Deborah Carney

Where I Celebrate Life

What Treatments Have I Started in May 2024?

My treatments so far – this is informational for you, NOT MEDICAL ADVICE. These are my choices so far.

Iron IV ($200)
Administered by the Medical Oncologist since she is also a Hematologist. This is a stronger dose than my doctor is allowed to administer.
I’ve had one of her strength so far, was very groggy afterwards, but had more energy the next day
Pain after having dinner
Hoping to be able to stop after surgery

Acupuncture ($200)
Primary care naturopathic MDs office
Controls pain, muscle spasms are less after treatment
Still had pain after dinner

Immune IV ($285)
Primary care naturopathic MDs office
Felt great after this
No pain after dinner!

Until surgery will have Acupuncture and Immune IV once a week. Will resume after surgery to support healing.

All of these are helping with pain and fatigue but not eliminating it. I feel they are strengthening my body to be able to better handle surgery since I am very depleted.

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Mexico Clinic

I was referred to this clinic by a patient that is several years in remission that followed their protocol. Real people, friends, not some random on the internet or someone that wrote a book.

Chinese herbs compounded at a pharmacy ($390 for 6 months worth)
Working well, no side effects
Helping with digestion
Will continue until surgery then take a break until recovered

For inflammation and liver support:
Liver Rescue blend – buy locally
SAM-e – buy locally

Hoxsey Tonic (Included in Clinic visit cost of $1200)
Has very specific dietary restrictions that I will detail in another post since there are dietary restrictions for multiple things.
Waited to start this to be sure which things might cause side effects and this one did so cutting back right now. I need to stop this one week before surgery anyway so might wait a bit or go lighter. This is a detox formula of herbs and anyone that has done a juice detox or other detox knows you can have side effects while you detox. This doesn’t mean it won’t work, it means I need to be more gentle with myself so my body isn’t in trouble before surgery. They recommended that if you have side effects to take 2 days off the protocol and restart at half dose. Since I pretty much have to stop in a little over a week anyway, this might be a wait until after surgery and start over. In the meantime I will stay on the Chinese herbs.

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Off label use

Fenbendazole – recommended by a friend that is now cancer free after having it recur 3 times. Again real person with real results not a random off the internet person. Also combined with dietary changes. Lots of research out there to support the use of this. Mexico clinic has no problem with it, it won’t interfere with their protocol. They have seen (mostly) good and (a few) bad results.

Berberine – control glucose levels. Cancer loves glucose so we don’t want to give it more than we have to. Lots of research to support using this. Won’t interfere with any other treatments and I need it for diabetes control anyway.

Several other supplements to support my system and/or that cancer doesn’t like:
Vitamin C
Vitamin D
Curcumin and or Turmeric (I have versions of both)
Magnesium CitraMate
Oil of Oregano capsules
Cinnamon
CBD/CBG blend with Adaptogens: Ashwagandha, Cordyceps and Turkey Tail mushrooms, Vit D and Turmeric
Zinc Quercetin

As a side note: I started the off label use things immediately after diagnosis and before going to Mexico. I had labs drawn the day before starting the off label things and then the same labs drawn in Mexico. The CEA levels, which is a cancer marker measure, dropped by 900 points in one week of my protocol. Is that significant? We don’t know since it was different labs that conducted the tests. I will have the CEA checked one week before surgery to compare with the other labs done in the US and Mexico to see where it is at and to see how it changes after the mass is removed.

I also use a variety of essential oil blends for pain and other issues that vary by day both topically and internally.

The Family Cancer History

People in my immediate family that have died from cancer:

All were heavy smokers. The men were drinkers.
My sister: age 38 lung cancer that had spread throughout her whole body.
My maternal grandfather: 70s – lung cancer
Two maternal uncles: lung cancer
One maternal aunt: lung cancer.
One maternal aunt: adrenal cancer, possibly from lung cancer

Yup all one family. All high risk from smoking, some from alcohol.

I have never smoked.
I am not a drinker, only an occasional recreational drinker.

And yet here we are. My daughter reminded me that we lived near Kodak and Xerox smokestacks our whole lives in Rochester and area. So my own risk factors are environmental.

Timeline (and things YOU should watch for)

I didn’t listen to my doctor. She told me what I needed to do and because I had a bad experience with a colonoscopy 22 years ago I told her flat out no I wouldn’t have one.

