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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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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The cancer boat, come aboard,we're expecting you...

I am on a roll, maybe it's the steroids talking. I am feeling an attitude of light sarcasm. I haven't informed the blog world of my status in a while. First of all, I have made it to the emerald city with no emeralds in sight.

It's back to the same radiation treatment rooms, the same techs for the past 3 years. It's like a high school reunion. I must have received the most likely to receive radiation, again and again. 3 times now but a different area, my chest. This involves about 15 minutes of topless treatment. There are 2 rooms where I have a choice of looking at the beach or tulip fields as light panels. Yesterday I chose the inside of my eyelids.

It's hard to be back. I feel like all the positive visualizations and other mental exercises didn't work before. I can't walk well. I am one of them. I am just like all the hundreds of patients trying to make it and being beaten down by side effects and exhaustion. Cancer centers are not an upbeat venue. I wish...that in each waiting room there were themes. I would have liked a belly dancing theme yesterday. Like your in a restaurant but not sitting on pillows but über comfortable recliners will iced lemon water at our sides. The lights are dimmed and the dancers are quietly yet dynamically performing there traditional dance. Other waiting rooms would include piano music with a lady singer laying across the piano singing sultry medleys from Prince to lady gaga. My son recently saw the "senior steppers" at his school, one of the tap dancers was 94. Let's get them going on the 4th floor. I think the infusion waiting room could use a nice comedian. Someone who again uses musical medleys that include a few cancer jokes along the way. Mocktails should be served.

One can only dream. They should hire me to be the cruise director like Julie on the love boat. Why does it have to be so grim? Or the question is why do I have to bare witness to so much suffering at the center, of my family and friends?

U
Back to reality. My first duty of the day was to get labs drawn. As walk back I seen a young man bent over a garbage can puking. I again felt that pain in the back of my throat. I usually get it right before I am going to cry. I just felt the overwhelming feeling that Cancer really sucks, as does treatment. I had this image from "Sixteen Candles". Over the top Hughes movie. The parents of a geeky teen drive him to the school dance push him through the door while he is kicking and screaming from the other side. Forcing the teen to be social. Well no one is physically pushing me through the cancer center doors to treatment. I know I am here to do my best to become cancer free especially for my 3 year old. But this time it's really fucking hard and I feel distressed like the geeky teenager mortified to participate in a socially whack teenage dance.

Like I said I am no different then everyone here. We all have or come from a family. We all believe we are making the best decisions for our health. We are all trying to make it.

I was in a fog most of the day. Felt like I was so tired or in pain or just uncomfortable. I finally got my mojo back around 5 after a nap, some food, steroids, chemo and Ativan I felt better. I am hoping steroids and or the chemo will help my pain in my right foot and leg.

Thank you Jill for sticking by me through thick and thin yesterday. I am so grateful for all the friends that are volunteering their time to help get me to all my appts for the next 4-5 weeks. It is getting easier asking for help. It's also an excuse to see friends I haven't seem in a long time. Also another way to show my vulnerability. Ahh that is just what I love to do is share with you all my weaknesses. I just don't have a choice anymore. Ok I admit it, "I need help."

I finally called social security to apply for assistance and lucky me I qualify for the compassionate assistance. This means the processing takes 1-2 months instead of 4-5. I tell ya there are some great benefits to being really "sick". I am applying for metro accessible services too. So stay tuned for the exciting unfolding drama of my life.

Thank you!

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Cancer survivor made chemotherapy fun

I want to share a story with you from thestarphoenix.com: BY Rory MacLean - Dionne Warners doctor calls her a walking miracle (See the full text at http://www.thestarphoenix.com/Cancer+survivor+made+chemotherapy/6142859/story.html)

I am inspired!

Letter to Self

From Kauai with Love

Dear self, 

I am writing to you to tell you about your vacation and what it has been like so far. I know it is different than you expected. You were given another chance to face your changes. You were reminded of what you cannot do and what you can.

Everyone has their own image of vacation. For some of us we imagine quiet days reading books in the sun next to the ocean or pool and leisurely swimming when we feel hot. Others want to explore every nook and cranny of their destination, leave no stone unturned. The rest of us are somewhere in-between not moving and having a plan for every minute of our vacation. So where do you fit in self? In your mind you would like to fall in the middle. You would like to have the option to explore and lounge around.

However you fit into 2 new special categories. This first category is for parents of young children age 0-4. As a parent of a young child your chance for t a relaxing, book reading vacation is not an option. Even having help you still are the mom and play a large role during vacation with your little one. Trying to explore a lot will not work either because little ones are in tune with their needs and will let you know with great protest that today is a stay in day, a day to get grounded. It doesn't matter if it is the sunniest day of your vacation their inner need prevails.

The second category is the differently abled category. This is a new role for you. When you were in Kauai just 2 years ago, you didn't fit into this category. You now live with chronic pain, the inability to walk very far, and you have a weak bladder. Although you know these barriers to be true at home, trying to adjust to your different abilities on vacation is a new challenge. Needing a wheel chair is necessary here. It is an act of trust having others push you around. Like your toddler your body sometimes screams out your inner need to rest. Pain prevails. Luckily you have a lanai that you can rest on and see, hear and feel the beauty.

I know that you were shocked when you arrived in Kauai and realized your body did not miraculously heal. It took a few days to realize you will be experiencing Kauai in a new way, on wheels. Yes, Kauai is beautiful on foot or on wheels. You realized you are lucky to see Kauai on foot and wheels. You were able to race your toddler in his stroller. Surprisingly he always won. 

One of your favorite moments was needing to use the bathroom but again not getting the message soon enough. You were in a restaurant without a change of clothes. Luckily you were able to excuse yourself to the shop next door and buy and wear straight out of the shop, a lovely Hawaiian dress. Yes, it is challenging to get used to the new you. But when you are not in a lot of pain, usually you can have a positive attitude.

The important thing to remember self is you can always count on change. Things come and go. Our bodies change from being capable to incapable and often back again. Your toddler will grow. Your feelings change over and over. Your pain will come and go. Trying to be present with each and every crazy moment is the definition of living. Welcome to the flow.