(from 2013 onwards.) 7th Jan 2013
"Grief is Not"
by Jane Yolen
Grief is not getting any easier
But becoming more ordinary,
As if I've always carried this stone in my breast,
Calling it a heart.
Grief is not going away,
Just not arriving in tsunami force.
Rather it's a steady high tide,
Which makes me wonder about the rocks below.
Grief is not a one time thing,
Not several days, weeks, months,
But is a visitor who has moved in for good,
And occasionally helps out around the house.
Grief is welcome in my home as it reminds me of how much I have lost, And how blessed I was to have so much to lose.
15th Jan, 2013. Well, I got guts up enough to get hotel reservations for the symposium!! Hopefully I can stay out of the hospital. I'm putting off doing anything about the bone tumor. I just want to do some things before I put myself thru another surgery ordeal. The UTI is getting worse, but still waiting for the fever to go up.
23rd Jan. 2013,I've got a room and my daughter and kids are going to join us for a few days. I just got a new appt with an Infectious Disease doctor, but not till Feb.20th. The urologist has turned me over to them. I'm fighting the UTI as usual. I'm afraid I won't get to go. I also want to go to ADAO Conference. Just got to plan!!! Can't give in to all these medical problems. So have you all signed up?. I'm waiting till I see what the bone doc says about this tumor, which is the 31st of Jan. I've been having problems for three days with the internet and finally today, they told me that THEY were having problems with the lines. I sure wasted a lot of time on the phone trying to fix my PC. But I'm back on for awhile anyway. LOL
1st Feb 2013. This morning I'm dealing with a screaming cockatoo that bit my finger.
I ended up in ER for 4 hours and then went to a plastic surgeon yesterday. GOOD NEWS!! Had c-scan for the Giant Cell Bone Tumor yesterday. It has not grown and eaten away any more of the bone. So onward to the Symposium and LIFE!!
Friday, 3rd Feb 2013. As you can see, I'm way behind on reading my mail. Thanks for all the cards, calls, and messages. I really didn't want to write until my attitude changed. It's much better NOW. Got a chuckle out of a lot of the mail. Keep it coming. I'm doing rehab 3 times a week. Using walker a real pain !!!!! not suppose to bend over, so I have all these little pick it up thingys" around the house. This toilet seat thingy is a real joy too, especially with bags to empty. ok, just had to throw that one in. Really, many are suffering much more than I am and this is easier than CHEMO. Trying to juggle many appointments with the medical people.
3rd Feb 2013 February 4th is my birthday. I had plans but they have all changed. but I'm use to adapting...LOL...But I have definitely earned the right to CELEBRATE As you know, I have been researching bone tumor. Older" people like me are not suppose to get it.
9th Feb 2013.I am just now getting back on line and am starting to catch up on my mail. Each day, I wonder if I'm pushing too hard to make it to the symposium. I've felt bad for a week, upchucking every day. Today is the first day I have felt like doing anything. It's hard to keep pushing on, I know feeling like a "noodle" is so discouraging. Sometimes we have to give in a "little" and accept this and have faith that we will return to some type of "normal" when the treatment is over.
15th Feb, 2013 It's hard to lose an animal friend. We keep replacing ours. Except for Maxwell (the cockatoo),He can live to be 80-100 years old. He is going to have to replace us. Of course, I would NEVER get a bird again. my thumb will never be the same. I'm learning to use only 4 fingers. I wonder how people do it with no hands. By the way Max is in the garage!!!!!!!!!!!!!!! Jill's doing well. She had her tubes changed, and they came home to a ceiling that fell in their home. So they've had a lot going on. But she's doing ok. We are home. PC problems finally fixed. A leak in attic. affected two closets and a ceiling fell in. Dealing with all that ruined furniture. Mould, didn't find the bedroom ceiling until about 2 weeks after the leak. Bud is gluing and refinishing the bed and dresser
8th Apr 2013. I have too much to talk about. As you know, I haven't been able to travel due to this Urinary Tract Infection (UTI) that I will always have to deal with because of the nephrostomy tubes. I met with a "new" Infectious Disease doctor, I think in February. She came up with the idea for me to start taking an antibiotic 3 days before I left on the trip to Las Vegas and continue taking them while I was there, but to stop when I came home. This is so I won't become immune to the anti-biotic. The new doc is because the other doc Urologist) gave up on me. MARF was in Vegas, so off we go. Now you have to remember we are on standby. Now it is spring break, flight looks good and it was öff I go. Met new people.'
Eerie feeling of not seeing many survivors. That brought some sad thoughts and reality struck. But there was a 10 year survivor, 5 years, 3 years 2 yrs. I enjoyed hearing about the BAP1 gene. I was involved in that study and also some others in this group
10th April 2013. Was able to meet up with some old and some new friends. The speakers were only given a certain time to speak and all moved along well. We headed out Sunday to catch our plane. Back home and dealt with the leaking pipe and fallen ceiling. Still working on getting all that put back together. House painters have been here all week. I've been doing lots of weed pulling and planting flowers. So I will fill you in on me. I'm feeling really good. Not on antibiotics at the moment. Need to schedule a tube change. But I have stayed out of the hospital for 4 months....Feels good. Next month will be all the tests for follow up for the Meso. 17 years! Wow I'm now watching TV today. Just going to enjoy the day!!
