Alice --- Amazing Alice, I called her -- passed in June of 2016. I've updated this blog topic on August 23, 2016 as well as ongoing this spring and summer and things were changing. Alice had become a writer on Lumigrate at my request, because she clearly had talent for writing. She wanted people to be inspired and to also learn what it can be like to have chronic pain and fatigue (fibromyalgia was what she had been diagnosed with). She wanted people to understand the spiritual aspects of things, as well. And when she was diagnosed with cancer in 2012, she wanted people to know what it was like to be dealing with THAT, as well as the chronic fatigue / pain.
So I'm attempting to memorialize Alice in this blog topic, and allow her wishes to be on-going. I believe people can learn much from what transpired. For one, the importance of the live world as well as the virtual, online world, for people who become incapacitated. Facebook was instrumental, and so I thought I'd share some of the Facebook friends' comments on her wall (with their names not included for privacy).
So sorry to hear of Alice passing..she was such an inspiration with an abundance of courage throughout her journey. She faced her illness with such Grace. I feel blessed that I got to know her through FB. I pray for her family, remember she is at peace and is no longer suffering. Fill your Hearts with her joy and the love she shared with you all. God Bless.
Alice fought the fight with such grace and dignity. I am sorry for her loss but can imagine her celebration entering heaven - one reserved for a good and faithful servant.
Mrs Alice, you were an angel here on earth as I know you are in heaven . We have been friends for four years now and you have been there for me from the beginning of my cancer journey. We talked on here and off of here, you had so much class and grace about you and were so brave , you never complained about anything you were going through . I remember when you were finally strong enough you were finally able to go to the bay and sit by the water, you told me how you loved doing that .
You also were able to go to church you so enjoyed that and missed not being able to go on a regular basis . You gave me so much encouragement when I was feeling so down and I can never thank you enough . I know you gave this journey with cancer your all, and now that it's over you are no longer suffering or in pain . You are in heaven now, with God, as a precious angel . May you rest in peace ; I will always remember you and you will always be in my heart . I love you my sweet friend . It was an honor to know you.
I really could not say anything as well as they have. This was a new thread started on the day she passed:
How is our sweet friend? I am in the UK but have been touched by Alice's friendship and grown to love the person she is. We are praying for her over here too. Please update us and give her my love xxx
I am Alice's cousin. She passed away peacefully this morning in the hospital ICU unit. She touched many lives with her kind, caring disposition. We will miss her greatly!
And then there's her son:
There will be no more fight. There will be no more pain. There will be no more suffering.
This morning, my sweet mother passed on from this world.
She was still in ICU, and we were on our way to be there with her when she passed. We didn't make it. However, we were with her in her last waking moments yesterday. Even to the very end, she was fighting to stay a little longer. It was clear we were near the end, but she made a point of mouthing "I love you" to everyone. And when my dad told her it was okay to let go, she threw her hands forward as if halting someone and mouthed, "Wait!" A fighter to the end.
This journey with her has been painful, confusing, agonizing, but ultimately inspiring. If you have never thought about the value of human life, you needed only watch her battle against this unrelenting disease.
Yesterday, I was across the bay, having just wrapped two days of a beautiful video shoot in Mom's old stomping grounds of Baldwin County. Sitting on the Fairhope Pier, relaxing after a job well done, feeling the warmth of the sun on my face, I thought of Mom. That pier was her favorite place in the world. She mentioned several times how she wished she could go there just one more time. Today, I know she is on a Fairhope Pier far more beautiful than any we could ever imagine. She smells the salt air, feels the wind on her face, and basks in a light more glorious than any sun could ever shine.
You fought valiantly, Mom. Enter into His rest and enjoy the spoils of a job well done. We love you, sweet girl.
A comment on the Facebook thread under the above:
Your Mom was such an inspiration to me! I loved hearing her kind words when I would sew/embroider something that looked like crud. She kept inspiring me, giving me hope, and not letting me give up a few years ago. I will cherish the memories and keep her close in my heart--always!
And: "Praying for all of the family. She touched so many of us. I will cherish that friendship she offered to me. She cared for all who she came in contact with."
And: "So very sorry. Alice was a courageous caring and Godly woman and will be missed by so many. So sad to hear this, but happy that she is no longer battling this. Prayers for you all."
Alice wrote on Lumigrate about her faith -- using Lent to motivate for changes in diet she had become aware of due to the content I had provided at Lumigrate. And the last piece she provided was about the Gulf, when the environmental disaster occurred there. After that, she would later tell me, her life changed dramatically because so many people around her became ill. And then she would get the cancer diagnosis in 2012.
Fibromyalgia is what I thought Lumigrate was "going to be totally about" when I was starting to spin the idea for it around in my head back in 2007. Yes, nine years ago now. In re-editing this in August of 2016, because of Alice's passing this summer, and thinking overall about what had occurred in 2006, however, I'm realizing that it was really NEVER going to be 'about fibromyalgia', really. In 2006 I had all year to figure out via networking and seeking providers' input in Grand Junction, Colorado -- a city reputed by mainstream to have superior health care -- about what gynecological expert to see about a hysterectomy, figure out which hospital I thought was better for my needs, and line everything up.
After what felt like "the longest 24 hours of my life" due to a post-surgery medication bungling, due simply to the usual issues we're all aware of today in mainstream, organized, allopathic medicine, I believe there was perhaps some "guidance" that came to me as I was starting to 'clear' and thankfully be granted my requested discharge. The thought, or message, or combination of both was essentially this: "You know all you learned from your career in mainstream medicine, you did everything right, yet THIS happened ..... Imagine what's happening other places."
But by initially launching onto the Internet in 2009 with content that could benefit people with fibromyalgia, and looking to connect on Facebook with those who seemed to be the types who would benefit from the work entailed with being a proactive, take-charge patient, I connected with some really incredible ladies the first year. I invited them to register and write in the forums, back when we were doing that format, and some were particularly good writers -- Alice was one.
Spring of 2016 was difficult for me in a lot of ways, and one was that I was forseeing what was going on with Alice reaching the end of her life. She indeed passed, in the hospital, 'fighting' to the end, or so it seemed. She would sometimes comment about frustrations there with the running of things and her experiences, and then she'd also comment about the heart-warming things. Alice, in the past when she was initially writing for Lumigrate, wanted people to learn from her experiences what it's really like to have fibromyalgia; when she would have cancer rear it's head in 2012, she said the same -- 'what it's like to have fibromyalgia and cancer'. And so, I've edited this after I've had time to process her passing. Prior to, I spent many walks and times in the beautiful Colorado outdoors, thinking about Alice, and what she was going through. And how to continue what her intentions were but not intrude into her time left with this life.
Back in 2008, when I was underway to create the seminar series at a short-lived integrative group I was part of in Grand Junction, from which we would produce a handfull of the best presentation to launch the website with videos to help those with fibromyalgia, things happened which I finally realized was 'God', 'Source', 'WhatEverYOUCall It' guiding things. I 'got the message' that 'this isn't supposed to be about fibromyalgia, it's supposed to be about all of it!' All wellness, functional medicine, integrative medicine or other progressive paradigms that lead us back to the traditional medicines and ways of our past wisdom.
I went out onto Facebook after having someone train me and my wonderful then-assistant ('creative director' was her title and she was creative and she was directing things, I was like the producer), while the seminars were being done live with our nurturing and videotaping, deciding what to have them come back to our Lumigrate studio space and re-record with spiffed up 'perfected' PowerPoints that the wonderful assistant / creative director took the lead on, and sought out the places on Facebook people with 'fibromyalgia' were going to discuss, and when I'd see someone I thought looked special, I'd put in a friend request. That's how I became connected to Alice, who I later came to call Amazing Alice.
