This is my blog about my medical journey through Lymphoma. I was diagnosed April 11, 2006. Currently, I am in remission with a high chance of cure. It was non-Hodgkins Lymphoma, specifically Diffuse Large B-cell Lymphoma. The tumors ended up being in my hip, my sternum and my backbone. I have left the blog up for anyone to read, and I also use it to remember all I went through. Because of all the drugs and stress, some of it is foggy, so it is fun to go back and see what I went through!

Sunday, July 30, 2006

Broken Chair

I had a portable folding rocking chair. It is now broken. I was sitting on it playing xbox 360 and I leaned my fat self to the side and a couple tiny pieces broke off and shot across the room. I duct-taped it back together but now it does not fold and so it is no longer portable. It is just a matter of time before my 20 lbs of extra mayo rip through the sinews of the tape and I fall again and my brother points and laughs. That is the first chair I have broken just from sitting in it.

This last weekend I had some friends over and I was photographed doing the 'moose', that is where you lift up your shirt and put your hands up like horns on the upper sides of your chest so that your belly-button is the moose nostril and then you puff out your belly. My moose had a very big nose.

Cancer-Spikes

Friday we put together our new toy we got at Sacred Heart Prep (I am the varsity coach there). The new toy is an Aircat: a ball tossing machine that uses air pressure to power the tossing mechanism...it can set to a very consistent location and it is so cool. It has a remote control, so I can push a button to tell it to set a ball. This is one of the coolest things I've ever been around. Since it is the coolest thing ever, I HAD to go for some real spikes. Even though my vertical is somewhere around 6 inches now (it used to be a lot better) I was able to hit some really hard cancer-spikes and it felt great. Granted it is on a girls height net, but they were still some decent hits. I felt no residual pain in my hip, so my doctors say this is ok for me to do.

My cough is slowing down and my middle finger rash is pretty much a goner. So I think I'm going to be clear to get my last injection of chemotherapy this Wednesday, August 2 - the day of the start of my vegetable eating unfortunately. I have an appointment with a really good radiation oncologist tomorrow, Monday. He will give advice on how we are going to shoot me with the radiation. We are sure to at least shoot my hip, but we are not sure if we are going to shoot some radiation through my sternum into my backbone too. We will have to decide if the trade-off is worth it; that is, we will see if the benefit of irradiating my bones is worth the downside of all the organs it will shoot in the process; some radiation will go through my heart and some of my other somewhat important inerts.

Monday, July 24, 2006

Antibiotics, Enhaler and Steroid Cream

I called the advice nurse at Medical Oncology this morning to ask her about my few minor medical annoyances: my raspy cough, a bumpy rash on my left middle finger (complete with 18-20 pustules), and my funky toenail. It is still around my nadir (the low blood cell count time), so they are concerned about my cough. They wanted me to come in, so I left coaching at noon and went in for a blood draw and a doctor visit. I was prescribed antibiotics and an enhaler for my cough, and some steroid cream for my rash. I had to point my middle finger at several nurses and my doctor to show them my rash and I loved it -I had secretly been wanting to do that because of the chemo they subject me to. I was told that my toe will have to be ugly and gangreen-looking until after chemo. I asked them to weigh me with their official scale and I am at 202 lbs. So, I am content with the absurdity of my weight-gain. I gained almost 20 lbs since my diagnoses. My oncologist said it was ok if I want to now diet to lose it, as long as it is slow. I am going to start working on it this week, but August 2, my last day of chemo, will be the day I set to make it a point to eat a balanced diet. By balanced diet, I mean MY version of a balanced diet, which will not include tofu, soy, or any other hippy food. I am just going to start eating vegetables and cutting out most fast-food.

Man's Search For Meaning got me into reading more about psychology so now I am reading some of Freud's stuff. He was into dream analysis. I now have spawned an unconcious train of thought in my brain that evaluates what I am thinking while sleeping. It doesn't work very well because the extra-attentiveness to my night-thinking is keeping me awake.

