Saturday, June 23, 2012

Hoping to reduce the hotness...

So as I waited again for more scan results I found myself less worried this time. Not because I thought I would have favorable results but because what they tell me are just words. They are not deciding my fate with their results and recommendations. They are just as clueless as I am about the progression of my disease. They don't know this cancer any better than I do. So I am wheeled via wheel chair into my exam room. I am now a wheel chair rider and crutches user. I wait and my Oncologist and radiation oncologist were both present with fairly good news. I was happily surprised. The docs were thrilled by the Cyberknife treatment i received on my left side, it had resulted in complete healing. There were no hot spots or signs of cancer on the left pelvic side of my PET/ CT. So the unfortunate news was there was an increase of "hotness", a doubling in amount on the right side deep in my body near my nerves- sciatic nerve and more. Maybe this is why I have difficulty walking and soo much pain and swelling. My Docs want me to get Cyberknife on the right side since it did such wonders for my left side. I chartered new grounds with the Cyberknife treatment for cervical cancer. Yeah, it worked. So let's hope it works for the right side too!

The rest of my body is clear, clean and negative for any cancer tumors or hotness! So overall the news is good. I just need to get this hotness off my ass. Or off my sciatic nerve area. The hope is that my pain will decrease and I will be able to walk again. In the meantime I am filling my body with lemon water and rainbow foods. The rainbow connection has helped my body. Please continue sending prayers and rainbow connection food ideas. May the hotness become hope!

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Sent from my iPhone

Monday, June 18, 2012

Week from Hell

So the past few weeks have been a crazy ride. I think the pain I have experienced has brought me to a new level of insanity.

It started in Bellingham where my family returned from our getaway. I was at home in pain and unable to walk, my little guy was in child care and I had no idea how the rest of the day was going to play out. I needed to pick up my little guy and carry on with my day.

So Mom to the rescue. She drives up and takes care of me. Picks up my little one and offers to take care of us down in Seattle. My scan was a week a way and I could use some rest. My husband could use a break from his care taker duties too. We went to Seattle that evening.

The next day my pain continued to escalate. We visited the ER and I got a CT, X-ray and blood tests. I learned that my right ureter was obstructed. However my pain was a lot of left flank pain and some bladder pain. The plan was to get my stent replaced a fast as I could. The earliest I could get in was Thursday the 14th. The day after my PET scan. I said I would take the appointment. I would take whatever I could get. I was doing ok and taking my pain meds to cope. I was still on crutches and limited to what I could do. However the pain continued to escalate even more.

So here it is the night before my PET scan, June 12th and the pain was unbearable and so it was back to the ER where my records lived. So we checked in to the ER and had a similar run down except this time I was treated with some IV antibiotics for a possible UTI which was never diagnosed. But I couldn't help believe there was something going on with my bladder. The pain was intense and real every time I peed. I took solace in my fentanyl lolly pops that gave me quick relief that helped with my temporary pain. I was overwhelmed and tired of being told what would work and not work. I took brief naps during my ER stay and had to eat some food at 3:00 am which killed my opportunity for my PET scan the next morning. Of course I didn't want a bum scan so I was happy to reschedule. I remembered a medicine I was once prescribed to help with bladder pain and I got an Rx and boy did it help. So my job was to make it to Thursday afternoon, my surgery time. I was scheduled for 1:45pm. The case before went late and I didn't get in until 4 or 5 something. This is nothing new. The waiting was just part of my job of being a "patient ". Finally I had a new stent! My bladder was bruised and the previous stent was curroated and disgusting. There was some concern about the health of my kidney tissue on the right side and further testing is planned. My scan was rescheduled for Friday the 15th of June, the day after my stent replacement. So I had 30 minutes to eat dinner before I was NPO (couldn't eat for 12 hours prior to my scan.) I had a fantastic salad and gourmet chicken pot pie. My life seems so surreal. Going out to dinner does not feel like a normal activity. It feels like a moment in time where I enjoy a meal in between freaky healthcare appointments in my life. I would like to have less freaky healthcare visits and more dinner dates, specifically with my hubby! In the past week I have had a urology pre-op appt, stent replacement. 2 ER visits, a primary care set-up appt. a PET-CT scan. And this upcoming Friday I have my oncology appt. Oh and let's not forget I am waiting for my scan results! May the chips fall where they are meant to fall, in my favor!

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Saturday, June 9, 2012

Looking for a smooth road


The pain is just cruel sometimes. Here is my Saturday evening, out on the town. I take my moment to get out of the house for the first time of the day, due to childcare.  I make a bee line to the grocery store to get some groceries and supplies. The one outing I can do successfully as a handicap lady. I drive into my handicap parking spot and hobble into the store with my lovely cane in hand. I walk up to the scooters and pick out a lovely green one for the evening. I unplug it, get on and ride the store looking for what I really need "Poise" pads. For those of you who don't know what they are, they are pads for incontinence. Okay can my Saturday night get any sexier? No it cannot. I am driving through the store and realize there is now liquor for sale in the grocery store. I observe groups of people looking for their choice of liquor for the night. People my age dressed up going to parties. Then here I am with my Poise and cane in my scooter basket ready for my Saturday night. I check out and they bag everything except my Poise. Yes world I have an incontinence problem. I drive the scooter to my car and load my groceries and my POISE into my car. This 41 year old is ready for a hot Saturday night of fun!! I drive home to continue my parenting duties of cleaning and putting down my 3 year old to sleep. Can someone make a movie about my life already, a tragic comedy. I find this quite funny, the sarcastic side of me. 

