After finishing chemotherapy I went off the steroids and found my right leg pain unbearable for a 3 day stretch last week. I wound up at treatment in severe pain last Wednesday. Thankfully my wonderful nurse and MD did all the right things. They assessed my pain quickly. I was in tears and their immediate mission was to reduce my pain. After having a fentanyl sucker my friend watched me go from white knuckled and stressed to breathing and calm. The plan was to go back on low dose steroids until I have an appointment with a new pain doctor. The anxiety created by my pain was intense and debilitating. I found out that before going back on the steroids I had to take my pain meds to the point of almost knocking myself out in order to cope. Thankfully my little guy was with his dad and I could rest and get through the drama without effecting him.
The continued challenge is my numb right foot, partial numb leg, and the occasionally nerve pain jolts. I also ended up with a blister on my foot without knowing it was there. A new venture of foot care. What kind of shoes do I need to where now? I honestly feel like trying to stay healthy takes all my energy and time. It is like a new adventure everyday. This includes my feelings that bubble up about feeling like a lady. As vain as it sounds my femininity has been challenged. My right leg has atrophied. My left leg is often swollen and I walk with a sexy limp I must say. Last Friday, my last day of Cyberknife, I peed my pants. My body is a vessel of insanity.
So again here I am two treatments left and how do I move into my new phase of healing, again. The plan is to get a repeat PET/CT scan in 6-8 weeks. My scan needs to be done once all inflammation has healed, once I have rested. So how can I help myself get there is what keep asking myself? I know sleeping is key. I know that lowering stress is important too. The piece that is challenging for me is the diet. Increasing the rainbow of my whole food diet and decreasing sugary foods. I have given up so much dealing with cancer that the idea of taking more away depresses me. I want to cut out some sugar. I want to be as healthy as I can be but I am holding strong to wanting control of my diet. I have 6-8 weeks before my next scan so I am going to figure out how to challenge myself to eating healthier, more colors and less sugar. I want to invite anyone else who wants to eat a little healthier for the next 6-8 weeks to join me. Let's help each other out, in what ever way we can. Even if it means supporting one another with a simple blessing of intention before eating, mindful eating. Maybe I can reduce inflammation by adding rainbow fruits and veggies and decreasing rainbow gummy candy.
I have been thinking a lot about this challenge. Am I setting myself up to fail? Will it be too much pressure? No, is the answer. What I want out of this challenge is simplicity. There is a time limit and all I want is really to be a little more mindful of my eating habits with the help of my friends. So I am going to throw this idea out to you and the universe like a bag of pixie dust from tinker bell herself and see what may come. So if you want to join me in turning up your food mood in a simple way, let me know. I am going to figure out the best online support for "the rainbow connection", thanks Muppets for the name. Wish me luck in finishing my treatment!
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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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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?
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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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I am inspired!
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.
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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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.