Sunday, July 23, 2006

Nadir at Madera/Scaring Children

This weekend falls on my nadir (when my blood counts dip). I went to Madera, strangely enough, to an almond orchard and hung out with friends from high school. It was really fun. We went to a lake near Madera and it was 116 degrees outside. My head cooked like a hard-boiled egg. I put sunscreen on my bald egg of a noggin, but if I did catch any skin cancer, I am pretty sure my final chemo on August 2nd will take care of it. As I sat in the lake, I thought out loud "I wonder if my doctors would approve of me sitting in a lake during my nadir". I am pretty sure lakes are big puddles of swarming pathogens, like people in airplanes. Whatever- the lake was a great relief from the atmospheric oven we were baking in. As we got out of the water, each piece of body that exitted the surface was immediately dried by the heat and then redrenched with sweat.

At the house where we stayed, I met this really cute 2 1/2 year old kid that took a liking to me. She was shy at first, but eventually got to the point where she would come sit by me and let me have a piece of her blanket to cover up part of my leg, which I hear was a serious compliment. While we were sitting there, I took my hat off and immediately when she saw my bald head, she shot up immediately, scared to death, and ran away crying profusely. This will be recorded as the most hillarious reaction to my cancer yet. I never thought I'd get to the point of scaring children like I'm some bald alien limping monster. Don't worry though, once I put my hat back on we were cool.

Friday, July 21, 2006

Cancer Belly

I caught a glimpse of myself in the mirror this week and what I beheld caused me to snicker and point. I have a marsupial pouch protruding over my pants. It almost looks fake. I would be a little self-conscious about it normally, but it is large enough now for me to actually be proud of it. It is my precious. The really interesting fact about my belly is that it has not required me to get larger pants, my belly just enlarges above my waste line, leaving the normal 34". After I get an official weight of over 200 lbs I am going to start eating right and losing it again.

I've been jumping a little bit and moving around while coaching. I am realizing that it is going to take a while to rehabilitate my hip because my hip does hurt if I don't rest it. Part of it is surely muscle fatigue, but I do think the bone is a little messed up. I have a little bit of a cough today, and that is not good, because today is the beginning of my nadir point (the 10-14 days of low wbc's). I do not feel sick though, so I think I'm good to go. I do, however, feel like Jabba the Hut. I was telling the other coaches that at my camp that I am running. I end up having to sit there and have everyone else do the coaching, all while I am propping my fat-self on my chair.

Saturday, July 15, 2006

197 Pounds

It seems almost too quick to be finished with my fifth round of chemo; but, I only have one more left: August 2. Wednesday I weighed in at 197 pounds, the most I have ever weighed. I think I am going to focus on putting on that last 3 pounds to hit the 200 mark. The sad thing about that weight gain is that it is in spite of the plethora of dead cancer cells leaving my body and plenty of muscle cells going along with them, leaving behind mostly fat cells and water molecules.

Thursday I coached half of the day, and Friday about 2/3 of the day, including a time where I actually jumped and spiked the ball over the net. It was a girls' net, but I hit it pretty well and landed without pain. We even played "Queen of the Court", and I was proudly a queen for a good chunk of time. Pretty good activity for a day or two out of chemo. I didn't vomit, and we had backed way off of the medications.

Wednesday, July 12, 2006

Third PET Scan Results

I just got my report online from the PET Scan I took today. I don't know why they released it so soon...usually I can't read them until they talk to me. When I clicked on the link to read my report, I got a twinge of nerves - so despite my positive attitude, I am still human. I pasted the report and impression part of the read from the doctor in the nuclear medicine department. In case you actually read it, use the following vocabulary words to decipher it:

Hypermetablism: This just describes when the cells are eating a lot of the glucose tracer. Cancerous cells do that, as well as other fast growing cells in the body. A "hypermetabolic node" would be a lymph node that has cancer in it.

Uptake: This is talking about uptaking glucose. The "diffuse uptake" in my skeletal system, as opposed to "spotty uptake", means that I have unusually high glucose uptake throughout my entire skeleton.

Lesion: Somewhat of a euphimism for "tumor".

