Consuelo Aguilar

Monday, October 27, 2008

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!

Thursday, October 23, 2008

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 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 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

Tuesday, October 21, 2008

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

Monday, October 20, 2008

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

Monday, October 13, 2008

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!

Wednesday, October 1, 2008

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...

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 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 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