New Song - Howard Jones

Well so far the Chinese new year has brought some relief. The dragon must have my back. I felt physically capable on Monday, the day of my dreaded consults withy oncologist and radiation oncologist. It was a lot more hopeful than than I anticipated.

I had my questions ready and the doctors came in and as you can imagine they have busy lives so they get down to business right away. The tumor board reviewed my case and looked at clinical trials and current research.

The recommendation was a combination of treatments. First plan of action is to radiate my chest wall including the full area of my chest wall resection. This cancer, Florence, is at the edge of my surgery site. Henrietta is also at the border of a surgery site. So everyday for 4 weeks a broad area on my chest will be radiated. This will include a weekly chemotherapy infusion to potentate the radiation. This will be a low dose of Gemcitabin (Jem-sighta-been), I told you it sounds like Jim beam. Last time I Received radiation and chemo. The chemo took 5 hours to infuse. This chemo only takes 30-45 minutes. I have to look for the positives.

Once I have completed my four week radiation chemo series, I will receive a special dose of radiation for Henrietta and florence. It is called stereotactic. It is administered by a tool called cyberknife or linet(spelling?)this dose will pinpoint the cancer and administer a dose that is 3-4 times the concentration. This will take 3-5 visits. There was one study in Korea that followed 30 women with reoccuring cervical cancer and the success rate was 60%. So it is my best option for treating Henrietta. So that's the plan after my relaxing vacation.

While at my appointment they were able to fit me in for a preplan appointment. This is where they set me up for radiation. They created a mold for my arms so I will be in the exact position each time I get radiated. They also gave me 4 blue freckle tattoos that use to line up the lasers of the CT machine. So the radiation folks will take my films and create the fields for radiation. The beauty is that I didn't have to come another day for an appointment.

I am glad to have the plan but more excited to go on vacation. Living in the moment, right. The other highlight is that I have had three days in a row of reduced pain and the ability to walk again, drive and just be mobile. It feels like a miracle. I still have a decent amount of pain but having a break has given me a new lease on life. I know I will have bad days but I am loving every good day that comes my way.

So cheers to a bright future.

It's alright to cry - Rosey Grier

And the roller coaster continues... My oncologist called this morning with the results of biopsy #3. The chest wall biopsy was positive for cancer, darn it. Sigh. It is amazing how I can hear the "it is cancer" diagnosis again and in someways I hardly react because it has become such a part of my life, now at number 6. On the other hand I noticed that I had a hard time remembering the rest of the phone conversation with my oncologist. I remember more clearly Canyon saying, "mama who are you talking to?" If he only knew. I know he gets it a little bit because he knows that I go to the doctor a lot. However he hasn't known any different his whole life, well as long as he can remember. This is his normal. My oncologist went on to explain that cancer site #1, that from now on will be known as Henrietta*,is a candidate for the cutting edge stereotactic blah blah blah blah radiation and I will be her first gynonc patient to receive it. I am the guinea pig. Then she continued to explain that cancer site #2, that from now on will be known as Florence*, will need radiation, maybe 4 weeks, and concurrent chemotherapy. It will be a new chemotherapy drug for me, she said the name and what I heard was Jim Beam. Probably my defense mechanism kicking in to make it sound like a fun party drink, honestly though it really did sound like Jim beam. This chemo is supposedly less harsh then the others I have weathered and no hair loss.

Monday is the face to face consult with the radiation oncologist and my gynoncologist. This is where I will write things down and have my hubby there too. My oncologist is hopeful. Still I am not looking forward to this consult. I don't want to talk percentages of success,but I need to know because, ultimately, I get to decide if it's worth it. Is it worth the pain and physical suffering of treatment to hopefully stop this cancer that has been so aggressive and won't take no for an answer. How much will more treatment effect the quality of my life? Could this be the treatment that finally stops cancer? Questions that can't be answered. We are moving into the ethics portion of life here, I tearfully jest. I have spent a lot of today on the feeling roller coaster. So yes I have gotten used to cancer but it still is a hard road to keep traveling on.

