Breast prosthesis

I have got to ask other Breast Cancer women. How often do you wear your prosthesis? Why do they even make nightgowns and PJ's with a pocket for the prosthesis?

Even if you do wear a prosthesis during the day what is the point in sleeping with it/them?

I bought a good quality set of the prosthesis. In the year and a half I had no boobs I only wore the prosthesis three times. They were heavy and uncomfortable to say the least. And lets not forget hot.

There has got to be women out there like myself that choose not to wear the fake boobs. I am all for looking your best during chemo and the other treatments, but I think wearing the prosthesis is like wearing a girdle or corset, torturous.

As we Baby Boomer, and for some our daughters, are facing breast cancer we need clothing that is functional, stylish, feminine and comfortable. Confident Clothing Company has created a line of clothing that fits into today's active lifestyle.

In addition to being great looking Confident Clothing Company's designs are especially versatile, so that you get more bang for your buck. In today's economy that is a necessity. The clothing can be dressed up for an evening out, it can be worn during exercise or just going about your daily activities.

The main reason I designed the Cool Chemo line of clothing was to provide a functional and feminine solution to what to wear immediately after surgery, during chemo and or radiation and after reconstructive surgery.

Being a personal trainer and trying to maintain my phyiscal fitness during my cancer experience I discovered immediately that the prosthesis and wigs were not for me. The only clothing that showed up when I searched the internet for breast cancer clothing was all the pink ribbon stuff. So, I could find clothing to support the breast cancer cause, but not for the women that actually had cancer. How crazy is that!

I would really like feedback from you, as to if you wore the prosthesis or not. Please forward this to other women that you know are dealing or have dealt with this issue and have them also email me at kathy@confidentclothingcompany.com to share insights about what you wore and what you felt was missing.

Confidently,

Kathy Adams

Confident Clothing Company

www.confidentclothingcompany.com

Thank You

I will update this blog from time to time to let everyone who finds it know how I'm doing. For now though I'd like to close my active treatment blog reports by saying "thank you".

First, I thank my wife Nancy for putting up with "Cancer Dan". She successfully went through breast cancer treatment 4 years ago. Together we're now "two-time cancer ass kickers".

Second, I thank my kids, family and friends for giving me all of 10-seconds of sympathy and then going back to treating me like a normal person (who has no hair and gray skin.)

Third, I thank all the medical professionals, care takers and even the insurance company. I know it's your job but you all gave me much more than I'm sure you were compensated for. You cared about me. I noticed and appreciated that very much.

Fourth, I thank everyone who has walked the cancer path in front of me. Thanks for publishing your treatment blogs. I hope those of you who come down the cancer path behind me find my blog as helpful as the blogs I found and read when I first discovered I had cancer.

Last (but not least), I thank God. Prayer and reflection got me through this ordeal. When things seemed most bleak I would simply think about my favorite line of scripture from Jesus' "Sermon on the Mount", "Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6:26.

I'm Cured?

My primary oncologist says, "You're cured!" I guess that's the deal with Hodgkin's. Like testicular cancer & childhood leukemia, Hodgkin's is one of the three "curable" cancers.

My radiation oncologist says, "I use the 'cured' word pretty cautiously". It doesn't really matter to me - I'm just glad I'm no longer in active treatment. Treatment is a huge grind on your time and while you're not being treated you're feeling tired and/or "like crap" all the time.

The elderly "church ladies" are thrilled at my recovery. (Like it or not, when the church ladies discover you're "afflicted" they add you to their official daily prayer requests and you become part of their "prayer job". ) When they ask me on Sundays how I'm doing I assure them that I am in fact cured (and thankful and appreciative). One in particular, Irene, delights in taking me by the arm and introducing me to others as a "walking miracle". She's right.

Whether I "stay cured" for forty years or just forty weeks is not up to me. What's up to me is to live my life now like it will be both.

Radiation Done!

The 17 daily radiation treatments are over - and in this season of Thanksgiving, I am. Depending on who you ask, for all practical purposes, I'm cured.

Compared to chemo, the radiation treatments were quite anti-climatic. With each of the eight bi-monthly chemo treatments I got get four hours of people feeling sorry and being nice to me. With chemo it's two quick, 10-second zaps after 15-minutes of waiting for my turn on the machine.

The biggest difference between chemo & radiation is the setup before the first treatment. With chemo there's no setup. With radiation it seemed like a month of setup as I had to meet with a radiation oncologist. Then I had to get measured and fitted to a Styrofoam form to hold me still while being radiated. Then I had to go through a trial zapping. It just seemed to go on and on before my first actual radiation.

I've posted a stock web photo of what the machine looks like. The technicians position the machine above you using lasers lining up to little tattoo dots they put on your chest and then zap you from above. The whole machine then rotates around and then you get zapped from below. All the while you're lying on a Styrofoam form on a table.

The worse part of the treatment is the skin area that gets radiated (for me it was the upper left quadrant of my chest & back) gets pretty crusty for about two or three weeks after the treatment is over. (Kind of like a party favor!)

The people at the radiation treatment center were very nice though from the technicians, to the nurse and my radiation oncologist, Dr. Washington. They gave me a nice completion certificate after my last treatment.

$400 a month

So what did I do for health care in the interim...good question george.
Since I left the Daily Star in Tucson, I have paid $400 a month to Cobra for continual coverage. Oh yeah, that first payment was $800.
Months of coverage included my one blood draw back in September.
The Cobra people are merciless. If you're a day or two late on payment, they threaten to halt your coverage. As if any patient would be late on a bill if she or he could help it...but the folks at Cobra feel the need to state at the bottom of every bill: "If payment is not received by the last day of the month, coverage will be cancelled and will not be reinstated if late payment is received."
Since I ended coverage, they continue to send me paper work.
Though I'm glad to be out of their grasp, I'm sure it won't be the last time I deal with Cobra.
We need a new order when it comes to health care in this country.

got my health care!

hola hola hola
After working three months for Dean Singleton (the L.A. Daily News), I now qualify for health care benefits.
Within a day of the paperwork appearing on my cluttered desk in the newsroom, I filed everything with the human resources folks. Then I hounded them to get me my passwords and identification numbers and whatnot.
Now that I'm covered under Anthem Blue Cross, I have my choice of literally thousands of oncologists in the L.A. area to visit. That's about all the website gives you.
But I can't tell one from the other, though I've a list of two oncologists with a background in urology.
now what?
I've called my old oncologist, Dr. Fredrick Ahmann, and asked for a recommendation. I've also left a message for Adrian to get his oncologist.
I'm due for a CT scan and blood test.
There is nothing inviting about the health care industry.

Consuelo Aguilar

Read more about Consuelo.

This column was written by Roberto Rodriguez last week in the Tucson Citizen.

Rodriguez and his wife Patrisia Gonzales write the Column of the Americas.

Latino Fest III with another survivor

Sometime around 11:30 p.m. on Saturday, I surveyed the situation.

hundreds of punks were piling through a narrow door and out of a community hall on the corner of Whittier Blvd. and 10th St. in Montebello. Greeting them was a small phalanx of police officers anxiously gripping their batons and passing around riot helmets. a helicopter was circling overhead, spotlight shining down on the scene, ordering us away from the hall.

immediately to my right was consuelo, who only 24-hours earlier, had been vomiting uncontrollably at the veterans hospital in Loma Linda. A few feet away young nate was snapping photos of the police with his i-phone.