We had the best time on my wall back in 2008 and 2009, these women (mostly, sometimes a few guys) who had chronic fatigue and pain. It was totally unheard of by them prior to encountering me and Lumigrate that foods were contributing to symptoms and you could change a lot about how your reality was each moment by what you put into your mouth.
Alice was one who dove in to learn and she had a keen interest in food. She was a Southerner life-long in the United States, I would come to learn; her uncle was a well known caterer in Alabama, around Mobile I believe. I was in a relationship at that time with a man from Louisiana, whose 'mama' had taught him to cook and he was outstanding. He liked the idea of some of his creations being made into recipes and shared on Lumigrate, which was fun but labor-intensive. I started forseeing we could have a cooking show that would be informative and funny, because we were rather like oil and water, but together made a nice dressing for salad.
Alice put a ton of recipies on a topic in the forums about food prior to her going 'under the knife' for a massive surgery she had to replace and fix and update hardware in her spine. I was so worried about her, but she did well! This was around Thanksgiving, 2009 if I recall correctly.
Prior to that, I'd seen Alice trying to download every video we had and she was having difficulty. Without an IT person on staff anymore I was concerned that I'd not be able to problem solve it but between Alice's knowledge and mine, the problem was figured out and she downloaded everything she wanted, successfully. This was late summer of 2009, after I'd had to stop employing the wonderful creative director / assistant and moved all my equipment for Lumigrate to my rented home I'd been at for three years at that time, with the help of the above boyfriend who was by then a former/ex who dropped in out of the sky like 'magic' the day I needed to move things too big to go in my vehicle, helping me move everything.
The assistant and her guy met me there and helped, plus she needed to get her personal things off the hard drive she'd procrastinated on. It was a very hard time for all of us, really -- we had such a collaborative spirit and saw the need for Lumigrate to reach people and wanted it to be able to have financial success fast enough to keep our financial boat afloat. It was a very long day but in two loads we had it all, and boy was my little home a packed mess after that! No more parking in the garage. He'd seen me get upset at something we were struggling with to move and he set his end down, didn't look at me but at the floor and said 'Mardy, you had a good idea. It's still a good idea. It'll always be a good idea, it just takes time and things don't go as planned (he had his own business experience to draw from); now, pick up your end and let's go.'
On Thanksgiving 2009, I launched a new FUN thing -- Yenta --- which I thought we'd try with another very intelligent, wise woman who was part of the interactive 'Grate Group' as we called it, as they'd registered to write on Lumigrate's forums, back when that was how I was using the forums. Yenta was written by a Jewish mother and her mother, who would, sadly, come to pass and bring the Yenta era to a close. I'd asked for something less creative, I'd just asked for someone to write about the Jewish culture as that affects our current beliefs and abilities to change what we're doing with things that affect our wellness, same as anything we 'steep in'.
Yenta was a 'hit' and was providing the Jewish perspective so I extended an invitation to Alice to write from a Christian perspective. And since we were all Facebook friends with fibromyalgia diganosed, and figuring out what to do about it in common, it worked! Alice wrote some stunningly moving topics, which also touched people. And this was very unique what I had done with hand picking some arms to twist for writing a little on the Forums . That would get reads. Reads would translate into ability to monetize AND get the word out about Lumigrate's content! Win, win.
Just like in live life, we all drifted our different ways when we were not on the same page or 'over it' that we were on the Lumigrate pages. Essentially Lumigrate's YOU model is my cornerstone and our foundational key concept and it means that a person really puts effort into making the changes that will lead to improved well-being. And Lumigrate is only about the non mainstream, which was not what, ultimately, the others resonated with so much.
It's a long walk from conventional, mainstream medicine to holistic, functional medicine, and when you use the best of both it's known as 'integrative medicine'. It was too frustrating for people who were used to spending their money the way they had been, to deviate from this and have different priorities. And in some cases people weren't with choices on funds, they simply did not have any that weren't needed for basics to pay for the things that aren't covered by the system, and they were having copays for all the things they were getting from the system. Change does not happen in one year, one cycle of friends, one decade, or maybe even in one generation. But most did embrace some information, and make some changes, from what I was told.
I thought Alice had done really well, back then, and I saw her posting on Facebook regularly. Her life was definitely at a better level than when I encountered her on Facebook. And then in the summer of 2012 she disclosed she had been diagnosed with breast cancer and she disclosed her plan of treatment. She wanted to have people learn from her experience what having fibromyalgia and then cancer was like for her so others might learn and benefit. So that is what this topic in the blog area is about, and I update it from time to time. I've been updating it more lately as there have been a lot of things going on again.
By spring 2014 3,311 visits had been made to this topic, and by today, spring 2016 it was nearing 5,000. So it has gone far to your intention and desire that people learn from your case example... She's such a spiritually deep woman, and is so tenacious, she's currently held her ground lately with the cancer, after going onto hospice care earlier this spring. For about a week I was really 'processing' where things were at for her, and I went on many walks in the desert with O'Rio Grande (also seen in a NEW blog topic from this year) the dog with reversing symptoms so far since my starting working with him. Contemplating and sending her way that which I can send from my heart.
From just prior to Fibromyalgia Awareness Day 2016, her daughter in law posted on Alice's wall:
Just to update all of Alice's friends: she was taken by ambulance to the ER on Friday afternoon because of respiratory distress. This came as a shock to us because she had just gotten good news from the oncologist that morning that her cancer was stable, not improving, but stable. So, the chemo was doing its job. Anyway, she was intubated and in the ICU until Tuesday when they moved her to a regular room. She didn't seem to be improving much but was holding her own. They were even talking about sending her home today or tomorrow. However, just got word that they moved her back to ICU and intubated her again. We're not sure what this means, but we covet your prayers.
Then from May 12th, 2016, which is FMA Day, the daughter in law again posted on Alice's wall:
Just got a text from Alice herself - she is off the vent!! Praise the Lord! Keep the prayers coming
From May 13th, 2016, again the daughter in law posting to Alice's Facebook wall:
Alice will be moved to a regular room as soon as one is available. Praise the Lord! They are thinking now that this last issue was not related to the cancer but instead she had acute fluid overload in connection with her blood transfusion. ("Fluid overload occurs when too much fluid is transfused or too quickly, leading to pulmonary oedema and acute respiratory failure.") Just thought I'd let everyone know. Prayers are working.
And from May 14th, from Alice herself:
Every day I wait anxiously for visiting hours. Can't wait to see my husband's sweet face. I have enjoyed all my visitors, but I am blessed to have such a loving husband who is here every day, right on time.
And May 15th, Alice posted this:
I am so thankful to be feeling better. How am I sure I am better? I am wishing I was home to clean up and purge the items on the kitchen counter. Did I mention I am O C D? I've been in intensive care for over a weeks and my mind thinks I can clean the kitchen.
(I particularly chuckled at this because after the big surgery I referred to, above, it wasn't too long and she admitted to scrubbing the shower and I had to remind her that was perhaps a little much for where she was at in her recovery.)
The next day, from her daughter in law:
SHE'S HOME! They said they were gonna transfer her to a room, but she's doing so much better they just decided to send her home instead. So, she's home and in her own bed. Praises to our Good Good Father!
(I chuckled again, with a litle tear in my eye this time, seeing one of her FB friends (who might know her in live life, or just as most of us do via Facebook) remind her to take it slow, and how happy she was to hear she was home). Then, I didn't see anything for a while. I wonder in those times if things are going well and they're just enjoying the time they have together and doing their everyday tasks while helping her convalesce, or things are difficult. You just wait for the next status update. A week later:
On May 23, I saw this posting from her son to her wall:
I wanted to update Mom's friends on her situation: Wednesday night, she was very groggy and experiencing some delirium. Around midnight that night, my dad called the EMTs. Because Mom could communicate and sign her own name (though with great difficulty), they could not legally take her to the hospital.
