Skyemberr

Hi, Skyemberr. I haven't seen a post from you for a while and just wanted to check in and see how you're doing. I hope you are well.

Thanks for posting about your disability experiences.

Happy Ostara to you as well!

Hi, Skyemberr. I haven't seen anything from you in a while and just wanted to check in on you. I hope you're doing okay. Thinking of you.

Thank you for sharing and taking the time to respond. Yes, I have the exact same diagnosis as he did. We were both active, health conscious and happy as larks. Life can sure throw a curve ball. Going thru this with my husband was the hardest thing I've ever faced. I try to be grateful in all aspects of the life I have and I suppose after going thru the journey with my husband, I was familiar with a lot and knew some of what to expect. I spent endless hours reading studies and boards while we were in hospitals so I am grateful that I have some knowledge. There are still so many unknowns so I take one day at a time and see what it brings. I am trying to heal a "chemo" sore on the inside of my nose this morning...oh joy, lol. I am humbled by the folks who have suffered for years that offer support and kindness to all on this site as well as others. Wishing love and light to them all.

Skyemberr How is your friend in Chico. Is your Brother-in-Law safe. I remember how we worried when my father fought forest fires and those fires were not nearly as distructive as these fires are now.

Here is my lip balm recipe. It is slightly more involved than i remembered ... only because it is a few more ingredients than I recalled....


1/2 oz (14 g) beeswax
1/2 oz (14 g) vanilla infused jojoba or plain jojoba
1/2 oz (14 g) cocoa butter
1/2 oz (14 g) coconut oil

Healing Balm
25 drops Tea Tree
15 drops Lavender
20 drops Sweet orange

This recipe will take 12-14 lip balm tubes. I bought a tray but you can rubber band the tubes together and put them on a foil covered cookie tray just as easily to fill. You could also use those metal lip balm tins... you can either order new or reuse old, clean tubes/tins.

Heat the beeswax in a double boiler. I use a pyrex measuring cup in a pan with a bit of simmering water (you do not want any water to get into the wax/oil). Add the jojoba and cocoa and coconut oil and melt. Add the optional essential oils after taking oils/waxes off the heat.

It is easiest to use a pipette to fill the tubes. The mixture sets up FAST so you might have to set it back into the water to remelt.

Not all essential oils taste nearly as good as they smell Also, many of the citrus oils are phototoxic so use with caution! (Sweet orange is okay as is DISTILLED lime (but not cold-pressed)).

It doesn't take very long to make this recipe.

WOW you had your own issues today I trust you are well and still in a strong fighting spirit dont lose that . Do not give in to this journey thru the precursor to Hell. MY CIPN is about to peek now 23 months post Chemo. I have a few spots of TIC Doulourough ( Bad spelling ) its a Form of PN but in a focused spot my mother had it in the TRIGEMINAL nerve. its like being struck by lightening but you have a 20 second warm up and then it strikes . The spot is Always HOT and I've put thermal tags in the skin and it runs around 44 Deg Celsius normal body is 36.5C so its a furnace in a 2 inch spot. Being a Chemical Engineer and My mother a Pharmacologist Dad a Industrial Pesticide Salesman. I have tried several of my own formulations Compounded by a Pharmacy and Prescribed my General Doctor, we have what seems to be a great relationship especially for the neuropathy issues. I had facial injuries in 1968 that severed the Trigeminal Nerve ROOT and has left me in a lifetime of unending g pain Thus why I was on the max dose of Gabapentin. its still painful but tolerable "PN", also why I could not reduce the dose of Gaba. A REAL ROCK AND HARD SPOT!. I have COPD thus cannot withstand the smell of POT or Cigarette smoke. I do not find the use of more powerful Opiates above a T3 for long term, ( more than 10 days ) of value this will create a problem worse than I can imagine ( yes I have been that root for Pain from A shattered Neck all 7 vertebra and the skull pedestals broken. NOT going there again. The option is LOW THC and HIGH CBD content Marijuana, now its Fully legal in Canada I will try it. Thus Dr. has Asked a Weed shop to contact me regarding this. Wil know about it soon. HE is in full agreement with the idea of the OIL mixed in edible form . OF course I will get a certificate of USE this allows me to have High Blood contents of CBD in my system apparently the saliva test does not distinguish between the 2 compounds CBD OR THC it reads both and if one is high it is ASSUMED that both are high. However CBD does not get you high and is the Prime compound for pain control . Regardless of Legality CBD distinction will them become a Court decision not a Police decision. it seems so simple but a doctors certificate is the simple way to treat the issue.
This was again my proposed Idea and I will keep in touch with you about its results . You are a Caregiver and obviously reach out to many, finding an answer to this problem is As Chemo A COMBINED PATIENT RESEARCH ADN DOCTOR APROVAL journey. We are Guinee Pigs in a sea of unknowns. The good part of this is I spent half of my working life in Research and Development and MY doctor has seem me develop my OWN Pharmaceutical treatments for all of my issues, often giving him a choice of 3 meds for any new problems. I know how to BE patient and how to study the validity of treatments. and just because its good on Friday is not a resounding success it has to serve us long term. Were on the cusp where doctors reach for Oxycodone far too quickly omitting the value of Gabapentin. I exceeded its usefulness but others should try it first. And As a last resort Give into POTENT OPIATES. to many cannot be endowed with My Pain tolerance, I have shattered my spine severed nerve roots and know what its like to see the world pass me by form a wheel chair with head supports and leg straps. I do not quit and today I again walk and Cycle. But this has once more caused me to suffer beyond what our Science can easily find an answer. IF I can find many answers not simply one I will I have 2 but they are not ideal thus I am not happy with them . I can do better, I owe this one to my Parents to add the skills and interest they left me with. A Family of scientists. Like Family Is the Son. In so many ways its an interesting and very great story. if you want to hear about it just add outlook.com to my screen name . Thanks for your support and lets keep in touch .