I'd be lying if I said everything was calm. I was expecting a riot. an officer was roving the street with a shotgun in hand. i couldn't tell if it was loaded with pepper spray balls, wooden doyles or worse. in anticipation of pepper gas, I handed consuelo my bandanna and instructed her to dowse it with water and cover her mouth. a lesson I learned from the 2000 DNC protest. I wandered over to nate and gave him the same warning. then I wrapped an extra t-shirt around my neck and put some water on it.

it was consuelo's first punk show. it's now legendary. it would've been Crudos third reunion show. the night was nearing the hotly anticipated headlining hour when police arrived.

Just a few days earlier, consuelo had begun radiation treatment for her cancer. that's why she'd been throwing up the night before.

I never had radiation treatment. however, both paul and adrian went through it. in fact, paul was at the same place where consuelo is now being treated.

but I did go through chemo. and I can say there's no way I would've ventured to a punk show, muchless a crudo's reunion sure to draw hundreds of people, a few days into treatment.

Consuelo is tough like that.

nate and I had spent the afternoon with her family at their little rented cottage just a few blocks from the hospital in Loma Linda. I jokingly mentioned joining us at the fest. she had planned to go to the son del centro show I was at the night before, but her sickness kept her home. not long after I mentioned the show, she got up from the couch and disappeared. I started to wonder where after i hadn't seen her for about ten minutes. then she emerged from her bedroom, changed out of her comfortable sweats and in an all-black outfit that included a black skirt with the silhouette of a zapatista along her waist.

five hours later, back at the show, nate and I, separately wondering to ourselves how we were going to explain to her parents taking their patient daughter to a show that erupted into a riot not far from the spot where Reuben Salazar had been murdered by police decades earlier.

thankfully it never happened. but I'm glad she came.

here's to the new face of cancer survivors: consuelo aguilar

So much more to life...during Chemotherapy!

Chemotherapy can leave us with many different feelings -- what to do ? what to do? Depending on how each of us feels it is important that on the "Good" days, we grab the time to do things that make us feel good. I love massages and acupuncture. I set up appointments for massages, facials, and acupuncture sessions. I even had a manicure and a pedicure. I frequently went to Bloomingdales and went to the MAC counter and had the technician help me with makeup ---I lined my eyes, used color to pop my eyes, got make-up, blush and lipstick and the result was startling.


Although I tended to wear black and grey, I used my head scarves to bring color to my wardrobe. Remember, this is what I did when I felt "Good". Those days usually came at the end of the treatment period....right before I was scheduled to get my next chemo treatment. So, just as I was feeling and looking good...that time was here. But I was ready for the good days that would happen in about five days..


I found that the chemo cycles went like this: chemo......sick.......start to feel better.....feel good....next treatment and then the chemo cycle started again. With each chemo session the time of illness grew and the time of feeling good got reduced. But I want to remind all of us...there are options to feeling miserable and your arsenal of positive actions should be ready. Write a list of what you will do because believe me...you won't remember what to do as you are leaning into the toilet bowl. By the way, use a basin when you are nauseous and not the toilet bowl. Why you may ask...The reason is we deserve better.

Keep a record of the things you can do when you feel good. Have everything ready. Have a plans for when you are feeling sick..........remember eat white food! and stock up on ginger ale or cola. Find what makes you feel better and have it all ready. Arrange where you will sleep or sit...plan how each day will go and then using all your God given strength....move on. The day you finish your treatment............sleep and rent movies for the times you are awake. And don't move your head too much. You and I both know that what I have written does not apply to everyone...but what I am trying to tell you is BE PREPARED!
"You are a child of god and a special person."Course in Miracles." amf




I have always fought being called a CANCER SURVIVOR. So many of my friends

all good

this morning, before heading into the Daily News office, I called UCLA and lab by lab tracked down the results of my blood test from Sept. 26. took about twenty minutes of getting passed around, retelling my story and writing down a handful of different phone numbers.
the results were faxed to Tucson this morning. Dr. Ahmann's folks made sure to tell me so.
Just a few minutes ago, Ahmann's people called to say he had inspected the results and everything looks good.
hopefully I'll have a new oncologist for the next test -- which will also include another CT scan, as it has been four months since the last.

missing blood labs

Less than a month since my first blood draw in L.A., i haven't seen the results.
so i called my oncologist in Tucson. Turns out neither have they. they never received the results.
but UCLA was quick to collect their money.
The first bill arrived within a week of the blood draw.
so now i need to track down my results.

first anniversary

Last Thursday marked the first year since I finished Chemotherapy.
I didn't even realize it last week. too much work -- too much on my mind.
I flew to Tucson over the weekend to celebrate Francisco's birthday and Jack Gillum going away to USA Today.
Drove past the clinic at one point and just looked away.
more later. as I type, parts of valley are up in flames, I'm up to my eyeballs in assignments and I'm sure there will be more work to come my way within the hour.

Chemotherapy - so much to learn!

Don't start chemo therapy until you know what is going to happen to you, both physically and emotionally. Even if you have already started chemo...something I write might help you.

I had six months of chemo in 2004 for breast cancer and I now realize how I should have prepared myself. I found out what was going to happen as it happened and I had to keep adjusting myself. I hope my suggestions will help all of us remember that as the patient we need to feel empowered and we must insure that we always know what is happening and that we always have the right of "first refusal". We can say, "No, thank you." as well as "Yes, I like the plan we worked out for me."

We are not responsible for the fears of our family and friends. This might sound unfeeling but I am only encouraging us to remember that the needs and wants of the patient have to come first. All to often some cancer patients do things or have treatments before they are ready and comfortable with what is happening. Sometimes it is at the urging of family and/or friends and sometimes it is the doctor. No one will ever convince me that a week or month's delay in surgery or treatment will really alter how long I will live or how effective the surgery and/or the treatment will be. Well, maybe never...

Therefore,

from my heart to yours

--- I encourage you to stop and breathe! Cancer is what it is and you and I will just have to make decisions that seem to be beyond our abilities. But if we have a system for surviving all that faces us we will feel more powerful and believe me there is real joy in getting the medical profession to stop and listen. I have made it happen on many occasions and I take great pride in these victories.

First, purchase a notebook that you feel comfortable with and two or three pens.This notebook will be your constant companion whenever you have any appointments with any one who is involved with your health care. You should write down the purpose of the visit, any comments or decisions and the names of ALL drugs that enter your body. Know the names of the chemicals that you are choosing, what they are suppose to do and any and all side effects. For every side effect there is a PILL. I say this from experience... the experience I had each and every time I said: I am nauseous. There must be something you can do." Never ask the doctors, " Can You Help Me?" , assume that they can and you know despite their best efforts not to help....they do. Only kidding some of my BEST DOCTORS are doctors.Before I make any decisions about my care I need to understand what will happen. Therefore, I will write some notes and ask some questions
Don't be surprised if you are asked: "What do you want to do?" When the oncologist told me what chemicals would be in my "cocktail" and that I could have a choice of chemicals. I looked at her as if she were crazy!!!!! I had been an elementary school principal, so if she had asked me what procedures I wanted to follow during a fire drill, I was prepared. But how should I know what chemo therapy I should use. My brain had already stopped functioning back when I was told that I had breast cancer. and I could barely hang on...now I was expected to be an oncologist who planned my therapy treatment plan.