22nd May, 2013. Hi, Everyone! If you, like me, have wondered about Jill's absence from the List Server, wonder no more. She called this morning with a request that I pass along some why's and wherefore's that have been keeping her occupied. The first thing that she wanted everyone to know is that lightning struck her house and fried a part of the modem of her computer that is irreplaceable. It also fried her phones and everything in the "bundle" she and Bud had recently purchased. They are working on buying a new computer to replace the old one, but she lost everything on the old computer. And she still has only her cell phone as contact with the outside world. The second thing that has been keeping her tied up is that she got the results of her PET scan back and it seems that while the meso in her chest is still slow-growing, she is faced with "Giant Cell" in her back (in the sacro-iliac region) and doctors have suggested that they need to operate in order to scrape out the Giant Cell stuff (which sometimes is and sometimes is not malignant) but that, if it is, they plan to remove her pelvis which they believe is involved.
Naturally, this news is playing with her mind. As much as she's been through Jill could still walk and get around and she doesn't want, she said, to give up things like sitting on her patio watching the shore birds and enjoying the sun. The thing is, I've seen Jill in many a tight spot over the years and have seen Something Greater than Her watching out for Jill. Maybe that Something Greater is STILL watching out and the pelvis will not have to be removed. The options can change of themselves. But even if the worst happens and the pelvis needs to come out, I SWEAR we will all witness Jill finding some upside in all of the stuff. It's like my mother used to say: "Some people can fall into a pile of shit and come up with a gold coin in their hand." Jill is, and always has been, one of those people! If you say prayers for people you care about and you are reading this, you can say a prayer or prayers for Jill. Meanwhile, she may have to go through the W.O.S.(Wall of Shit) alone an experience which we all face at moments in our lives. I told her to hold her nose and blast her way on through the WOS. (Meanwhile, I'm going to pray she goes all the way through it and doesn't change her mind half-way though.
(We can all imagine what THAT is like!) Jill so occupied that she doesn't even have time to let the pains in her sacro-iliac take her over. (She told me I'm a pain in the butt when I pointed that out, lol.) All in all, I would say that Jill has her hands full at the moment. Her voice is lively, though, and so is she. There is something of the cork in Jill's makeup. She always manages to rise to every occasion. Even when her world floods with things that would pull ordinary people down, there is Jill bobbing along on top of the water, thinking of twenty other things than her own troubles. God bless Jill and all the other people who are corks! (Lots of Warriors I have known have cork in them,) Bec.
30th May 2013. Wow!! Lightening struck in our back yard. Took out TV receivers, telephones and PC. Tried to fix it, but have ended up with a new PC. Just got it hooked up. Was able to get to yahoo, so thought I better write now. Don't know when I will find it again. And have Windows 8. It is a challenge.
Had my PET scan. Doc not too concerned about the MESO, but very concerned about the bone tumor. It has increased in size a lot since last year. The surgeon called and we had the same discussion. I am going to wait till all the kids are gone and then have the surgery. They still do not know what it is, but think it is cancer and then I question whether I could stand the chemo. I do not want to have part of my pelvis and sacrum removed. Well who would?? Right now, I'm feeling pretty good, doing a lot of cooking and scooting around on my butt doing gardening. OH!! have any of you tried that new "snake" hose. I love it. Had one and it broke, but got two more and they are sooo easy for me to water with. I haven't read any of your messages, because I have a granddaughter who keeps me busy and I need some quite time to read my mail. I hope all are doing well and enjoying this great weather. Tomorrow Aug 8th, 2013, I have a CAT scan, Blood work, and a doctors appt with the orthopaedic surgeon. Will find out how much this bone tumor has grown in the past 3 months. They are wanting a decision about the surgery. Dang!! Just can't embrace this. Since they only know it is a Giant Cell Tumor and two biopsies have not let them know for sure if it is or not malignant, I'm praying for it to be benign. I haven't felt it for a year, but now I know it is there. Terrible operation and if it is cancer, another terrible operation. They feel the tumor is from having radiation treatments in 1973!!! Well, at least it saved my life and I was able to see my kids grow up and now seeing my grandchildren grow up. But I'm wanting to see some great grandchildren !!! Well, I hope none of the grandkids rush into this.
8th August, Quick note!!! Yahoo won't let me type!! Just came from doc. He had an emergency in the family (death) and wasn't there. Talked with the PA and looked at x-ray. It had not been read yet. They forgot to schedule a c-scan. so tomorrow at 8, I go back again.
Doc will call me next week to discuss plans.
9th August 1913 I'm going to be eating a lot of cookies today. The doctor's visit yesterday was a waste, since the surgeon had a family emergency. The PA talked to me about the x-ray and now I have to be back at 8 this morning for a c-scan. Surgeon will call me next week to discuss what I am going to do. I'm getting to old for all this crap in my life!! You' all all eat some cookies for me today!!
13th August. My doctor called. My options are a needle biopsy, open biopsy or surgery to remove tumor. I still do not know if it is malignant. They going to "present" it to other doctors on Wed. It does hurt now, so something is growing in the "hole" in the bone. Some type of tissue. That's all I know.