Your correct I was on the OXALI PLATEN Chemo . It Killed one devil and Created a new one . I do not turn my back on such problems


Peter

Happy day to you...thank you for taking time to share with me. I am 5'7 and 130lbs now so losing weight concerns me. I love the nut butters as well as smoothies and protein shakes. The cold sensitivity with the oxi concerns me but guess I can get creative with room temperature liquids for a few days. I have to go thru a chemo class and then I will have my first session. I had my port put in yesterday and it went well. I have not needed any pain medicine at all. I am going grocery shopping today while I have a clear head and plan on stocking up on good stuff to have handy. Every body and soul is unique in their make-up and response but it sure helps a lot to know you aren't out on the ocean alone. Wishing you a beautiful day!

So glad to see you posting! I have been worried about you! Are you ok? My husband died, finally, after being on the any day now list for over two years. It was still a huge shock.

Just a thought. If Robin Williams had an undiagnosed illness, how can he be diagnosed after his brain stops working?

I knew him when he was a gangly teenager. He would come to the campfires near the waterfront of Sausalito. He was always frenetic and usually very funny. There was hardly a way to shut him up. He was likely suffering from some trauma of some sort most of his life. The waterfront was a place for safety for the riff raff and effulence of society as well as the very talented because everybody was so weird that nobody was weird and everybody was accepted despite and including whatever their pain or however odd their talents.

Alan Watts, Shel Silverstein, Jere Peacock, Janis Joplin, and lots of other musicians, artists, and writers also visited and/or made it home.

I did not wish to embarass you but nut milk is simply a thinned nut butter.

Feel better

Skyemberr, what is that object in your photo? I have looked at it for so long and always thought it is so pretty and keep meaning to ask you. :-)

Hi, Im not so good with emotional stuff but I hope that if you rear up and say something like my car and I will use it again, fix it please, you might make your hubby less concerned about life without you.

I remember what it is like. When my teeth started crumbling, for example, I was given a palate of colors for bonding and chose what looked right to me. The dentist overrode me. I disagreed twice and then was too exhausted so, now that I am better and my teeth have returned to their rightful white, the greyish color vanquished but, lol (Im really unhappy about it despite the lol) my teeth are two toned. The bottoms where my own enamel is okay is white but the bonding material which went over where they crumbled by the gum line is a dull grey.

Just pick one thing. It is too much to fight for all of the things which you want improved. Where you want there to still be room for your input and presence. Just one thing.

And yes, lol, get a juicer. If you like, I will send you a sample of "moringa". You really owe it to yourself to look it up. It is food. Third world countries pick it fresh (& I do too) because of the dense energy its leaves provide concentrated vitamins, minerals, essential fatty acids, yadda yadda. You can just mix it into a cup of hot water or into that yogurt upon which you depend. It will energize you and has been found to not interefere with anything. You can buy it in a store but that stuff has been high heated. The leaves I grow have only been washed and dehydrated.

Like the lavender, having it is different than using it. :-]

Take better care of yourself. I used to have a list on the bathroom mirror. It said "I know you are tired. Brush your teeth. Use the netipot. Wash your face or shower. Go to kitchen."

I did not think much of it then but I cant tell you how often I would awaken from my stupor or drag myself to the throne room and look at the note and not at all be sure I had completed the list. Looking back, it helped a lot.

Get well soon.

Hi Skyemberr, I was just checking in to see how you're doing these days? We hope you're doing well.

Gee. Reread what I wrote to answer your question. Did not mean to seem so dictatorial. It was just a suggestion of something to try which helps me.

