29th March 2012. Well, I'm starting the "real" therapy today. Will be going 3 times a week for a while. Not sure if they can help me. The hip seems to be much better, but the pain in the knee is so bad, I can't think about hip pain. I'm hoping that the pain is from trying to compensate for the hip and not that it is falling apart, too.
29th March, 2012. I drove the first time today. I went to have blood work at the satellite MD Anderson. Bud went with me and acted scared to death and said he needed a helmet. I'm still not steady with the cane and need the rollator. Unfortunately, I can't lift it and put it in the trunk,
so He sill has to go with me. Darn!!!
5th April 2012. Hi, Everybody, Got this message from Jill, who is back in hospital: "I'm in ICU, occasionally able to get to the PC. They messed me up with too much fluid and now trying to gradually get it off. Gained over eight lbs.
8th April 2012. I've been trying to feel good enough to mess with this laptop and let you know how it is going. I've kept notes, but I can barely read them. A couple of weeks ago I started feeling like I was going to get the flu. As the days passed, I kept loading up on the Tylenol to keep the fever down. It just wasn't working. so a week ago Sunday, I went to the ER. and was admitted to ICU a day later. They had overloaded me with fluid AGAIN it affected my heart had a cardiac catheterisation. Arteries are clear, but I have what they call "Broken Heart Syndrome".
Half of the heart is not pumping well. It should correct itself in a couple of months. On that Monday night I stood up and the plug and wires from the heart monitor caught one of the nephrostomy tubes and tore it out. They were suppose to do an exchange, but I was too short of breath and it had to be cancelled. Of course it was Easter weekend and there was no one to do it. So I now had a problem with the hole in the back and drainage, this has been quite a mess. Been coughing up blood due to some kind of dye they gave for the heart catheter. It can cause renal failure. So then they gave me medicine to counteract that.
Lots of mistakes, got to really watch what is going on. Now they are pumping me with fluids, then giving me lasix to get rid of it. They have to regulate what goes in and what comes out. I feel like a balloon!!! The antibiotics are working on the sepsis and hopefully, we are using the right one for the UTI/// I had gained 8lbs overnight. I tell them that I get overloaded and they argue that they are not giving me that much. I have to pay though for their mistakes. I think tomorrow, I may get the tubes changed out. Hope so, so I can get some of the wires off of me and go to a regular room. I haven't been out of bed, so I know my walking is going to be affected greatly. I just started PT outside the home.
Had one session!
10th April, 2012 Got the tubes changed yesterday and slept all day ,finally. Let me have real food today and told me they were going to move me to a room and out of ICU.
16th April 2012. So, here it is Monday morn, laptop arranged on my lap. heating pad on my chest and hopefully getting off NPO and can have something to eat. Just had a cat scan to see if my ribs are broken. Coded out on Wed 11th April and was out of it for a few days. Had CPR. I didn't see any white light and God did not come and greet me. No flames or fire either it was just very peaceful. Luckily Bud was with me and had put a cool cloth on my head. That's the last I remember. He saw my eyes staring ahead and got the nurse. All of this, for a Urinary tract infection. Doctors don't know what happened. They were giving me pain meds and think that the "broken Heart" wasn't pumping enough to take the drugs out as fast as they were going in. Brain scan says there was no brain damage. x-rays do not show break, but did c-scan to be sure. Just very painful and hard to breathe or move, but this too shall pass. They may take me to a room today. I have a lot of reading to do with mail. Will probably give out before I get to it. Jill
18th April 2012 In hospital. It's Tuesday, I think. I'm out of ICU and in a regular room. getting Physical and occupational therapy. Don't know how long I will be here, but I got 3 lines removed from me. Got my hair washed yesterday and hope to shower today. Chest is pretty painful from the CPR. Physical therapy is here to walk with me, so I'll sign off
20th April 2012. Got moved to the Therapy floor tonight. Not much going to happen over the weekend.
