INSOMNIACS place to talk in the wee hours

magdalene51

Hey Owlettes! Just checking in. I am home on hospice after spending 11 days in the hospital with a saddle pulmonary embolism. 6 days in ICU, almost coded. (A saddle embolism is where both pulmonary arteries are blocked. My PCP said they are mostly found during autopsy.) I was kinda hoping to get a little strength back and get my ducks in a row, but instead I feel like I’m fading. My breathing remains difficult, even with 3L 24/7. My bones are in a lot of pain. Doc does not want to increase extended release pain meds for fear of respiratory distress, so I am having to take a lot of breakthrough meds. He doesn’t want me to be in pain.I don’t either. Hospice has provided some good supportive volunteers, the key is they don’t want me left alone at any time because of the risk of another embolism. They surmise that they were the result of a DVT breaking up in my right leg. My guess is the DVT is the result of the vasculitis in March.

Gonna go before the text box crashes. Love to all

avibaby

Wow! You look so happy in your picture! This is exactly what I want to do in 4 years 10 months - just stand up and shout the happiness. 

avibaby

Wow! I love this picture because you are grinning from ear to ear. This is what I want to do in 4 years 10 months - just stand up and SHOUT the happiness.

avibaby

I am saddened by what you are experiencing. 

Keep talking to us every day, please.....

Dhanno

Hi Meadow You look so beautiful and ravishing in this pic . I hope we all also get past this traumatic period and one day share our happiness like you did .Have a super duper healthy life .

Loveroflife

In my thoughts daily Ms. Mags. I am so sorry. I assumed that PE was ruled out at the beginning. I shouldn't as PE is not uncommon among stage 4 cancer patients. You know...... everytime I think about you I want to send a text to you but worry that I disturb you.

Loveroflife

Welcome Avibaby and Dhanno.

Micmel

thinking of you Magda. Everyday! 💙~M~

Wren44

Mags, I hope pain control is in your future soon. Hugs.

Meadow, Great photo. That's showing em!

jaymeb

Hi Mags

Good to hear from you. Been praying for you. Your attitude still remains positive.

Junie

Where are you? Would love to hear updates on how you’re doing?

Kathindc

Sorry to hear about your husband. My parents were married 46 years before my dad died from lung cancer. She said each day got better, however she still misses him. So do I. Hang in there, and saying a prayer for you.🙏

I read the posts everyday, hope all you ladies are doing well.

M0mmyof3

Enjoying the break from treatment. Saw my surgeon the other day for my 6 month check-up and she has reduced my visits to once a year unless something shows up on the scans or I find something

dsgirl

LoverofLife

Hi, I am doing good, your Danish is excellent.

Dsgirl

Loveroflife

dsgirl

Loveroflife

Whats even more amazing to me is that you remember I am a Dane, lol.

Dsgirl

Loveroflife

I, too, am amaze at myself once in awhile. I remember the strangest thing, yet I often forget why I am supposed to go to another room.

JunieB

Hey Ladies,

I had the radio frequency ablation done 2 days ago on Thursday. Pain is way more than I expected. Initially the bone pain was high, but now it is from the incisions and nerve pain. The spinal nerves from T11 are stirred up and I feel like there is a band around my rib cage. This all should pass eventually though.

I stayed in the hospital overnight and was discharged at 3 p.m. Friday, but was back at the Mayo Clinic ER at 8 p.m. My right arm was swollen & hot and I was readmitted to the hospital for IV antibiotics for a couple days. So far my blood cultures are negative. Yeah!

Unfortunately, before discharging me the first time my PICC line was removed, so in the ER I was stuck 5 times. I will be glad when I get back home and can get a port put in.

But more importantly, I miss my Kirbster!

Mags - I am so sorry to hear about the PE's and your pain.

Kathindc - How are you doing?

myra104

Hi there! It’s been a while but I’m just checking in!