One of the things I was taught was to put a balance ball against a wall and lean into it in a few ways. Amongst the things I was good at when I went through the process was leaning.

My balance was screwed as was my then stren gth.

Any tips on what to eat to prevent digestive issues?

https://blog.nourishingworld.com/2015/06/08/decoding-manuka-honey-designations-what-do-the-numbers-mean/amp/

I thought you might find this manuka honey information interesting and helpful

Hi Skyemberr. Us pagans gotta stick together, huh? I'm Wiccan. Happy almost equinox. : )

I was fascinated to learn that you are a pagan I will be wishing you and Shelby happy equinox, which this year falls on the second day of Rosh Hashanah

Good one ... Fox & fiends:-)

Surgeons are a special breed of people. I just had leg surgery and not only did they not give me anything to dull the pain once the local wore off but they specifically instructed me to not take anything over the counter.

The surgery went well. It looks like the stitches will heal nicely but gee whiz, who are these sadists?

Best wishes.

Welcome to what next, skyemberr, I hope that you can find some help and hope on your journey, and best wishes to you in your recovery....

Thanks for answering my question. There is swollen behind the eye which create high pressure inside brain including pressure on the eye Nerves. Eye specialist said there is nothing they can do. While my neurosurgeon said my tumors are not removable because there are multiple locations.

Good morning...we are currently on Royal Caribbean's Freedom of the Seas in the western Caribbean...ice rink, rock wall climbing, mini golf, wave rider ( so you surf on board), basketball, etc., etc.
My husband love Holland America for ourselves and that is what we plan to take to Alaska, definitely not a cruise line geared for children. The best cruise line, in my opinion, to travel with kids and teens is Norwegian Cruise Line...check them out. And so happy you made it to your son's first day...we travel in August because my daughter and daughter-in law are teachers and we have to wait for the end of baseball season and summer camps...school starts 8/31. If you have other questions you can reach me at G r a c e b m c m @ a o l. c o m ( just remove all the spaces) for cruis questions.

You will also stay in my prayers

Hi, I went thru the same crappy deal and the tumor growing on me was external and I was pointing at it asking for removal. I had to wait 13 years and through so many doctors until I broke a big toe, felt sorry for myself, took solace in ice cream, and grew the "little desert flower" big enough that some cretinous surgeon would deign to remove it ("that must be uncomfortable") and do a biopsy ... now that it was big enough to treat because it had roots and clear margins were not possible.

I did bot let anyone rush ne nor scare me becauae I had already lived 13 years. I wanted it gone. I wanted to live. I wanted a life on my terms not theirs. Thoughts about alternate possibilities will drive one crazy but .. it was during all those years that I learned about food as medicine. It took me another 18 months before new drugs were invented to make treatment risks acceptable to me and before finding an oncologist I did trust.

Best wishes

Here I thought Ca had much better doctors .. so sorry for your woes ..

@Skyemberr - thanks for reaching out again, it has been awhile. I had to have my Oxy reduced by half to stop me being so ill with side effects. Was unhooked from round 7 yesterday, hoping to do 8 and 9 and then miss 10 as I want to go out to the wilderness. I will see how I feel when I get back as to whether or not to continue with the last couple. My oncologist doesn't seem to think I will get through them all. This is all so very tough isn't it? Then goodness we have each other.

Skyembrr,hi lady. Saw your answer about ports, and wanted to tell you my personal experience. Had mine inserted Sept. 2013, under twilight sleep, as an out patient procedure in the radiology department . First several days had neck pain, although many have little to no discomfort. I was on pain pills for four days then discomfort lessened and pain no longer an issue. My husband installed a hose attachment to the shower instead of having to deal with an overhead shower, and I loved this. Cheap and easy yo install. I showered a day after insertion of port, covering site with a shield. Your chemo center have these available or you can buy them in drug stores. Dressing over site for first few days. Took me a few weeks to adjust to looking at myself and my chest, I was self conscious when wearing low necklines, but people really didn't noticed the area. The area was a little bruised at first . The first time they accessed my port,it hurt..Here again this is a subjective reaction . My chest area is very sensitive. A fellow survivor having chemo told me about Lidocaine creme. This creme is over the counter and inexpensive. Just ask the pharmacist if you decide to go this route. Many people do not mind the stick. I apply my creme over the port are 45 min to an hour before access, applying a shield over the area. The chemo centers also have a numbing spray, it this did nothing for me. I am very glad I got my port. I am not a hard stick, but feel the port really saved y veins throughout my treatment. Chest ports can move a little, especially with big breasted ladies, that is one reason only specially trained nurses access them. My port is now slightly tilted back, but the chemo nurse knows exactly how to position me to access it, usually , the first time. I wish you success with your port.Take care.