On a more positive note, I have this amazing doctor that I think I have mentioned. He actually provides his patients with a direct email to contact him if needed. He said he has never had a patient abuse it. Anyway he is a neuro oncologist and he is helping me with my gimpy right leg. He gave me a new medication called Lyrica for nerve pain. The first night I took it I woke up and felt like a new woman. I could walk! I was healed! However, when I took my daily dose I felt like I was spinning. I was so dizzy I felt drunk. I was told this would subside in 3 weeks. I was too dizzy and opted to decrease the medicine first. Luckily I could email my doctor and discuss my side effect and he could email me how much I should take. I almost giggle in delight the ease of the communication. Really it is the small things in life.

I have been stuck inside the last few days due to the snow and cold weather. Thanks to my new medication I did have some fun in the snow with my family. The other good news is my doctors gave us the ok to take a vacation before I start treatment. So we got out our miles and booked a trip to Kauai, HI. We are are leaving in 10 days. My mom is coming with us to help and enjoy some sunshine. So I am hoping to get some healing sun from the garden island. There's our silver lining in the clouds.

*I chose the names for my cancer sites after two very important women. Henrietta Lacks the woman who unknown to her provided her cervical caner cells for research. They became the famous HeLa cells. HeLa cells are an immortal cell line used in clinical research. They were used to help create the polio vaccine. Florence is of course named after a tough fighter and helper, a public health nurse hero, Florence Nightingale. May their names give me strength and may the force be with me.

You ain't seen nothing yet

A Somewhat lucky Friday the 13th. I felt like I am recovering from a 5 day party- minus the party. Too many sedation medications and anesthesia makes a girl feel icky.

For biopsy #3, which was near my left armpit beneath my rib,next to my pleura at the termination of my gortex chest wall reconstruction, I was not allowed any ibuprofen or Tylenol for 12 hours before the procedure. I really need those medications to function due to my leg pain. So I was in a lot of pain and cranky despite my 37 mcg/hr fentanyl patch and prn dilaudid. I really do not like narcotic medication. I couldn't eat so I was taking zofran and dilaudid to make it until my procedure. My sister-in-law thankfully volunteered to come to Seattle and help. She wheeled me around in a wheelchair with my bags of goodies. I was told the procedure would be a total time of 6 plus hours, so I was prepared for anything.
I was pretty stoic because of the pain. Once I was in a bay 3 waiting to get my port accessed I let the nurse know I needed something for pain, So more zofran and dilaudid. Then the procedure was explained as a challenge. They tried to use ultrasound to find the biopsy site without any luck. The gortex blocked any view into my chest near the biopsy site. So we moved to CT. There was a greater risk ofinjuring my lung and a possible pneumothorax. Oh joy. They ulongs long needle/catheter to enter my chest. They would take a CT and then enter the needle, take another CT and enter the needle a little further. They continued this slow process, used lidocaine to numb the area, and then used a grabber that made a loud click to get the tissue they wanted. I heard 4 clicks. Meanwhile, I was in la la land with versaid and fentanyl making me sleepy. It went very smooth. The young fellow who did the procedure was thrilled, she said I made her day. So maybe it was more difficult than I realized. I was moved to a hospital room to recover for a few hours and then driven to my moms. I am finally feeling normal this evening. After a night and day of sleeping. The drug fog is lifting. I am heading back home tomorrow.

Oh yeah, the good news, my oncologist called and I found out that biopsy #2, in the right pelvis was clear!! The recommendation for the cancerous site on the left is a new cutting edge type of radiation that has a 60% success rate. She mentioned a chemotherapy to potentate the radiation too. Biopsy #3 results will not be available till Tuesday. I am hopeful that biopsy # 3 is clear. Either way she said a vacation would be fine prior to treatment. Next step is to make an appt. with my radiation oncologist.