Sunday, 25th August 2013
Stressing, researching, stressing some more, researching some more. C-scan, doctor's visit, Doctor called, My doctor is meeting with other doctors, then going to meet with the tumor board. Doctor call on Wed. On Tuesday morning, I had decided to have this tumor removed. Because I am now feeling it all the time. I couldn't get it off my mind. As I had told you before, I now have a Giant Cell Bone tumor.(GCT) Two biopsies could not reveal if it is malignant or not. Four pathologists can not agree. Options were, another biopsy or surgery to remove it. For over a year, I have had c-scans and PET scans, showing this is " active". If it is malignant, I will have to have another surgery to remove part of my pelvis and sacrum and that will leave me an invalid. More research, more stressing. They said with the first operation that they could glue me back together. NOW...they are saying 'NO'. The consensus of opinion is I should 'do nothing'. We are out of options." Now orthopedics have talked with a sarcoma doctor that deals with the GCT. I have an appointment tomorrow. But NOT with the doctor he wanted me to see. I'm going to see if I can change!! I'll call early in the morning. More research into a drug that I need to learn to spell!!! Denosumab. After a long conversation with the ortho, he had been reading my records and discovered I had been on this drug, as a matter of fact I'm on it now!! For Osteopalacia. It is also called Prolia. But the dose for the GCT is twelve times as much a month. It has been in a trial but FDA approved it in June 2013 for GCT. I'm getting a lot of conflicting messages in a forum I joined. Will know more after talking with the sarcoma doctor. But the ortho wants me to have a face to face talk with them because "you look better in person than you do on paper". Being seventy-two, and having had three other cancers and still having Mesothelioma, ostomy, bi-lateral nephrostomies, I can't have anymore radiation and probably no one would give me chemo (because of my kidneys), and peripheral neuropathy which they say was probably caused from massive doses of radiation in 1973. So the Beat Goes On The Great Physician has me in his hand!
Wednesday, 28th August. I feel like I'm reliving the Meso DX. Trying to find information on the net. Trying to get into forums and FB for GCT. Very few people in the groups. Different interpretation to what the doctors are telling them. With Bud and I both in the room with the doctor, we heard different things. feel like I'm reliving the Meso DX. Trying to find information on the net. Trying to get into forums and FB for GCT. I did see a sarcoma doctor on Monday. It was not the one that the orthopedic wanted me to see. But....I went...I had a lot of questions after reading different comments in a group and another one. The nurse was not informed at all...She asked a lot of questions and reported back to the doctor, before the doctor came in. The nurse had to come back and ask me a couple of other questions. She did not feel my nephrostomy tubes and the doctor had her check. The nurse did not even know there was a trial and it had been approved in June for GCT. I am disappointed that I did not get the doctor that was recommend to me. They call the drug Xgena. I will start on Sept. 9th after getting my teeth checked out. The doctor needs to check out the dosage, because I have been on Prolia. May not have to take the massive dose at first. Will take a combination of calcium and Vit. D, also Here I go again!!! Hopefully, the drug will shrink the tumor and rebuild bone!!They still do not know for sure what they are dealing with!! But feel the surgery is to severe!!
10th Sep 2013, I began my first dose of Xgena. If this is ONLY a Giant Cell tumor, the drug may work, but as the doctors keep saying, they are not sure that it isn't also another cancer Once a week for a month and then, once a month. As Bud and I were riding on the "shuttle" at M.D. Anderson, I was thinking... I'm going to have to turn this adventure into my Safari!" Of Course, it isn't Africa, but visualization has pulled me thru many adventures. As we were riding from one location to another in our jeep, the driver was stopping a couple of times and announcing our location. This gave us a chance to really spot the animals. As we passed the animals in their very different colors, some were walking slowly and some very fast..some with the long necks of giraffes, black and white..I think they will be zebras. Then those blue scrubs...hmmm, not sure what animals are here Some with blue fur or feathers But I will get it figured out and have a name for all of them. So here I go on my Safari!! So join me on my trip!!! And pray for a successful outcome on this Safari!! The strangest thing....most of the animals had their heads down and seemed to be occupied with something and didn't even notice us driving by What could they have been looking at??
30th October 2013, I have been on a couple more safaris through MD Anderson Cancer Center. A little tired from my trips. I did get to see the voodoo doctor and got shots for my disease. Not very many tribal leaders at this new village. I did see lots of African Blue Gilled Ciclids. Also a couple of Snuffeupaus, Filchers and Upstarts, and a few Grin Suckers. Next month I'm due for a lot of tests and will see the witch doctor and find out if this medicine, the voodoo doctor is giving me, has had any effect on the bone tumor. Monday I'm going on another Safari, not sure what village it will be. Waiting to hear which voodoo doctor, the witch doctor wants me to see.
October 2013. William Watson Hotel. Quaint, but rooms were really "rustic". Lots of hunters there for a youth deer hunt!! The kitchen was fully equipped. The large coffee pot had a sign on it. Would the first person up in the morning plug in the coffee pot." They never lock the doors and we arrived around five in the evening and our keys were on the counter. No one in site.
Had a great visit with my friends and Bud's 55th Class reunion and my family. Of course it wasn't snowing when we were there. THANK HEAVENS!!!