The doctor said I had 9 lives and she never walks into a room and sees someone in my good condition. They usually have brain damage. Blessed again!! When I came on the PT floor, the nurse said "we heard you were a real character" LOL She said you will fit in real well!! I try to be really up beat and make jokes even tho my chest feels like an elephant stepped on it. They put the IJ line in my neck for the TPN, which is suppose to start tonight. Unfortunately, I'm not happy about this placement. Two lumens are coming out of my neck, Usually they tunnel it down to my chest. Not sure why it was done like this, but is very unpleasant. Don't think I will be able to tolerate it like this.
22nd April 2012. Sunday evening. No therapy today, just did some walking. Knees really hurting and the chest is very sore. Slept most of the afternoon. Tomorrow starts 3 hours of therapy a day. I'm ready, but more ready to get home. I'm starting into 4 weeks in this place. All is well.... Jill came home not long after this
10th May 2012. Message from Jill. Jill just called, she will be admitted to MD Anderson today with kidney problems.
11th May 2012. I managed to get through to the hospital and talked to Bud.( Jill's husband) They were just getting ready to send Jill to the ICU. Bud said that as soon as Jill feels well enough she will most likely get him to bring her lap top in so she can give you an update. Lets just pray that they manage to fix the kidney problem and the very low blood pressure very soon so Jill will be back with us all. At present she is just so very weak with all that has been happening to her.
13th May 2012. Her kidneys are working. Her heart is working. The ejection fraction is now 55 which is good. Was only 20 before. For those who don't know what that means it shows how both sides of the heart are working. Bud has bought her computer in but its really hard to use with all the tubes coming out of her. She will write to you all as soon as she can manage. One thing she did say was how much she is enjoying the messages that are being sent to her. The volunteers take each message and put them into envelopes that they decorate and then deliver. They are really neat. Jill said its really lovely to get them. So please all of you write Jill a message. She will love it.
14th May 2012. I got out of ICU yesterday and in a normal room. Had my tubes changed out today. Had renal failure but doing well now. Just juggling my life. I don't think Meso will get me. I think all these treatments and drugs are going to do it and the doctors don't have a clue what to do with me. They think I should see a doctor once a week. What a real pain in the arse. I'll be so glad to get home again. The NEAT notes you are sending are so much fun to get. They usually each come in their own envelope, but I'm getting so many, they are "stuffing" them together. Thanks Guys, You are the greatest.
16th May 2012
Hi All, I spoke by phone to Jill today, thank goodness. She is now home but is still getting over the CPR that was performed on her. And her blood pressure is very low. They are trying to get it back up to something like normal. She is still very sore, weak and is finding things rather hard to do at present. She will start writing again as soon as she finds some more strength. In my opinion she is one amazing person and it was such a relief to hear her speaking. Deidre
27th May 2012 Just too tired to read mail. Came out on deck to do it, because it i so nice, but I'm going to have to go in to nap. Drugs are wiping me out. Have 22 doctor visits scheduled in two weeks!!!!!!!! They take so long. Had PET scan an saw the results yesterday, lung look ok, but I have a HOT spot on my left hip, not the one I had surgery on. The bone has just degenerated. Weird. Now I have to get an MRI. Then I have an unusual mole that has to be removed. I'm dragging. One pill is really doing me in. Monday, I have 3 doctor appts. First is an MRI of my left side(Hip} There is a hot spot that has grown from 2 years ago. So Tues. they will do a needle biopsy. The tumor has completely replaced the bone. Very strange looking. NO pain!! Wouldn't it be nice if they could just cut it OUT!!!!. Then the next week I get the neph tubes changed. I have to do this every month now. Glad I have insurance!!
8th June 2012. Biopsy coming up Monday, I have 3 doctors appts. First is an MRI of my left side(Hip} There is a hot spot that has grown from 2 years ago. So Tues. they will do a needle biopsy. The tumor has completely replaced the bone. Very strange looking. NO pain! Wouldn't it be nice if they could just cut it OUT!!!!
Then the next week I get the neph tubes changed. I have to do this every month now.
9th June 2012, I want to keep on surviving to give you hope. Now I have to have all these tests and the biopsy. Every time I start to feel good and am able to get around better, "bang" I get hit again. I actually fixed a meal by my self last night. My back is really hurting, from standing up for so long chopping vegetables, etc.