Granulocyte: A class of white blood cells. Neutrophils is one of them, they fight infection. I get my granulocytes boosted with Neulasta.

metastatic: cancerous


REPORT:
1. Skull/Neck: No hypermetabolic nodes are seen.
2. Chest: No hypermetabolic nodes in the chest and no
abnormalities.
3. Abdomen: Liver and spleen are normal. No
hypermetabolic nodes seen.
4. Musculoskeletal: There is some diffuse uptake in the
skeletal system but this is probably related to the
patient's chemotherapy and granulocyte stimulating factor.
I see no lesions in the right hip, sternum or in the
thoracic vertebra. Study looks really similar to his prior
study that was reported on 05/24/2006.
IMPRESSION:
1. PET CT F18 FDG whole body scan looks similar to his
previously normal study of 05/24/2006. We see no evidence
of hypermetabolic lesions in the musculoskeletal system
consistent with metastatic disease. The right hip in
particular looks normal. Sternum, thoracic vertebra are
normal. There is physiologic uptake in general in the
skeletal system related to the patients chemotherapy and
granulocyte stimulating factor.
2. There are no abnormalities seen within the T8 vertebral
body or sternum. Study is essentially normal.

English version: No tumors seen in any of my bones or in any of my lymphatic system. They are able to see my bones being super active, but it is expected that my bones are super active because they are busy producing extra white blood cells because of my white blood cell booster. So, good results as expected.

Tuesday, July 11, 2006

Third PET/CT Scan

I left the SHP camp early today and went to get my radioactive isotope squirted into me and to be shoved into the donut machines. This, I guess, is a double-check that there is still no perceivable increased metabolism of my evil, mutated lymphocytes. Again, I had to put on the three-armed gown that was really short. The technicians are really bad at finding my veins, so they had to root around a little bit to start my IV. This time I felt no uneasiness because I am a professional lab-rat. The hardest part of the ordeal was the fact that I had to lay still for 45 minutes with my arms raised above my head. Consequently, my arms fell asleep like never before - to the point of pain - and when I stood up afterwards they dangled at my sides for a little while until some blood returned to them. My left arm didn't work for about 5 minutes, so I had to take my three-holed miniskirt off with one arm while laughing at myself because I looked really stupid.

Tomorrow is yet another chemotherapy (Round V: Taking the Dead Cancers From Among the Village Ruins and Killing Them More and More Repeatedly and Redundantly Again and Again). I am getting pretty good at receiving the chemo, but I am noticing the cumulative effects of it because I do get much more fatigued. This is a serious hindrance to my coaching style, since I find myself needing to sit on the sidelines some of the time. I feel like a huge wuss, but then I realize I have Stage IV Lymphoma, then I feel cool again.

Sunday, July 09, 2006

The Vacation Is Over

Today I landed back home and it is time to get down to business. I am running the Sacred Heart Prep camp this week, where we will have at least 40 kids in the morning session and 15-20 in the afternoon. It runs from 9-5, Monday through Friday. This week I also have plenty of fun medical junk to take care of, like: physical therapy tomorrow (Monday) at 7:00am, PET/CT scan Tuesday at 2:00pm, the wonderful chemotherapy all day Wednesday, and the Neulasta/Zometa treatment on Thursday (probably at 4:30pm). Which puts me out of running camp on Wednesday, and I will possibly be a big jerk to all the kids on Thursday (not really, but I might throw-up on them by accident).

I know that this is kind of pushing it for me to be running this camp, but I am passionate about my job, so I am just going to try to do it. I am giving myself a break though if I don't run the camp to my specifications...I will pull a cancer-card.

Wednesday, July 05, 2006

Wedding Changes

This trip to Texas I am staying with my friend, Chris, who is getting married this weekend. I went downstairs when I woke up (at noon) and I found Chris still at home. He was going to go to work, but found out this morning - 3 days before the wedding - that the place where he was going to get married this Saturday is not available as planned, and he had to change his wedding date to Friday. I neurotically laughed in his face, I am mentally sick like that. He laughed too. We were laughing because laughter really helps you get over ridiculous circumstances. He spent a long time calling people today, and he'll have to do more when he gets back this evening. He and his soon-to-be wife are handling it really well, and that is all you can ask for. The wedding is going to be beautiful because they are serving barbeque and playing country music and the wedding party is wearing flip-flops.

My only problem now is that I have this funky big black toenail and I have to wear the flip-flops. I will just tell people that it is toe-lymphoma and they won't be able to make fun of me.