1st Dec 2013. I'm headed for another hospital tomorrow. It will be in a different location. I did meet with a different doc to get my shot. Also saw two doctors and got the result of my tests. The x-ray of the bone tumor looked stable, but the PET scan shows a lot of activity going on. But I'm to continue on for 6 months and then see if we are having any response to the new medicine.
27th January2014. I'm at the hospital to check my blood. Hope to get my "cure" fix!! Wednesday and get results on Thursday. No air getting thru one lung and very little in the other one.
Feb 7th Just getting my tubes exchanged. Just part of living.
Feb 21st 2014. I was having some difficulty with my knee, so it was arranged for me to see the CAT doctor and have it checked out. Cannot find the problem, but they noticed I was having some blood problems. So they injected me with a bag of nice red blood!! That gave me some energy to get thru the next few days. But I had to see the doctor and she took some more blood from me and sent me to another doctor. Yesterday, I saw that doctor first. The plan is for me to receive Iron injections 3 days a week at another hospital. Each injection takes around 3 hours, so maybe I will take my laptop, or just nap thru it. Hoping to get a lot of energy from this.
Have couple more plans regarding the increasing numbness in my legs and loss of balance. Unfortunately, Bud will have to drive me because my legs are not cooperating well enough to drive in a lot of traffic. These two places are in Houston. One is a great rehab place and the other is for hyperbaric oxygen. I was not able to get the HBO some years ago, due to only having one lung to breathe and it is possible to have the lung collapse during these procedures, BUT it could help repair some of the damage to the legs that the radiation has caused. I could discuss a lot more on this subject, but it gets pretty technical and you all do not need to tax your brains and neither do I. Whoops, almost forgot, I am scheduled for another shot of Xgeva!
On Monday! Received sad news about my cousin Kenny, whose funeral is today. Kenny was a tall, lanky Texas. He was always happy and funny. His dad was too. Always had a joke. I sat up on the side of my bed the morning after I heard of his death. I was all hooked up to my TPN and it is pretty annoying to have to deal with 4 lines coming from your body every morning. But do not complain Jil. Thank you God for all these tubes, they have kept me alive. Kenny developed pneumonia. He had been hooked to a breathing tube to help him. My bag of Nutrients was on my rollator and I stood up to go to the bathroom. Thank you God, that I have legs to stand on. Because Kenny had one of his amputated a few years ago.
When I would call him, he would make jokes and especially, he liked all those cute nurses. Kenny was 4 years older than me. He still went for coffee every morning and drove his car. As I struggled with all the bags, to the bathroom…I had to give thanks again for being able to walk on two legs and have the strength to do this. I thought, how did he do it? I do not have the details on what happened to him, but I do know that he had pneumonia, then rehab, because of the weakness. Why wouldn't he, after being in bed so long. Then this happened again and more rehab and I think it happened 3 times. Finally, they were going to start removing the vent tube, but they were not able to do that. The family made a decision and Kenny went to be with his and my Lord. I only remember the jovial, happy, laughing Kenny
Feb 24th 2014. Lots of walking. I passed several people lying on beds. They were hooked up to all kinds of lines. I am getting my dose now they moved me to a room close to the nurses station in case of allergies too medication
March 29 2014.What a month!! April has to be better. Two of those weeks Bud was sick and now I am into my second week of it. He was bad enough to go to the doctor. He was given a lot of medicine, x-ray, c-scan and an appointment with the lung doc. Now he is scheduled for PET scan Wed. and will get results on Thurs. No air getting thru one lung and very little in the other one.
March 31st 2014 Back for my monthly tube change. A beautiful day. Later back to Clear Lake to get my line sutured again. Lost a couple of stitches. Going to be in lala land for most of the day. That Versa does me in.
15th April. My stress limit is about to blow out my brain. Saw 3 on doctors on Tues and see 3 more on Friday. Trying to take a trip to Illinois to see a great niece graduate this weekend. Then another trip to Illinois on the 28th to see my grandson graduate from 8th grade. This is an amazing article and will read later. Having a bone tumor that they believe is not cancer, but is going to take my life. Just how much can a person take??
May 20th After a great weekend in Illinois, the drug is not working. More scans tomorrow. 3rd biopsy Thursday. Still do not know what they are treating.
May 21st. I saw two doctors. Tomorrow another doctor is going to use some big needles to stick inside me. I wish they could give me some new bones. I am waiting for a big Cat to arrive so it can scan me . All prayers accepted.
June 6th. I heard you call last night. I was in bed and did not feel like talking. Not being able to walk well, wears me out and I am in bed usually by 7:30, because I have to get hooked up to my bag of food. The best time to call me is in the mornings, but I have been having to go to doctor appointments. and get many procedures done. Then I am either not home or I am exhausted. My granddaughter just came to help me. Lots of pain trying to sleep with the bone tumor. Do not have results back yet on the 3rd biopsy.
30th June. Bud and I have had our fill of doctors this week. Every day was something, even Saturday. Bud is getting his teeth fixed and new hearing aids. Ha-ha Now he will have NO excuse that he does not hear me. Tomorrow we have to be at MD Anderson Hospital at 5:30 to check in for my 4th biopsy. It did not go well last time they cut me open so they want me to stay a couple of days. The pain was horrific. Thank God for Bud who is always there for me.