Well, if the medical profession wanted me to play doctor then I would. So I had two conferences with my oncologist, wrote down the planned chemo and the alternatives that were not being used. Determined why certain choices had been made. QUESTION....QUESTION....QUESTION.....AND YOUR LAST AND MOST POIGNANT QUESTION SHOULD BE: "TAKING INTO ACCOUNT MY PROFILE AND PATHOLOGY REPORTS, IF I WERE YOUR SISTER WHAT WOULD YOU TELL ME WAS THE BEST PATH TO FOLLOW AND WHY." Resist the temptation to speak....the silence will get very loud but eventually the doctor will speak. Listen closely to what is said and keep using the "sister" word. It seems to create a more personal relationship instantly.

Eventually, you will have made the decision to have chemo or not to have it. If you choice not to....God Bless You and Let's Keep in Touch and I wish you great joy and peace. Don't look back and never second guess yourself. If you decided to have chemo recognize that the decision you made was very hard and admire yourself for taking the action you took. Chemo is a strange things. No one who has had it, in my world, has every had the same emotional or physical feelings.Try listing your symptoms in the order of prominence and then select the path of action............You can call and see the oncologist and ask for remedies. Remember for every physical symptom like nausea this is a pill. If the first pill doesn't work,,,,keep giving feedback to the doctor. Be aware of the changes, if any, the pill has caused and tell the doctor. Leave with a new prescription, held proudly in your hand.

You slowly work your way down the list and by the time you are at the bottom of your first list, there might be a second....but it does help time to pass as you move through chemo...doing your best to manage your treatment and live your life. Remember this is why we do take chemo.

One of the most frequent complaint about chemo - after losing hair, is how we feel physically. In talking with soooooooo many women who had chemo here are some of what I see as some great remedies for nausea, roller coaster feeling, feet touching the ceiling, chairs spinning and lifting off the floor, and food, oh, food, actually looking like the vomit that eating will cause...
Saltine crackers, tea with honey, ginger ale, oatmeal, farina, and all white foods like white rice, white potatoes, white cheeses, cottage cheese, white bread. I wondered why about this "White Model" and I think that because the color white is so blah we don't think "food" ane we eat.

There will be more to come...but I am off to a Spa with my sister just to be with nature.I hope what I write helps someone...it helps me. You see I am blessed with a person in my life who encouraged me to write. I may never be famous, but I am a person capable of writing what I feel and sharing it, hopefully, in a way that helps those of you who read my blog. By the way...thank you for reading my thoughts.

Will write when I get Back. God bless the election of 2008. AMF

act two

had my first blood draw in L.A. yesterday. it was on the UCLA campus.
so here's the thing. since I'm in between full-time insurance companies, my plan is to have the blood draw in L.A. with the results to be faxed to my oncologist in Tucson.
I don't want to get an oncologist under Cobra then have to do it all over again once my new health-care coverage kicks. too much run around.
so we'll see if this interim plan works.

first blood test in California

Moving less than one year after completing chemotherapy is bound to be complicated and expensive.
Back in Tucson, I certainly had a routine that was well worn: every two months, go to the same clinic off Alvernon. check in. read whatever I brought with me. hear my name announced in the waiting room. small talk with nurses. prick of a needle. blue bandage for the wound and head to work. a week later, Check in with Dr. Ahmann and the clinic staff on Campbell.
Every four months, go to the new lab on campbell, across from the trader joes. arrive 45 minutes early. check in. drink that terrible filth they call contrast. disrobe in one room, put on the medical robes. ride the giant donut. feel the warmth of the iodine flush in my veins. blue bandage again. brush teeth to get rid of that taste and head to work.
a few weeks later, I'd get the typical bills -- depending on the cost, I could handle them, though thanks to some sage advice from a Lee Enterprises employee, i ended up having to pay more than i should of for CT scans.
that's another story: don't believe the H.R. people. like the insurance companies, all they care about is saving money.
but I'm in Los Angeles now. there are a ton of great resources here. and they are spread out all over this metropolis; from West L.A. to Loma Linda.
But before i can access those resources, i need to pay for insurance.
I'm in between companies. Not yet eligible for benefits as a Daily News employee, so i'm covered by cobra under Lee enterprises.
cobra should be called mosquito, 'cause it's a blood sucker.
In three months, I've paid cobra more than $1,200 - about $400 a month.
three weeks ago, I meant to get my first blood draw. but i work at a newspaper and sometimes you just can't plan your day. between the chatsworth crash and a project I've been assigned to, well, three weeks slipped by. like I was saying, three weeks ago, I got all my paperwork ready and decided I'd get my blood drawn at a UCLA clinic in Westwood.
three weeks ago.
the project is in its final throes and I'm finally taking a morning off from work to get my test taken care of.

a friend is diagnosed

so it has been nearly one month since the last post. so much has happened.

i've been back in Los Angeles for more than two months now, working for the Los Angeles Daily News. It has been more than one year since I began chemotherapy. More than one year that Guadalupe and i have dated. Little Harley Rose Leonida is more than a year old now.

Elsewhere, changes abound. there's a female candidate for vice president and a black candidate to be president of the united states. Indymac doesn't exist. more folks have been laid off at the L.A. Times. Bolivia is on the verge of a civil war, again. the achievement played their last show in Riverside. Francisco is on tour with the Santa Cruz River Band. Manny Santana passed away. nearly all my Santa Cruz people have moved on... and on and on.

It hasn't been for lack of material that I haven't written. in fact, there's a plenty that I, as a cancer survivor, should be chronicling. The less glamorous stuff -- like switching insurance, paying more than $400 a month for cobra coverage to cover a blood test I have yet to take, and new life. yes. the feelings within.

I have to admit something.

I haven't told my co-workers that I'm a survivor. It hasn't come up. how could it. But when I arrived to Los Angeles, I was anxious to stop always talking about cancer.

Back in Tucson, there were memories everywhere. Co-workers and friends always asked. I was cool with it, but in some ways it had become a very focal part of my identity. it will always be, but I want some space. i know it will come up again. shoot, I showed a co-worker a photo of me bald. and at a union training this weekend, I know folks will ask.

this want of space all started with the final story for the Star, my farewell, cancer experience piece.

Actually, the moment it all changed was captured on video. You can see my face change.

in the name of journalism, i returned to he clinic and discussed my experience. at one point I climbed into the chair that i started chemotherapy in. I start explaining the experience. then I stumble. repeat the same thing about three times. and start crying.

I went home that night exhausted. the story and experience brought up much that i hadn't allowed myself to feel or reflect upon.

not long after that experience, I made a joke about my cancer. something about one nut or whatever. Guadalupe finally told me it was hard for her to keep hearing crack jokes about my cancer.

i never realized it would upset her. then I thought about my mom, what it was like for her to hear my joke about it.

....wow, I really should've been writing all this earlier. it's a lot to process. i've much to catch up on.

anyway, so the point of today's title: a friend, a pretty young lady from Tucson has been diagnosed with cancer. Not quite sure what yet, but I'll call her tomorrow.

we'll talk one survivor to another.

Living and Dying are intimate friends...

The words in my title were written by John Denver. I was driving my car and listening to John Denver's music. I was focusing on his lyrics and even though I had heard the song before, this was the first time I heard, "Living and Dying are intimate friends". I felt tears streaming down my face and I realized I needed to pull off the road.

