Dr. Barbara E. Milton, Jr. LCSW
An ongoing series of informational entries
An ongoing series of informational entries
Believe in Science
Be a believer in science. If you wear a mask you can prevent the spread of COVID-19. If you stand minimum of 6 ft apart from one another and you are wearing a mask, exposure and transmission is a minimum. Wash your hands, many times a day. Wash them with soap and warm water for a minimum of 20 seconds.. Or use hand sanitizer if you aren't able to wash your hands.
The plasma transfusion therapeutic is a known intervention to doctors battling COVID-19. There is not sufficient evidence to suggest it is a "cure" for COVID-19. Yet again the Trump admin lies and distorts. He is reckless and dangerous.
Wear a mask especially in large gatherings for people.
We are going inside as of Labor Day Weekend. This is a positive sign.. Restaurants, Movie Theatres and other indoor spaces at 25% capacity provided social distancing, face mask and sanitation and ventilation protocols are in place. I think I will see how it rolls out before I make the move.
Donald Trump, the most protected man with best healthcare in all the land tested positive, according to the news, and received treatment. He is a super-spreader and has been defiant when it comes to CDC guidance on preventing transmission. We all need to continue to wear masks, wash hands and socially distance, whether he sets a good example or not. Moreover, all Americans deserve the same quality, taxpayer supported healthcare that he received. We need to continue to press for that in our country.
Donald Trump hasn't attended a COVID briefing in 5 months. According to NPR, we are adding 1 million new cases per week and this is squarely on his watch. The administration is not allowing the Biden-Harris Admin access to information or infrastructure for the seamless transfer of power. They have a plan for Jan.20, 2021, 12:01pm. Meanwhile Trump golfs. Shameful. Fortunately, several pharmaceutical companies are advancing vaccines and therapeutics! Its a scary time. God help us all.
Vaccinations are coming. Cases are skyrocketing locally and nationally. More people dying each day than did on 9-11. The Trump response is reckless, dangerous and criminal. God help us all.
We are on track for ONE MILLION AMERICANS dying from COVID if we don't change the federal response to the threat in the air. God be with us all. I will be getting vaccinated ASAP.
Oh what a difference an election makes. There is now a national plan for testing, vaccinations and help to cities, small businesses, workers and a families. More variant strains are being discovered. I received the first shot of the Moderna Vaccination. Thank God and thank the voters of the 2020 election who elected the Biden-Harris Administration into office. We are all in better hands now.
We are now vaccinated with Moderna. Yesterday we had lunch with a friend who lives alone, who was also vaccinated, so we ate outdoors at a local taco place without masks on. It felt wonderful. And WE HUGGED. Made me cry.
Kay and I are fully vaccinated with Moderna. We have slowly re-entered intimate spaces with friends and family who are also vaccinated. I lift my voice and prayers up for other's to also take the right steps to obliterate COVID from existence. Poorer nations and communities still need vaccinations and I advocate for the more well of nations and communities to do what they can to provide vaccines and aide to them. None of us are truly safe from COVID until all of us, (75 % of us all on the globe) are vaccinated.
We aren't at herd immunity yet. There are still anti-vaxxers and misinformation and conspiracies about the vax. Although, CDC says its ok for people who are vaxxed to not wear masks indoors and outdoors. I still do. And I still social distance and I still wash my hands. I have too many underlying conditions to take any risks. Transmission is not 100% prevented by vaccinations.
If you see blood after voiding...GET HELP.
The number one symptom of bladder cancer is blood in the urine. If you see blood in the toilet bowl after voiding, call a urologist and get checked out. I did not do that. I thought that I was just having spot bleeding from my uterus, even though I was well into menopause. My tumors, were discovered accidentally when I was have a ultrasound of my uterus. That was July 18, 2012. On July 23rd I was told I had Urothelial Carcinoma or bladder cancer of the lining of urinary tract and that includes from the urethra to the kidney. It's a chronic form of cancer, like weeds growing in a garden. Every 90 days I get scoped and doctors search and destroy tumors with scrapes and lasers. Then we await biopsy results and when necessary I take whatever treatment makes sense to take to try to prevent tumors from becoming more aggressive and more deadly. In 2016, I lost my right kidney to bladder cancer. In October 2018, the cancer moved into my left kidney. I am fighting to save that kidney now.
I am on the eve of a "looksee" procedure into my kidney. It is always nerve racking. You just never know what the doctor will find. My kidney function numbers from lab work done last week was perfect. So I feel optimistic.
More tumors were in the bladder and the kidney. The doctor removed them all. He seems to be stumped as to why they keep growing back in. He gave me chemo while on the OR table. I am still bleeding, burning and have bladder spasms. Spending time resting, drinking lots of water and praying that all the biopsies come back negative for aggressive cancer.
