My 1st Blog entry, August 15. 2021
Posted Apr 27, 2020 by Elaine Lord from my Meal train
Hi there, So I was heading to my 8:00 a.m. chemotherapy Thursday and I did a number! I passed out … For those that know me, it doesn’t take alcohol for me to pass out. I pass out easily and many times throughout my life, It’s just been one of those things.
I fell in between my bar stools and hit my temple on the corner of the table. I managed to get up and head back into bed. I was able to re-schedule my chemo treatment with Taxotere for that afternoon and still see my oncologist, Doctor Kim. My last of 6 chemotherapy treatments, I wanted to get it over with. My Pain Level for my leg, between 1-10 meaning 10 as worse, I was a (PL 6-7) able to walk but with a limp.
I was asked what happened? Doctor Kim asked if I could put my foot up to my thigh then it’s not broke. I was able to do that. I struggled a bit, it hurt to do, but I did it. She said to just keep an eye on it and if it worsens in two weeks to go get an x-ray. In my mind I did not break a bone, My placebo effect.
The placebo effect— triggered by the person’s belief in the benefit from the treatment and their expectation of feeling better, rather than the characteristics of the placebo. ‘Impure placebos’ are medications that have an active effect on the body, but not on the condition being treated.
It takes 3-4 hours to get my chemo treatment as the day continued my hip/leg was getting sorer and I could not walk on it when it was time to go home. (PL10). I had to call David. He actually wheel chaired me to the car. I had to lift my leg up to get it in the car and hold on to him to get into the house back in my bed.
My chemotherapy side effects knock me out for 3-4 days. I concentrate just on breathing for the most part. There’s nausea, fatigue and sitting on that potty. I’m in bed for the most part unable to get up. Taking hydrocodone, sleeping pills, steroids, nausea pills, acid pills, diarrhea and constipation pills to get through these days. My chemo was a perfect set up for my leg to start its healing process. For the first couple days my leg hurt when I put pressure on it (PL9). So I stayed off it. Going to the bathroom I held on to chairs David lined up for me and an amazing door holder to pull me on/off the toilet. Then back to bed.
The drugs I take with chemo kept my hip/leg pain at a low level as long as I didn’t walk on it. (PL6-7) After the first week I was starting to put more pressure on it. With each day of the two-week time period my doctor gave me I did not think I broke it. I was dealing with chemo, so I was on all those drugs. The side effect is sleeping your days away. My hip/leg was slowly feeling better with each day passing and it never got worse.
We got our stimulus checks yay! We revamped my salon. I was bending over, picking up boards, climbing on ladders painting walls and old trim. My pain was totally still there (PL5-6) but tolerable. I still limped and took Hydrocodone when I did too much because why not, it took the pain away! All this time I’m thinking I must have just tore a tendon or sprung my leg or tore something in my hip. But not broke. Pretty soon it will just keep getting better and the pain would go away, just be patient.
It was time for scans to be taken to see the progress of my cancer from chemotherapy treatments. I received a phone call at 9:00 pm from my Oncologist. Dr. Hahm with concern. She read my scans but was concerned more about my hip and if it bothered me. I was surprised she asked. I told her what happened, and that I continue to have an annoying pain that doesn’t want to go away. (PL5-6) tolerable. She ordered x-rays of my hip and referred me to an orthopedic.
COMPARISON: CT scan of 8/6/2020 and nuclear medicine scan of 8/6/2020
FINDINGS: There is sclerosis about the surgical neck of the femur with deformity compatible with an underlying fracture. The remainder of the hip joint appears unremarkable as does the remainder of the femur.
Dr. Bonnaig, my oncologist saw my x-rays before I came in his office and was very surprised when he saw me. I was not hopping into his office in a lot of pain which is what he expected. He showed me the fracture line and how it has been healing on its own.
Normal protocol is I should have gotten surgery done right away. Placing screws and rods in my femur to keep it stable. Because I am a cancer patient, I would be at high risk for surgery. He said this does not normally heal this well and I was a blessing in disguise that I did not get surgery in April. He asked if the way I feel was hindering my lifestyle. It was not. I told him the annoying pain does not go away though. He referred me to my radiologist.
Radiologist saw my Xray and was just as surprised as the orthopedic with my condition when I walked in the room. He also said my healing just doesn’t happen and he agreed when I asked him if this was a “God Thing”. He recommended radiation for precaution and because the femur bone will not heal completely with cancer diagnosed in that area. We did 10 rounds of radiation on my femur area. My fracture can start healing completely now. Physical therapy was also ordered.
Physical therapy was a part of my regimen for a few months. I was able to work in the salon. But could not stand on my feet for a long period of time. I can only handle a client a day. My pain was still annoying but tolerable. (PL4-5). My therapist said it takes a year or so for a broken bone to completely heal.
I joined the gym. I wanted to strengthen all my bones since cancer is in them and I thought this would help heal my femur.
