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.

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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!

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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.