passing enough volume to get some relief. Things slowly improved throughout the mornig and by lunch time I was in pretty good shape. The last volume measurement they did was nominal, about 14 cc's. I wanted to say "I told you so" to the whole nursing staff there.

After that there were some requisite follow ups to do. Surgeon had to remove a small drainage tube from my chest; then a follow up chest X-ray to check the inflation of the lungs. The surgeons were finally able to OK my release around 5:00 pm, but at that point no one could get ahold of the Lymphoma service to OK my release since I was officially under their care. Even at the NIH, government people shut it down early at the end of the week. Around 6:00 they finally called back with the OK. Got discharged with an RX for percocet and was able to hit the road home with my mom. We got some carry out and got back to the house close to 8:00. Ate a little, took my meds and hit the bed exhausted. Tried to watch TV but I could barely keep the screen in focus. Wife and kids came back from a piano recital shortly after 9:00 (inconvenient timing!) so I was able to greet them before I passed out. Slow to get out of bed this morning but I'm starting to feel normal.

Here's the lates incision picture. Like the last one, only bigger.

Second incision

Funny diversion

April 2

Quote from a motorcycle board I frequent:

'I'm gonna give House and Wilson a call and see what they say."

My Response:
"I've already got Wilson on the case."

Diagnostics - continued II

May 1

So this week I had a surgical follow up and spent some time at NIH. Follow up was fine. No news is good news there. Suburban had trouble with the slides and sent samples over to NIH for a more “expert” pathology. While waiting for those results I spent half a day at the NIH Lymphoma clinic. Got the workup, blood tests and spoke with their leading Lymphoma research Dr. He said it’s either Hodgkins or, well, not. Don’t remember the specific name of the alternative Lymphoma type. If it’s Hodgkins he’s set me up with a referral to Washington Hospital Center, a colleague of his he highly recommends. If it is NOT Hodgkins, they have protocols that fit and can treat me in Bethesda. He strongly suspects that it IS Hodgkins. We expected the final pathology results today.

Well, got the call today. The pathology results are inconclusive. They need to go back in to get a better (larger) sample. Spoke with the coordinating RN tonight. She was starting to get things lined up. Monday will be a virtual bronchoscopy, which is a very high resolution CT; and a pulmonary function test. Wednesday will be a consult with the Thoracic surgeon from the NIH lymphoma center. Essentially, they are taking the diagnostic responsibility on full. They are gathering as much info as possible before the next surgery, which I believe will be video camera aided.

So, the news I thought I’d have today from the biopsy did not materialize. The diagnostic process has been reset to Monday morning.


April 27

Discovered a large mass in my upper anterior chest. 15 X 10 X 6 cm. Pretty large. Growing around my bronchial tubes and some major blood vessels. Initial presentation is suggestive of some type of lymphoma because of the location. Biopsy a week ago included a bronchoscopy. They did a fluid wash of my bronchial tubes and analyzed the fluid for any evidence of lung cancer. None was found. They also took a piece of the mass and the pathology lab has been trying to figure out exactly what it is. The frozen section (i.e. quick and dirty read) indicated some sort of abnormal lymphoid tissue (read Lymphoma?) As of Friday they were having a hard time at the local hospital (Suburban in Bethesda, MD) so they were going to send the slides over to the NIH for some pathology assistance. That's where we are now.

I see my surgeon tomorow for a surgical follow up. Not sure if he'll have any info on what sort of cancer this is. Wendesday I have an appointment at the NIH for evaluation as a potential candidate for their clinical trials. Hoping to have some more answers by then.

Right now the indications are that it's some kind of Lymphoma. Many are very treatable. Unfortunately the Dr.'s have not arrived at a definitive diagnosis.

Oh yeah, now that I've run out of percocet my cough is coming back. Fortunately I'm healed enough it doesn't feel like I'm getting stabbed in the chest. Sneezing is still a little bit of an adventure.

Diagnostics - continued

April 25

No answers yet on the biopsy. Hospital pathologist is sending it across the street to NIH for some help.


April 15

Biopsy Tuesday. Right now everyone thinks it's a Lymphoma - very treatable. Guardedly optimistic.

April 22

Biopsy done Tuesday. Nothing in the lung (good). All signs pointing to a lymphoma. Expect to have final pathology results Friday.



April 11

I'd had a chronic cough since January. I was diagnosed with walking pneumonia back then. No chest X-ray. Nor on the follow up 2 weeks later. The cough never went away but I was recovering my strengh and back on the bicycle trying to get my form back for mountain bike racing. I could tell my form was off, but attributed it to being sick for almost the entire month of January. Cough got worse recently so I went back to the doctor to have it checked out. THIS time my Dr. ordered an X-Ray. The rest is history.


April 11

Just found out I have a tumor the size of a softball in my upper left chest. No Joke. Went to the Dr. because I thought my pneumonia was coming back. This time he ordered a chest X-Ray. That led to a CT scan that revealed the mass. Specifically 9.8 X 5.6 X 14.6 cm. First question to the Doc: "are those centimeters?" Don't know much more than that right now. I have a surgical consult Wednesday to plan a biopsy and we'll take it from there. At present it seems to be isolated to the one area.

Wednesday, June 3, 2009


I've been sharing my experiences among 3 different distribution lists. It's time to get it all in one place. I'll be gathering up my email updates and consolidating them here, along with some Hodgkins info and links I've found helpfull.