I rode the bicycle and did a class. I set the bike up wrong and blew out my right knee. A baker’s cyst would flare up behind my knee. I quit going to the gym thinking the exercises was causing my knee to continue to hurt. I asked my oncologist for an x-ray of my knee.
Bone scan 11/18/2020.
FINDINGS: No fracture or dislocation is identified. The joint spaces are maintained. No periarticular erosion or osteoporosis is seen.
No significant degenerative change is seen. No destructive lesion or periosteal thickening is seen. The observed soft tissues show small volume joint effusion with a calcific density in the suprapatellar region.
For the next several months I did not exercise to keep from aggravating my knee.
I started back at the gym when I found out their Silver Sneakers (low impact for seniors) class was starting back up again, Covid cancelled the class. The class was still only me and 2 other people at times. I loved it when I was one on one with my instructor.
I walked at the park and went to the gym to strengthen my hip and knee. My instructor gave me an exercise to do for my knee—set up against the wall and lift my knee a few inches off the floor, hold it for a few seconds, then lay it down. Repeat, I did that a lot.
I was putting up with an annoying but tolerable pain it did not keep me from hiking, work, normal activity etc. (PL 4-5) The most I notice it hurting was getting in and out of the car. I had pain killers on hand if needed.
While getting out of my chair I had wet flip flops on, I fell on my butt in the grass!
X-ray’s were ordered.
Released By: JAMES E ROBERTSON, MD 6/15/2021 8:24 AM
: No fracture or dislocation is identified. The joint spaces are maintained. No periarticular erosion or osteoporosis is seen.
Mild degenerative change is seen, particularly at the first MTP articulation. No destructive lesion or periosteal thickening is seen. The observed soft tissues are unremarkable.
Acute nondisplaced fractures may be radiographically occult. Repeat imaging in 7-10 days is advised if symptoms persist.
I also talked about my femur still feeling soar to my orthopedic as well. I told him my hip pain was still their and my knee was soar. (PL4) He suggested I get a cortisone shot in the knee and a hip replacement for my hip. I was shocked!! I looked at him and giggled a bit and said I was actually wanting an order for physical therapy. He said “Oh! well I can get you that”.
He never recommended anything for my foot. I was very disappointed with this visit. I took it upon myself to wear an old boot for the next several weeks. Each day my foot was getting better.
I kept postponing the therapy appointment. My every three-week chemotherapy treatment and life’s activities were keeping that from happening. My foot was slowly healing by wearing the boot. I started making smoothies and eating more fruit and vegetable, a better diet all around. I’m not perfect though.
When I was able to walk without the boot I started back up walking at the park. My silver sneakers instructor gave me an exercise to do while walking which is what I chose instead of physical therapy.
She said to concentrate on all your bones in the bottom of your foot. With each step you take, flatten your feet like a tripod or “walk like a bird” was my visual. All three points needed to be pushed into the ground as you take each step during your walk. The ball of your big toe, little toe and heal. Imagine your foot as a tripod. It was hard to do at first, but I practiced and got better at it. I also took longer strides with each step. I tried walking 3 to 4 times a week. I got up to 2 1/2 miles. This really helped my hip and the soreness. (PL2-3)
With all that has gone on this past month, from finding cancer in my brain, surgery, and healing, I am taking note right now… the soreness in my femur, knee and foot is gone. I haven’t thought about my pain in a while so I cannot pinpoint the time it quit hurting. Pain Level is 0.
I am taking 2 drugs, muscle relaxers and steroids for fluid to not build up in the brain. No Hydrocodone, pain killers have been needed. I avoid taking them because of the constipation side effect.
Reflect on my journey of broken bones and swollen tendons.
My bones are brittle because of the cancer in them. That soreness I have felt for over a year is totally gone. I believe and I am proof that with time your body can heal itself.
My oncologist has given me her regimen for my cancer.
Continue to come every three weeks to receive your chemotherapy treatment which consist of Herceptin, Perjeta, and Zometa this drug is given every 12 weeks. Your body will eventually get immune to these drugs we are giving you. It could take 2 weeks, 2 months 2 years or longer, this is the sad part of not knowing when this will happen, but we are here to keep you monitored and when this does happen, we will switch you to stronger drugs and there’s a lot to choose from for your type of cancer. We keep using targeted drugs until your body wears out. You can not cure cancer when your stage 4. Cancer (the drugs) hursts your bones and we are here to help you live the best life you possibly can while enduring your disease with all the latest targeted drugs and pain killers for your HER2+ cancer type.
Getting off meds.
I went to Indiana to visit family and friends at the end of June. My friend, also dealing with cancer, could not take gabapentin a drug commonly used for neuropathy and prescribed by my doctor. I’ve been on it since my last chemo treatment with Taxotere. I asked my oncologist about the supplement he was taking alpha lipoic acid. She said it was fine to take with my chemo drugs. I built it up in my system for a couple weeks then decided to get off my sleeping pills and gabapentin cold turkey. That was the wrong thing to do because I should have winged myself off them. Within a couple days I got an excruciating headache in the evening. Stayed in bed most of the next morning. During the day I was fine and could knock the headache out with 3 Tylenols. I dealt with this knowing my next chemo treatment was in a week and I could let them know what I did.