Living,dying....two words that I just never saw as friends but for the first time I felt some comfort. With my newest cancer diagnosis I felt that it was important that I feel positive about the prognosis. However, fear entered my emotions, body and spirit and I could not soothe myself or feel calm. The doctor had said that right now there would be no treatment and that he would see me in a year if nothing changed. My heart ached as I heard his words...I just knew too much about Adenoid Cystic Carcinoma (ACC), the orphan cancer. It is rare and because of this, it is not studied much. There is no cure just treatments ...chemotherapy. I would only have chemo if symptoms existed. Right now, I am symptom free!

Living and dying are intimate friends...these words circled round my mind and body. What did John Denver mean when he described these words as intimate friends? Did he ever imagine for a moment how they would touch me? I knew for the first time that if I looked at my birth, my life and my death as three intimate friends... I would not be afraid.

When I was born, I was just born. I didn't worry about the nine months I spent in my mother's womb or the birth process or would I be a boy or a girl. As I have been living my life, I have spent a great deal of time concerning myself with the wrong things and missing out on so much time! There have been times when I have been anxious and afraid to do something or face a problem. Other times I worried about what might happen if...

With time, experience and training, I have gotten use to the bumps of life. I plan on continuing work on my life and my use of each day. I will also continue seeking peace and living a life where I do things that make an impact on the world.

Recently I have seen the presence of death and its color is neither somber nor black. I am reaching out for dying in terms of attempting to understand it so that it becomes "an intimate friend". I am realizing that death may not be a fearful process but just a component of being a human being. As I was born and as I live, I will die.

And it may be the most exciting human experience ever! So many die and so many live. We can only accept what will be....Let's enjoy each moment! God bless all the soldiers. AMF

No Visible Cancer in PET Scan!

Last week I had a PET scan to see how good a job the chemo therapy has been doing at killing the cancer in the three areas the cancer appeared in my original PET scan several months ago. To my great relief that doctor called to report that there was no visible cancer but that I still had to do my eighth and last infusion this Thursday. (Had the PET Scan still showed cancer then I may have had to continue the chemo twice a month for two additional months.)

So currently I do my last of eight infusions tomorrow and then I have to get radiated 17 times to kill any microscopic cancer cells in the three tumor areas that might be hiding. After that I've supposedly got a 80% chance of being 100% "cured".

In reality I understand that because the cancer treatment I'm going through is rather carcinogenic itself I have a 10% chance of getting some other cancer within the next 20 years. But hey, I'll take the 20 years and the 90% chance it will be longer since I'm pretty sure I would have been dead in 4 years had I elected not to be treated this time around.

Neutropenic Hospital Stay

Sorry I have not posted in a while, killing Cancer is a full time job what with all the doctor appointments and medical tests (not to mention feeling poorly or desperately tired 70% of the time).

The most interesting thing that's happened since my last post is that I ended up in the hospital for about three days, a week and a half after my fourth infusion (half way through). It seems I was having a lot of sweats and was running a fever of about 101 degrees or so off and on for several days. When I mentioned it to my doctor's nurse she told me to go to the emergency room at UCSD and tell them I had a Neutropenic fever and that they would probably admit me.

Sure enough, several hours later the ER doctor was explaining that my ANC count was below 500 and that was not a good thing if I had some sort of fever in my body. So they admitted me to my own room (so I didn't catch someone else's kooties) and started pumping me full of antibiotics from Monday evening through late Wednesday afternoon. Sure enough they ended up killing whatever was causing the fever and got my ANC count way up with a couple injections of Neupogen.

Speaking of injections, they also insisted on giving me a shot of Heparin in the stomach (quite unpleasant no matter how pretty the nurse) every eight hours to "prevent blood clots". After a while I figured out that they try to do that with everyone admitted to the hospital and I was not really all that special. When I knew I was getting out on Wednesday I said, "Thanks, but no thanks" on the last couple injections.

One special note is that if you're going to get stuck in a San Diego hospital I highly recommend UCSD's Thorton hospital. It looks like a fancy hotel and as a patient you order your three meals a day from what looks like a hotel room service menu. The food was excellent and it's even served by someone in a room service uniform. (Best thing about it is you don't have to tip them!)

Leroy Sievers

Leroy Sievers, whose blog for NPR was linked to ours, passed away. Read more here.

Chemo Me More, I'm Loving it!

I've now had four of my eight scheduled chemo infusions. The following information is primarily for you all trying to anticipate what your own pending chemo will be like.

1. Hair Loss? Yes. Eighty percent fell out three days after my second infusion. Three days later I cut the rest off.

2. Nausea, vomiting, heartburn, dry mouth, diarrhea, constipation or weigh loss? Yes, no, yes, yes, I wish, YES and just starting. After two months and four infusions my gut is suddenly very concerned about what I eat. If I think it will make my poop hard I will not eat it. Why? Click here. I gained five pounds over the first two months of chemo. I think I'll now give that back and then some over the next two months.

3. Slow healing nicks, cuts & viruses? That's a big yes. The problem is except for feeling "different" all the time during chemo - you can't really specifically tell that your white blood count has dropped to almost non-existent and is just barely recovering before the next infusion 14 days later. Every little cut takes four times the normal time to heal. Hang nail? I got band aids for that. This? Ongoing ouchy! Prevention, prevention, prevention. Does your kid have a snuffly nose & a low grade temperature from some unknown "kid virus". If you get it it'll last a week or more where your kid might shake it in a a couple days. I've gone to wearing those lovely blue paper face masks whenever I go into a crowd.

4. Ability to tolerate chemo regimen without interruption? Almost. Before my chemo started my oncologist said it was VERY important to stay with the full treatment without interruption from the side effects. I assured the doctor that would not be a problem. I figure that at 6'2" and 215 pounds I'm a pretty macho dude (at least that's what Nancy assures me of). Ten days after my very first infusion though the hospital lab calls me to tell me my blood count has not recovered enough to have my second scheduled infusion 4 days later. My doctor advised that I needed a shot of Neupogen the next day to raise my white blood count and even hope to have the scheduled infusion three or four days late. Neupogen shots cost $75 each but only if I give the shot to myself and then only if my insurance carrier's selected online pharmacy sends them to me overnight. I've had to give myself a shot after my first & third infusion. In addition to low blood counts, after my first infusion I told my doctor that I didn't poop or even fart for about 10 days. That caused him to be very concerned about paralytic ileus, a possible side effect from the Vinblastine - the "V" in ABVD. He took me off Vinblastine for the second infusion and then ramped it back up. I protested but he assured me that ileus was not to be trifled with and I needed to do whatever it took to become "Mr. Soft Poop".

5. Fatigue and chemo brain? Yes. After the first couple infusions I'd sleep about 24 hours straight on the third & fourth day after the infusion and then need an afternoon nap every other day. I still need naps everyday and the 24 hour nap need can fall on any of the 14 days. My ability to concentrate on something lasts about 15 minutes. Reading the paper? I need a nap afterwards.

6. Bottom line? Chemo sucks!

Bald is Beautiful

When I asked my oncologist about the recommended ABVD chemo treatment he assured me that it was one of the gentler chemo regimens. I asked him, "Will I would go bald?". He said "no".

I should have asked him, "Will eighty percent of my hair fall out and make me look like some kind of pathetic cancer freak seeking sympathy from all who cast their eyes in my general direction?"



