A new treatment, better results and new hardware for the New Year... New Hope...
I am so over 2017...
so many things happened, let me recap for you to bring you to date:
Started the year off in intense Physical Therapy for the replacement of my right hip / femur ball due to the rod that had been inserted in 2013, the screws holding it into my hip bone (Iliac Bone) had broken and the existing stress fracture spread within the upper femur. That took place Sept 22 2016, I started PT in January 2017 through May 2017.
Had a great vacation with my adult daughter in April, but came home to find fluid in my lungs despite being drained just prior to leaving. No wonder the mountains were so hard on my breathing... Went through a few changes with treatments, from Oral Chemo that was NOT doing anything for me to IV Chemo that broke me out in a horrible rash that looked like shingles. By November, we settled on Cytoxan (Cyclophosphamide) after Carboplatin failed me, Doxil caused the rash and Taxol after 8 weeks caused my fingertips and left foot to go totally numb (neuropathy). The Taxol did start to bring my tumor markers (CA 15-3 and CA 29 as well as CEA) down for the first time in TWO YEARS ...AND scans showed signs of tumor shrinkage and bone healing. It was a hard decision to go with, but the risks from the neuropathy becoming permanent were too severe. With my hip replacement on the right side in 2016, I'm already unstable on my feet, add to that what feels like a sleeping left foot at all times, I'm like a Weeble...(Weebles wobble but don't fall down)... when I stand and walk now... not good when one has weak bones already... I am bouncing off the walls and furniture in our little mobile home, so we are hoping that feeling will return to my foot and hands (I'm having a hard time trying to craft with out feeling my fingertips).
We also discovered the Bone Metastasis on my skull, at the back of my head, which is pressing on the brain lining (the dura) which means I have added a Neuro Oncologist to my list of caregivers at University of Michigan Comprehensive Cancer Center. We did a lumbar puncture to test the spinal fluid for cancer cells and that came up negative, but we will continue to monitor this. Basically, when I cough, sneeze, or bend over; the fluid in the dura (brain lining) is force to move away from that spot to the front of my head causing HELLISH headaches. In addition to all of this, after having my lung drained FIVE times at the hospital, I agreed to having a catheter inserted into my lung (which kept filling with cancerous fluid on the right lung, making breathing difficult) which I had a visiting nurse come to assist me and check my vitals while this was in place. This was just after starting the TAXOL and we noticed that after the first week, there was not much fluid to drain. We had it removed within two months of inserting it due to lack of drainage and thus, lack of necessity. I also discovered upon returning from my vacation, about the time we realized I had a serious cough issue, thinking it was all the lung fluid, that I had developed GERD. which combined with the fluid in my lung, made breathing very difficult, and I could not eat things I was used to eating. I ended up dropping approximately 25 pounds from what I weighed at the beginning of the year. Sadly, this included any muscle tone I had managed to build up during my Physical therapy for my hip early in the year. I find my self in 2018 needing to replace most of my wardrobe for below the waist... even my stretchy leggings that were skin tight on my bottom, now hang like flab off of me. My thigh / buttocks seem to have lost the most of the muscle / fat and I require a cushion to sit on due to the bones of my bottom all having metastasis (they are like swiss cheese - full of holes in the bones that hurt when I sit).
Just afters New Years, we had a second MRI done on my head, and the Bony Metastasis had not changed, or the inflammation, but the radiologist did find a new spot (from mri report) New enhancing nodular lesion is now demonstrated in the cortical subcortical region of right anterior insula (image 90 of series 1101, image 80 of series 1102 and image 133 of series 1103). This nodule also demonstrates comparative increased relative cerebral blood volume/increased perfusion parameters.New enhancing nodular lesion is now demonstrated in the cortical subcortical region of right anterior insula (image 90 of series 1101, image 80 of series 1102 and image 133 of series 1103). This nodule also demonstrates comparative increased relative cerebral blood volume/increased perfusion parameters.
Needless to say, this has Mike and I very concerned. A follow-up MRI is scheduled in March to see if there are any changes in any of this. I will also receive my Bone Scan, CT scan of Chest, Abdomen and Pelvis at that same time to determine if the regimen of Chemotherapy I am presently on is working to fight off these tumor cells.
As a result of changing to IV treatment on a weekly basis and the fact that my right arm is the only available arm to use for BP Cuff and Needle pokes... (a result of having my lymph nodes removed at the time of my lumpectomy in 2000, to test the nodes which were all negative), I had my first Power Port inserted in the right side of my chest 10 days prior to Christmas. This will allow the staff to access my veins without using my arm for all procedures and scans. It is painful but I am getting used to it being there. It does make treatment much easier and I no longer have to cover my arms to hide the bruises from multiple attempts to find a usable vein.