June 16th Well we are getting another MR I of the neck. I have to be sedated due to too much pain when lying on my back. My needle biopsy still was not good enough so they want to do a 4th open biopsy. They think I have ostoeosarcoma. Chemo is not working for the Giant Cell Tumor
June 24th. 6 appointments today. I will have my 4th biopsy Mon. The doctors said they only have one patient like me once a year. They cannot get this tumor diagnosed. But it still makes me Humpty Dumpty and they cannot put me back together again. Prayers are needed.
June 28th. Early morning again. Having another cat scan. They just cannot figure this tumor out. Monday be praying for that .
Update on Jill Vaughn, talked to dad, mom is still in ICU. As most of you know she has had the problems with her heart, and fluid build up. Well, dad remembered that, the last time she had problems breathing it was cause if to much fluids. Do not know if it is in her chart but should be. So finally the doctor let her off some of the fluids, and is going see how she does for a few hours. Praying this is what is happening, and not another med overdose. Thank you all for your prayers!!
July 5th. So I talked to dad. We are asking for prayers again. Mom is back in ICU with pneumonia. She is unable to get the CO2 out of her body, and has breathing problems.
Jill Vaughn this was in ICU...hospital 12 days...ICU twice...This mask was horrible!!!
I was wearing this when I came to and the doctor was asking if this did not work would I choose to have the tube down my throat. Dang, lost the name of that. You all know what I mean. I said "am I dying"????!!!." What a way to wake up !!!. I thought I was going on life support !! I need to stay out of hospitals. Something always goes wrong.
July 8th. Been in ICU twice. Finally in a room. Huge!! On the 19th floor . They are not sure what went wrong. Treating for pneumonia. Have not got the biopsy results. Still looking at the sample. — at MD Anderson Cancer Center - Department of Leukemia.
20th July 2014. Spent 8 days in hospital. ICU, TWICE. l am still trying to recover. Running fevers. weak, Not on pc. Bad news. I have Pleomorphonic Sarcoma. It is arising in the bone tumor. No good choices for treatment. This One will probably get me. I am sick of this cancer shit. Trying to recover from 12 days in hospital. In ICU twice. Infections and pneumonia from having the biopsy. Still running fevers, on Oxygen, just dragging. They did finally diagnose the tumor that is arising in the Giant Cell Bone tumor. Pleomorphonic Sarcoma.
July 29th. After spending 12 days in the hospital I am back again in ER.. I have been here since 11 this morning and it is now 7.20pm I am waiting for a room upstairs, have a blood infection..going to pull out my lines .
3rd August. I am still in the hospital. Bud just set up my PC. Not too easy to use. Do not know when I will leave here, but I am still running 100+ fever
5th August. I cannot reach the phone here. And lots of people coming and going. Would be hard to talk on phone. Too many interruptions. I had to make a call earlier and we had so many interruptions. I want to write what is going on with me, but I just do not feel well enough to do it. And this is not even the cancer!!
August 8th. Got out of hospital last night . Now I am at the satellite. Need to get iv antibiotics. Plus 2 more by mouth. Still running 100 plus fevers . They say that is low grade! !! I asked them how they would feel if it was every day and they had to go to work. They were probably glad to see me go.
August 13. Still in the hospital zapping with many antibiotics. Feeling better today.
August 19th. I have just spent almost a month in the hospital with Bud by my side. I thought I would write to you all, but I just do not have the energy. I have not even begun my treatment for this newest cancer diagnosis. I am using morphine, so my mind is not too clear. Pray for me to get this pain under control.
August 21st. Jill is back in the hospital, do not know details yet... she is very sick. Update on Jill, she is doing a little better. She was having some real bad pain, no infection!! They tried some new pain meds, upped her neuropathy meds, hopefully they are able to get her pain under control.
Aug 22nd. Prayers needed for Jill, she is back in the hospital. Do not know details yet. She said she was very sick.
Aug.24th. Update on Jill, she is doing a little better. She was having some real bad pain, no infection!!. But they tried some new pain meds and upped her neuropathy meds. I am praying this works and
hopefully they are able to get her pain under control. Thank you for all the prayers, they are working!!
Aug 25th. Update on Jill. She said Thank you for all the prayers!!!. She is not hurting as bad, nausea has slowed down, her temp is back to normal. Seems that the new pain medicine is working okay. Hoping she gets to go home tomorrow, and so far no infection. Other than that, I woke her up when I called but it was great talking to her,
she sounded a little groggy but. I believe it has to do with the new pain meds. Thankfully, it's not an overdose groggy, just a relief from pain and sleeping better. Thank you all for all the prayers!!
Sept 14th. Two months at MDA Hospital. Just transferred to Long Term Care Hospital. I am struggling with pain, pneumonia. Have been diagnosed with sarcoma.
Oct 28th. Please pray for Jill. She is home now but in a lot of pain. Thank you in advance. From Jill's daughter Tish.
Nov 3rd. Jill is back in ICU. They don't know for sure what is the cause, but she's having difficulty with her breathing.
It could be anything at this time.
Nov 5th. Talked to dad this am. He can't see mom until 10am. She's still the same... as soon as I hear something I will post. Mom is home, rough ride, and being brought upstairs has really been hard on her. She is resting comfortably,
and so far all is calm. The hospice nurses, are just awesome!! So happy we got good ones. Mom knows we're here, she smiled when I told her Britni and I wouldn't kill each other. She was glad to see her kitty Jasmine. She heard Maxwell screaming (as usual),and seems to be a lot more comfortable here than the hospital. I've told her about all your posts and prayers, so she knows you are all keeping her in your prayers!! Thank-you all again!!