To make a long story short, about two days after my second infusion my hair started falling out in big clumps in the shower, all over my bed pillow and pretty much every where else in the house that I touched my hair. Slicking my hair back with gel only made me look like an 80 year old still trying to get away with a "comb over".

After three extremely depressing days I decided to seize control and the car keys. Sixty minutes later I was beautifully bald thanks to a friendly old fashioned barber shop and a modest investment of $10.75.

Getting bald is easier than staying bald though. After about a week I noticed that about 10% of my hair was still growing. So I decided that I would try to "Nair the hair off" with that creamy stuff that women use on their legs in the shower. (Personal note: Don't put Nair on your scalp when your scalp is sunburned and peeling. Ouch!)

It seems the best way to stay bald is to use a disposable razor with a lubricating strip & hair conditioner. I've also bought an electric razor to see if that might be the best daily way to "stay beautiful".

Snow Job

Looks like I wasn't the only one at the Star who knew Tony.
Fitz is great.

Tony Snow, R.I.P.

Tony Snow, conservative television personality and former White House spokesman, passed away this weekend.
I didn't know until I saw the Sunday edition this morning while I was listening to a phone-in press conference.
here's a link to my past blog on Mr. Snow.

Sunday Cover Story

My final piece for the Arizona Daily Star ran Sunday. It was a first-hand account of my experience with Cancer.
Read it here. Also, you can view a short video of me returning to the clinic.
Side note: Guadalupe does not like the photo of us that ran...

i can has cheezburger?

A few years ago I had a chest x ray done. Standard, since the origin of my cancer came from a tumor in my chest. In that x ray the doctor saw some..thing. So i had another one done. Same thing. So the good doctor freaked me out by telling me that there was a possibility that i might need surgery again to clean up what ever of the Thyroid was left behind (according to the x ray). He sent me to see a surgeon. He then put a scope down my throat and had a peep. He saw nothing but some acid reflux. He recommend that i take Zantac once a day to repair my esophagus. Done.

Flash forward a few years, a new gun ho doctor, and with the new doctor can a battery of tests...i was impressed. I had new chest x ray done...results came back as before. They saw...something. What? They don't know. I have to get another one done tomorrow. In addition to the chest x ray, i had blood work done. To quote the nurse; “ Hi Paul, your test results came back, and your triglycerides are out of whack...so doctor Bodwin is going to put you on Lipitor...ok?” “wait...what?” Thats right folks, I just turned 30 and im on Lipitor. Jesus Christ.

I should be more depressed then i am at the moment. But im not. A years ago, around the same time of that chest x ray, also had a blood test done. I was suppose to fast...no food for 24 hours, and no liquid a few hours before. But, i was thirsty. I thought to myself, whats a dr pepper going to hurt. Well, that threw my blood sugar all out of whack. They thought i was a Diabetic. Im not. So im taking all this news with a grain of salt. Ive been down this road before. Im not that worried. But...god damnit, if i have to have surgery again or have to go through that no salt diet again...Mother F-er!!!!! I dont know what i'll do.

I dont need this shit, and You know in spite of what George says about me (I dont eat more chili-cheeseburgers than i should), im in relative good health. Though i dont work out like i should (its been a rough few months), i dont gorge, eat small portions, and im trying to cut out process foods. If this isnt enough motivation to get my ass in shape? Then paying 88 dollars for 30 pills will. 88 dollars! Blood money to the pharmaceuticals

what the F?

sssheck it out, a

Coming in the Sunday Star
...

R.I.P. Alicia

During the course of my chemotherapy, I met a young Latina at the clinic. Her name was Alicia. When we met, she was about 19-years-old and had a handsome three-year-old son.
This morning I found out that she passed away.
She was a leukemia patient. It was clear she was very sick when we met. The veins in her chest were all bright purple from infection. It had been a long time sick her locks of hair hung down from her head. her head was shiny when we met. I can remember the tubes, filled with blood, that hung from the port above her collar bone.
Some mornings she had trouble holding down her food.
Yet she was pretty. Her youth shined through her eyes. She was probably beautiful before cancer brought her to Arizona.
Her presence brought a comfortable life to the clinic that no one else did.
She and her mother spoke Spanish, which I otherwise did not hear much of in the clinic. that always made me smile.
And her son brought that chaotic energy that only children can. Running around the clinic, getting into the juice bin and playing with the few other kids that might be around on any given afternoon, he was a handful, to say the least. I believe the nurses said more, actually.
Alicia and I might have first met on Labor Day weekend. I cannot recall right now.
I honestly feel sick to my stomach knowing she's gone.
After our first meeting, I would always check in on her when she was around.
I remember listening to her story about her son's father. I remember her talking about how they discovered her cancer and how she sought treatment in Texas and Mexico before arriving to the clinic in Tucson.
Alicia came from Las Cruces, New Mexico.
take care kid

Adrian says...

A few minutes ago, I sent an e-mail to Adrian about my experience last night.
Here's his response: "Yeah, word to the wise, don't go back to the labs!"

addendum

I visited the cancer clinic last night. I sat in the chair that I started chemotherapy.
I pulled the leg rest up, like I did at the beginning of every treatment, motioned with my arms how blankets were rolled over my legs and began to describe how the nurses would search for a vein on my right hand or wrist. then I started to cry.
I didn't even see it coming. the tears, the reaction -- I mean.
I cried again later when I talked about the first day and how my father watched me briefly then got up and left.
later that night, I spoke with Guadalupe about the experience. I suppose the reaction shouldn't be strange given that I was reliving a traumatic experience. Also, we noted, I never cried or acted that way during chemotherapy.
While I was in the thick of chemotherapy, i struggled to not allow myself to be afraid and when I was, to not show my fear. Psychologically, I wrestled with my fear because it could only harm me and my recovery. so I gave it no quarter. i guess until now.
the rush of emotions wiped me out for the rest of the evening. after a short visit with the González family that night, I went home, cooked something and crawled into bed early. like I haven't in weeks.
honestly, I'm still tired from the event.

the century mark

Paul,
we hit a hundred posts since you started the blog!
i'll toast a cup of coffee and you have a shot n beer for me.

Hi all

I haven't written anything in awhile...though, something big is in the works. In the mean time, you might find this funny...like i do

Can anyone see me?

Dear Anyone:

I was born to a father who could see me as his child , his baby girl, his delight. I was born to a mother who was blind to my needs, my five little fingers, my five little toes, my sparkly eyes, my winsome smile. Unfortunately for me, my father died when I still had not internalized who I was and what I had to offer the world.

So, after my father's death, all my life lessons were taught to me primarily by my mother - who could not see the world clearly. I learned to be blind to who I was also! Looking into a mirror to see what I looked like, I saw who my mother saw. My intelligence, my sense of humor, so much of me had already been written for me by my mother, the author of my childhood emotions, opinions, issues, and self-worth.

My heart cries out for someone to see me; someone to touch the person I am! I want someone to acknowledge that I am so much more than I was told and had come to believe. The reality is that I will not find that someone, that anyone - until I see for myself the person I have become.

At age sixty-five, I have the chance to define myself. I do not need anyone to confirm my beliefs about myself. It is easier now because of my age and the fact that my world belongs to me. I am not watching a time clock. Nor am I raising children or establishing a professional life. I have been blessed by knowing people who really have loved me as I am and that fact gives me the courage to open another chapter in my life and find what has been buried deep. I have been hesitant to introduce the real me to the world. Wish me luck on this new journey. I will let you know who I find. Can anyone see me?