[If you are anyone from Chris's wedding checking out my blog, just so you know, it is at the same place and same time, just on Friday instead of Saturday.]

Tuesday, July 04, 2006

Another Great Plane Ride

Everyone scared me to death about all of the germs in airports and airplanes, so I began my journey to Texas yesterday as an obsessive-compulsive, neutropenic germaphobe. Neutropenia is when your white blood cells are low (below 2.0, I think). When I entered the airport, I immediately began to try to create the maximum space between me and every other potential contaminator, and I kept track of each of the things I touched with my hands. Of course, my cancerbrain forgot the hand-sanitizer I was supposed to bring. My focus of the day was the contemplation of what exactly I should try to avoid, and my conclusion was that I should try to avoid bodily fluids from other people, most often that means specifically avoiding their mucus. There were other bodily fluids I had to avoid too, but I'll get to that later. For now, we are going to go on the germophobic assumption that everything you touch that does not belong to you must have had someone inadvertently smear their mucus accross its entire surface area, and therefore, you must avoid touching it with your hands and then touching your mouth (or touching something on its way to your mouth), because that mucus must contain swarming flagellar pathogens swimming throughout it ravenously hungry for a human being's inerts, whose collective hope in life is to encounter an immune-suppressed germaphobe and rapidly eat each of his cells from the inside out causing him to spontaneously erupt into a pile of plasma, within 10 seconds of contamination, right there where he sits in his tiny airplane seat. To get infected there must be a critical mass of ingested snot globules, which I am going to assume is about three globules. The less things you touch with your hands the better, and the less times you touch your mouth with your hands the better. The exception is that you can touch anything that belongs to you, those things are only covered in your own mucus, which when ingested into your own body just gets reused to coat the lining of some internal organ, or to coat some other thing you come in contact with for someone else to touch and ingest so that they get a chance to see whatever you've got goin' on. Any pathogens that are in your own recently eaten mucus will just join their friends (say, in your hip) and continue with their village-building and body-eating.

The first things my hands touched were the trays that hold your stuff as they go through the x-ray. Once through the x-ray, I went to the shop and perused the selection for an interesting book. Only one book was worth touching, I looked at the back, but decided not to get it. Then I touched one pack of chapstick and a water to carry to the checkout line. Then I impulsively touched a bag of beef jerky in a moment of weakness, which could have seriously been my undoing because later I had to touch all of the beef jerky in the bag with my hands as I put them (along with many globules of foreign mucus) into my mouth. Then I touched the money - the $16! - for the chapstick, water and beef jerky. Then I touched the air-spicket in the airplane, from which shot millions of globules of recycled air from decades of flights, to turn it off.

My seat was chosen: an aisle seat near the wings. There were two empty seats next to me. As luck would have it, an attractive girl of my approximate age chose to sit next to me (coincidence? I think not, I think she likes bald guys). Of course, I allowed the normal introductory period to lapse before saying anything to her (primarily because I did not want my hand contaminated through her mucussy handshake), leaving us in awkward silence the rest of the flight. That turned out to be really good though, because about 5 minutes into the flight, she ended up coughing up junk from her lungs. I figure if we were talking, it would line up our mouths and that would open pandora's box of mucus partical exposure. She did cover her mouth, but she was the only one on the flight coughing! Why, oh why, did the ONE cougher have to sit next to me. And then I think, should I move? If so, should I say something? How weird would it be if I just got up and moved? What does she have in there? - probably avian flu...or maybe tuburculosis...or maybe a new strain of man-eating, mucus-swimming protozoans. There is one seat between us, maybe the globules cannot fly that far? If I move, will I just go to another place that has even more germs? Maybe I should just stick with her mucus, since I've already been exposed to it, yeah, that's what I'll do.

For each cough, I mentally cringe. I decide that this predicament is hillarious, so I take out a spiral to begin writing down the funny stuff so I can put it in my blog:

I estimate 2.5 feet between me and the bugar fountain. How far can those cough particals reach? If snot flies in the same pattern, as say, a volleyball, then it will follow a parabolic pattern. I figure any projectiles initiated at a flat plane exerted with normal force of a simple cough, the mucus should fall safely on my shirt sleeve and pant legs, as well as leaving a glaze on the seat between us. Just in case an imperceivable mist is produced I will hold my breath for 20 seconds. She is covering up her mouth, so, it is definitely all over her hands, but can tiny particals shoot out the side and land near my mouth, like on my lips or something? I didn't FEEL anything land there...or did I? Now I am making myself crazy.

