Livestrong manifesto: “we believe that cancer should not control your life”

Livestrong manifesto continued: We believe that you should live every minute with every ounce of your being, you must not let cancer take control of your life! Attitude is everything, knowledge is power, you are in the fight of your life, it is your life, you will have it your way,your fight never ends, cancer never leaves your life.

With a blink of an eye, it feels as if we are back to that same feeling in 2010 except I have no organs that can be surgically removed. My cancer now has attached itself to most of my digestive organs in my abdomen. The cancer has its own fluid which floats around and shifts as I eat.  So, when I complained of this pain under my rib cage, I could have yelled louder, but the past is the past. At least, I now understand that as my mouth sores are disappearing, I must eat. As I eat, I am in excruciating pain for about 20 minutes as the food tries to move through my digestive system and the cancer tries to prevent this from happening. At least I know what it is now, so I won’t run to the ER. I will lie on the floor and wait for the pain to pass. I will not stop eating and become one of those people I see in the chemo closet who look like the cancer is winning. I will not let that happen. As my husband and son witness my daily battle and I see their smiles, I will not stop eating.

Yesterday, I spent a record breaking doctor visit day. This was the effort for a second opinion if I should need every week chemo (one of the suggestions) that I possibly could get it at UCI. Yes, the UCLA scans from Monday went missing. The night before my doctor did confirm the missing scans and made some suggestions of intraperotineal chemo (chemo directly in my belly), weekly chemo, and 1 other chemo combo. He did call while I was attempting to get some sleep since my tongue has finally gone down enough where I don’t sound like I am from another planet. I decided that I was glad he called even though his message was really about me needing to repeat the scans. (I insisted upon Hoag) Don’t want to repeat another 6 hour day and the potential for meeting that same UCLA technician who could be having a bad WEEK!  Plus, one chemo idea required a shot, so I needed to get that just in case.

So, I went for my scan on Weds, but the worst part was not being able to eat or drink until after 5pm and luckily I managed to swallow a bowl of oatmeal that morning. Oh well, one more day. The scan was fine until they unhooked my IV and I decided to leave a blood trail looking like a crime scene in the room. Everyone was running to help, but all I thought was you better have not collapsed my vein from this friggin scan after over 2 years of chemo- a scan wrecks my veins!?  Blood mopped up and I am wrapped up. I waited for the report which was done stat in one hour. I refused to take one more chance of mess up. The results showed the cancer had spread. It didn’t read well. My doctor called and I joked and said, “it could’ve been worse” and he said, “the clock is ticking, we will start something next week”.

I had one melt down which I wanted to avoid, but the words from the scan were easily understood and the clock ticking image made me feel as if I was hanging on by a thin thread.

Back to yesterday, UCI is worse that UCLA for parking and when I say cancer centers are all factories due to the number of patients, there are really factors that can be differentiated by a few teeny items. These are easy to see and most importantly despite the ole chemo closet UCLA days, one thing remained true, the care of the nurses for the patients.  This seemed to be missing in the dungeon like walk in freezer type atmosphere of UCI. This was also a one stop shop, the surgeons are oncologists, researchers, so some areas hold strengths while others are less of a focus. After a 2 hour wait, we get the initial visit from a Resident who seems to need help with my “complex” case. We were so thrilled that we faxed over 30 pages of records to see that no one looked at one page. I get it…they make you waste your time, so they can bill your insurance for a five hour visit while several residents actually try to decipher the history. Three hours pass and Jim and I are now teeth chattering seeking blankets and ski parkas. Nurses claimed it is job security and they could do nothing except give us an ice cold blanket. Who knew the blanket warmer at both Hoag and UCLA was such a precious commodity. (Hoag even warms the gowns) . As we move towards the three and half hours,  our homeless son, Alex calls saying he is making himself lunch before he leaves again to a friend’s. Good to know and I am hoping he is wearing clothes because for some reason I think it is so hot that he is sitting in his underwear. Second almost doctor (fellow) comes in and doubles the comments from the first about complex history. She takes a few more notes and then is off and out.

The real doc comes in with the Fellow and they honestly admit that there really isn’t a protocol for what is happening to me. He said ideally somehow it would be better to take a sample of this cancer as this cancer is now chemo resistant and has mutated into something that is not the cancer of 2010. I explain the time line that in less than a week my cancer is taking over and spreading fast. He mentioned his experience with some of the other drugs that were being considered, plus a few other discussion points that were not anything we didn’t know. He also mentioned that surgery was not an option, too much risk. They seem to work closely with USC on trials and ask if I want to be on a trial where there is a 50/50 chance I would get the drug. Are you kidding me? Guess the listening part about my son they didn’t fully understand.  I would take those odds for a drug working, but no drug…no thank you.  During this 10 minute visit, Jim and I had realized some of our own ideas after us focusing on my history for almost four hours in a freezing cold room. It was kind of like a torture chamber, but had some benefits. I knew those damn excel charts would come in handy. When you have nothing to do, but look at them for four hours we saw a theme with one drug that I had been on. Now, we are not doctors, but as we left I immediately sent an email to my UCLA docs ( one really enjoyed my chart, so maybe he even looked at it?) and mentioned our thoughts. We know they have their own ideas, but one doc did reply fast stating that it seemed logical based on the numbers and data.  They would let me know tomorrow.

Of course, that didn’t end my day. I had to see another doctor’s office to get this shot. After waiting only 15 minutes, I really thought it should have been an hour, so I could end my day with a total of 6 hours in doctor’s offices. The nurse pulled the needle out only to ask if this was for a horse. You couldn’t help but to laugh. Are you kidding me people? Who thinks this giant gauge needle is okay that is as long as my finger? Luckily, since I am not a horse, this needle was quickly exchanged with a normal needle. Doctor visits were done for the day. I am blinded by my anticipation of what will come next.

So, as there is still so much unknown, I can sit with Alex and discuss his birthday ideas, school clothes needs, and the fact that Jim will be registering him for middle school. He seemed okay and was sweet to reassure me that it would be alright.

In the meantime, I am winning my battle of chemo vs Joanie. My tongue swelling has gone down, sores are still there (trying to brush your teeth is an hour process!), and one more course of antibiotics should do the trick. I will do my best to keep eating now that I can swallow. I cannot let this cancer win even as it reminds me by causing me pain that it is fighting hard, but I am stronger. I have to be for my son, husband, and family and for all of you. I love you all! Make today great!


6 Responses to “Livestrong manifesto: “we believe that cancer should not control your life””

  1. Ruthie Says:

    Love to you Joanie – you are a warrior!!!

  2. Leah E. Says:

    Sending love and hugs to the strongest lady I know.

  3. terry fierle Says:

    hang in there strong joanie. yes we all do respect and love u.

    your friend terry

  4. Linda Kirsch Says:

    You’re brave and strong and spread sunshine all around. We all love you.

  5. Pendar Says:

    Sending you love and hugs.

  6. Kelli Says:

    You are such an inspiration, so brave and so strong. I feel so lucky to know you. You hold a very special place in my heart.

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