In April 2023 she told me my iron was super low and I needed some IV therapy to boost it up but that I should get a colonoscopy. I resisted.

In July 2023 I almost went to the ER after a night in the bathroom with severe muscle spasms, like childbirth without drugs kinda spasms. They eventually stopped that night however I did have them again daily, not as bad as the first night, for about a week.

At some point in July I went to drs for an iron IV and let her know about the spasms. I mostly managed them with magnesium (one my dr recommends). Again she said “colonoscopy”. I said no.

Throughout the summer and fall I had iron IVs which made me feel better and the spasms were still around but manageable as long as I stayed home and near a bathroom. I started having alternating constipation and diarrhea. Yeah I know, no one likes to talk about this stuff but it’s important!

In December I managed to go out to a few events, still not feeling great.

Then the real fun started. In January I got SUPER sick, Covid sick, with intestinal involvement. Coughing up a storm, extreme fatigue. I lost my sense of smell like I did the first time I had Covid so chalked all of the problems up to that. I literally slept through the month of January.

In February I started to go back to drs for more IVs, had new blood tests done. She said Deb you need a colonoscopy, your body is not holding iron at all. You are bleeding internally somewhere. In the fall she gave me a test similar to the cologuard test but I couldn’t do the collection due to inconsistent bowel movements. I had another evening of spasms that actually had me seeing spots but since they stopped after about an hour I didn’t go to the ER.

In March I had more blood work done – iron still way down even with weekly/biweekly iron IVs. Spasms started getting worse as well, but not like the times it almost sent me to the hospital. Just consistent every evening.

April 10th I had her do acupuncture on me and it was like a miracle for the spasms. They stopped. We also had an in person follow up that day and she told me about a blood test that could rule out cancer which is what we would have looked for in a colonoscopy. It was an expensive test but I said let’s do it.

The results from that blood test came back on April 22nd. She called me. She never calls me. She said “Deb it has postive markers for colon cancer, will you please get a colonoscopy.”

Colonoscopy was April 30th. No polyps to be removed (which would have been preferred!) but instead it showed a a 5cm mass that will require surgery. Preliminary biopsy is postive for cancer. Again got a phone call from the gastroenterologist on May 1st. Plus a call from my dr, and a call from an oncologist’s office.

Stage is unknown right now, waiting for full biopsy report plus CT scans and another blood test on Monday May 6th.

I had a consultation on Friday May 3rd with the oncologist and I will cover that in a separate post.

Don’t be like me and wait a year. I ignored my body. Don’t do that.

And Another Journey Begins

Just diagnosed with colon cancer. Everyone talks about breast cancer and mammograms but no one talks about the messy tests and cancers. I’ll be talking about the messy cancer.

I ignored my doctor wanting me to have a colonoscopy. Even though all the signs pointed to a problem. She finally had me do a new blood test that looks for cancer markers. It was positive for colon cancer.

I had the colonoscopy Tuesday and got the results today.

This is a request for positive thoughts but ALSO a plea for YOU to not ignore any symptoms you are having. Get checked. Get the mammogram, get the colonoscopy, pay out of pocket for the blood test not covered by insurance that probably will save my life.

I don’t have health insurance. Having health insurance in the past almost killed me. My health is dictated by what I decide, not what an insurance company decides. I will most likely be going into massive debt over this and I don’t care. I stand by my way of health care.

I do want to clarify something about health insurance. I stand by my line that I bolded above: **My health is dictated by what I decide, not what an insurance company decides**. I know that means I will go into debt, I will work with the hospital once we have picked one to figure out their available financial aid. Please remember what we went through after the hurricane. Insurance, the govt, all the places that were supposed to help did not.

Stay up to date, learn how you can help and more by visiting this page.

Colonoscopy 2002 and 2024

I’m having a colonoscopy Tuesday which means Monday is prep day. I have avoided having this done for 22 years and here’s why.

In 2002 I was living in my son’s dorm room in Manhattan (long story related to 9/11) and worked for a dr’s office as their office manager, also in Manhattan. I had a floor manager that was also the wife of one of the drs. (This is relevant)

I had some health issues at the time, low iron and pain in my abdomen, same as I have now actually, so as soon as my insurance kicked in they scheduled me for an endoscopy and colonoscopy. Prep was extremely hard for me so I didn’t want to repeat it ever again. Nothing was found with either test.