Unless there are any changes, I won't post until the morning. Dad is doing a lot better too. Best decision for both of them was to have her home. He's a little more relaxed. So night all
Nov 7th. Got to see mom. We are bringing her home this afternoon, with hospice. Britni and I are in the process of getting everything moved so we can set her bed up looking out at the bay.
Please pray, that we are able to keep her as comfortable as possible. Please no calls, for a few hours as we will be busy. Told mom about all the prayer's, and well wishes from family and friends. After she's home and settled in, I will update you all some more!!
Nov 7th. Mom is home, after rough ride, and being brought upstairs has really been hard on her. She is resting comfortably, and so far all is calm. The hospice nurses, are just awesome!! So happy we got good ones. Mom knows we're here, she smiled when I told her Britni, and I wouldn't kill each other. She was glad to see her kitty Jasmine, she heard Maxwell screaming (as usual), and seems to be a lot more comfortable here then the hospital.
I've told her about all your posts and prayers, so she knows you are keeping her in your prayers!! Thank-you again!! Unless there are any changes, I won't post until the morning. Dad is doing a lot better too, best decision for both of them to have her home. He's a little more relaxed.
Nov 8th. Good morning everyone. Well mom had a rough night, but is sleeping comfortably now. Our day nurse is here, and she's very nice. So for now that's all that's going on. I'll update later this afternoon, again Thank you for all the prayers, memories, and stories of this beautiful warrior, this means a lot to all of us!!
Mom had a decent night, unfortunately she is having involuntary muscle spasms. She's still fighting though... She had a sponge bath, and her hair washed yesterday, and you could tell she felt better afterwards. Today, we will increase some of her meds, as the agitation has elevated some, and hoping we can continue to keep her comfortable. Thank you all for sharing her pictures, stories of how she came into your lives, and the inspiration she has been in to you all. I have been telling her, and reading to her what you have posted.
It really means a lot to all of us. Please continue to pray for her comfort. Again thank you all!! Much luv and prayers for you all and your families
8th Nov. 2014. Our Beautiful Warrior Angel, received her wings this morning. No more fighting, no more pain,
only open skies to watch over every one of us.
May you REST IN PEACE, forever in my heart, memory, and mind. I love you mommy!!!
Nov 8th. One of our longest survivors of both pleural and peritoneal mesothelioma (18 years last May) passed away today. Jill Vaughn was an amazing person and an example of great courage in her battle not just against the mesothelioma but also against the other cancers that she had. It was one of these that claimed Jill's life. So very many people were touched by Jill's courage in the way she chose to inform people about the dangers of asbestos
instead of feeling sorry for her lot in life.
Jill was a warrior who has earned her wings in such a way to make all those who knew and loved her so very grateful that she came into our lives. And even though we never met in person, thank you Jill for every precious moment we shared.
Love from Deidre
The list letters for jill to go in her story.
The following pieces are from those people over the years that have written into the Acor Listserver. I have not put them in any particular date order.
9th Nov. Drop a pebble in the water,
And its ripples reach out far;
And the sunbeams dancing on them
May reflect them to a star.
Give a smile to someone passing,
Thereby making his morning glad;
It may greet you in the evening
When your own heart may be sad.
Do a deed of simple kindness;
Though its end you may not see,
It may reach, like widening ripples,
Down a long eternity.
I think this sort of describes Jill and what she did for a lot of people. She was always dropping pebbles and the ripples reached out far. Our beautiful meso warrior's spirit will live on in everyone whose lives she touched.
I can just see you sitting up above looking down on all of us and thinking of some way that you can still tell us all we need to know.
I know I'm not the only one from our list that will miss you dearly. You must be free of pain now, but I for one (and many more ) will miss you so very much. It was not our wish to keep you here while suffering the pain this cancer has put you through,
but we still did not want to let go of you. Who am I going to send my comic books to now. I used to love making them up for you just to hear you laugh.
Like June Breit you made such an impression on me and I will hold you in my heart for as long as I live.
Rest easy Jill, we will remember you.
Love you Jill, from Deidre
10th Nov. I am most sorry to hear about Jill's passing. She was always an inspiration to me as I was going thru my health issues. May she finally rest in peace..Craig Ketchum
10th Nov. Lenny Goldberg. Rest in peace, dear Jill. I hope we will meet in Heaven where there are no tears or pain. May God bless you and comfort your family and loved ones.
11th Nov. I don't know where to start. I don't know what to think, let alone what to say. The news of Jill's passing is like a physical blow. It has been as if she stood in the gap and kept the meso boogy man away. For me, it has been in my heart and in my head that as long as Jill was here, then I would be able to stay, too. I am suddenly fearful again.