Dad stayed awake watching her all night, and was unable to get her fully awake by morning. He called home health, who sent a nurse immediately. She then ordered an ambulance to take her to the hospital.
At first, there was some suspicion of fluid accumulation on the lung again, but it turns out she had a severe infection which was preventing proper O2 exchange. CO2 was building up in her blood, causing her blood to become acidic. The hospital intubated her and sent her to the ICU.
She was on the vent for about 24 hours, maybe less. She stayed in ICU until yesterday morning, at which point she was moved to a regular room. Her fever is gone, her O2 levels and respirations look good (on oxygen, of course), but her BP has been a bit erratic.
I'll update later as I hear from her and Dad.
Keep praying!
And the comments under definitely reflect how many people she has praying for her. At the onset of this ordeal with the cancer I'd sent her a basket that included a cool Christian cross made out of shaped wood that would stay in the palm of a hand if someone was not as able-bodied as usual. I frequently tune into 'my space' when outside in the outdoors walking and 'do my thing' to connect with Source and therefore Alice's soul (in my beliefs and feelings about things, at least). Since I believe so differently than most of her Facebook friends, I keep a low profile there now, and observe. And continue to use my judgment in honoring her intentions for this thread to serve to educate people.
Now, I'll let you read on if you wish, as this update is now completed, as you go on you'll see that some of what I said above will be repeated below from when what is below was what people were reading.
This week, I felt it was the right time to call a former school mate who I'd been asked to contact with a couple of others who knew her because she'd had breast cancer. It turns out she was also diagnosed with fibromyalgia. She doesn't own a computer, let alone interact with anyone on Facebook. I realized how much my fund of knowledge has been enhanced by people like Alice sharing this and my paying close attention to it, as I work it into what's on Lumigrate for our YOUsers to benefit from. I thank all, and of course Alice is at the top of that list. The A list.
To include what she's shared on FB from Spring 2014, Alice wrote:
My exercise for today will improve flexibility, strength, stamina, mood and cognitive ability. Many woman do it, most men won't. What is it you say that brings all these benefits?........ I am flipping the sofas over (strength), vacuuming under (stamina), washing the wall and moldings behind (stamina and flexibility) and remembering where I stopped after a break so I can avoid redoing an area already done (cognitive ability). Oh, and another benefit: improving my communication skills by explaining what I am doing and announcing when I will run the vacuum to keep the hubby from complaining about the noise. All in all, it's a great activity!
How I Originally Started the Blog, Before Editing in Over Time
I wish I were not writing this today, and I hope I have the wisdom inside of me to navigate this situation; I rest assured knowing of the resources to turn to in "The Grate Group" of knowledgeable, wise and helpful people who 'provide' at Lumigrate.com. (Note from October 31, Alice sailed through surgery and recovery and was home within three days, back on Facebook and talking about having dropped her glasses and not having a reacher and her helpers had finally fallen asleep by week's end. She will now begin the chemo phase, and I will keep general updates here as things progress. Thank everyone for their interest and, if inclined, prayers her way.)
During the time from mammogram to diagnosis I have been open with you, my friends. I have a new journey now. My new path is from diagnosis to wellness. It may be an arduous journey, it may be long and treacherous, but travel it I must. My faith remains strong even though I am weak and shaken.
On Wednesday (September 5th) I was diagnosed with Multifocal Carcinoma and will have to have a complete mastectomy* followed by chemotherapy.
Now more than ever I need the support of my family and friends. Your prayers, good thoughts and encouragement will be very important to me now. My love to all.
* - Mardy's note: Currently there is an MRI scheduled and another surgeon consult on 9/24 with surgery to be after that at some point, and I will work to keep things updated in this area.* Mardy's Note - 11/12/12 Alice's surgery went ideally and her son kept us updated on her facebook page.
- She went in on a Monday , 10/24 and was home by Thursday.
- She took her laptop back pretty early on and was doing her own FB, and I saw in the middle of the night she dropped her glasses on the floor and had no reacher/grabber, but she had Facebook to complain about it at which started a great conversation about reachers, and her Aunt was quite knowledgeable. She has a lot of wonderful family support. And her son commented about how they had barely finally gone to sleep at 2 am or something just to be sure we knew how attentive they were. Caregivers sometimes get less rest than the patient, we all know, so this was a good example. Exhausted I am sure they ALL were.
- About a week into it she was irritating her son and husband for getting a cup of coffee, afraid she would irritate the wound/drains, tubing. She had home health nursing, naturally.
- Then she developed some infections and she had to have some surgeries for those areas and then over the weekend had home health nursing but the need for the wound supplies went way up so she was concerned about running out, because she was having so much drainage. I told her they'll stock her up the next day and it'll be Murphy's Law that then they'll solve the problem and she'd have to give a way a bunch of gauze and tape. This was very similar to what happened with my husband in 1986, she even had the same form of betadine infued gauze strips for packing.However, we'd not had home health, we just got instructions at the hospital and went home and checked in the ER every Friday for another round of antibiotics (different cause of infection and so I held my breath it was not MRSA, etc.0
- Her husband was bringing her 3 meals a day in bed. I didn't like the sounds of that, as it means she is not up to getting out of bed for a meal. But she was not 'complaining, just saying'. My radar was UP, though. So I kept an eye on her Facebook and saw this just now (Tuesday after Veteran's Day weekend): (Edited for the purposes of it's being on the website, in accordance with Alice's wishes that others' education benefit.
"Hard days since Saturday and lots to update you with. On Monday the doctor opened up (the skin of my abdomen) about 12 inches because the infection was getting worse. The home health nurse came out and installed a wound pump on Monday afternoon. She asked permission to document it on their wound cam when she comes on Wednesday and then future visits. She said it was the worst one she has ever seen and they do that with the really bad ones.Wouldn't you know if I am going to be on top of a list for something, it is this!
My reconstruction and mastectomy is healing well. I am feeling very sick right now, running fever and so sick at my stomach. I have not been downstairs since I came home from the doctor, they told me to stay in the bed, so here I am. I am looking forward to better days and I know my Lord will get me through this difficult time. Love to all.PS I forgot to tell you the good news. The cultures came back today that they did when I had the second surgery. This infection is not staph, MRSA or flesh eating bacteria. That is great news. It is just plain ordinary infection. Yay!"
From the Friday before Thanksgiving, 2012: (Modified slightly for our purposes of education at Lumigrate)
"I saw the oncologist today. She recommends I will have chemo once every three weeks for 4 1/2 months, then radiation, then anti-hormone therapy. I have to wait until I heal to have chemo and I am on a wound pump right now because of infection at my tummy surgical site, so it will be January before I start chemo. I was ER positive and HR negative. She said I could have had chemo to shrink the huge tumor before surgery, which I was unaware of and perhaps my other doctors were as well, I will have to ask if there was a reason that option was not presented to me. Somehow, dye doesn't work so well in my body and although I kept telling them that it was getting really big, they were shocked at surgery when it was 9 cm long x 4.8 x 4.9, which is huge. In one month I will have a pet scan, ct scans, heart tests, etc. Right now I am stage 3a pending the findings on the pet scan. 9 of 15 lymph nodes were cancerous. She said if I have chemo, my chances of it coming back shrink from 70 per cent to 5 per cent. So chemo it is!"
(Mardy's Note: What a difference it makes when you're going through something arduous to feel it was your choice. Chemo or no chemo, up to you. My gynecologist gave no opinion about hysterectomy or not, I was a candidate and my surgery would pay for it, but it was up to me. I hope Alice is feeling similarly in control and I again THANK YOU ALICE, for your amazing, clear, concise, information about the process and for sharing it with us for our education.)
3 Days later, the Monday before Thanksgiving: ""Great news. I saw Dr. _______ today and he said the tummy area is looking better and that the swelling I was concerned about is nothing to worry about. I don't have to go back for two weeks. Right now I am waiting for the home health nurse to come put the wound vac back in. The thing has helped me a lot."