Yes, I, the holder of your soul, spirit and emotions, can see you clearly. Come join me and I will tell you all!
Peace In the World. AMF

I will miss you every Sunday morning...

You knew some of us better than others! But we all knew you. We saw you with different eyes, with different professional and personal lives, with different knowledge bases, with different hearts and spirits. Some of us were members of your family, some were friends and some were admirers. You probably were not a stranger to anyone. And if you were, it was truly a lose for that person.

I found you every Sunday morning in my home. With a touch on my remote control your face appeared before me and for a time we were together. I was taken on a journey where you as the guide helped me to unpack my intelligence and knowledge. My brain opened so that I could unlock my thoughts as I listened to your questions and the answers your guests gave. Moment after moment I travelled with you to different parts of the world as you encouraged the dialogues. I watched the twinkle in your eyes each time you caught your "mouse" and the intensity was there too when you questioned someone about issues that impacted on our humanity and on our freedoms and political systems.

I wish I had known you enough to have given you a hug. Yesterday, you died and you left a vacancy that no one can fill. For once I have found someone who is irreplaceable. I have been mourning today. I move differently and speak softly not wanting to disturb the silence. I need to hold onto you for as long as I can. Goodbye, dear friend. Goodbye, Tim Russert. Peace AMF

No Metastasis

Here's a line from my latest CT Scan report: "No evidence of metastatic disease."
translated: nothing has spread and I've been cancer free for eight months.
Dr. Ahmann recommended I go out tonight, have a beer and watch the sun set.
I'll settle for time with my requinto.
Blood tests are clean too.
other than weight loss (I'm still below 140 pounds), it's all good, says the nurses and docs.
oh yeah, I found this little note on my blood test results -- my testosterone level is 665. The highest it should be is 800.
I'm macho, says my nurse.

WHHAAAAT? You're macho.
WHHAAAAT? You're Macho.
WHHHAAAT? You're macho.
OHHHKAY!

alright, it didn't really happen like that, but I'm still excited from the news. Not bad for a kid with one nut.

Mmmmm, chemo!

Well it's been a weekend, a week and then another weekend since I enjoyed my first "chemotomy" (short for chemo lobotomy, of course).



As the photos above & video below suggest, I had absolutely no idea what the days after my first chemo infusion would be like. The following list summarizes:

1. VOMITING - None. They give you so many anti-vomiting drugs that it feels like your gut actually gets switched to "off" for about five days.

2. NAUSEA - No nausea per se, but because your gut isn't doing anything for almost a week it feels like you have someone else's guts in you. It's a very annoying feeling.

3. FATIGUE - Yes. Napping daily for the first week. Serious three hour naps.

4. DIZZYNESS - Yes. The chemo kills the blood to starve the cancer of what it needs to grow (I guess). What the chemo's doing to the cancer the chemo's also doing to everything else that needs anything from your blood.

5. LIKE BEING PREGNANT - I never really understood how annoying it can be to have something foreign take over complete control of your body. It totally sucks. After being pregnant with three our kids, my wife Nancy is my new hero! (Sorry, hon. I never new!)

6. CRANKY & IRRITABLE - Absolutely. Ask my poor family. I hope now that I know what chemo feels like I'll be mentally better prepared & not let the surprise put me in such a miserable mood.

7. THE "HUH, WHAT?" EFFECT - Some call it "chemo brain" but I like the term "chemotomy". All I can say is that for about five days all I did was wander around the house between naps trying to remember what the hell I just started doing two minutes ago. I now understand why people who get dementia also get mad. It's really quite annoying.

8. LOSS OF APPETITE - I wish! Instead of giving you drugs that turn off your gut they ought to give you something that turns off your appetite and your desire to engage in "happy hour" to make the misery go away.

All in all though, since I wasn't puking my guts out or curled into the fetal position for a week I'd say the whole chemo thing went a whole lot better than I thought it would.

RECOMMENDATIONS - For those of you reading this blog & freaking out in advance of starting your own chemo I humbly pass on the following:

A. Eat Light & Skip the Spices - For some unknown reason my stomach was not happy unless it was full. Think of the hour after Thanksgiving dinner. Stuffing your gut is not something you want to do when your gut is closed for business for about five days. Plus, I used to eat hot sauce and spices on everything. No more. Trust me, I tried.

B. Skip Exercising for a Couple Days - Unless you like that dizzy, almost-falling-over feeling.

C. Just Smile, Don't Speak to Your Poor Children - If that "hey look at me" noise teenagers love to make every waking hour of the day isn't something you're crazy about to begin with, chemo doesn't make that sound more pleasant. Buy some soft foam earplugs (really), and go take another nap behind a closed door.

D. You will Feel Normal Again - Like I'm an expert after one chemo infusion, right? I can say that by the beginning of the second weekend (I had chemo on a Thursday) I felt pretty much back to normal.

E. Skip Lots of Direct Sun - For some reason my face turned beet red after being in the sun just a little bit the first couple days after chemo.

Video Anyone? Speaking from personal experience, I know that for the month or so between the time you think you might have cancer ("Oh shit, I'm gonna die!") and the realization that having cancer is not a lot different that getting a second (or third) job, ("Like I got extra time in my life for one more stupid, time-wasting activity"), "cancer people" have an unquenchable thirst for any and all information about what they're about to go through. For all you happy cancer campers out there in blog-land I humbly offer about 12 minutes of my life in the chemo chair. (Videograpy services cheerfully provided by the "always ready for the next adventure", Mrs. Cancer Dan AKA my loving wife, Nancy.)

veins

more poking and prodding this week in the latest installment of blood tests and CT scans...arrrr.
I had a blood draw this morning. I'm hoping everything works out with my insurance. I'm still fighting over the last blood draw.
What once cost me $50 all of a sudden went up to $550 when I got the bill for my last blood draw in April.
Tomorrow morning i go for the routine CT scan. ugh, the tasty contrast.
Next week, I meet with Dr. Ahmann.

I Survived Chemo Infusion Round 1 of 8

Because of or in spite of 11 different chemicals coursing through my body I'm muddling through the "day after". As my poor family can attest to I'm quite irritable and generally unpleasant to be around though.

We did take some funny pictures yesterday at the beginning of my six hour visit to the "infusion" center at UCSD. I hope to have a full blow by blow published a bit later here when I'm feeling a bit better.

Thanks for all your thoughts and prayers. They're helping.

I Got My Port Put in My Starboard Side!

It's a cool little device called the Smart Port CT "With Vortex Technology"!

Dr. Finch here put it in. Doesn't he look like he would fit right in on the "Grey's Anatomy" TV show?

The video below is of an older model of the port. "Port" seems to be a short name for "vascular access device" ("vascular" meaning big-ass blood vessel). The port is a device that goes in the chest just under the skin half way between the nipple and the collar-bone.

To get it in the doctor cuts an incision while I'm under sedation (not totally asleep but not totally awake) and then kind of digs a pocket out of the fat between my skin & chest muscle about an inch south of the incision. After tucking the device in he then snakes a catheter (tube) up under my chest skin, over my collar bone and then into my jugular vein. From fist poke to final sew the whole procedure could not have taken more than 30 minutes. They said I was asking questions through the whole procedure - I guess that's what they get for not knocking me all the way out.

