7/12/2024 UPDATE:

It's been a rough week, my friends. The last full meal I had was on July 4th. It was also the last day I actually cooked anything.

I went home from that BBQ at the farm and fell asleep. And slept most of the weekend. They put me on a pain patch of 12mcgs of fentanyl and for breakout pain, hydrocodone. Both very, very low doses for the amount of pain I have. When I wasn't sleeping, I watched TV and read all weekend and otherwise did NOTHING.

This is the worst I've felt since I've been diagnosed with Cholangiocarcinoma which is the long name for bile duct cancer. I've been fortunate up until now to be relatively pain free except for my knee.

On Monday morning I got up in such excruciating pain I didn't think I could even feed my crew. I called the oncologist's office and he said to go to the ER for re-evaluation. So, I took my overnight bag (got caught w/o anything last time) and went from my house down to Mid Coast Hospital.

Vitals were good, but the exam showed my bladder is swollen and leaning on an area where the sun don't shine and causing this outrageous pain. They wound up giving me morphine while I was there and changing my fentanyl patch from 12 to 25mcgs and advised to still take my breakthrough pain meds every four hours.

I was supposed to start my new treatment plan next week, but they've now moved it up and I started my first meds today. Hopefully this helps with the pain and shrinks the bladder down. The doctor says that we've tried everything else and eliminated all but the cancer causing the pain.

They tested me early on for a genomic mapping and found I have a mutation called BRAF v600e. Long explanation about how it promotes the cancer cells. But, they do have a way of working it out.

The side effects of this medication run the gamut of mild nausea, thinning hair, eyesight issues, skin rash and possible skin cancer in the form of basal cell carcinoma all the way to blood clots!

I'm currently working on short term disability to take some time off work and concentrate on dealing with this new treatment.

2/7/2024 UPDATE - Still in chemo and doing ok at the moment. However, I have a tooth issue that's come up and they DO NOT want any dental work done due to possible infection and since I've already been there once and wound up in the hospital, they really don't want to chance this.

Currently, the dentist says I need an extraction, but had another way to do it so that I won't have a gaping hole in my gum that would be open to infection - I'll spare you the details. We're working on scheduling. The dentist is concerned that the infection that's there right now could cause me a jaw infection and would be quite detrimental and he doesn't want it to abscess, either.

Not only is cancer expensive, but it's FUN, too! Uggghhh!

If you have anything extra to give, I'd appreciate your help. I don't feel comfortable asking for such financial help, but feeling like I have no choice at this time in my life. Moving here last year, I had no idea this would be my welcome to Maine!

I'm fortunate that it was caught early while I was trying to get clearance for a knee replacement and my blood work came back wonky. I had no symptoms and still don't. If you saw me, you'd never think I had cancer. Other than chemo making me heavily fatigued at times, I wouldn't know it either!

I am currently attending some body work sessions at The Dempsey Center. I had a Reike appointment last week with the nicest practitioner. Yesterday, I had an acupuncture treatment last evening. Both feel wonderful and I have the ability to get eight sessions of each and also massage for free. I'm hoping to stretch them out a bit. The Dempsey Center is magnificent!

There you have it...my latest update.

UPDATE: Well, I wound up in the emergency room on Friday, December 15 after spiking a fever of 103.8 two nights in a row from a urinary tract infection. The oncologist's office told me Thursday to go, but I was worried about 1) my animals and 2) $$$$$! Plus, I already had antibiotics and thought between them and some Tylenol, my fever would drop.

It didn't.

I spent the day from about 10:30am till about 8pm in the ER before they got me to a room. Since I'm on chemo, it had to be a private room, which was nice. I went to Central Maine Medical Center which isn't far from me. My niece and sister brought me to the hospital because I couldn't drive.

They thought at first I was septic, and took blood cultures, put me on IV antibiotics and fluids and then didn't think I was septic, but wanted me to be treated as if I had it.

So, tomorrow I see the oncologist and have my blood work done and we'll see if I'm headed to chemo (I surely hope so) on Friday. I missed the last one. I have learned my lesson and any temperature over 100.4 is considered to be a fever. I won't wait if it happens again.

My sister and BIL were angels taking care of my animals and my dogs were wonderful. No spiteful damage, no separation anxiety issues, they were the best dogs I could ever ask for. The cats were wonderful and so was Dash! Even through a major rain and wind storm and a power outage, they did fantastically.

Now, I have a second hospital to pay...I'm paying what I can and when I can to all these providers, but I'm again in need of help. If you can spare anything or forward/share this to others who may not be on Facebook, that would be wonderful.

If you've given, again...thank you and I so appreciate it. I love you all!

UPDATE: Tomorrow, I receive my third chemo treatment. My schedule is two weeks on and one week off. For some reason I was confused thinking it was 3 weeks on and one week off, but it's only 2 on and 1 off.

Once I was diagnosed, they did a genomic mapping to see if there was a possible targeted treatment for my particular cancer. I received information yesterday that I have a gene mutation called BRAF v600E. I've done some reading, and my doctor says there is a targeted treatment for this mutation. It is something we hold onto in our back pocket if the chemo doesn't work. They try the first more traditional treatment before using anything targeted from the genomic mapping. So, I guess this was some good news.

I'm actually looking forward to chemo, as they give me a steroid to help manage the inflammation that chemo drugs can cause and one of the GOOD side effects is that it takes my knee pain and other arthritis pain away for the week afterward. I take one 2x a day for three days after my treatment, and it's just enough to get me through to the next one. I had off last week, and as the days have passed, the knee pain has come back a little more each day. It's not screaming like it was before I started, but enough that there's significant pain when I stand up or walk.

I want to thank each and every one of you who has contributed to my GoFundMe. It means a lot to me to know I have such kind and loving friends. My heart is full.

Greetings All,

After my bout with breast cancer in 2022, I thought I was done. I moved to Maine to start a new life. I was trying to get cleared for surgical replacement of my knee which has been an issue now for about four years.

During the testing, I have recently been diagnosed with bile duct cancer in my liver, which has also moved to the lung. My doctor says, "We can fix this!" That's great to hear but to do so, I'll be going through 24 (23 more chemotherapy sessions.)

I have insurance, but it comes with a high deductible, high out-of-pocket costs and high copays for tests and treatments. I'm about as maxed out as I can be at this point and have given up my pride and I'm asking for help.

The chemotherapy will be long, at least until April if all goes well. Each treatment will cost me a copay that I'm being billed for, and I'll have to make payments on as I go along. My hope is to be able to work full-time during this journey to be able to keep up with my expenses. My colleagues at work are being so kind, and my boss has been extra special with things I need to make this work and keep me working. They want me to concentrate on my health. I'm not arguing.

If you can spare a little, that would be great. If not, that's ok, too. I just have to pocket my pride and ask for help.

Thank you for your help.

Rose