Biopsy report revealed more low grade tumors in the bladder, ugh. Doc gave me chemo while in the OR. The kidney however had lots of "atypical" cells, sort of cancer light. Happy to continue on the road of preserving my only kidney and keeping her in my body. Hey! Whatever happened to Trumps proclamation that a bionic kidney was just around the corner? Any word on that?
I am in the 90 grace period, monitoring my urine which has lots of bubbles in it. It all started right after surgery. The nephrologist is tracking me closely with bi-weekly blood work and telehealth calls. I am also limiting protein consumption to less than 4 oz per day to see if that helps my cause. I pray that I don't have any obstruction. That would be bad.
My bladder cancer has likely become more aggressive and has invaded my kidney. That's the conclusion of MSKCC and the surgeon recommends removal of my solo kidney and bladder. I am not sure of the timelines. I am not sure about whether chemo or immunotherapy is an option or a choice. We are making peace with the sobering news. The surgery date is 2/17/21.
I have a plan for a course of treatment with Keytruda and am awaiting information on my genetic testing. The immunotherapy drug is typically used for metastatic bladder cancer which I do not have but my cancer has definitely become more high-grade and muscle invading. The treatment consists of three 40 minute infusions over nine weeks. There will be pre-treatment scans and labs and post-treatment scans and labs and a possible cystoscopy / ureteroscopy to determine if the treatment has been beneficial. The alternative is a very radical surgery to remove my only kidney, ureter bladder, lymph nodes, uterus, fallopian tubes, ovaries, urethra, part of vagina and part of my adrenal gland. For now, the Keytruda treatment delays my surgery.
I had the first infusion of Keytruda. My kidney function is being adversely impacted by the treatment as evidenced by rising Creatinine, EFGR and BUN scores in lab work. I am still in the safe margins of kidney function to continue with the treatment. If my creatinine elevates beyond 2.5 (currently hovering around 1.9 and 2.0) then they will discontinue the treatment. I am drinking 128 oz of fluids a day and minimizing protein intake to help lessen the impact of the treatment on my kidney.
Finished three rounds of Keytruda and experiencing some side=effects. Had post treatment scans last week. We also learned that I could continue with Keytruda for up to two years. That was a shocker because no one told us that in January. Surgery tomorrow to remove tumors from my bladder and to looksee into the ureter, renal pelvis and kidney. I pray God that the kidney looks turmor free. I am scheduled for Keytruda, 720am on Friday morning. Hopefully, I will be catheter free.
I finished up the second round of three treatments of Keytruda. I am tired as hell, bleeding and incontinent, I do plenty in a diaper. Rashes are starting to form and muscle and joint pain is more intense. I have the next set of scans and surgery beginning 5-20-21 with surgery on 6-15-21. I keep doing my part which is to hydrate, one gallon of fluid a day, and eat 2-3 oz of protein only daily. I still have a dislocated clavicle so sitting upright isn't easy. But keeping faith, doing the best I can, having a good life, despite the physical and urological issues. Keep us in prayer.
Thank you everyone who helped us to raise money for The Bladder Cancer Advocacy Network, (BCAN). May is Bladder Cancer Awareness Month. This year we walked for me and for Sue, too. We lost Sue to bladder cancer in the Fall of 2020. She is the sister-in-law of a dear friend. We raised over $4900 so far for BCAN. WOW!!! Go team Barbara and Sue and that means us and you!!
I had 15 tumors removed a couple of weeks ago. Had a stent which was very uncomfortable. Have to have intervesical chemo into the kidney. My doc is away until Aug. I guess that is when it will all go down. Keytruda every three weeks has me so tired and its harder to hold my urine.
Behavioral & Mental Health
Behavioral & Mental Health
I live with Anxiety, Post-Traumatic Stress Disorder, an Eating Disorder, Body Dysmorphia and Trichotillomania. I also suffer from chronic pain from a couple of auto accidents and the effects of many years of obesity and its adverse effect on the health of my spine. Some days I do not know how I get out of my bed. But I do get up. I know about wanting the easy way out. I tried twice to end my life. I thank the God of many names that I did not succeed. I got help. Help is there for you too. If you need to talk to someone call 1-800-273-8255. If you need tips and resources on coping during times of stress go to their website: SuicidePreventionLifeline.org
My nephrologist and I discussed the research of Dr. Sean Hashmi of Kaiser Permanente in LA about kidney disease and plant-based diets. It seems that giving up meat and artificial sweeteners are living saving dietary changes for the preservation of your kidney. I have been on the Chronic Kidney Diet since November 2018 which targets foods that are low potassium, low protein, low sodium and low phosphorous. I have a 50 lb. weight loss on that program from eating a very small universe of seafood, carbs, fruits and vegetables. And I drink almost a gallon of water a day. Now i am going to transition to a more whole foods approach to my lifestyle and keep the meat out of my life. I am looking forward to seeing the results of adding legumes, more whole grains and low glycemic fruits into my plan of eating. My doctor will follow me closely with monthly lab work to make sure the dietary change is good for my solo kidney. I feel optimistic. I can't wait to have some oatmeal, some couscous and some spinach.