The photo to the right shows the port that goes under my skin in the left hand. The device in the right hand is what connects to the port via a needle through the chest skin. the other end of that tube is connected to an IV pump I believe that helps them load me up with four IV bags full of chemo juice.

As always, the staff taking care of me could not have been nicer. The doctor was a fairly serious but friendly fellow named Dr. Michael Finch. The two nurses were very professional but happy to joke around a bit when Nancy and I asked if we could take a funny picture for our blog. Their names are Robin Garland, RN & Linda Lobbestael, RN.
(I hope I look this happy when "they" start using the port to fill me full of chemo juice every two weeks for four months starting next Thursday, May 29th.)

The "Doctor's Chair"

I was so happy to find out I only had Hodgkin's lymphoma a couple weeks ago I forgot to share the silly trick Nancy & I played on my oncologist.

We were both quite nervous waiting in the exam room for Dr. Castro to come in and give us the official diagnosis. It seemed like we were waiting an eternity. The picture to the right is me waiting "patiently".

Anyway, I noticed that the chair the doctor sits in was one of those chairs that goes up and down only by spinning the chair while holding the rolling feet still. I also noticed that the chair was screwed all the way down to it's lowest level - which made sense - as my oncologist Dr. Castro is a huge man professionally but - well I guess you get the picture. I asked Nancy, "Do you think he would notice if we screwed the chair up to the top so it was as tall as it could be?"

Like a ten-year old middle-school prankster I re-adjusted the chair all the way up, had a quick chuckle with my partner in crime and then went back to worrying about dying from cancer.

About five minutes later Dr. Castro came in and tried to sit on his chair. He immediately seemed to think something was amiss, got off and actually turned the chair upside down to see what was the matter. By then Nancy and I almost had tears coming out of our eyes from holding back a laugh when Dr. Castro gave us a strange look and then moved onto telling me all about my having cancer while at the same time trying to find a comfortable "Doctor-like" way to sit on an office chair that was almost as high as a bar stool.

Well it seemed funny at the time!

If You Can't Laugh At Your Brother, Then Who Can You Laugh At

My brother, Richard, was filming the family on Mother's Day. He put this together.
This short film gets my one nut of approval rating.
by the way, the tall guy: that's my cousin Ramone.

One Year without Righty

My right testicle was removed one year ago today.
I remember the day clearly. Driving to the hospital with my parents. looking out onto the Sonoran Desert and the Catalina Foothills from behind the vans sliding door window. My aunt called from Michigan and prayed over the phone with me.
Once i checked in at the hospital and got laid out on the bed, the nurses were great. when they found out I worked for the Arizona Daily Star, they all asked about our columnist Bonnie Henry. One of my nurses had a daughter interning at the Star in the features department. Tucson is a small town, despite a million souls on record, i remember thinking.
i nearly passed out from all the needles. this gave everyone a good laugh.
eventually the anesthesiologist came around and injected me with the goods. as they wheeled me out of the pre-surgery waiting room, I started to fade. once we hit the corner and into the hallway, i knocked out. never even saw the operating room.
woke up about an hour later, my mouth sore from whatever tubes were in my mouth. drugged up and confused, I climbed out of the easy chair they propped me up in and crawled into my parents home. it was hot that day.
grandpa had flown in, just after fatty and Sarah flew out. carol ann came by that evening to check in.
at some point I checked myself out. surprised to find half my pubic hair had been shaved and i had a brand new scar to show. it took me about a week to gather up the courage to touch myself -- my scrotum -- again.
the operation was only the second or third step. next was the biopsy and its results. at the end of the week, I found out my tumor was cancerous.

Six Million Dollar "Dan"

Do you ever wonder what "they" do with all your health insurance premiums?

I used to think "they" spent it on fancy health insurance company Christmas office parties in Hawaii. Now I'm pretty sure they just save it up so they can spend it on me at the UCSD John Moores Cancer Center.

On Friday I go in for my second "procedure" ("operation" for all you old school types). "They" (not the insurance company "they", the Cancer Center "they") are going to install a "pass-port" into my chest to make it easier on everyone to administer chemo therapy.

"What's a pass-port"? Good question.

I thought chemo was like getting a shot in your arm. Apparently it's a little more involved - like a couple of hours of having health care practitioners pouring acid into your body. I guess doing it the old fashioned way through an IV in your arm runs the risk of messing up your arm veins (or your arm skin if the chemo fluid accidentally leaks out!)

So with the port "they" implant a little hollow squeeze box under your chest skin (no, not an accordion) that's about the size of six old silver dollars that has a tube that is inserted into one of the "big" veins in your chest. (Cool, huh?) Apparently, the basic idea is - if you're going to take a caustic pee somewhere, is it better to pee caustic fluid into a straw (you're holding in your hand) or into the Mississippi river standing on a cliff?

So anyway, I'm getting the port installed on Friday. They say it's a real operation but instead of general anesthesia I just get "sedated".

How does all this make me the "Six Million dollar Dan"? Well I was Googling the port procedure and one blog I found said "they" charge $5,000 for the procedure. It got me started thinking, "How much does having Cancer cost?"

Fortunately we have PPO insurance where we can kind of pick our doctors but we still have to pick up 20% of the cost of the dinner. I shopped around for the MRI, the first test that began this journey. After hearing I likely had lymphoma after the MRI I kind of stopped shopping around.

Bottom line? Pay your health insurance premiums first, buy food second!

Mothers Day

Photo by Bean

I surprised my mom this year by walking in the door on Mothers Day. It was important to be home this year since I wasn't able to last year.
It has been nearly a year since my right testicle was removed. the surgery was two days after Mothers Day last year.
My folks spent last Mothers Day with Richard and Tina at the Huntington Library in Pasadena, CA. The day was real anxious. I was in Tucson with Fatty, Sarah and Alma, and I think probably the Gonzalez family. Just trying to relax, though we were all on the phone throughout the day. One of my memories from the day was mass at the Cathedral, where the presiding priest asked all the mothers to stand up for a prayer. But before the prayer, he said "look at all the lovely ladies." not the kind of thing you expect from a priest. in church. on mothers day.
Early the next morning, on May 14, 2007, my mother and father packed the van and headed east on I-10 to Tucson. We met at the hospital where I had a pre-operation meeting with my surgeon and had some blood work.
So a back yard barbecue one year later was a welcomed change of pace. grilled onion, pollo, carne, stories and laughter. everybody pitched in and cooked. the Bravo family stopped by as did Guadalupe and her nephew, Keanu.
funny -- the difference a year makes.

You've got "Nodular Sclerosis Hodgkin's Disease!"

Me: What?


Doctor: Remember when we were talking about the "Hollywood Cancer"? The kind you want to get if you're going to have cancer at all? Well that's what you've got. But it's not really called "Hollywood Cancer" - that's just what we tell patients to keep them from freaking out. It's really called Hodgkin's Disease and you've got the flavor called "nodular sclerosis".


Me: Huh?


Doctor: So the good part is that there's at least a 80% chance you'll be 100% cured which means you'll probably still die in about 50 years but you'll likely die from something other than Hodgkins Disease.


Me: Oh, good...