December 19, 2012: I want you to know that I am improving with each day and will be off this wound pump in three weeks when they sew up what has not already healed. I am doing well. We went to see family today and went to the u-pick farm and we picked greens. (My relative) was happy to get out for a while, as was I. It was really nice to get out today and enjoy the beautiful weather. I have not been going anywhere except to the doctor, but he said I could start doing a few things now, and today was my first day out. I was really worn out when I got home and I had no trouble taking a nap.
Second week of January 2013: I am doing well. I feel good but I do not have much energy. That will come when I can move about more freely. My surgery to close my abdomen will be on Tuesday, Yay! I will be so glad to loose the wound vac and not be attached to a machine that has to be plugged into the wall many hours of the day! I will not miss the noise it makes 24/7. I am so happy a resolution is in sight!
Update on my journey with Breast Cancer and FMS/CFS - 1/15/13: I had my third surgery since October last week. I had infection from the surgery to remove my breast and reconstruct it from tissues taken from tummy muscle and skin. Two weeks later I was opened up again, and I had been on a wound pump for a couple of months. A small area had not healed on the wound pump. I went in to have that sewn up. I thought it would be a small surgery. However, the surgeon found a large fluid-filled cavity and had to do surgery all the way from the opening at my lower abdomen to my ribs. He did not have the cultures back when I went for a recheck two days later. I have two stitches to hold together the huge cavity that are made of a plastic coated wire that looks like electrical wire, about an eighth of an inch wide. The pink plastic coated wire stitches are about and an inch and a quarter wide. From what I can detect, I seem to be healing well. After my first surgery I tried to get up and around/active, and stayed up too much, maybe. During this ordeal I have learned that I need complete bed rest so my body can heal. (I go downstairs three times a day for meals.) It seems that in people with FMS/CFS, our energy resources are low; healing takes lots of energy, so this time, I'm going to do bed rest so my body can use the energy needed for healing instead of doing other things.
[Mardy's Note: Please see my comment, way below, about "I" for Infection in SHIN/SHINE and our information about that at Lumigrate from Dr Spurlock and I (as I believe moving the body's muscles gets the 'juices flowing' but it has to be done in a skilled way, with people knowledgeable enough about what is going on with people with CFS/FMS to help and NOT hurt/harm, as frequently occurs from PTs who work with the general population and not specifically with CFS/FM.)
Mid March: Yes, this is now OVER half a year since I wrote this blog post. I checked in on Alice because she was having the surgery to install the port to receive the chemotherapy and I was happy to read that her family was visiting, since she reported she had so much pain from fibromyalgia tha she didn't sleep the whole night. She utilized pain medication she had on hand and didn't sleep but the pain did subside and she also talked about enjoying the family so much. We'ver chatted about her getting some plants in the ground in recent weeks as well, always the avid gardener. Looking forward ... to this next BIG step and I noticed that we've just had our 1,000th reader of this blog, so I hope it is of benefit to people reading along.
From June: I woke up this morning in less pain. So yay! This portion of the chemotherapy causes great pain. I will find out next week if I have two more or if he is going to stop with this one. Either way I am close to getting this part of the treatment done. So, yay again. After this is radiation, but I am going to ask for a break between the two. I just feel that I need to let my body gain some strength. And yes, everyone I see says I need to stay blonde, as they like the blond wig, even when my hair comes back. My husband loves how I look in the blonde wigs. When I put on a brown one he requests the blond.
Alice finished up chemo and had some testing done -- imaging showed a couple of things to look more closely at with MRI and she got the feedback about what that was about. It was something to keep aware and watching as the doctors weren't quite sure what it was, but seemed reasonably reassuring about the overall. Alice was so worn out from all that is related here, above, she asked for a little time to regroup, which they agreed with. And then she plugged back in, read on: ( and this is from her recall, she didn't even need to take notes in the appointment!)
From August 20, 2013: This morning I had my first appointment with the radiology oncologist. He was a very knowledgeable, pleasant person. He said there was a very high probability that there were still cancer cells in the area of the "huge tumor" and the area where they found nine cancerous lymph nodes. He said I had a "extremely aggressive form of breast cancer". So I will need 7 weeks of radiology, 5 days a week.
We talked about how Fibromyalgia would affect my treatment, and the first thing he said was the hardest part of my treatment was behind me. He said it will be a little harder for me than someone without FM, and probably more scaring. He called Fibromyalgia a connective tissue disease akin to Lupus. He said he has treated many people with Lupus and some with Fibromyalgia, and that they did okay.
He has ordered a pet scan and said they would check the spot on my spine during the scan, but he did not think it was cancer, but rather as a result of the kyphoplasty in the vertebra next to it, or from Fibromyalgia. After the pet scan results are in I will have a positioning x-ray, then he needs about a week to prepare for my treatments.
He said I would need 7 weeks of radiation, 5 days a week. That will probably start in about two weeks. That's where we are now. I will keep you posted.
March 12, 2016 -- MUCH has gone on for Alice since the last update I'd added, above. I saw she got involved with a nutrition / supplement organization, as a distributor, and she seemed to have a new lease on life, so to speak.
She was incredibly proud of her son's movie that he directed when it opened in April 2015. It was too bad she couldn't be at the opening in person, I know she was in spirit IF ANYONE can be anywhere in spirit, Alice likely can. It's a movie about Sam Bush, a favorite musician of mine. I felt fewer miles and things keeping us apart with that movie by her son, though I have not spoken with her about it personally. By 2016 it had been winning film festivals, I saw -- the ones in SW Colorado, no less. I wish I'd known and could go, which I couldn't. I'd have been there in spirit maybe, though. I have attended the Durango Film Festival back in 2008.
I felt like the best thing I could do for Alice was to let her have the time online and in her life overall without my adding more 'focus' to it. I was saddened to see a lot of lung issues occur in 2015 and recently I realized I'd not seen any posts from Alice. I always think of her on Fat Tuesday and about Lent, or 'the Lentin season' due to her smashingly great writing about it way back in our formative year at Lumigrate. She'd learned about foods an inflammation and was using the season to process and strengthen her changes with diet. Something I'll ALWAYS appreciate and never forget, or hope not at least.
So today I dropped by her Facebook and saw she'd been admitted to hospital quite a while back. And updates from her son, or from her here and there, but not many. Today I found this, and wanted to provide it here. She was going from ICU to a regular 'floor' bed over 15-20+ days now in hospital. It appeared a close family member had passed while she was in the hospital, meaning she again could not be attending the services of someone extremely close to her.
She was not sharing as often as she used to on Facebook, but she had just posted about family visiting, some from quite a distance. Someone mentioned that the family member had said he'd not be leaving his home because of someone he was looking after. My heart kept sinking, seeing what I was seeing ... this was not looking like someone who was going to be alive much longer. Others who live closeby were bringing old photos and she posted one of of her as a baby, which she was sharing. And then this example of Alice's giving heart:
"Early mornings awake are lonely in the hospital. Then I think of how very blessed I am to have so many who truly care for me. I pray for those who are lonely all of the time. I challenge each of you to reach out to someone who needs a little encouragement, someone who needs to know someone cares. Each one, reach one."
EACH ONE, REACH ONE. I went to message her. My gut told me to simply provide here at Lumigrate, for now, this beautiful status update she put out, send her my thoughts / blessings / prayers and 'take her on a walk with me today' (in thought). I do that quite often, for those who cannot get out and about OR are somehow seeming to me to be in need of what I gather up when doing so. Blessed journey, Amazing Alice. Thank you for every word you've shared that I've received, and for allowing us at Lumigrate to share with you, learn from you, and we will go on from here.