So here it is 2018, and my regular Oncologist is taking January through June to do Research, assigning me to a different doctor within the same clinic. She is still on site however, should she need to be consulted as is her Nurse Practitioner whom is familiar with my bumps and lumps and breathing capacity... and me in general. On top of that, the entire Medical Assistant staff is new this year. They are the people we first see to get our vitals and weight prior to seeing the doctor in clinic. When a patient goes to the same doctor as often as a MBC Patient does, you get familiar with the entire staff, from the people at the Valet outside, the information desk, pathologists, registration clerks, MA's, and the Check out clerks...and of course, your Doctor and Nurse Practitioners. As of this year, I have been a patient of this Breast Care Clinic for 18 years in all, from initial onset in May 2000, to the MBC discovery in May 2010, to today. I will be a patient with this clinic until the day I expire, when my body then will be autopsied for research by the doctors of this hospital, specifically for MBC Research.
I have been trying to make jewelry again, forcing my fingertips to work with the small beads and findings (earring backs, clasps, etc) and attempting to sew small projects. Presently, I'm making beanie hats in METAVIVOR COLORS that I will be sending to Metavivor to sell in their store to make money for research grants. I started this to get something for my own head as my hair is very short and thin right now, and COLD! Even in the house, (we live in a modular home) it gets drafty and we keep the heat low to save on our energy bill. Living on a fixed income means taking steps to not exceed our budget. It has been so brutally cold outside, I only leave the house when necessary; doctor appointments mostly, and combine shopping trips with those days already bundled up to go out. All of the items sold from our store here on www.tlcgardensandcrafts.com benefit medical research with 30% of all sales being sent to @Metavivor.org to be applied toward research grants for MBC studies.
I did manage to go to see my grand-daughter's cheerleading competition last week, after a day of Chemo, Grocery Shopping, a quick dinner and off to the school 30 miles East of us to see her compete. We were not able to stay to the end, it had been a VERY long and exhausting day. She was unable to visit with us, even when I was trying to ask her what size/color shirt she wanted (her mom was working that night so I thought I'd get it for her) she seemed to not hear me, and continued on with her team mates as if she were not permitted to speak to anyone outside of the team. When we offered to give her a ride home so she did not have to ride the bus, she called her mom and told her she did not want to be stuck in the car with me.
It was hurtful, but she is a tween. I'm told that is normal behavior at her age. Not from what I recall as a Mother or an Aunt, but times are different now I guess... This is an ongoing situation I have been dealing with - and have felt lost and alone without her in my life lately. She and my Grandson as well, have become distant since their father's mother passed away earlier in the year, from an unexpected brief battle w/ colon cancer. Even my daughter seems to be distancing herself, saying she cannot handle every time we talk, it's about how I am dying... I guess I need to work on my conversation skills, but then again, when you only get the chance to talk to someone once a month, after you visit your doctor because that is the only time they return your call, what is someone in my shoes supposed to do? Not tell her anything?
My hope / goal for 2018?
Kick this cancer to the curb. Fight with all I have within me to make sure the bad cells die and are replaced with healthy ones.
That RESEARCH for METASTATIC BREAST CANCER receives quadruple the funding needed and that other patients participate in research studies, providing tissue and fluid samples needed while they are still living, and donating parts of themselves should they parish from the cancer or other reasons, to enable the researchers to FIND OUR CURE.
To regain my closeness with my family. Sadly, being SICK for so many years, even those closest to your heart do tend to pull away. They are afraid of the end result and become numb to the fact that you need them. They build walls to protect themselves and as painful as it is to the cancer patient, whom is fighting every waking hour of every waking day to survive for THEM, THEY have feelings as well and we must understand that.
This year, Mike and I will have been married TEN years. I would LOVE to have a nice Anniversary party, with a vow renewal. With the weight I've lost, I should be able to fit into my wedding dress even! I would love to be able to DANCE with my husband again (hip replacement issues make it very painful), to the song we danced to at our wedding reception in 2008. Have the people that helped make our wedding possible present to celebrate with us (wedding party / family mainly) and have donations gathered for METAvivor at that party. Hey, it's my hopes and dreams here... I could say donations for us to go on a Beach Vacation together... ;)
To find a real house for the two of us and our furbaby, @MarcyKatCranson. With a basement and brick walls, no where near a train where we have room to get around and not run into walls that are too close together, having room for one day, a wheel chair to have access to get around in and no longer worry whenever there is a wind over 60 mph about having the house blow apart on us.
These are my dreams, the dreams of someone living with a terminal illness. These are not pleas for Pity Parties or sympathy... These are not statements to condemn anyone - but my feelings to share to help people understand what goes through the mind of someone constantly fighting for their life, for their family and for their sanity to be renewed... Someone, that just wants to have her life returned ...and not live being sick every day.