The sensitive side of me finds this night a sad night. I dreamt for years about being a mom and what my life would be like after having a child. So having been diagnosed with cancer soon after becoming a new mom has skewed view of parenting. I think my woes go beyond that of a parent with a toddler. I have the right to complain. 

The next day I had an opportunity to get some body work to help my lymphedema. I learned some body compression through body wrapping. As well as some lymphatic massage. I was wrapped up in light fleece and a thin ace like bandage. The compression wrap made my leg look like the Michelin man. It was snug but doable. I hobbled around and slept in this wrap. Around11:30 pm I woke up in a lot of pain and needed to take off the compression wrap. My pain felt so intense that nothing would relieve it. The anxiety I feel with my pain is so real.  

It is almost a week later and all has gone to pot, as they say. The pain continues to dominate. I ended up with a heel size blister on my heel. On the foot that has no feeling. However the pain is preventing me from walking so I am living on crutches now. I am doing daily wound healing, ugh. I ended up in Seattle at mom's house last Wednesday. I was done with the pain. Friday I spent the afternoon at the ER. I was diagnosed with a right ureter obstruction. It is time for my right kidney stent replacement. So I spent time making phone calls and have a stent replacement scheduled, Thursday the 14th the day after my PET scan.

I have been sleeping a lot and getting help with childcare. I am working on a new help plan. My inability to walk and pain issues are showing me, again,  that I need help. Coming to terms with my disability is challenging. Please keep the prayers coming!
Sent from my iPad 

Sent from my iPad

Friday, June 1, 2012

It's been a long time...

It's been so long. I haven't written in a long time. That is supposed to mean my life is getting back to normal, right. Well yes and no. I am home and doing my best trying to avoid doctor appointments. I am trying to live a "normal" life. However I have crossed over to a new reality. A reality of having a handicap. A life of adjusting and learning about what I can and can't do, at least for now. Also living with chronic pain and the flare ups that have seem to have no pattern. I am in denial a lot of the time, believing I can do more than I think I can. I have gained a lot of weight as a side effect of my medication and my lack of physical activity due to my handicap status. Plumping up is a "good sign" because I have never gained weight while having cancer. However, this "good sign" doesn't feel very good for my body image. My ego is suffering. 

First of all it is very hard getting dressed, physically. My right leg being numb and my "handicap" doesn't work very well. Also many of my clothes dont't fit like they used to. I use 2 canes at home to walk. Using the stairs is scary and a very careful act. I haven't been able to wear anything but running shoes or crocs. Using the shower is scary but I do the best that I can. I have taught myself to drive with my left foot. I will only drive short distances and not on the freeway. I use the scooter/amigo at the grocery store which allows me to buy groceries. When I get home is when I need help getting my groceries to the kitchen. 

Canyon and I have decorated my cane with a variety of stickers including: planes, dogs, ice cream cones, smiling faces and dancers. When my leg really hurts I sometimes crawl which can be fun because I am at Canyons level. It also doesn't hurt. I've had 3 falls since returning home. One without injury. The second, a sprained ankle (my numb foot). The third a sprained finger. I am hoping that I have no more falls. From my sprained ankle I learned I have osteoporosis too which makes me more susceptible to fractures. Another reason to take calcium and be careful. 

It's a full time job taking care of my body and my health. This is why there are such programs in place like disability funding. Thankfully I qualify for disability, a  benefit I am eligible to receive due to my condition. It's based on my diagnosis and life expectancy. I also receive a minimal benefit for Canyon. This is helpful due to the expensive monthly COBRA( health insurance) bill. My disability income almost pays for our health insurance. I also qualify for an extension beyond 18 months of cobra due to my disability status. I am grateful for these benefits because I also had to finally let go of my job. I was on an a "leave of absence" but the reality hit, I am not able to go back to work. My disability and pain are my job. It was sad to come to this realization. I still feel capable in my brain but I can't comply with the physical demands of the job and it's a sit down job too. I knew "quitting" my job was coming. It's bittersweet. 

So I am off to new adventures and freedoms. Healing is my number one job. Cooking within the rainbow connection is part of my goal. Cooking in general is my new hobby. I did just make my first chocolate cake from scratch for my hubby's birthday. This was not part of the rainbow connection but it was a first for me, something  I have always wanted to do. It turned out pretty yummy too. Cooking and baking have been my latest hobbies since returning home. A hobby that has added to my extra pounds too. 

My next scan is scheduled for June 13th, a Wednesday, and my doctors appointment with my oncologist is on Friday, June 22nd.  I am scared because each scan feels like there's more at stake. There are less options the more diagnoses I have. Please send prayers, love, good vibes, healing powers. I'll take all that I can get. 

Emotionally I am on a roller coaster again. This is appropriate as we just visited Disneyland. I am not a ride fan so go figure I am the one on the roller coaster. Disneyland was fantastic, watching the excitement in my child's eye while riding a train. Remembering the "small world" ride and watching my son experience it was priceless. 

On my other days I am caught up in pain and managing my health. Getting prescriptions refilled again and again. My pain is intense as I write and I debate whether or not to take more pain medicine. Sometimes the meds work and sometimes they don't.

The worst part is the anxiety I feel along with the pain. The anxiety stems from the unknown duration of the pain.

Peace and Love to your mother, she wants your love.

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