From just after her "Each one, reach one", which was the weekend we went to Daylight Savings Time, Alice wrote this: "This time change is doing me in. The clocks in the hospital have not been changed yet. Yesterday they brought my evening meal so early. I thought this is mid afternoon according to my body clock and looked up to the clock with the old time. It read 3:45. I was so happy that (name removed by Mardy for privacy)_______brought a snack of some raw veggies and hummus last night. The steroids in the chemotherapy mix make me ravenously hungry." I was surprised to see her mentioning chemotherapy, because from what I'd seen about who was coming to visit, the length they'd travel, comments about them leaving dependent family members, I had presumed she had gone to a palliative status and they weren't telling people that.
So I checked back. On Wednesday, her son posted this, my heart sunk and then took my eyes with as I exploded in tears; sorry to see the confirmation of what I was suspecting, as I've stated, above:
"Okay, here's a little more insight into my cryptic prayer request this morning: My mom, Alice, is being sent home from the hospital today, which is great news. However, her doctors have discovered that her cancer has spread too quickly and too far in her right lung. As a result, continuing chemotherapy is no longer practical.
She will be sent home under palliative care. There is no way to estimate her longevity from this point forward. She will continue to receive care for complications that arise from her illness, but the cancer fight is over.
The goal now: enjoy life! To that end, we're planning to spend some time down there on a spring break trip, and we'd like to take Mom to the beach while we're there. ....
Thank you all for your continued prayers. God hears you, and he has been faithful to comfort us during this tough time."
On the 23rd of March, this on her wall: "Good morning all of you lovely people. I have been reading comforting scriptures and would like for you flood me with scriptures of comfort. Send them on. God bless you everyone."
I don't think Alice would have said 'lovely people'. I think someone was possibly writing on the computer for her. I contributed nothing in terms of scriptures, because she knows I'm not Christian and that is not my forte, but I had sent her a gift basket from a fellow Business Incubator classmate (we saw each other every Tuesday evening in 2007 for months on end and her idea she was developing was about Christian gift baskets for people who have had a death -- God's Healing Presents became the business name.
I purchased a basket which she put together custom for Alice and shipped to her in 2012, in addition to a prototype of what I had as products in development for sale via Lumigrate (which didn't come to fruition yet). So Alice is the only person who has ever received a package from me of things I'm wishing were available to all from Lumigrate.
And I don't know if God's Healing Presents continued on after that or not, she had a lot of things happen in about 2013 or 2014. But one of the COOLEST THINGS she included in the 30 items (one for each day) in the basket was a wooden cross which was designed to fit in the palm of a p person's hand and not fall out. So I added a comment and said I'd simply put a cue that perhaps the cross that was part of that basket would be of value at this time more than ever, if she'd perhaps put it aside and forgotten about it.
I went back on Easter morning to see if there's anything new. More comments under mine, none of which are being responded to. Some people were posting to her wall about various things and no responses. But yesterday a scripture had been posted and so I wanted to share it here:
"This is such a familiar verse from Romans 8, but one I embrace.
38 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,
39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.
My God's love is bigger and more powerful than anything else in the entire world. I feel secure in that love."
Some of her FB friends had added scriptures in comments under this, again, without any Like, or further comments from Alice's FB and whomever is operating it at this point.
I'm writing this on Easter morning. And sending my sky kisses Alice's way, and saying a prayer for her and all who love her. Our Moon, which was full recently, is in the sky to the west, and our Sun has just risen to the East, and the birds which have arrived recently after winter's turning to spring are still novel sounds to my ears.
The tractors are in sight in the farmlands nearby, parked this weekend, but last week seeming to do double time -- perhaps because the weekend would be time for family and faith and fun with egg hunts, shopping for new clothes for today, and whatnot. With Alice for me, there were three things I mainly think of with her -- Christian faith, gardening, and cooking / foods. I'm wishing her family a day today which is special, I'm sure it will be bittersweet.
I wanted to sit and feel how many people this morning will be having their communion of energies on this Holy day, and from the bottom of my heart with all gratitude, make this day for me about Alice and her contributions to Lumigrate which began with her Christian faith.
I remember her saying "I don't think I've ever known a person who isn't Christian", and she continued to get to know me and Lumigrate's information. Which is not always the case with people who identify with the Christian religion. "Each one, reach one", I realize, was something she did with me. In her very graceful, lady-like way.
I checked back on her Facebook and she'd posted this, on Easter Sunday, afternoon her/their time: "I am hoping some of my church family will send me pictures of the first day back in the sanctuary for services after the rebuild. I know it will be beautiful. May God bless this service and all to come."
I noticed the read numbers on the blog as I came to add this in -- 4,500. For what it's worth, so far, this is what 'reach' this has had via including it here. I hope it helps others, as Alice has intended and wished.
Monday after Easter, the first thing I saw on Facebook was our spirituality coach, Beth Patterson, reaching out to tell her friends that she is hearing the calling for how to finish her career in work, and it's bringing her home to Colorado and to completion of her certification as a Chaplain, and made reference to hospice work, too. This was where she was employed in Western Colorado, how she made the live life connections which then were to overlap with live life connections who were also on Facebook, thus connecting Beth to me, and I then asking to be our spirituality expert.
I think the information I have from Beth Patterson, and what else is at her blogsite, is some of the best I've found to offer. I know Alice knows of Lumigrate as a resource if she is feeling the need for resources. I know she knows my door is open, and I also know that the paradigm I have offered overall was outside the box of her comfort zone. I'd be going to my comfort zone if I were in her position, and I have presumed that is what she has done for a long time now.
But if you're reading this on Lumigrate and wondering about resources, punch Beth Patterson into the Search bar and see what you find, something might just be 'the right thing' for you right now. With this end of life on Earth for Alice, in her honor today, I have put helping Beth find connections to housing in the Denver area, since I have a number of suggestions and ideas. One might work. Or more.
Tuesday, March 29, 2016: In my Facebook feed mid morning:
"Great News! On Monday I went for a check up with my Oncologist. She was amazed at my improvement.
When I left the hospital to come home to palliative care I had had two of a series of three chemotherapy treatments. I had the choice to stop there or take the one last treatment. I reasoned that if the treatment could help at all I would take it. I had so much improvement after that treatment that it was amazing. My breathing was sooooo much better.
When I went in for a check up everyone was telling me how beautiful I was. I looked like a different person. My doctor grinned and was so pleased. She said because of the dramatic improvement, we will resume treatments next week. One per week for three weeks and then do some scans.
God is in control. Don't every give up on what God can do. Through all of this my faith never waivers, instead it grows stronger.
Thank you to all of you who continue to pray for me, it means more to me than you will ever know.
I send my love to all."
From 2013: I'd written here: Stay tuned, and Alice -- we're all rooting for you, as you know. Prayers. Thoughts. Energy. Suggestions in some cases. Thank you so much for sharing this journey with us. Thank you for what you provided at Lumigrate's Forums when you felt up to having something keeping you occupied, and allowing us to enjoy your talents, brilliance, and wisdom. I think you're at about a year since you were figuring out something was of a concern and seeking out medical advice. It sounds like if the schedule goes as planned, you'll be finishing up around Halloween/before Thanksgiving! I look forward to seeing that be what is on your plate and not this stuff. Amazing the way you're doing, what a testimonial to modern medicine meeting a proactive patient who thinks holistically (body, mind, spirit).
For those who want to read Alice's 'old articles', which are lovely and have had over 5,000 reads all totalled, they can be found at www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigueexhaustion/life-good-alic [1]And she ALSO has contributed many, many helpful comments to keep the discussions going both at Lumigrate.com and at the Facebook pages, from which everyone has benefitted so very much, myself included!
... to turn to a wise friend or consultant, spiritual 'professional' or otherwise. Background; I am an occupational therapist who has specialized in driving rehab. I WILL talk about that, but not right now. I felt that I should address the battle with cancer that so many people are engaged in. I am a 3-time survivor of breast cancer, the last occurrence being almost 10 years ago. In that time I have learned a few things that I would like to share. What triggered this is a lengthy conversation that I had with my 32-year-old niece who is currently undergoing treatment. My older sister did not survive; my younger sister has not been touched. My niece is her daughter.