July 20, 2021
Time for my chemo treatment and I told my nurse about my headaches. At first, I wasn’t going to because I messed up getting off meds cold turkey and the headaches were coming and going, Not to bad as long as I took my Tylenol. But I finally did tell my nurse and she grabbed a doctor. She said since I do have a history of cancer; we should still get scans taken just for confirmation and to write it off and be sure there is nothing to worry about. My nurse said she’s been having headaches too because of all the rain we have been getting and not to worry. The next day, Dr. Hahm informed me that afternoon by phone the scan showed I had a tumor, cancer has been growing in my brain for approximately 6 months.
Is my body immune to my chemo drugs I have been taking since 2019? Is now the time to go for the next stronger drug that will eventually weaken my immune system again and wear my body out even more?
Cancer likes going to the brain. You cannot feel cancer, that is why they call it the silent killer. The treatment I’m on did nothing for this tumor. I am so thankful I messed up getting off my meds, I had this headache and the tumor was found. The cancer in my brain would have never been diagnosed.
Am I a miracle from God?
Dr, Hsu, my Neurosurgeons report.
When the tumor was detected, I immediately got on steroids to relieve the pressure of fluids and irritations surrounding the tumor and my headaches, well they went away. It was not getting off my gabapentin totally. Most tumor cases that I have been diagnosed with are discovered when the patient comes to the ER having an excruciating migraine headache, dizzy, loss of balance. They will detect the tumor surrounded with fluids, pressure, and surrounding irritation. This is a stressful situation for surgeons to handle. Most surgeons will not even perform this type of surgery. At the time of arrival there may not be a surgeon even available for several days. The tumor is lodged in the area of the nervous system that controls all your functions, everything from your body’s temperature, blood pressure, balance etc. It is in a delicate location that could easily, when performing the surgery, leave you with stroke or death. The pressure and fluid was so built up that I was labeled stat and Dr. Hsu rearranged his whole schedule to get me in asap. Six days out and he was still uncomfortable with that length of time. My tumor, the size of an eyeball, was detected in a very unusual way. It was a controlled situation, and my surgeon could plan the surgery without the extra stress. My surgeon was very confident but still had to address complications and statistics of surgery, a lot of decisions would not be made until he opened me up and saw what he had to work with. There were all kinds of issue but the one that bothered me was drainage and the possibility of having a shunt in my belly.
When I am finished healing from my brain surgery/ and take 5 cyber knife radiation treatments I will go back to my oncologist to discuss why and what happened as well as my cancer regimen they put me on. I’m nervous that it’s time for the next stronger does of meds for my chemo treatment.
I want to have hope!!!
My dear friend, an amazing editor of many magazines, world traveler, reported on covid before it was introduced in the states told me to watch this video before I go into surgery. She said it helped her friend tremendously. Of course, I watched it and I would love to know you watched it too. HEAL https://youtu.be/s5Hpm-6Inxc
Dr. Hsu was very pleased with the 5 hour surgery, I did very well healing in the hospital. I did my physical therapy very well, walking around the halls. Covid or the new Delta virus has caused the hospitals to be at full capacity so I stayed in ICU because there were no available rooms. One visitor at a time. My sister from Indiana came to help me for the first week and she was a blessing with my meds and keeping everyone informed. David, of coarse is my strength, love, my rock!
I was told to rest as much as possible, to do low activity and to monitor my stitches for drainage, all 30 stitches. Drainage is what we do not want to have. August 19th I return for possibly removing the stitches and check up.
My new journey.
I have been taught that there is other ways of healing your body and I want to be healed of my cancer. I did not know about eastern and western medicines until I saw this documentary HEAL. I believe you need both medicines. My radiologists nurse and I had a fantastic 30 minute chat about the differences. While preparing for my surgery, I’ve told my story to the nurses I met who are also on gabapentin and they are going to try alpha lipoic acid.
My surgery was a success, as I write this I am at the healing stage. Journaling is keeping my mind at a relaxed state.
My days forward are a gift to me, my bonus life from God.
I have taken a big step and decided to add eastern medicines to my health and cancer journey. I believe in it all.
I will start a blog of my new journey for those interested. Hopefully we can all help each other out with each other’s thoughts, ideas to try, doctors, healers that come my way and what works for me and everyone. I want to share my journey with you. I want this to be a place not just for cancer but whatever is causing us to be unhealthy. We need to get rid of our stress! Enjoy everyday life that God is giving us! and don’t take tomorrow for granted!!
For the first time in a long time I feel like I can be safe, healthy and happy.
I want to live my life as before cancer touched it.
Can that be so wrong?