12th June 2012.Today is the biopsy. I'm sick in the stomach, some of you know that feeling. I see how much this tumor has grown...not good....but the others haven't changed much. I've gained 12 lbs, bought some new clothes yesterday. SHIT!!!...this Meso is a real pain in the ARSE. Can we ever have a "Good Normal" day???
25th June 2012 Give me a BREAK!! Doctor called Friday regarding biopsy of the sacrum, which I had already read on Tues.!! Basically I have a Giant Cell Bone Tumor. This cancer "shit" is getting really old and interfering with my plans. Doctor says I need surgery right away and it could be benign!! But maybe not. If it is benign, they will remove it then, if it is not...They will have to decide what to do. Of course, it is "rare" to have this in the iliac and sacrum and doesn't usually appear in people my age. How many times I have heard this,
25th June 2012 My daughter and two grandchildren have been here a week, so both PC's have been busy and we have been trying to do some things. I did get to go to Galveston with them shopping. Bought a bunch of cute clothes that FIT. Got to cover up all these "bags", so my sexy jeans just don't make it any more. Darn!! While there, I got a call from my ortho doc. (Friday)about the results of the biopsy. I already had gotten the report on Tues. I will write about that later, but there will be surgery.
29th June 2012. Looks as if the bone has completely degenerated. I do feel a little pain down low when I walk, but I would just assume it was from walking weird with the scoliosis and hip replacement. Would never have thought it was a tumor. I would just like to have a month free of Doctors !!! jill
1st July 2012. I found this in my drafts. Guess it was never sent, Jill. Bec, I've been trying to answer your questions about how I keep on going. Like Susan, we don't always want to tell you how bad some of our days are. I was always amazed at how well Susan could still get around till now. It sounds like it is as hard for her as it is me. And this is not even fighting the Meso. Believe me, when the lights went out it was very peaceful. When I came around, I was fortunate to not have brain damage. I don't have a magic answer for you, but when the negative thoughts set in, I say "out devil out"!! This board isn't to be about religion, but it is hard to not bring the higher power into the picture. God has given me this group, where I have made many friends and have seen many die of the horrid disease ...I don't fear death, in fact, the last time this happened, I almost wished my God had taken me. it was so peaceful. This made me feel better in thinking that it was this way for my friends. My mom was a very "strong" woman. So genes must be part of it. But my husband keeps me going with so much encouragement and love. The chest pain is bad, knee pain bad, can't take a lot of drugs due to the heart,
so they are giving me steroids now Ultram and Tylenol. Ice bags on knees gives me some relief, but does not get the pain gone forever. Found out from the doctors notes on the catheter in my neck. He DID NOT HAVE THE CORRECT CATHETER !!!!!! But would order one and change it out. They don't want to put me "out" due to the heart. They came in Thurs and asked if I was willing to do a local. NO WAY...I have always been completely out except this last So tomorrow, they will have an anaesthiologist with me and it will be done like last week. Scary, due to the heart. My ejection fracture was 20 and it had been 65. It usually heals up in a month. I've had this twice before. I take blood pressure medicine to keep it pumped up.
22nd July 2012. Where do I begin with what is going on with me!! Entered MD Anderson hospital last Tues. with UTI (urinary tract inf.)which seems to be coming about every two months now. They gave me antibiotics, but not the right ones for four days. Then they look at the bugs they grew and what drugs are resistant and susceptible. The latest drug they used to give me is now not working, so we went to a stronger one that is IV only and a pill antibiotic. It may kill me before it kills the bugs!! Then I was already scheduled to have the surgery for the Giant Cell Bone tumor on Wed. The doctor still wants to proceed with that. So I have to stay in the hospital, because I need the antibiotic for 14 days. Really makes you sick. They have given me big doses of Zofran but not working. They are going to try meclizine next. Bud sees a vascular surgeon on Monday. He has an aneurism. So they will be scheduling surgery. Otherwise he seems to be in good shape. He is a tough ole bird.
29th July, Bud home from surgery and is doing ok!! Will write later about it. I'm running into MD Anderson morning at 8am, come home and rest and back at 8 pm No time to write
3rd Aug 2012. Just trying to find a moment to read some e-mails. This Girl finding the bottle really brings tears and sobbing. I'm having a rough time emotionally. Doctors passing the "buck" and not following thru. Sorry Guys!! Just no time to chat. I'm meeting myself coming and going for infusions. Bud is still not acting so good. S_I_L is here, but having memory problems. Mr surgery is scheduled for Wed. IF I go thru with it.