Sorry to disappear, but ya know, I’ve been fighting, working, and caring for three kiddos 😂

It’s been rough, I’ve been separated since May, still unsure where that is going.

Work has been a sheet show, I mean like how do so many not notice that I’m in stage 4 cancer treatment. Unreal the denial that is flying around.

I just had a 3rd revision of my reconstruction with alloderm this time. Ouch.

I went through surgery to remove have of my thyroid that the BC tumor was on, Halaven, Perjeta, Herceptin last year for 3 months.

Continued Perjeta until I couldn’t take it anymore, and now on Herceptin forever. Also on Exemestane.

I’m tired, hurting, praying for better days🙏

Here’s my babies:

myra104

Oh, and I adopted two pups

M0mmyof3

Not looking forward to another heat wave, thankfully it will only be a 3 day one

JunieB

Hello Everyone,

I just returned from my trip to the Mayo Clinic in Rochester, Minnesota to see about the surgery for my vertebrae that had lit up like a christmas tree on my June bone scan/ SPECT CT.

At Mayo they did a new MRI of my Thoracic & Lumbar spine. Then the neurosugeon showed me the films from my June-Bone scan, July-PET scan & new MRI. The tumor in my T11 vertebrae barely showed up on the MRI or PET, despite being so bright on the bone scan. Mayo refused to do the surgery that my local Neurosurgeon had proposed to do on me and I am so very thankful. The reason they wouldn't do the surgery is because it is a massive one, requiring them to open my chest to access the vertebrae from the front, and also because the tumor was still contained within the bone and not affecting my spinal cord or spinal nerves. Instead they offered me Radio Frequency Ablation (which I had done last Thursday) w/ a Vertebroplasty. My vertebrae was cracked vertically and across from front to back. The bone feels better now, but the spinal nerves coming from that area are rather annoyed right now. The docs said this could last a few weeks, but should pass. They have me doing a step-down pack of Prednisone which I start in the morning. Yikes!! Don't look forward to that.

I was kept overnight and discharged at 3 p.m. on Friday, but was back at the ER 4 hours later because my right arm developed cellulitis AGAIN! I was readmitted and put on IV antibiotics for 3 days, then discharged on Monday afternoon. Fortunately it hadn't gotten into my bloodstream and cause sepsis this time. I am now on 10 days of an oral antibiotic.

I flew home on Tuesday and the flight went well, but when I stood up and slightly turned to deboard the plane my back spasmed and nearly put me on the floor. The attendants asked if I wanted medical help but I refused. I have been in the hospital far too much this month and only wanted to get into my own bed.

The doctor who did my Ablation is a Neuro Interventional Radiologist and has done 500 of these procedures before me. He fried that blasted tumor into oblivion, then injected bone cement into the vertebrae. Out of those 500, he has never had a patient experience paralysis (one of the risks), but he has had 3 patients experience the nerve pain initially after surgery, and only one of those required surgery to remove some bone cement that had leaked out onto a spinal nerve. I'd say that those are very good outcomes. Despite the fact that this procedure is not curative, but only palliative, I am very hopeful.

My MO though has told me I will never be able to stop treatment since those sneaky cancer cells are in my bloodstream and we never know where they will take up residence. As soon as this pain subsides, I am ready to get back to LIFE!

Kirby will be home tomorrow afternoon and I am very happy. Although I know he's had a blast playing and running with the dogs at the trainers house for 2.5 weeks.

The volunteer coordinator from where I volunteer set up a meal train for me so anyone who wants to can provide a dish for me over the next 2 weeks, so I don't have to stand and cook, etc. Very helpful! I specifically asked for low or no-carb dishes and the casserole she brought tonight is "Chicken Broccoli Alfredo" (Gluten-free & Dairy-free) I took one bite and it is excellent!!! She even brought me a copy of the recipe, so I'd like to share it here in case anyone wants to give it a try.