However the memories that are being triggered are related to the floor manager. She knew I was having both tests and would be sedated. She actually expected me to come to work after the procedures. Fortunately one of the drs I worked for said no and he actually drove his car to work that day and picked me up and drove me home. People didn’t actually drive their cars to Manhattan and park them to go to work so this was very kind of him.

That same floor manager is the reason I eventually had to leave that job as after Dan died she pushed me into doing tasks that weren’t in my job description and that I couldn’t do in the mental state I was in after he died.

The drs I worked for were awesome, she was not. But the office politics had her trying to get me away from working with the drs I was supposed to be and eventually forced me into a worse mental state and quitting my job and leaving Manhattan.

So yeah this simple colonoscopy comes with some baggage. Some positive energy would be appreciated as Vinny and I navigate the next 48 hours. I know lots of my friends have had them without issues. I just have preferred until now not to have one but now there is a reason to and I will discuss that more later in the week.

Skill Building, Creativity and Letting Go

Why am I working on a quilt when I have a gazillion other things to be doing including 2 other quilts I started and stopped to make more sense out of this one?

This quilt started as a very orderly English Garden pattern from Missouri Star Quilt Co. I had this layer cake (precut 10″ squares of a line of fabrics) of sea themed fabrics and decided to use it and not use the solids that the pattern called for. Also during the beginning phases of this one a shipment from Michael Miller Fabrics showed up with a bolt of areally cool sea turtle batik fabric and a bolt of solid blue called Midnight that had been out of stock.

I am also doing this quilt as a “Quilt as you Go” meaning I am going to make blocks and quilt them to a backing and then sash them together instead of just making the whole quilt top first.

I had it all planned out in my head. The purple squares would be the sea turtle batik and the sashing would be the Midnight. The “solid” fabric of the pinwheels would be similar pieces of the squares that were most present in the package and a few from a second package.

I sewed the blocks together and here comes the skill building. Not just sewing skills. Apparently I can’t sew a straight line when it is pretty critical to do just that. I sew a lot of stuff that needs straight lines and do it well. Not on these. Skill built: Patience.

Cut the blocks up and cut up the corner pieces and sewed all those one. Took WAAAAAAAY longer than I expected. 120 blocks with 2 on each. And 2 I did wrong after I already trimmed extra fabric off so had to just sew two more corners on to make it kinda work. Skill built: Patience. Letting Go of expectations.

Now today I started the part that really ramped up the creativity and letting go. I started to create the blocks of four that make up the pinwheels. It was a little challenging to get 4 different fabrics on each block of four but I thought I was doing ok. I had the pinwheels in order – or so I thought. Skill built: logical creativity

Start building the blocks of four of the blocks of four that I will quilt then sash to the rest. Ut oh. All of a sudden the fabrics that were supposed to be in place of the solids were in the place of the prints. I do not rip out perfectly good seams just because something is out of place. Skill built: LETTING GO – let the creativity flow and just go with it

No one except ME knows which fabrics were substituted for the solid wedges. You might be able to figure it out if you stared long enough but really – who cares? Water is fluid. What is in the ocean moves around. So that is what happened here. Skill built: Adaptability!

What you see here is the next to last stage of this quilt. It will NOT even end up in the order seen here because the pieces and parts are still going to the ironing board and sewing machine for backing, batting and quilting. That is the “Quilt as you Go” part. It gets done in parts instead of the WHOLE thing having to go into the sewing machine and be quilted.

Skill building: Lots of practice with new sewing techniques that I will apply to the products that I sew to sell.

Creativity: I am a visual artist – photography, digital art, and now fabric. And things don’t always come out as planned. But they come out looking fabulous.

Letting go: Don’t be OCD and think just because you are following a pattern created by someone or even created by yourself that if things don’t come out as planned that it means it is a bad thing. I love the original pattern and may do it with other fabric more true to it in the future. Or I may go crazy with it again. I also LOVE how the quilt is ACTUALLY looking.

Aquarius. Ocean. The Sea.

The Sea Turtles will be the backing of the quilt so will be very present and not just the little diamonds and triangles.

This is how we are #makingitfun. This is how to adapt and grow.

I am 64 and learning new skills. And January 2020 I had no sewing machine, no fabric, nothing sewing related – not even a good pair of scissors, in the house. Nada. Skill built: Adapting to what 2020 brought to us.