I finished my last round of Stereotactic Radiation Therapy yesterday. 5 all done... they were long, sometimes scary, and now I am just tired. Tired from traveling to NYC so much in the last 5 weeks, tired from the waiting, and just the treatment in general.
Radiation follow-up is a visit with my doctor in 5 weeks and a possible follow-up brain MRI in 4 weeks. My radiation oncologist and medical oncologist want to make sure all my scans are timed up - to save us travel time and to get all the medical facts out there together as a team. Sounds good to me.
What happens now??
1. I continue on chemotherapy (yet another drug I take until it stops working and move onto another) - Carboplatin/Gemzar. These are IV drugs, I get them two weeks in a row with a break week.
2. I keep calling Intervention Radiology to get my passport placed in my left arm
3. We hope chemotherapy and radiation work, we can collect my T Cells to use in a possible trial
4. We continue chemotherapy, hope my brain stays stable and I get to have a good 5months of cancer dying before my wedding and hopefully after
Radiation is done BUT We still need help.
I cannot be alone until 12/26/17 for longer than a few hours. Why? I had brain radiation, I could have brain issues and need help. Nothing medically scary has not happened since I was hospitalized. If you know me, I will push myself even if I am tired or injured. I am stubborn and I have a hard time slowing down in general... so being on steroids makes that behavior worse. My doctors are fully aware of my history of doing crazy things (exercise, paint, drive without clearance, walk NYC for miles with no white blood cells, and you know drive and work out with a 5cm tumor in my brain. So here is why I get to be adult babysat. I also get fatigued easily. I can walk 2-3miles slowly daily, pick up stuff, fold laundry etc, but it exhausts me and I HATE THAT! I HATE ASKING FOR HELP! BUT I NEED HELP... damn and I am asking. So this is what our household still needs support or help for:
What could you do to help?
1. Come visit. Text or email me and please take me out of this damn house. I have people coming pretty much everyday except: December 19 PM, 22 AM and December 23 AM. I do believe I have family coming those two nights. Regardless you can come visit and we can move plans around.
2. Food Train. Please ask me or Kyle if you can bring food. We are actually low on help with that and I would love to cook and get back to me, but I still cannot cook dinners or lunch due to fatigue. I have no ride to the store and carrying groceries and cooking is too much for me to do. I get tired and have to recover from radiation and still am recovering from surgery.
3. Share the GoFundMe Page, we are so close to the end (minus my new medical bills). I appreciate all the sharing and donations
4. READ THIS TO EDUCATE YOURSELF AND SAVE ME SANITY
I am on steroids, so I am getting annoyed easily, so I am going to go all educator and social worker right now on WHAT IS METASTATIC BREAST CANCER. I am tired of answering the same questions about Cancer As I enter into my 7th year of having cancer, the constant either denial or lack of awareness I feel like either people do not listen or do not want to get the seriousness of what Kyle and I have had to deal with as a couple and what I deal with daily.
Here goes my rant:
1. Society tells us that cancer patients go on treatment, it has a beginning and end, and then they stop. This is mostly true for some early stage cancers. I am no longer early stage and because of my age at diagnosis, I have been on some type of Cancer therapy going on 6yrs now. I have maybe had 1-2 weeks off from one type of treatment, but I HAVE BEEN ON CHEMOTHERAPY, TARGETED THERAPY, OR ANTI-HORMONAL THERAPY FOR BREAST CANCER FOR 6YRS. Since I finished early stage chemotherapy, I have been on many types of oral cancer drugs (targeted, anti-hormonal, injections, and chemotherapy). These are only easier, because you take them at home, you do not need to go to the IV room, and people assume chemotherapy is IV only and that things are fine because you are not strapped to a pole. ALL CANCER TREATMENTS HAVE SIDE EFFECTS AND SUCK.
2. Why do I NEVER HAVE AN END TO TREATMENT? My breast cancer moved from the breast (who knows when) and reappeared in my pleural lung cavity in 2013. It was small metastasis, and was considered Oligiometastatic. I called it 3D as a JOKE. There is no 3D breast cancer, just STAGE 4. What is stage 4 cancer?? It is when cancer moves beyond its original organ or site, it becomes Metastatic. Metastatic Cancers mean you will be terminal, it is chronic, there is no cure, and you will be on treatment for the rest of your life.
Metastatic Breast Cancer is what I have had since 2013. My cancer moved from my breast, I was in remission for almost 3yrs, and it laid itself in my pleural lung cavity. At that point, I could only hope for a cure, I would always be in cancer treatment, and I had to hope and pray that each cancer therapy I was given would fight the cancer long enough in my body to give me more time than the 33mo the government stats said I had. I beat the 33months with metastatic disease. I will be on treatment for the rest of my life.
My medical life forever:
I get labs before each round of treatment (going into 3.5yrs of this)
I get scans every 3-4 months unless my labs are poor (CT scans and Brain MRIs)
If the labs and scans show regression or stability, I stay on my medication.
If the cancer grows, I could get radiation and stay on my chemotherapy (if body organs are stable).
If the cancer grows in my organs and I cannot use radiation, I change treatments.
THIS REPEATS
THIS REPEATS UNTIL I RUN OUT OF THERAPIES and trials.
Then MY BODY STOPS RESPONDING WELL TO CARE AND I GO ON HOSPICE.
THIS IS REAL..
I HAVE WATCHED 5 FRIENDS DIE THIS LAST YEAR, TWO ARE ON HOSPICE, AND MANY KEEP PROGRESSING ON TREATMENT. I WATCHED MY AUNT DIE FROM CANCER.... THIS IS WHAT HAPPENS
IT HAPPENS BECAUSE RESEARCH IS STILL UNDERFUNDED.
There is no end to my treatment. We hope Carboplatin/Gemzar works as well as it did for my Aunt Kerry in 2011. We pray I do not need radiation to my brain or bones again anytime soon. I just pray for a break here and there so I can do what I want beyond doctors. I have been in and out of chemos, surgeries, radiation, strange biopsies scans, etc for 7yrs... I am tired. I want some good news. That's all i ask.
to help funding for Metastatic Cancer Research please go to www.metavivor.org
thanks for listening to my steroidal rant. I am going to eat my soggy cereal i forgot about when typing this post
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