Life is crazy. This week has been insane. I am ready to get home and get grounded. Eat some healthy food, make some lists, play with my little guy and be. Maybe enjoy a little snow. Thank you again everyone who continues to support me and my family. We appreciate it so much. Peace out.

Sent from my iPhone

The week from....,

Well finally recovering from biopsy 1&2 and I get a call today that they have an opening for my radiology guided biopsy of my chest, tomorrow. So, YES, I am headed back to the hospital tomorrow for another outpatient procedure. This should take about 6 hours and I will have conscious sedation. My procedure is at 1:00. I am hoping to go back to Bellingham Friday. I am ready to have a medical break before it becomes a medical breakdown. At least I am getting this all done quickly. Calgon take me away!

Sent from my iPhone

Recovery

Biopsy 1 and 2 done. I am in bed at my mom's house. It was pretty quick as far as outpatient surgery goes. I checked in at 9:45 went back to prep at 10:00 and in surgery by 12:15 recovered and out the door by 3:45. It seems long but it was quick for a 30 minute surgery. The bad news is that the mass on the left which is the size of a thumb nail is cancerous. So no matter what some treatment plan will be recommended. So I am looking at possibly more radiation and chemotherapy. I am also looking at the reality of this disease continuing indefinitely. I am tired of this journey and have to consider my quality of life when the treatment recommendations are presented. I want to try and do everything in my power to be here for my sweet boy. Friday I will know the results from the right sided biopsy and I have not scheduled the chest biopsy. Today I am off to see the neurologist about my leg. I can't walk much but my pain is better.thank you all for your continued prayers.

Closing Time - Matchbox 20

Well today was results day. We have had so many " results" days. I am used to them but still get nervous, of course. I met with my gynoncologist. We knew the news wasn't good when the doctor comes in with the nurse coordinator. Shit. First she looks at my incision scar from last month and is impressed with the work from plastics. Then the unknown but "concerning" news was delivered. She said my PET/CT had 3 hot spots that are "concerning" to her and she would like to get biopsies from the sites and make a plan depending upon the results. Shit. So as usual I am learning about these shitty results while undressed from the waist down. After hearing the news I get to have a vaginal exam. Ooo lucky me. Ok, I do use sarcasm as a way to make light of the absurdity of life sometimes. I really am glad to have the care that I do and that my hubby is by my side through all of this. I am blessed to spend time with my amazing boy, my inspiration.

So let's take care of business, figure this out. Tomorrow, I will be at the hospital to get a biopsy of two of the three hot spots, they are in the pelvic area, right and left. I am waiting for an appointment with radiology to get the third hotspot removed which is in my left upper chest, where I just had surgery.

There is a possibility that all of these hotspots are not cancer and then I would be free for 8 weeks until my next scan. However, my track record has not been so good and my doctor is "concerned". The chances are high that this is cancer once more. If there is cancer in any of the sites my doctor will again, review my case at tumor board (All the docs conference about my case and make a group recommendation based on their expertise and the best practice science).

If there is cancer in my chest wall again, it is less concerning because it has not been radiated. There is still a chance to be "cured" and " treated". If there is cancer in my pelvis that is a bigger deal because it is less likely to be cured by western medicine treatments. So Friday I should have the results from my biopsy. Once the results are in, my doctor wants to have a "serious" conversation with me about my options. I think we are getting into treatment percentages of success not being that high and there is the whole quality of life piece too. Ugh, I am ready to talk about all the options and hear the doctors point of view and recommendations. I have to say I am happy that I don't have any cancer in any in my vital organs. I am still determined to do whatever it takes to survive and enjoy my life with my family.