Several of my friends are seriously ill. This makes me so sad. Check in on your friends, especially the ones that you know are all alone. Let them know you love and care about them.
I had a rough week. Chronic pain is no joke. Standing up was hard. Lying down was hard. Peeing hurt. My clavicle is so out of place it is in my throat and the pain is unbearable some time. Physical Therapy helps but it will take a long time for it to shift back in place. It is always something. Fatigue from my brain to my toes hit me mid-week. I started to go down the rabbit hole of depression and anxiety. I allowed myself to just be there for day or two and then rose up like the Phoenix. Having purpose and hope helps so much. Staying connected to people who love me is my lifeline. Happy I grabbed on to it, for today.
I fall down, I tend to get back up. I find that the more journaling and support I seek, the better my mood. Also, prayer and meditation help to keep my anxiety in check, for the most part. It is ever present. I always want to do compulsive, self-harming behaviors when I feel afraid. I wish I could report that I do not do harmful things to myself but I do and I am working to reduce them to zero. I have started walking or biking on a daily basis. I am grateful to be walking because a year ago, I couldn't it.
Every single bone in my body hurts. Cold weather is not my friend. I have a dislocated clavicle on my left side. That is so painful. I am in physical therapy 3x a week. I sure wish we still had a hot-tub or a bathtub. Thankfully, I get some relief with a new topical NSAID, Whoohoo!!! I can't ingest NSAIDS, one pill could literally kill me, but this new topical gives me needed joint relief on my shoulder, my wrists, my knees and ankles. Of course it cost $32 bucks and a tube only lasts a week so it isn't easy to afford on a fixed income.
Sadness and grief abounds. I have lost two people in a week to cancer. My heart is broken. I went to a Muslim burial ceremony and hid in the car out of fear of catching COVID then added a handful of earth to the grave that covered the wrapped body of my dear friend of 49 years. My wife's sister -in-law died too. I loved her and every fibre of my being wants to be in Wales to hug my brother-in-law.. But here I am in NJ weeping. And that's alright. I feel the feelings and that's a gift. I am also connected to love which makes the heartache more manageable. What a sad time we are in made more so by COVID's limitations on human interaction with the ones we love. I also published the book I wrote about my mother and our journey through Alzheimer's disease. I can't believe I turned my grief journal into an actual book. I had lots of support, especially from Kay and Liz Hill, my book coach. I wrote the book to put at my mom's grave. I promised her on her deathbed I would and I now have done so.
I am living in fear and am having a hard time sleeping at night due to anxiety. I use medical marijuana and it helps but not fully. I am fearful of the cancer spreading, the side-effects that I read about in people who take Keytruda and about the level of fatigue and mental fog I fight through on a daily basis.
I made it through the anniversary of my mother's passing on 1-31. I actually was able to get out of bed and be in the world. I still can't believe her story is in the world. I have been getting good feedback from readers. I have lots of books sitting in our living room. We have sold many of them but many more to go. I am not a sales person. I do not have the energy for it and it isn't joyful "selling" our story. It's exhausting. I try to stay in gratitude and try to fight the urge to curl up into a little ball and hide away in my bedroom. Its a sad time and a time filled with anxiety. I pray God, many times a day, to keep fighting to live and to keep fighting to preserve my kidney, End stage renal failure, the prospect of surgery and a drastic change of life scares me and fills me with shame and self-pity. The amount of energy it takes to tamp down that fear and those other negative emotions is enormous. I am feeling it today. This too shall pass.
I am anxious, through and through. What a drag for Kay. Sleep isn't good. Thankfully, my food and TTM is in check thanks to my fellowships. Trying to breathe and grow my faith.
Continuing to battle fear and insomnia that comes with trauma and living with a solo kidney ravaged by bladder cancer. Working more on prayer, meditation and chanting. Medical marijuana helps a lot. I am hoping that the passage of the Recreational Marijuana Law in NJ will reign in the prices of medical marijuana. A person on disability can not afford $48-$60 for 1/8 of an ounce of medical marijuana. That's nearly $500 for an ounce!!! We have to move towards medicare and health insurance companies covering the medications.
I am super anxious and depressed. Medical marijuana helps a lot with the anxiety. Grateful I have a higher power and a large network of folks to call on for support during this time.