Chicken, Broccoli Alfredo

Ingredients:

1- cooked spaghetti squash

3 - cups of cooked chicken - chopped

1- 16 oz. bag of frozen broccoli

1 - 15 oz can of coconut milk

1/2 cup of nutritional yeast

3 tsp. of oregano

3 tsp. basil

1 Tbs. onion powder

1 Tbs. garlic powder

1 Tbs. gluten-free hot sauce (Frank's Hot Sauce, recommended)

2 tsp. Himalayan salt

Instructions:

Preheat oven to 350 degrees

Mix all ingredients together in a large bowl. Put mixture in a 9x 13 casserole dish.

Bake for 40 minutes.

I will wish you all a goodnight now and crawl into my comfy bed.

JunieB

I know I said I was going to bed, but I had to check my email and found this adorable youtube video that I think you all will enjoy of a dog politely eating a piece of watermelon.

https://youtu.be/FB5CpOjhiMY

Loveroflife

Myra, cute kids! I am sorry for what you have been going through. Treading water by yourself.....that's tough.

Mommy, sorry you got our heat wave. It left us a few days ago. Loving the weather now. High in the low 80's and low in the 50's. I welcome Autumn any time.

Junie, happy to hear you have arrived home safely. Even happier to hear that people are bringing food to you...what a blessing! Kirby will be so excited to see his momma. I should be going to bed soon as I have to work tomorrow. This is my story:

M0mmyof3

Well we are out of the heat wave but another one is coming Monday to Wednesday next week again! (Yuck!!!!!!!!!!!!!!!!!) The schools in my town for the last couple of days have been dismissing the kids early despite the fact they just started school on earlier this week. Even though we are only going to be in the 80s today, they are doing early dismissal again because of the heat and humidity.

Wren44

Junie, Who knew dogs liked watermelon? And he/she is very polite.

Mommy, I had to laugh. I don't think the Houston schools ever dismissed anyone for heat and humidity. Of course, that may have been because it wasn't going to change for months.

M0mmyof3

Some of the schools here are very old and have no air conditioning. If I were a parent with a kid in school, I'd be in total support of them doing this.

Jazzygirl

Hi friends- back from my reunion trip to CT and it went great. I came across this sunflower field driving home Sunday night from visiting some family at the end of the trip. It was breathtaking.

Wren44

My friend noticed that a sunflower field had already turned to the east at 11:00pm. What do they know?

feelingfeline

Beautiful.

Jazzygirl

Wren- I just learned that they all turn to face the sun at the same time. I never knew that? I guess people go to this field and wait for hours to watch them shift.

JunieB

Hello Ladies,

On night 2 a dinner was delivered to me and it included a container of Broccoli Salad. I have never tried Broccoli Salad before and was unsure what to expect. I took a forkful and as I began to chew, the music began to play in my mind/mouth. Can I say "YUMMY!" It was so delish I went to the store the next day to see if they had any more, and they did, but it is like $8.00 per lb. and I spent $12.00 on the 1.5 lbs I got. I can't afford to do that regularly so I just looked up a recipe for what appears to be the same salad and I am sharing it with you so you can share in the enjoyment if you choose.

Broccoli, Raisin, Bacon & Sunflower Seed Salad:

1 lb. bacon

6 cups chopped raw broccoli

1 small red onion, finely chopped

1 cup raisins

1 cup mayonnaise

1/2 cup of white sugar - If you are cutting sugar from your diet you'll need to find an appropriate alternative.

2 Tbs. white vinegar

1 - 3 oz. package raw sunflower seeds

1. Place bacon in a large skillet and cook over medium-high heat, turning occasionally, until evenly browned, about 10 minutes. Drain the bacon slices on paper towels and cool. Chop bacon.
2. Mix broccoli, bacon, red onion, and raisins in a bowl.
3. Whisk mayonnaise, sugar, and vinegar together in a bowl; stir dressing into broccoli mixture until evenly coated. Cover bowl and refrigerate for flavors to blend, about 1 hour. Sprinkle salad with sunflower seeds.