7th August 2012. Pray that this is benign!!! Can't believe MDA. Now 5 pm and we started with appts at 9:45 am, what a bunch of crap!! My attitude is pretty bad. Trying to meditate, but finding it hard to do. I can call between 5-7 tonight to find out what time surgery is. The ortho said I was first on his list, but that doesn't mean early in the morn. Will call as soon as I can get upstairs. Now have to be at hospital at 6 am tomorrow. Will write when I can!!! Peace and hope to you all, with this battle!!
12th August 2012.I am home, Just trying to sleep They did a biopsy of the tumor and then left it.
Didn't know what it was, but feel it is a new tumor caused by radiation that I had in 1973. They may know in a week what it is and decide what to do.
14th August 2012. Jill is home now. I spoke to Bud as Jill had just fallen asleep. They just have to wait now for the results of the biopsy to come back before deciding what to do.
18th August 2012 Hi Everyone. I finally got to speak to Jill and can pass on to you how things are going . At present Jill says she is doing quite well but is still in a lot of pain. Up until recently she slept night and day but is now up and moving round a bit. They are waiting for the results of the needle biopsy, so as soon as Jill finds out she will let us know what more is going to happen.
19th August 2012. Just a correction. I already had a needle biopsy and they didn't get enough. So I had to have the surgery to get enough of it. Felt like they filleted me. Still no word from my doctor. I was told it takes longer when bone is involved. I was told it was bone cancer, but they did not know which one. Possibly sarcoma. Just wait and see. I've been down this path many times. It is very familiar.
21st August 2012. Bud just got back from a doctor visit and he had another c-scan and ultra sound. The doctor wants to see him every 3 months because the aneurism was so big. That makes me feel better, but his weight loss is still bothering me. But he is being a man.!!!! I'm feeling fine, back and butt hurt from where they cut me open, but that will pass. No pathology report yet. See the ortho on Thurs. Still trying to catch up on e-mails.
25th August 2012 Two weeks ago, I had the surgery for the biopsy of my ilium /sacrum for the bone tumor. The needle biopsy didn't tell them anything much, except it was a Giant Bone Tumor. So we did the "cut open" procedure. As of today I still have not seen my pathology report come through on the PC. I can get those through my MD Anderson.com. So on Thursday we met with the two orthopedics that cut me open. They said my pathology had been all around lab and they are "baffled. Sure that doesn't surprise you, you know my history. Pathologist said it wasn't cancer, said she felt it possibly was (the one in the surgery who saw me opened up) last one is on the fence and won't say one way or the other. What now!!?? If they go in and remove it and scrape the bone out, and it is benign great. It may affect my walking. If it is cancer, they will have to go in remove part of my pelvis and then I probably won't be able to walk. I hope to have the biopsy looked at another hospital. For now..I need a rest from all this "chopping", doctors, nurses, more drugs, needles, blood, and more drugs !!!
Thurs, I also had my nephrostomy tubes changed out again,that was more fun with drugs,gave me 50 mg of benadryl and I was having one of my twitching moments and got nauseated. The doc came in and asked how I was. Told him about the drug reaction and he asked the nurse, why was I getting Benadryl. In other words, I was not suppose to even get it. Wondered what she was doing, she said it was to relax me. I have an iodine allergy to contrast, NOT straight into the kidney the way they are doing it. I'll have this every month, so be sure, they won't give that to me again. Today the heart doc called about a RX I'd called to get refilled and he said I wasn't suppose to be getting it. He had changed it. Well the last RX was from the rehab doc. These doctors all practice at the same hospital. Told numerous doctors that it was making blood pressure drop when I was in the hospital. He said sure that is what it does. You had high blood pressure. Well friends, I have great blood pressure and he ordered something else. At one time in the hospital they "caused" my blood pressure to go up. Well, I've rambled on enough.
22nd September 2012. Please keep Jill in your prayers, as she is back in the hospital. Jill wanted all of you to know she has another UTI and bacterial infection that her team is fighting with antibiotics. She does have her PC, but the medication is making her sleepy.