Right now I feel it all: sad, relieved, scared, angry, irony, and love. After my appointment, I went out to dinner with my hubby, had a pomegranate martini and we cheered to love. We talked about some "what ifs" and laughed at the view of the strip mall from our restaurant window. Then we returned to my moms and there was my little 3 year old inspiration laughing and hiding in the closet. He jumped out, set up my mom's yoga mat and accidentally did a front flip and landed on his feet. We cheered in awe and he loved the attention. These are my little nuggets of bliss for today. I do have to say it was funny being told I may have cancer, again, while being undressed from the waist down. I guess it is a safety net for them, because I won't run crying and screaming through the halls without any pants. So stay tuned and please send love, prayers and healing juju as I know you all continue to do.

It's 2012! A new year. A time for new beginnings. Also a time for reflection and new year resolutions if you dare. I looked back at the word I chose to begin 2011 with and it was "expression". I think that that word rang true for my year. I continued to spill my guts to anyone who was interested in reading my blog. As we all know the trend of my last 3 years have included my buddy ole pal, cancer. We have grown quite close over the past 3 years. each year gets more challenging in our life dance. Last year was the most difficult dance yet, a tango samba with a Krumping finale, translation: treatment was no cake walk and more surgeries to add to my list and some chronic pain left overs. I can say I am cancer free and I can at least say that for 9 more days. I'll take everyday I can get!

Today has been fantastic. I have been slowly dismantling the Christmas tree, My son, playing with his collection of hot wheels and listening to classic 80's pandora. Hubby is working on some project. Everyone is in a good mood and occasionally I stop to "make a car or bird talk", Canyon's favorite activity. I also take time to do a little living room karaoke if a good song comes on. Eye of the tiger made it into my repertoire, using a rook of paper towels as my guitar or microphone. Canyon was a little bothered by mama being so weird I think.

January 5 is my next PET/CT scan with the hopes that there is no visible cancer lighting up in my body. I will get the tests January 9th and a plan of either monitor or attack. Of course not knowing a plan as we have been so used to is still sucky. We will have some form of a timeline and hope to squeeze in a vacation this winter. I will be in Seattle for a week also having more follow-ups with the thoracic surgeon, and neurology oncologist. The neurologist has given me a little more faith in the medical system. He actually replied to an email within 8 hours the day after Christmas. That was a Christmas present. We are trying to get my pain managed. He upped my fentanyl patch from 25mcg to 50. After 4 days I realized it was too much, I kept falling asleep all day, not fun. So I stopped that and am still figuring it out. I did have some fun Christmas shopping experiences with a wheel chair, but I still haven't used the Amigo carts.

Again I was blown away by the generosity and motivation of my coworkers. They put together a bake/craft sale that was amazing and generously gave me all the proceeds and then some generous anonymous co-worker matched funds! Talk about the spirit of giving. I so appreciate it! I have been getting bodywork 2x a week and have been able to cut down on my oral pain medication and have noticed a difference, which is so rewarding. Thank you all so much, over and over I am reminded of how blessed I am!

I have seen a trend so far in my cancer. It seems to go away with extreme surgery and is absent during treatments but at the 3 month mark it seems to come back, or at least it has done this 3 times. Luckily it has been small solid tumors and hasn't effected any organs. So what to do, what to do? Try to enjoy every moment.

I actually made it out to the Prince concert with my girlfriends from high school. We saw Prince in 1984 at the same venue and we were back in 2011. I made it through the concert but had to hobble out leaning on my friends on the way out.people thought I hurt myself at the concert. It was kinda funny. You really have no clue what people are going through on face value.

I want to pick a word for 2012. It feels a little easier than resolutions. Anyhow I have learned expecting certain outcomes doesn't always work. Yesterday I made it to the park with my hubby and son. I got to watch them play. We also happened to be at the finish line of a marathon. Sometimes i feel sad when I see races because I miss being able to run. Now I would be happy just being able to walk pain free. Anyhow, I thought about looking at what I have instead of what I don't. It comes back to Attitude. So that is my 2012 word "attitude". It is something I can control.

So here I come 2012. I plan to live a long long time dear cancer. I have so many people on my side that just the energy alone that we create has more power to heal than any drug you encounter. Blessings to all this 2012.