Cancer is a dreadful disease, but it is not necessarily a death sentence. I believe that attitude plays a huge part in the treatment and recovery process. After the initial shock of the diagnosis, it is imperative to take control of the treatment process and advocate for yourself. I don't know what is the right or wrong treatment; everyone must decide for themselves after thoroughly researching the options. Do not be railroaded into a treatment that you do not believe in. And ALWAYS believe in the end result; wellness.
In the 18 years since my first diagnosis, I have seen remarkable improvements in the treatment options and the treatment delivery. Because of our family history, my niece decided on a prophylactic mastectomy on the non-affected side as well as the one where she was diagnosed. We talked about reconstruction at great length. Her attitude: she said that she was wanting a boob job anyway so she was good with this.
Our discussion today centered on a new drug that she could elect to take which MIGHT help to maintain the elasticity of the skin to make reconstruction more viable. The primary side effect is nausea, for which she could take some of the same anti-nausea meds she took during chemo. She said that her plastic surgeon had already decided to do a LD procedure on her so the elasticity will probably not be an issue. So she asked my opinion about whether to take it or not. Further discussion revealed that it MAY help decrease scarring of the shoulder and lungs as well.
She had already made her decision, but really wanted to validate that decision. Whether I said yes or no does not matter as much as the discussion. It is the information gathering and the making of a decision THAT is RIGHT FOR YOU based on what you learn that is important.
Keep the Rubber Side Down, as I say! Karen
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [4] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Links:
[1] http://www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigueexhaustion/life-good-alic
[2] http://www.lumigrate.com/forum/life-after-cancer-chemo-brain-gone-and-i-can-still-drive
[3] http://www.lumigrate.com/forum/tales-wandering-boob
[4] http://twitter.com/lumigrate
[5] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2418
[6] http://www.lumigrate.com/forum/meet-robin-thomas
[7] http://facebook.com/robinthomas.usana
[8] http://linkedin.com/rpthomas
[9] http://twitter.com/robinthomas1
[10] http://robinthomas.biz
[11] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#top
[12] http://www.lumigrate.com/user/login?destination=node/2000%23comment-form
[13] http://www.lumigrate.com/user/register?destination=node/2000%23comment-form
[14] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2421
[15] http://www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigueexhaustion/it-cant-hurt-o
[16] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2422
[17] http://www.TheTakeChargePatient.com
[18] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2423
[19] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2424
[20] http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116
[21] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2428
[22] http://www.lumigrate.com/forums/integrative-medicine-parts-make-whole/therapy-occupational/functional
[23] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2436
[24] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2439
[25] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2440
[26] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2446
[27] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2461
[28] http://www.facebook.com/MidlifeMouse?ref=nf
[29] http://www.facebook.com/MidlifeMouse
[30] http://www.lumigrate.com/blog/our-amazing-alice-asks-grate-groups-support-re-cancer-and-continue-giving-teacher#comment-2475
[31] http://www.lumigrate.com/forum/energy-crisis-fmscfs-causes-and-cures
[32] http://www.lumigrate.com/forum/baseline-supplements-healthy-adults-wanting-stay-way
Comments
I'm sending out a flowing river of good energy and prayers for you Alice, and with all who are battling cancer. It's so difficult for me to fatham why certain wonderful people must go through this disease! Please reach out to me, if you wish. You can often find me on facebook, and I am here for a listening ear if you need it, or an option support if you want it. May the angels watch out over you (and I include Mardy as one of those angels)
Take care,
Robin
Robin started contributing to Lumigrate in August 2010. "Meet Robin Thomas", a topic in our biographies/vitae forum is at http://www.lumigrate.com/forum/meet-robin-thomas [6] to read all about her journey, which was greatly influenced by the need to help solve her youngest son's significant health challenges. For those who want just the overview here: After working over 22 years in medical research at the University of North Carolina on chronic inflammatory diseases she switched her focus to preventive health in 2004 when she was introduced to USANA Health Sciences. Robin is passionate about helping others improve their health, have more energy, manage their weight, and improve their skin.
I love meeting new friends !
LIKE me on Facebook [7] Connect on LinkedIn [8]
Follow me on Twitter [9] Learn more at my BLOG [10]
"I dream of a world free from pain and suffering. I dream of a world free from disease. The USANA family will be the healthiest family on earth. Share my vision. Love life and live it to its fullest in happiness and health."
-Dr. Myron Wentz, Founder and Chairman, USANA Health Sciences
Alice my darling,
I know your heart, I know your soul. You are love itself.
It's the High Holy Days and I'm putting your name on the "Get well" list (only because I can't spell the Hebrew name). As it's stated in our prayers:
Avinu Malkanu (Our Father Our King) May you be inscribed in the book of life for another year. Amen.
In peace, light and love you Astoundingly Amazing Woman!
Yenta
Yenta Tellabenta is truly a 'creation' for outreach and education with Lumigrate.com through storytelling and reinforcement of key concepts related to body, mind, spirit. Written by a very talented and somewhat mysterious younger wise woman who found her way to Lumigrate the summer of 2009, we hope you enjoy having your own Yenta with us at Lumigrate! Yenta (meaning 'town gossip' or 'connector') has a dedicated Forum at Lumigrate at http://www.lumigrate.com/forums/health-issuesdis-eases/fibro... [15] and can also be found on facebook.
Alice, sending prayers and the best wishes for a very successful surgery and recovery.
A few things to remember when a patient in the hospital:
I'm an author, patient advocate and speaker. My new book, The Take-Charge Patient: How You Can Get The Best Medical Care, was released 5/2012 www.TheTakeChargePatient.com [17] I lecture, write and publish articles on the issues of patient safety, patient advocacy, the collaborative relationship between patients and medical professionals, effective communication strategies to interact with medical professionals and other health/medical related issues. I hope you benefit and enjoy my being part of things at Lumigrate as much as I do! Also, I am a member of: -HHS, Partnership for Patients -The Society of Participatory Medicine -The National Patient Advocate Foundation -National Healthcare Advocacy Consultants
~~Aimee
Aimee Shannon is a licensed social worker who has fibromyalgia along with a collection of other illnesses. Aimee is passionate that those dealing with chronic illnesses need education and support to best manage their illnesses. Along with contributions of writing for Lumigrate in 2009-11, Aimee can be found leading a support group on Facebook, as well as in-person support groups in the Dayton, Ohio region. Please connect if you wish, at http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116 [20]Dearest Alice...........My prayers are with you at this difficult time. God is listening to all of our GRATE prayers for you. As you know, prayers can do wonders, and God is watching over you.
:) Petie....the OTR
Those who read Petie's pieces at Lumigrate.com (found regularly in the forum related to therapies/functional and occupational -- link: http://www.lumigrate.com/forums/integrative-medicine-parts-m... [22]) learn she grew up in California with "Bobby" Redford and has had an interesting life from beginning to today. She graduated from USC in technical illustrating and drafting and was the first female draftsman for The Wall Street Journal in South Brunswick, New Jersey. She returned to USC to become an occupational therapist and enjoyed the 'heyday' of therapy in prestigious programs in California, and was an entrepreneur for many years. She had a daughter then adopted a son, Thomas, who she writes about regularly; they have been each others' greatest teachers, as it turns out he had developmental disabilities. Remarrying in middle age, she and her husband Bob moved to Colorado and now enjoy 'active retirement'. Petie appreciates the opportunities to continue teaching through sharing at Lumigrate and hopes those who read find as much enjoyment in reading as she does in writing.