I am suddenly feeling emotions that I had not felt since I went on a search to find others with this disease and Jill was one of the first to answer. James from Oz, Al, June...so many on my journey...now Jill. And I'm still here. I don't know why. Jill once said don't ask why, just enjoy the fact. I didn't know I could miss someone so physically whom I had never met in person. I loved them all, but somehow Jill was the one I really felt. I think it may be because she took so much time to try to encourage and comfort everyone else as she herself fought so hard to overcome. She makes Texas women proud. I am proud to say that I was able to know her. Friday night, before Jill left us, my husband and I were out sitting by the creek listening to the wildlife. We were talking when that huge fireball lit up the sky that so many here in Texas saw and reported. It was breathtaking so see. Within hours I heard about Jill and have come to believe that was the stars came for the fallen Jillypoo. Her signature piece that she recited at the news of each and every loss. The songbird known as Jill has fallen. The stars honored her and sent an escort for her. Now her star has winked into the bright light with the rest of them.
Jill, on this Veterans Day, I honor you along with all the warriors from every battle ever fought. You fought long and hard and courageously. You are loved. You will be remembered. You will be missed. You ARE missed. My prayers are for your family that they will find some of the strength you had to cope with their loss of your physical presence. You have left a big pair of shoes that will not soon be filled by anyone else. The consolation for us is that we will see you and hear you once again at the time of our calling. Peace, Jillypoo, and thank you. Susan Canon, TX
11th Nov. Our beautiful warrior angel Jill received her wings and will be watching over us all. Many people will walk in and out of your life, but only true friends will leave footprints in your heart. Jill left footprints in many hearts. You will always hold a place deep in my heart Jill. Love you forever, Deidre
11th Nov. Hello, Everyone, This afternoon, I spoke to a woman in a flower shop in Jill's hometown because I wanted to send something special in her memory to her family as I can't really go to Kemah to be part of the service
they are going to have for her on her patio overlooking the Galveston Bay.
The view there from the patio has been part of Jill's happier moments all through the years, as she jet-skied and sunbathed and just admired the grace of the seagulls who picked up her spirits when she looked out over the water. I wanted to be part of picking up the spirits, too, of Jill (who is probably looking over what's going on in Kemah and elsewhere) and also Bud's and Jill's daughters' spirits, but I couldn't send her a bunch of seagulls, so I asked the florist lady what she had that was "colorful" (I was hoping I could afford near-"spectacular" and held my breath while the lady thought it over. When she said she had a "really colorful bouquet with Stargazer Lilies in it," I nearly jumped through the phone. I've been friends for 61 years with a writer named Jerry Spinelli who wrote a book called Stargirl that said things like this:
"The earth is speaking to us, but we can't hear because of all the racket our senses are making, Sometimes we need to erase them, erase our senses. Then -- maybe -- the earth will touch us. The universe will speak, The stars will whisper." -- and, since her friends and family are going to get together to listen for the whispers of the stars this Saturday, I wanted to add another Spinelli line--
"When a stargirl cries, she sheds not tears but light," because that is how I believe Jill -- who has always been so joyful -- will express even her sorrow -- as LIGHT, not as tears! I will look for her light tonight and shoot her a message that she has made Stargazers of us all and Stargazer lilies she must have! Jill has often spoken about how a star winks on in Heaven when a swallow falls to earth. She is now either a STAR herself or gazing upon them (a STARGAZER, too). In the Spinelli book, a non-conformist kid changed a town -- left an imprint on those who stayed behind when she left it, pretty much like Jill Vaughn did in the meso community. So, anyway, if you are in a flower shop sometime soon and want to "stop and smell the flowers" ask to see a Stargazer Lily if they have any and share in the vision of Stargazers being present on Jill's patio from now until then. (The flower shop said the Stargazers were guaranteed to stay fresh for 7 days and Saturday is only four days away so, if you want to, you can imagine yourself there with Jill's family and with flowers that symbolize looking up toward the heavens). We find meaning wherever we look because we know that meanings can comfort us -- tell us that it's not a vast emptiness but an infinity of connections between those who are gone, those who are here and those who are yet to come. Knowing you will always have a place in the scheme of things is good for us humans. Just to finish this letter, I'm sending some of the lyrics to "Stardust" because the melody just came to me. I'll stop when the words get mushy: Best, Bec
And now the purple dusk of twilight time
Steals across the meadows of my heart
High up in the sky the little stars climb
Always reminding me that we're apart
You wander down the lane and far away
Leaving me a song that will not die
Love is now the stardust of yesterday
The music of the years gone by
Sometimes I wonder why I spend
The lonely night dreaming of a song
The melody haunts my reverie
And I am once again with you
When our love was new
And each kiss an inspiration
Now my consolation
Is in the stardust of a song.
Nov 8th. I have not received this Acor listserv for years and suddenly it was in my email again last week. My heart goes out to Jill's family on their loss of such a wonderful woman.
She was the first person to hold my hand through this disease when I knew nothing about it. Jill had strength and helped so many others. She will be missed. Bonnie
10th Nov. I have been a quiet follower of this site. My husband Geoff was diagnosed with meso in 2009 and passed a year and a half later. We were not that amazing story of triumph that meso warriors look to for hope.
My heart was truly broken and I struggled every day to go on without him. This site was a gift of information and light. I never stopped lurking and Jill was a beacon that I prayed would go on forever.
I was so sad, I wept in my kitchen for the loss of her. I posted the following to my face book page.
Jill Vaughn, an unwavering light for those fighting mesothelioma, passed from this world yesterday.