I get up to go to the restroom, because I had downed a liter of water. I touched the outer handle, inner latch, the lock, the cold water button, the soap button top, and several paper towels. Back to my seat next to the cute gushing fountain of airborne pathogens.

I wonder if she wonders what I am writing about...and furthermore, wouldn't she be horrified to figure out I am writing about her and her mucus spreads? Well butt out snot queen! You're the one spewing forth chunks of goo, threatening my neutropenic state!!

I made it off the flight without the volcanic internal combustion, but I had one more connection to make in Phoenix. Of course, this pale-looking guy comes and sits down in my row (accross the aisle). In a minute, he starts vommitting on himself. He did not avert his head or even attempt at a barf bag. I stood up and moved seats, no regard for rudeness, I just had to move. I sat in my new seat and tried not to think about how many germs I came accross.

In the airport in Texas I went to the restroom and washed my hands until 3 layers of skin came off. Chris picked me up and I ate at Whataburger and it was delicious. Today I will have actual barbeque, which means brisket, cooked up, and I will sit in the blow-up kiddy-pool in the backyard with my friends. True redneck fourth of July.

Sunday, July 02, 2006

Cancerbrain Fails Me Yet Again

I went to do my online checkin just now to print out my boarding pass to leave at 4:00 today. However, I was not able to checkin yet, because it is not 24 hours before my flight. How could that be? Well, apparently I don't leave until TOMORROW at 4:00. I am thinking that the "cancer-brain" phenomenon is an actual thing. I have been planning to leave today for weeks.

It is probably better that I leave tomorrow...giving myself and the pills one more day to squelch my mucusses's bacterial colony.

Man's Search For Meaning

After taking my first antibiotic pill (this one was much smaller than the huge ones I took during my first round of chemo), I laid down and took a nap. I awoke to find that my cough had died down to a comfortable 1 hack per minute. This 1:1 ratio is pretty good considering I was at about 4:1 prior to the pill. Also, the volume of tainted mush I was bringing forth has decreased significantly. The other health side note is that I have had some hip discomfort lately, but it is actually on the side of my hip, which is actually where my femur is. This likely is due to muscle fatigue and a slightly abnormal gait (not confirmed by anyone with actual credentials...just my own professional opinion). I really should be doing my physical therapy excercises. Once I woke up, I finished off a good read: Man's Search For Meaning, by Viktor Frankl. I loved it. And now, since I slept all day, I am awake at 3:45 and I'm not really tired, then that led to me starting to briefly write about the book I read, and that led to it getting too involved and long and not brief, and that led to me taking it out of this blog and writing this run-on sentence instead. If I finish my tome of a blog comment in this other word document I have open then I'll post it later so you can hear what is going on inside of my brain in addition to what is happening in my acetabulum and bowels.

Saturday, July 01, 2006

Impeccable Timing

I decided to get a cough this last week, that turns out to be somewhat of a hacking cough today. The doctors needed to know the color of the material I coughed up, but I will spare you. They are putting me on antibiotics because the blood test Friday showed that I was somewhat low on white blood cells. There are several different types of white blood cells, but the most important type are the neutrophils. They are the infection-fighting white blood cells. My neutrophils are enough that they are not that concerned with me flying to Texas, but they are low enough that they want me on preventative antibiotics.

The reason I say impeccable timing follows from the convergence of these three factors:

1. Today is 10 days after chemotherapy, called the "nadir" point. 10-14 days is the typical nadir for the blood cell count to dip, and it is when I am most susceptible to infection.

2. I got the mucussness from Reno. The cause of the mucussness may be alergies, and not an infection, but the existence of the mucus in my lungs and face are breeding ground for infections.

3. I will be flying to Texas on a commercial airline and therefore exposed to other people that may have their own contribution of bacterial colonies that would like to live in my sputum.

But the doctors approve, I get to go to Texas. There is a slight risk, but not too bad. I will keep checking my fevers and should be flying out tomorrow.