A little update, Alice received a couple of care packages from Lumigrate. Initially, The Take-Charge Patient, by Martine Ehrenclou (above), which was my top priority to get into her hands so she and her team could be prepared. If you only knew what Alice has gone through -- delays, scheduling problems, dropped balls -- I joked that she needs to keep that book with her and threaten to 'throw the book at' whomever was causing her more problems than having several chronic medical conditions, the most recent of which is cancer which is in an acute state appropriate for surgery, reconstruction, and chemotherapy.
But Alice has maintained a positive attitute, and even agreed to a leadership position in 2013 at her church! "Am I crazy for doing this?" she asked .... "Nope, you're optimistic!" I said in return. And REALISTIC -- look at what Karen, above, wrote on Lumigrate -- she's now officiall 'retired' and it was election time 2010 when she had her third and thankfully most recent episode of finding acute cancer growth symptoms/lump! And she's been out there enjoying camping, working at a BnB on the side with her husband "Old Guy", and they're having a blast! I wish the same for Alice after she gets over this next step. The support from Lumigrate is clearly appreciated.
What you will see an excerpt from Alice this week was in response to the gift which is collectively from Lumigrate. The founder of GodsHealingPresents, Rahna Autrey, was in my business planning/entrepreneureal class at our local Business Incubator, which I'm happy to report has the opoosite success/not ration as the national average for business incubators: 80% succeed. It's been really FUN to be able to 'connect' our two businesses, through Alice, and see that all this work we have done for over a handfull of years now is 'getting somewhere'! I wish Rahna continued good luck with getting the various aspects of taking it 'onward and upward' to the Internet and be able to serve more people than 'word of mouth'.
Alice has, naturally, written a lovely response which I want to share here with you.
Mardy,
Thanks so much for the box of gifts. That is lovely. I decided to open one as soon as I opened the package. I reached in a picked one. Believe it or not, it was a journal. How perfect is that?
You are spoiling me.
The box from Gods Healing Presents is pretty, and the way each gift is wrapped makes a nice presentation. I was impressed, so please be sure to tell Rahna how much I like it. I think the photo frame for the bible verse for each day is a nice added touch of thoughtfulness.
I will be delighted to open a gift each day and have that little surprise to brighten each day. That is a nice concept and a nice gift for people facing something like I am. It will be such a treat to have something to look forward to each day.
Mardy, you are a precious jewel. I cannot thank you enough for your support.
Love ya,
Alice
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [4] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Update on my journey:
On Friday I went to an oncologist for the first time. I really did not know what to expect. The doctor said she really wished the doctors had sent me to her before surgery as I could have had chemotherapy before surgery to shrink the tumor which was huge. (9cm x4.7x 4.9)
The plan now is to have a PET scan, CT scans, heart tests, etc next month. I cannot do it yet because you have to have the scans with your arms up above your head. I do not have that range of motion yet because of all the surgery.
I must be completely healed before I can have chemotherapy. Right now I have an infection which is delaying healing of my tummy incision. My tummy is involved because I had reconstruction surgery at the time of my mastectomy. Muscle, tissue, skin was taken from my tummy to make a new breast.
I will have chemotherapy starting in January. It will be once every three weeks for 4 1/2 months. After that I will have radiation, then anti-hormone therapy.
Because I have to have time to heal and my doctor wanted me to have a good Christmas, so she is planning chemotherapy to begin in January.
Because 9 of 15 lymph nodes tested positive for cancer, I have to have radiation.
The cancer tested ER+, which means estrogen makes it grow. They will have to give me medications to kill the estrogen. This treatment lasts for 5 years.
The doctor said if I will do the above listed treatments my chances of cancer returning drops from 70% to 5%.
My attitude has been good and I have remained positive. I never dreamed I would ever have to face this situation, but you find a way to get through whatever comes your way in this life. I have strong faith and I know that my Heavenly Father will help me through this challenge.
Alice
Alice Franklin was raised on a sandy beach in Point Clear, AL and lived along the Gulf Coast from Texas to Alabama in her youth, graduating from Fairhope High School on Mobile Bay. Prior to becoming disabled due to severe spine problems, she worked her way into management and purchasing positions in industrial manufacturing and art industries. She worked her way into Lumigrate unknowingly by impressively writing at Lent 2010 about utilizing her religious and spiritual beliefs with chronic pain/disease management (she has had fibromyalgia and chronic myofascial pain for decades); it turns out she holds the priesthood office of elder in her church and became active again in this office in May 2010 and has been pastor or copastor in previous churches. We are so very proud to have her words and thoughts gracing our 'pages' of this website and look forward to what the future holds for her.
Alice Bubbeleh,
So I couldn't shlof (sleep) and decided to take a look at the latest on Lumigrate and here you are! Sweetheart, let me tell you, if you wanted a boykh (tummy) tuck that's an modne (odd) way of going about it but to each her own, who am I to say anything? Enough said.
All kidding aside dawlink, I'm stunned by the advances in just a few years and in emes (truth) I'd say between the doctors, your church, your faith, my prayers, the prayers of my fellow congregants at Shul, those on Lumigrate and Facebook and everyone else you've touched you're going to be just fine.
The infection was G-d's way of telling you, you're doing too much and you're not listening, now sit down and firn zikh (behave)! You're so used to doing for others it's about time you bashteyn (allow) someone to do for you. I must admit, a lesson I'm learning now myself. Not easy at my age!
My dear friend, breathe, relax and may you have a complete healing and to this we shall all say... Amen! It's couldn't hurt!
Your
Yenta
Yenta Tellabenta is truly a 'creation' for outreach and education with Lumigrate.com through storytelling and reinforcement of key concepts related to body, mind, spirit. Written by a very talented and somewhat mysterious younger wise woman who found her way to Lumigrate the summer of 2009, we hope you enjoy having your own Yenta with us at Lumigrate! Yenta (meaning 'town gossip' or 'connector') has a dedicated Forum at Lumigrate at http://www.lumigrate.com/forums/health-issuesdis-eases/fibro... [15] and can also be found on facebook.
Yenta,
Thanks. How right you are about me doing too much. When I first came home from surgery, I had lots of company and I would go downstairs to be with them, sitting in the recliner part of the sofa. Since the infection I have been ordered to stay in bed as much as possible. I should have done that when I first came home from surgery, but alas, I did not. So, I have prolonged my recovery. Lesson learned the hard way!
To anyone else who undergoes surgery, REST IN BED, even if you feel good. Allow time for your body to heal. You will reap the rewards.
My husband would like you, Yenta and your advice. He has been doing everything for me and does not want me to get out of bed except when necessary. He is like an old mother hen tending her chicks. This year he is even hosting Thanksgiving for my family!!!! Imagine that. I thought because I was down we would not be able to host this year, but lo and behold, he has stepped up to the plate and has already started cooking.
The truth is, he really needs to be with people this Thanksgiving as he is taking all of this harder than I am. He feels better when other people are around to divert his attention to other things. In a situation like this, we must be mindful of those who love us and what they are going through.
Yenta, your support through all of this is wonderful. Thank you.
Meanwhile, I am still very positive and so thankful for the advances in cancer treatment and my wonderful medical team who is attending to my care.
Alice
Alice Franklin was raised on a sandy beach in Point Clear, AL and lived along the Gulf Coast from Texas to Alabama in her youth, graduating from Fairhope High School on Mobile Bay. Prior to becoming disabled due to severe spine problems, she worked her way into management and purchasing positions in industrial manufacturing and art industries. She worked her way into Lumigrate unknowingly by impressively writing at Lent 2010 about utilizing her religious and spiritual beliefs with chronic pain/disease management (she has had fibromyalgia and chronic myofascial pain for decades); it turns out she holds the priesthood office of elder in her church and became active again in this office in May 2010 and has been pastor or copastor in previous churches. We are so very proud to have her words and thoughts gracing our 'pages' of this website and look forward to what the future holds for her.