She beat meso for an amazing 18 years, and in that time supported countless numbers with her daily post to the mesothelioma digest.
Her knowledge, her courage, and her generous spirit will be sorely missed. Such a spirit surely went straight to heaven, but kind words whispered to God in her name today would be lovely my friends, and most deserved.
Dear Catherine, I wanted to thank you for your sensitive and beautiful letter about Jill. I could picture you in your kitchen feeling the private loss of someone who, though she was out there and public, managed to mean something to each and every one of us. Though you may think your letter meant little,
it actually matters a lot to Bud (Jill's husband to whom friends are reading mail about her) and to those of us who have no way of knowing if anyone is "out there"/lurking.
Your letter would delight Jill because you are proof that her work here on the List Server didn't conclude for you in 2011 when your husband died because you still got something of value from the List Server in which she was instrumental. You matter. The fact that you still lurk matters. Most of all, the fact that you wrote to express
yourself when you call yourself "a quiet follower" matters to those Jill left behind because, whatever the size of the band of us, we are connected in having dealt with something fierce -- meso -- and, as you pointed out, the connection doesn't have to end with the loss of the Warrior.
There is something left in the wake of those who've passed. I think it's "Meaning." Your husband still means something -- maybe something long-suffering and brave -- to you and to us just as my husband did and just as Jill does. I know that I learned something about the value of life in how my husband coped, how all the Warriors I have known have coped. People who have been dealt a blow but who go on are a fascinating lot! Over the years I have seen them reach out to others and perform acts of service when it seemed they would be justified in crawling away to lick their wounds and tend only to themselves. Jill was ever the first one to do that reaching out -- to lead by example, not by word -- and many of us, though weaker than she was, are trying to emulate her behaviour because we can see that it is worthy of admiration and also love, which is what you expressed in your letter and in your tears. If I could reach out and pat your shoulder in thanks for your sharing, I would. Your words were kind and I'll bet that so are you. Thanks Bec.
10th Nov What a lovely letter Catherine. It is so sad that Jill is not going to write on the list anymore but I do hope you write in occasionally and let us know how you are keeping. As Jill got sicker Bec and I have
been trying to find out if people want the list to continue. If everyone does then we need to keep corresponding to it. We can find info that can be posted to the list.
It's a little bit harder for me as I live in New Zealand and so I do not know all the places in the States
where treatment can be obtained. But I am sure with all the help from other meso warriors and carers that we could keep it going. I can't say what Jill would want us to do but I just feel that she will be sitting up yonder watching us just to see what we do
Mavis Nye 9th Nov. I would like to send the Condolences of the Mesowarriors UK
to Jill's family and friends on their sad loss of a very brave Mesothelioma Warrior.
We are a group of Mesothelioma Patients and Carers who bond together around the world and hold each other up.
Jill played a huge part in this Community and gave so much to helping Warriors come to terms with the disease.
God calls on my name... and I have to let go of your hand now...Please don't cry... and smile for me..
because I'm with the one who made us friends.
9th Nov. Good Night to a wonderful Mesothelioma Warrior who cared and gave so much to others when in pain herself. We will always Remember Jill and send our love to her family at such a sad time.
Love from the UK Mesowarriors who are part of a great Community around the world made up of Patients and Carers. All so very brave.
11th Nov. It was an honor and a privilege to meet Jill at a mesothelioma conference afew years ago. She was so gracious, warm, and dedicated to helping the meso community with all her heart and soul.
I send my deepest condolences to her family. She was a remarkable person. Amy Sriberg
I am so sad without YOU out there Jill, The World Is A Very Different Place Without YOU in it. Thank you for everything you gave Pierre and I, your words were always precious to us, always gave hope, humor and happiness.
I am also glad that your battle is over and that you are now in the Realms Of Heaven. I will always Love You. Marjory Vinet
Deirdre and Bec. I have Jill in my prayers and thoughts so much lately, and all other warriors. Your efforts to keep us informed are, I'm any example, more warmly and gratefully received than you can know.
Fondly, Liz, widow of Ron Toner dx2004, died 2006.
List server 3rd Dec 2012. Jill was diagnosed in May 1996 with both peritoneal and pleural mesothelioma, so she was actually the longest surviving person up to November 2014. But when you think of mesothelioma it is just so great to hear of people beating the odds.
My husband Thom only survived four and a half months from the date of his diagnosis. He was diagnosed with pleural mesothelioma on the 7th of January 1997,
just seven months after Jill. Just think what might have been if we had lived in the USA.
Thom might have been one of those with a long survival rate. But we will never know. Will we?
That is how long I knew Jill for as I met up with her through the internet and after she had seen my website.
Jill's death has really hit me hard. Every time she had a problem she always bounced back even against great odds,
but I think from what Jill said she knew this one was going to be bad.
20th July 2014. Spent eight days in hospital. ICU, TWICE. l am still trying to recover. Running fevers. weak, Not on pc. Bad news. I have Pleomorphonic Sarcoma.
It is arising in the bone tumor. No good choices for treatment .
This One will probably get me. I am sick of this cancer shit.
But we still wanted to believe that once more she would be back on the list with us all. Jill was my hero and she will hold a piece of my heart forever.
One does not know what a treasure one has in their lives until they lose it.
On To My Brother's Story