25th September 2012. "Half measures avail us nothing" but maybe navigating through cancer diagnoses is different because Jill has made her own decisions all along, not always letting the doctors do the most extreme thing, always partnering with them fully informed and she is still here (One of the "half measures" she is considering right now is whether to let doctors remove the bone tumor which might leave her unable to walk or to treat it less drastically and still be able to get around.) The thing Jill does is Think Things Through and also Take Responsibility for her Choices.
October 1st 2012 Two weeks ago Sat, I went to the ER with a UTI. As usual WE spent 12 hours there and then went home with antibiotics-again.Two days later we were back at ER for another 12 hours. Admitted to the hospital. They pulled all my lines, and replaced the nephrostomy tubes. Have 2 bacteria's in urine and staph and fungus infection in the CVC line. Am on 4 antibiotics. They replaced the line in my neck.
October 7th, 2012. Last day of my antibiotic!!!!! Now need to regulate the TPN again. But they have the time to start screwed up, because they didn't go thru the doctor. Oh, the charge nurse just came in and said they didn't have the right kind of Zinc. Eventually they will get it together. One thing good around here is the food. But I sure want to go home.
14th October 2012
Jill is also fighting a fever and just got out of
the hospital and is about ready to go back in
Any devil (and meso is a devil) who wants to do damage to Jill, first has to catch up with her!
19th October 2012. I would just like to be able to write something good once in a while. Really, leaving a lot out about my last month. DEALING with the medical profession. As far as I know the Meso is calm. I requested that blood and urine samples be done on me before I went to ER. It is usually a 16 hour deal before I'm admitted with this same UTI.l also went to a different doctor and he is referring me to a local person, that will be starting all over.....but....in the meantime...today, Got a call from the hospital stating that I needed to go to the ER to be admitted because the urine had gram negative bugs. WHAT'S NEW !!!!!!!! I'm so mad, disgusted, etc, etc, etc, gggrrrr they don't know the exact "bug" or what to treat it with. DUHHHH!!! Look up what I had 3 weeks ago! I'm furious!!! It is the weekend...what will they do? NOTHING!!!!!!!!!! I have no fever at this moment I just made a Key Lime Pie from my neighbors tree and I want to stay home!!!!!!!!!!!! I want to enjoy this beautiful weather!! I'm losing my mind!!!!! don' feel good. Blood work and urine culture today. Went to a new doc yesterday...long story..I'm very nauseated and vomiting, back pain...probably kidneys again Don't feel like talking...too nauseated
12th October. 2012. I got out of long term care Tues night. Have been very sick, holding off till temperature reaches 101. Been to ER again Thursday. I finished my 14 days of antibiotics for the UTI. Had two days without them and I needed to have a basal Cell Carcinoma removed. I had cancelled this 3 times due to always being in the hospital. Had a really hard time sleeping. Finally had no pain late morning and fell asleep for couple of hours. I haven't taken the patch off yet. The doctor showed me how big of a slice he had to take. OOOHHH! The slice looks like a football. I've had moles removed before, but not like this. He had a student PA with him. She asked him a lot of questions, so I learned a lot. My feeling is the he cross stitched it together. He asked if she could do a few. I wanted to say no, but we had talked a lot and she was so friendly, so I let her. I could sure feel the difference. He had to tell her where to go in and that needle must have been getting dull because she really tugged. Now I need to get the light treatment on my face for precancerous spots. That's what you get when you are in the sun a lot. Mr. Meso is so quiet!! But the Bone Tumor is increasing in pain. Can't get my mind off it. You all know that feeling. I know the surgery will be bad. I'm hoping and praying that it is not cancer because the next surgery would be a hemi pelvectomy. I'm getting too old for this "crap". I'm walking with a cane and a rolator (walker) now. I keep exercising, but every time I see a "little" improvement. BAMM, I get hit with something else. But I'm glad to be able to get downstairs to my PC and enjoy the beautiful weather. Life sometimes is a struggle, but I think it's worth putting up a good fight. I hope your day sunny and peaceful. Me and Mr. Meso.