My son and daughter in love got me the most amazing gift for Christmas. Knowing that I will be spending hours receiving chemotherapy, they got me a wonderful Kindle to help the time pass faster. Another huge gift, Wayne's book, Midlife Mouse, that will be released in March, is the first book on the list.
Super, major thrill for me. One happy Mom here.
Alice Franklin was raised on a sandy beach in Point Clear, AL and lived along the Gulf Coast from Texas to Alabama in her youth, graduating from Fairhope High School on Mobile Bay. Prior to becoming disabled due to severe spine problems, she worked her way into management and purchasing positions in industrial manufacturing and art industries. She worked her way into Lumigrate unknowingly by impressively writing at Lent 2010 about utilizing her religious and spiritual beliefs with chronic pain/disease management (she has had fibromyalgia and chronic myofascial pain for decades); it turns out she holds the priesthood office of elder in her church and became active again in this office in May 2010 and has been pastor or copastor in previous churches. We are so very proud to have her words and thoughts gracing our 'pages' of this website and look forward to what the future holds for her.
VERY Cool about your e-reader and having your son's book be something you'll read FIRST on it!
NOT cool about what I see in the update from 1/15 in the grey box in the blog post; the 'ongoing saga' or 'progress report' of Alice's progress, whichever term you think is more appropriate. It unfortunately is a 'saga' in my mind because of the difficulties with wound healing. I am so sorry to see this and know that you/Alice are having to endure more than is involved if things go 'ideally'.
To summarize here, she has had difficulties with infection and wound healing, and now is recovering from another revision to the site where the surgeon took tissues to reconstruct the breast. Since Alice knows that with FMS there is an 'energy issue' with the tissues, she says, above, that she's going to not get up and around as she did the last time, and try bedrest this time. I clarified with her privately, and she means that she's getting out of bed and ambulating downstairs 3x/day to eat, but she realized in the past when she was doing laundry and more taxing things, she'd notice the wound respond by slowing down on healing. (Hight marks for 'awareness', Alice!)
In what feels like a whole other lifetime for me, and it was half my lifetime ago now, my husband had an abdominal wound that had infection in it and had to be dressed and allowed to close on it's own, taking two months before he could go on to the next stage of his health care plan. In his case it wasn't to do with cancer, it was to do with hydrocephalus, but it's where I learned to have the priority and respect I have about infections. When I had surgery 6 years ago I boosted my immune system and really worked as hard as I could for the months and year leading up to it, so that I'd hopefully sail through.
And I did, infection-wise, I am happy to say. And in retrospect, that was at a time I hadn't gotten my immune system as boosted up as it is now; I have learned, along with everyone who has Lumigrate as a tool for education. I have personally consulted with the providers I suggest people consider using, like Robin Thomas and ITC Pharmacy, as well as my osteopath, dentist, chiropractor, etc., and will continue to do so -- they are the experts. Sometimes I purchase something, sometimes I don't at that point.
So I thought this was going to possibly spark people's interest, if they have FMS/CFS and have a surgery of some sort, and thought I'd post the link to a topic from long ago on Lumigrate, from Marc Spurlock, MD, our fibromyalgia/fatigue/environmental illness expert MD at Lumigrate about the causes and cures of the "energy crisis" in FM/CFS.
You will see a comment from me under it where I explain why he educates about a SHIN protocol and I work with people on the exercise/activity portion very carefully, recommending qualified PTs and OTs to be involved. I give the overview of what I used to do with my patients when I was working as an OT with them in a clinic with PTs; progressing and transferring them after initating a treatment plan that got them off the ground well.
I would not want to see anyone with FM/CFS after a surgery having to opt for bed rest, as my hope would be that the other things related to S, H, I, N would have been addressed pre-operatively. I think if you read what Dr Spurlock wrote at this link, you'll get an idea of what I mean. ~~ Mardy
www.lumigrate.com/forum/energy-crisis-fmscfs-causes-and-cures [31]
And here is a link that the late, great Gary King started in our "Supplementing what you eat and drink"forum; he announced he was transitioning from cancer treatment to hospice and palliative care just after Alice announced she had been diagnosed with breast cancer. He passed on 12/21/12, and many of our experts, Dr Marc Spurlock and Robin Thomas, included wrote on the thread to express our appreciation and celebrate Gary's contributions to the world of health care. Dr Jacob Teitelbaum registered as a new user and so 2012 ended with him as our last new registered user, which was a nice send-off for 2012 for Lumigrate. Search on "Air Kisses" if you wish to read Yenta's moving tribute to Gary and military veterans from November 2013. Alice has stopped by, amazing as ever, when she was feeling up to it, and added her lovely sentiments.
At the link, below,you'll see Robin Thomas added on a comment to what Gary King kicked off with his article about baseline supplements -- in his/their opinion what everyone typically benefits from taking supplementally if they're coming to them for input about what to purchase, and then Gary's partner at ITC, Allan Jolly, commented as well. I wanted to show people that two different professionals within the same business will have a different opinion, so it's really up to YOU, the consumer, to get a variety of experts you're reading, talking with and 'going to', utilizing on your team to help you. RPhs/pharmacists are excellent resources to 'go to' with questions about specific concerns people have, or to order supplements. ITC has patients in all 50 states and about 3/4 of them have a diagnosis of FM/CFS, so they have a lot of products and expertise to offer, in their case you call not go in the way you've maybe done in the past with your pharmacists!
Robin Thomas has a very solid background in medical research and science on top of life experience with a son with chronic illness, and USANA's products are aimed 'at what everybody needs/can benefit from taking'. For specific needs, she purchases other brands, and again is a wealth of information, and is familiar with ITC's products to usher people in that direction for those additional items she/USANA do not provide if it's over and beyond what the majority of people would be appropriate for.
When so many physicians simply have not yet learned about the burgeoning diet and dietary supplement information, why not simply call upon both of these experts we have selected out to include at Lumigrate, and continue your education about what you opt to be taking, what it would cost, etc. Naturally, as with all pharmacists, as you are familiar, they are required to do patient education as part of their providing of products, and cannot charge for the consultation service for purchasing a product, as I understand it.
That time basically is simply part of their overhead, and if you have ever been in business, it basically is a cost of marketing. Don't feel you are 'imposing' or asking a favor -- this is the business they're in, and they sincerely want to help people be well through their efforts in the health field. Years back, Allan was a hospital pharmacist in a cancer hospital when he compounded a medication for a woman with cancer, and that 'turned him on', engaged him related to compounding which led to him joining forces with Gary and then their moving to Colorado because of the differences in states for doing business. We're simply a younger state and more lenient here in Colorado, if you ask me. (You can Search on Lumigrate podcast ITC if you want to listen to them, there are two from 2011.)
So that is my suggestion to YOU, our guests/readers/users and other experts and professionals who are reading this: my ideas and selected expert providers of how to obtain quality advise and products, which have good value for your money, whether you have FM/CFS/illness or are chronically well and wanting to stay that way! Or perhaps it gives you ideas of similar providers YOU know of, different than who is at Lumigrate -- just please, get the expertise on your team to consult with you about nutritional supplementation (most communities have compounding pharmacists, for instance, or you might know someone you trust who distributes a MLM supplement, but I've looked into LOTS of brands to have represented at Lumigrate: very few are in the top of the heap of choices of manufacturers, and you want to look into that.
There are articles about how to do that in our Supplementing what you eat and drink forum: I simply have whittled it down for you since it is a full time job to learn all a person would need to know about their supplements, and we aim to streamline things here at Lumigrate. I know I end 'lengthy' but it's a condensation of the whole so you're not going away from here having to put the pieces together on your own, that's not so good! The other experts make up for it though, they're good and 'succinct'! www.lumigrate.com/forum/baseline-supplements-healthy-adults-wanting-stay-way [32]
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [4] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!