Just can't get enough - Depeche Mode

It's hard to keep writing about the cancer experience. I guess I don't have to, it's my choice. However my life is pretty cancer consumed and its just inevitable. This is my processing room/blog. I imagine myself sitting on a therapist couch that is soft with fuzzy blankets that keep me comfortable in my fashionable pajamas. I think I shall wear a feather boa too. As my son would say, "let's get cozy". He likes to cuddle and watch a show or read a book. So here I am getting cozy and about unload/upload my situation out into the world/cyberspace for curious minds. 

And she starts....My son is and as I will continue to say, my inspiration. I love being silly with him, reading stories to him, and play hide and seek. I just can't get enough sometimes. With my low energy we often find ourselves spooning on the couch while he watches a toy train videos and I sleep. I usually wake up to him gently stroking my cheek and looking into my eyes several times during the show. Just checking in with mama. I want every second to last extra long. I want to feel his soft hand resting on mine as we sleep together in the backseat of the car. I want to remember his genuine care and compassion he displayed by giving me a heating pad for my leg, a soft pillow, and handing me my cane and then telling me he is a "doctor for women". I want so badly to come out of my radiation appointment and answer my sons bold questions in an equally as loud voice. When he asks confidently in the full waiting room, are you all fixed now mama? Do you feel better?  I want to yell, "yes I am". I want all the others in the waiting room who are witnessing my child's reality to stand up a give us a movie slow clap scene. Because in my movie everyone is healed and we grow old together, frolicking on the beach, watching great sunsets in Kauai. 

Today I was enlightened by a new view. A big picture view of what life looks like. What does it look like? Day to day my life is challenging, I am living and "working" treatment. My schedule can change in a day due to my doctors. I can try to have more control but it usually doesn't work. I still ask questions but I am still flexing to their needs. 

The bones of the story... My treatment continues. My general radiation and chemo were extended a week. Why? I am still trying to figure it out. I have 6 more radiation treatments to my chest. 2-3 stereotactic treatments to my chest tumor and 6-10 cyber knife treatments to my lady loins. So I don't really know when. All I know is that I may be done around April 6. 

I also know that last week I had three little pieces of gold inserted into the belly of the beast- My vag cancer. My docs placed the leprechaun treasure with the intention that they can direct the cyber knife radiation directly to my cancer. It really hurt. I had my first fentanyl lollipop, it helped a little. It was a quick yet painful procedure. I had my nurse hold my hand but I yelled, "Mother Theresa"  three times, for each injection. It hurt f$ing bad. On the 3rd marker I couldn't help it and dropped an f- bomb. The ironic thing is that it would have taken more time and pain to be medicated for the procedure than not. So it is done I have my gold down under. They can now find and destroy the cancer. 

I just had my planning scan and now know yet another CT machine. I always ask a lot of questions about the flow of the office, clinic and hospital. I miss being on the other side. Even though I am a nurse and a patient, I am always the patient first.  I am at the mercy of the system and the doc. I have to double and triple check the plan. Today it was labs. It took 3 try's to get my current labs. I had to insist that they review today's kidney function labs not last weeks. They said they could use labs from a month ago. I said I would like to have today's labs. My kidneys have been impaired and why not have the most current data? It's all good and done. I learned that one cyber knife treatment lasts an hour. This throws a new challenge for planning. 

Final remarks... As I sit and wait for a ride, I watch people moving through the hospital busy on a break, going to and from appointments, or waiting for surgeries. I feel apart of it and not at the same time. I am here just like they are but lacking urgency or motivation. I am a patient and my job is to be patient and wait. Today I am doing my job. Sigh. 

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Sent from my iPhone

Here's the latest medical dramas

Ok it is time for an update. I have been slowly improving my feelings about this never ending illness. This may be because I am nearly halfway through this current cancer hurdle. There is a pinhole of light at the end of the tunnel.

The first week of treatment felt like torture. I wanted to crawl under a rock and hide. I felt like I was doing a cancer walk of shame everyday. I felt defeated and sad to be back at the cancer treatment center. On top of the gloom I felt icky and found out I had a UTI my first day of treatment. After 3 days of antibiotics my physical state started to improve and I felt like a human again, or at least semi human. I am still trying to manage my leg/foot pain. A cane seems to help.

On a positive note, a highlight of my treatment has been all the friends that have volunteered to drive me to and from appts. I have reconnected with so many friends that I rarely get to see. This has helped give me the energy I need to face the day and the chronic pain.

On the clinical side of my story, I continue to get daily radiation that takes about 15 minutes which is mostly set-up time. The radiation machine is above me while I lay in a mold of my upper body. The techs attach a "cone" to the machine. It's like camera lens. Then they slide in a square like aperture with a shape cut out from the middle. To my surprise the shape looks like the continent of Africa. This is placed over my chest and matched up with the large sharpie drawing on my chest. There is one other puzzle piece shaped like a square to complete my treatment area.

Chemotherapy seems mostly benign compared to the other chemos I have weathered. It is an hour infusion and I get to decide how much hydration I need, usually I go for about 300cc of NS. I usually pee a lot and don't sleep very well because of steroids. I have no other side effects.

Friday I had an appt. with the doctor who will set up my cyber knife treatment. We reviewed my PET/CT and looked at the cancer in my left vag. The plan is that he will implant/place markers in the cancer site. These markers will embed in the site for a week and then I will have a CT to guide the cyber knife directly to the cancer/markers. He believed he could eradicate the cancer with an 80-90% success rate! That is a rate I like. It will take around 6 daily treatments. So it looks like I will be in Seattle another week or two after I finish my general chest wall radiation. However I feel a little more hopeful that I will be cancer free for a while. I would welcome being pain free too but I don't think that will be happening anytime soon.

Monday I get to show up at the hospital at 5:45am to be put under for a routine outpatient procedure. Time for a new urinary stint. They need to be changed every 3-4 months and the expiration day is here hence the UTI. I tried to get the cyber knife doc to place the markers at the same time but there wasn't enough time.

There is the practical low down. The emotional low down is erratic. I haven't really left the house much due to pain. I do go outside to get fresh air. My son is with me for 4 days and up in Bellingham with papa for 3. It creates a little stability for him and I get some complete rest days. I sleep a lot. Hubby seems like he is working harder than he should. This lifestyle can be very draining. I don't recommend it at all.

At the end of the day when I am lying down with my son I think again about giving thanks. It is always about people- family, friends. I especially let him know how thankful I am to have him in my life. My main inspiration to madness.
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