Doctor: But I've still got to talk to all my home boys here at UCSD Moores Cancer Center about you. You see we get together once a week and brag about all the cool cancer cases we've got. Sure, yours is a pretty pedestrian case of cancer, but hey, it's still real cancer - don't let anyone tell you different - you still get a t-shirt at the end! Wait, what was I talking about? Oh, yeah - I've got to present your case to all the other cancer doctors here on Friday - and assuming that everyone agrees then we'll share the recommended course of treatment with you which will likely be four months of ABVD chemo followed by two weeks of radiation therapy. So six months from now it's possible this will all be behind you.


Me: Thank you God! Thank you Jesus! Thank you Holy Ghost! Thank you family, friends and friends I haven't met who have prayed for me, my family and all those who are sick in body, mind or spirit!

"And there came a leper to him, beseeching him, and kneeling down to him, and saying unto him, If thou wilt, thou canst make me clean. And Jesus, moved with compassion, put forth his hand, and touched him, and saith unto him, I will; be thou clean." Mark 1:40,41




This is not really what my fine doctor, Dr. Castro said. He said it all very professionally. I just reworded it to make the official diagnosis of my cancer sound somewhat light hearted and/or funny. Ha, ha. :) (Except for the last part where the hand of God has assisted those like me who are sick.)

I'm Alive!

Did you ever have the feeling, "This is it!"?

On my drive home yesterday from work I was sure that today would be the day that the Lord had decided to call me home. To Nancy's general annoyance last night, I copied a will, a health directive & a power of attorney off the Internet (ilrg.com/forms) and got my neighbors together for a late night signing ceremony. But all for naught as I awoke from my surgery today quite alive and ready to put in 40 more years. (Actually when I woke up this morning I was actually pretty sure I'd be just fine.)

Except for the fact that I was having surgery, the whole experience could not have been more pleasant. In our private pre-op waiting room every member of the surgical team visited me and Nancy to answer any questions we might have and were all quite friendly and cheery. (See slide show below). Dr. Brumund did suggest we switch from sedation to general anesthesia as he was going in deeper than he initially thought he might have to - but even that was no problem as I woke up from the surgery feeling like I had a nice relaxing nap.

It turns out the "relaxing" was all the good pain killers. Eight hours later the goofy juice is wearing off & I'm pretty sore. We'll see how tomorrow turns out. Thanks to everyone for all the prayers. The prayers worked - I'm alive!

The surgeon, Dr. Brumund said they did a quick look at the lymph node under the microscope during the procedure to make sure they were collecting test-worthy biopsy material and he said the quick look was consistent with lymphoma of some sort. Next week we'll find out what flavor I have.

"Do Nothing Party" & Double Biopsy Day!

Our really cool neighbors through a back yard "do nothing" party for us this past Saturday evening. It was a "do nothing" as in that's what they insisted we do other than just come over. (It was pot-luck for everyone except us!)

I though it would be something of a pity-party but after discussing my situation for an obligatory 10-minutes everyone (thankfully) couldn't be less interested. That's why they're cool neighbors! (I must say though that people definitely give you better hugs when they think you might have cancer. Is that a good thing?)

The Moores UCSD Cancer Center just keeps coming through. I got the word late today that they'd be doing the bone marrow biopsy at the same time as my lymph node biopsy tomorrow morning. Ouch! Best to get all the hurt over at once, plus it cuts down on the waiting... for the FINAL DIAGNOSIS... (ominous thunder roll sound effect in the far off distance)

"Inside Dan" - A look at the MRI & PET Scan

When I went to pick up the original files of the MRI & PET scan so the surgeon Dr. Brumund could take a closer look at the job we were requesting, I asked the labs to make an extra DVD of each set of images so I could see what all the fuss was about.

Here you can see a single still image from about a thousand images on the MRI. The video below is just part of the PET scan images. In the video I guess the trouble is the three dark regions that create kind of a triangle in the left shoulder. It's all pretty cool, huh? No wonder these tests (and having cancer) is so expensive.

I go in for a pre-operative meeting tomorrow morning with an anesthesiologist & someone else in preparation for what we hope will be a double biopsy (lymph node in the shoulder and bone marrow in the hip) next Tuesday. (Sounds fun!)

First Meeting with Surgical Oncologist

The surgical oncologist we met with today is named Dr. Kevin Brumund and he looks a lot like the singer Jackson Brown. We were 30 minutes late to the appointment due to traffic and I was taken right in to the exam room. I nice fellow named Reggie took my vitals and then the doctor came in. He's grown a short beard but he still doesn't look a day over 40 (which Nancy noted by asking "How long have you been doing this?") What Dr. Brumund may lack in age though he mades up for in confidence and a business-like demeanor. (He answered Nancy, "A long time" - he likely has heard that question a few time before.)

Dr. Brumund took my history, looked at my records, felt my bumps and heard our request for an immediate excision the same day before stating that he would not be digging anything out of me until he could take a close look at my original MRI. He said that there's a "lot of expensive real estate" between my skin & the lymph node in my shoulder/neck area (like the brachial plexus nerve). He said he could theoretically do the biopsy surgery next Tuesday so long as the original MRI films (which we didn't have with us) indicated that was the most prudent course of action.

Since the original MRI films were still at the facility where I had the MRI done, I committed to going and getting them for him the same day so that the procedure could be confirmed - which I did.

So now the lymph node biopsy is tentatively scheduled for Tuesday April 29th. We asked the doctor's case manager, Susan Margolis R.N., if we could have the bone marrow biopsy done at the same time. Susan suggested that since two separate teams do the two different biopsy procedures, the odds of having both done at the same time were not good but she'd submit the request.



So anyway, Dr. Brumund knows what he wants to do and knows what he doesn't want to do with my lymph node biopsy - which soots me just fine. While he looks like Jackson Brown he's certainly no "Pretender".

First Oncologist Appointment

A thorough googling of "lymphoma" quickly led me to the idea that I ought to be working with a major "Cancer Center" to get my "lymphoma thing" analyzed & properly diagnosed. The closest cancer center to me is the UCSD Moores center in San Diego.

I met with a recommended oncologist today, Dr. Januario E. Castro outcomes or courses of actions before a lymph node biopsy & a bone marrow biopsy were done to determine a firm diagnosis. While he said the biopsy might show one of 40 different lymphomas, if he had to gues. Dr. Castro's demeanor seem perfect for me and Nancy. We waited quite awhile for the exam to start but when it finally did the doctor seemed to have all the time in the world for us. He took a very a thorough history and did a physical exam. He looked at my MRI & PET scan reports and told us that it was impossible to suggest possibles he say some indications of stage 2a Hodgkin's lymphoma. He said if I was going to get lymphoma at all that Hodgkin's was the one to get since "that's the one you always see on TV where they get diagnosed & cured all in the same 60 minutes".

I'm going to see a "head & neck" surgical oncologist tomorrow to discuss removing one of the three abnormal lymph nodes to do a biopsy & diagnosis. He said once the two biopsies were done we'd meet again in two weeks, go over the findings, answer all the questions and he'd recommend a course of treatment.

I must say that if you're going to have cancer, UCSD's Moores Cancer Center is were you want to have it worked on. Every person there is so nice. Nancy & I feel like we're visiting Club Med. You can't go anywhere without having some nice person escort you so you don't get lost. Dr. Castro's very nice nurse case manager, Theresa Diaz R.N., actually came to find us in the laboratory waiting room to update us about our appointment the next day with the surgeon. Talk about amazing customer service!