Sunday, November 27, 2011

No Sleep 'til Brooklyn - Beastie Boys

We are back in Bellingham. It's good to be home but a little bittersweet because it sure is nice to have my mom take care of us. Also, at home I look around my disheveled home and feel self-induced pressure to clean and organize. While making mental notes about all I want to "do", I am discouraged and reminded that one: I have limited use of my arms due to "sternal precautions", two: I have limited energy and do I really want to use it on folding laundry, and three: my neuropathy and pain is unpredictable and it feels like walking is like playing a game of roulette, spin the wheel and see if I can walk or not today. So being home reminds me of what I can't do. I imagine most people would love to have an excuse to get out of cleaning their house or grocery shopping. Well as bizarre as it seems, cleaning my house and grocery shopping are a luxury to me, a sign of normalcy.

I am still living in survival mode. I keep thinking about Maslow's hierarchy of needs and I am still at the bottom of the hierarchy trying to preserve my health and deal with pain. I have gotten better at appreciating the "here and now". I have lowered my expectations of outcomes, or should I say, I am more "open" to various outcomes. Having chronic pain really sucks. I don't know how people live with pain, it is really hard.

I am tired of complaining but we have good days and bad days, right? Sometimes my hubby and I just look at each other and shake our heads in disbelief. We get so overwhelmed by our life and the lack of energy that we have, but then that moment passes and somehow we rally and we keep on doing what we do. I try to remind myself that none of us can escape suffering, we just get it in different ways, at different times and in different doses during our lifetime, sounds like side effects from a medication.

Well I have had a rough time sleeping due to pain. I have been thinking that if I have to feel so much pain maybe others will have less. I like to think that there is some purpose to the pain.

Saturday, November 19, 2011

Today- Shania Twain

I made it out of the hospital last night about 8:30. After many chest X-rays proving that my lungs are sealed(sounds like the perfect gogo's cover.) after proving my pain could be controlled with oral meds. I am keeping my pain under control with Tylenol and dilaudid. I finally was able to see my little man after 4 days. He was happy to see his mama and I was happy too. I can do most things but am on "sternal precautions" which means no use of my arms for a while. I can't get out of bed without help. Just so glad to have all my tubes and lines out of my body.

I am officially bionic now. Recovering at my moms with lots of help from family. Not stuck in the hospital watching shows about cupcakes and wedding dresses, Having nurses say I need to walk when I just wanted to puke or getting chest X-rays everyday at 4 am. Life is good!

Wednesday, November 16, 2011

Getting stronger

Not getting as much rest as I'd like but doing well. Surgery went smoothly and after a long wait I started surgery yesterday after 4pm and woke up at 10 pm. They removed part of my ribs sternum and tissue. They used gortex to rebuild my chest wall and used a portion of my pectoral muscle to cover that. Also got the stent for my kidney. I am truly becoming a bionic woman. I have lots of tubes and my pain is well controlled by an epidural and Tylenol. It's hard to move much. I did get up to a chair twice today and the second time was much easier. I am in the ICU because that's where there was a bed.

I am glad to be done. It sounds like I won't be able to drive for a month due to the turning of my body. I miss my little guy and am waiting to have less tubes before I see him. He had a fun day at the zoo with his papa. Thank you all for the love and support as always. I am looking forward to getting home.

Thursday, November 10, 2011

Take on Me - Aha

Yesterday was bittersweet. I had the energy and the independence to drive from Bellingham to Seattle. I felt like I was on a road trip, listening to my music and looking a the stunning fall colors. I wanted to keep driving to some little town and go exploring. However my destination was back to the hospital clinic for a  consult with the Thoracic surgeon. Walking back into the doors of the hospital I felt sad. I was the patient, not the nurse, who would be helping others. Not giving information but getting information. I was the one who needs help.

During my consult I learn that my PET scan indicates that there are glowing cancer cells along my chest wall near my sternum. Removing it is not as easy as I had hoped. The moveable tumor below my scar will easily be removed but during my previous surgery, the doctor went between two of my ribs to remove the tumor in my lung and that part is glowing. So part of my ribs, cartlidge and sternum need to be removed. They will use some material, possibly gortex to recreate a "wall" and then a plastic surgeon will cover it with my pectorial muscle. So no outpatient procedure for me, 3-5 days in the hospital with a chest tube.

I scheduled it for Monday. Lets get it done. It is amazing that in one afternoon this procedure was actually coordinated. I will have the thoracic surgeon, his fellow, a plastic surgeon and a urologist working their magic on my frankenstein body. I am getting a stent for my kidney at the same time. I think I am an interesting case because the doc had never seen cancer come back like this, oh lucky me. The docs spent a lot of time looking at my chest and trying to figure out how they could cut and remold me, which was kind of bizarre.

I am truely becoming a bionic woman. I am nervous and disappointed to have to be hospitalized but I know I will be in good hands. I will continue to do what it takes to heal and appriciate the love I have in my life. As always I am grateful for all the prayers and healing thoughts. My body is changing but my spirit is strong. I have to believe that this is all part of a bigger plan and that I must be gaining some soul development through this journey. I surrender to the path.


Wednesday, November 2, 2011

Halloween exam

A plan is in place. I feel better knowing all my aches and pains have been addressed. Today was a bit surreal being Halloween. I went to the cancer center and people were wearing costumes, dressed as chickens, princesses, and i spotted a giant bag of M&M's on my way to the bathroom. I am a fan of halloween but waiting for my cancer prognosis while being helped by a chicken was a little funny. They also had a cellist playing in the lobby. She played very sad traditional songs. I felt like I was in a David Lynch movie. It was ironically funny.

My oncologist seemed pleased that my tumor was very movable so it's unlikely that it is grabbing on to my lungs. After my exam she also believed that there is no additional concern in my kidney area. Yeah. So I explained all my woes and as mentioned above a plan is in place.

First a stent for my kidney then remove the tumor. See a neurologist for my neuropathy and pain and try out a new blood pressure medication. Then some radiation to my chest and then some recovery. Continue physical therapy and When I am finished discuss a maintenance plan. My cancer is not at all textbook. It isn't fast growing but it seems to come back after three months after my last treatment.

I don't have a schedule yet. Everything is being processed and I am just waiting for phone calls. I am experimenting with some steroids for pain and atenolol for my BP. I am hoping they will counter act each other. So I will feel normal, not tired or amped up. Yes this is my life. I think it is kind of funny some days.

I am also dabbling in the world of logistics and disability income ect... I actually qualified for a disabled parking permit, so rock star parking for me. Ahhh the benefits of cancer.

I feel hopeful and blessed. In my appt. I shared a picture of Canyon, my motivation and inspiration. He deserves to have a mama and I will do what ever I can to be around. I wanted the docs to see my humaness. I am not just a person with cancer. I think they know, but my little guy is a good reminder.