30th October 2012. Are you trying to challenge me Luddite. l feel so dumb looking it up. Just got back from seeing the ortho to discuss any changes that the c-scan showed last week. I'm feeling good, I think the UTI is finally going away with the antibiotics. Have another week with them and then will check urine. They make you very tired and stomach aches. Just don't know where to begin. Nothing good about this bone tumor. If it does turn out to be cancer??? Right now, I don't want to talk about it. Need some time to think about this some more. I had plenty of questions and he had no "good" responses. I like this doctor and he does talk to me! Dang, what a predicament I'm in.
20th November 2012. Well, I do complain, but mostly about the frustration with the medical system. Here I go again. Two weeks ago, I had a basal cell carcinoma (mole) taken off my back. They cut out about 3 inches down and out into the shape of a football. Bud said it looks like 14 stitches. Got a call last night and it still shows in the margins, so tomorrow surgery is set to do it over. I was to have the stitches out today. I asked if I could just come in tomorrow and get it all done in one day. Duuuuhhhh!! So guess where I'm headed in the morn? Also have to get blood drawn for the TPN and then get my nails prettied. I bought two "bright blue" canes. Now I walk around with one in each hand. Where there is a will, there is a way. Called and left a "message" with the ortho and asked them to get the CAT scan read again and compare with the recent ones and not the ones of a year ago. Also called and left a "message" with the oncologist and asked him to review the scans and help me make a decision regarding the bone tumor.
22nd Nov 2012. Cell Bone Tumor Surgery was pretty bad. I got real jittery and light headed. Had to call Bud to come pick me up. Still in a lot of pain today,
24th November. 2012. Hi Craig, Six weeks ago you had a big blow to the gut!! You will go thru stages with Mr. Meso. Once you decide on treatment and get started, you will feel better about everything. You will meet many of us that have outlived
the statistics and there is a lot more being done for meso patients now than when I was diagnosed in 1996. Yes, that is 16 1'2 yrs. this month. I have pleural and peritoneal and they believe that it is two primaries. I live in TX. but went to several places outside of the state for opinions. I had my surgery in N.Y. and Chemo in TX. I still have it, but they call it indolent. It's not an easy road, but you can overcome some of the hurdles. There are many here that can help you thru and answer your questions. Where are you being treated? Who is the doctor? Where is your cancer and what type is it? I like to remember the words of the great Winston Churchill when he said, "Never, never, never give up!" Jill, (Me and Mr. Meso,)
15th December 2012. I still have the UTI and am on 14 more days of antibiotic. Went to a new doctor ( maybe I told you already) She did not have the knowledge to treat me. I'm going to call my past urologist and try to get him to change out the nephrostomy tubes. I really feel better than I have in a long time. My legs don't work well, with the neurophathy, but I bought 2 canes and I use them when I go someplace by myself. About a month ago I had a mole removed on my back. Stitches for two weeks. Path report came back and they did not get it all. They had a surgeon come in and cut out more skin. She had to stretch the skin and stitched it and then put 32 staples in. This was for two weeks. she removed them last week but I still have to have a bandage on it. I had PDT on my face and that really burned for about 2 days. But my face looks pretty good now. Bud has had this done 4 times. He is very fair skinned. and he has these precancerous things in his hair. On Dec 31, I'm to have a c-scan for the bone tumor and then see the doctor. Still don't know if I'm going to let them remove this tumor.
16th December 2012 The Glad Game, Pollyanna, and getting around to being merry. I do play that game every day. I guess that is why I get thru each day. Believe me tho, I can start thinking about the negative, but then get my self thinking about how grateful I am. Today, I have been bawling a lot. This school shooting is really affecting me. Then it being Christmas on top of it. SOOO very sad!! But then you have to play the "glad game". Glad that my grandchildren are safe and will have a Merry Christmas. I get sad because I'm not able to get my Christmas decorations down from the attic. I'm one of these people who decorate every room. I've had two different House Tours for Charities. I loved to go shopping after Christmas and buy sale things. Almost all my decorations are hand made. My mother made many of them. Today I did pull out some dishes that I had not put in the attic. Found my Christmas place mats, table cloths, etc. Have the "smelly" candles lit and the music playing. just feeling very grateful for these many years of life with my family.
On To Jill's Story