I am so very proud to know this beautiful person.
No matter how she is feeling she still gives so much love,
support and knowledge to all who need her help.
I am a better person through knowing her.
Bud and Jill
Someone asked for my story and I promised it. I hate writing long stories, but this is a very short history of my cancers.
My story begins December 25,1973, when I went into hospital to have a tumour removed from my uterus.
Previous to this time I had been bleeding for a couple of years.
I heard of Hinsdale Woman's clinic and that they did great things with women who had problems.
I met with a great doctor at the clinic who wanted me to try a new douche from Japan. It was to arrive at a certain pharmacy in a big barrel,
and there was only going to be two places that would be using it. It finally arrived and it was great.
I'm sure many of you all have experienced vaginal infections and all the different ways to treat them!!!!!!!.
The douche worked. That was probably in the fall of 73.Then I began to haemorrhage. Had a D and C and waited for pathology,
Called my doc "HMMM, Strange;" he said. "I'm going over to lab to check this out".
I asked if it was cancer and he said that is what the results are saying, but he didn't believe it and thought the douche had
changed some cells in the vagina. Lab results came back, Endometrial Interstitial Sarcoma.
Later MD Anderson told me that was the same thing as LMS. My doctor was to be out of town and he wanted one of his partners
to do the hysterectomy. They operated and the doc said "you've had a very good Christmas, we got it all. Size of a grapefruit.
BUT, there were some spots on the ovaries they thought were endometriosis. (they left the ovaries, because of my age, and that I would need the hormones) Wrong!!
It was Leiomysarcoma. I then had 3 months of radiation to destroy the ovaries, rather than cutting me open again. I had an Egyptian radiologist who said "Pray to what ever God your have, because that is all we have for you." As he held up a small file, he told me that this was all of the patients that had ever had this disease and gave me a 10% chance of survival.
I believe that I received 5,500 rads over 3 months. My weight went to 84 lbs. It was a rough time.
No drugs to really help the side effects of treatment. No chemo at that time was known for that cancer.
I believe that Prayer, Love from family and friends, good doctors and being burned by radiation, is how I survived.
There is more. Now it is 1989 in Connecticut I'm having flashing lights and black spots in my eye. Turns out to be an Ocular Melanoma.
I was lucky with the right doc again. He had studied under Dr. Graugoudas in Boston. He had invented the Proton Beam Radiation machine several years before. There are two of these machines in the country at the present. So I went to Boston for treatment. I have had no reoccurrence.
I do still have sight in that eye and fluid on my lung. Went to see my wonderful oncologist who had been following me for 9 years for the sarcoma and melanoma. He diagnosed me finally with Mesothelioma (asbestos exposure).They had been looking for a melanoma reoccurrence.
Life expectancy....3 months. !!!!!!!!!! WHAT, you must be nuts!!
I feel great, I'm working full time. There has got to be some treatment for this!!
As most of you know, MDA is the #1 Cancer Research Center, and they are telling me there is nothing for me.
I went to numerous doctors for different opinions. I have since had surgery to remove my lung in NY at Sloan Kettering.
Unsuccessfully and told I had 6 months to live in 1997 Feb. As they were removing the lining of the lung, they cut thru the diaphragm and saw the cancer in many areas in the peritoneal cavity. Very rare to have it in both areas as two primaries.
Less than 2,000 people were diagnosed with this each year at that time. Then in June, I began a Trial with Onconase, in Austin, TX.
Onconase is made from Leopard frog eggs) This involved having one injection a week.
I flew there every week for four years. I finally was taken out off the trial to see if my diarrhea was being caused from the drug.
Since, I was the longest living person on the trial, they had no one to compare me with. I was stable at this time with the Meso.
The diarrhea is caused from the radiation that I had 29 years ago. I have had "D" for a very long time, but now it is almost unbearable.
A year ago, I had a bowel resection, where they could see that the scar tissue from the radiation was wrapped around the bowel.
The doctor also saw the Meso throughout the abdominal cavity. He had never seen it before.
They never told me what kind of damage radiation does. They now tell me that the radiation is still destroying good tissue.
That is good, because, maybe that is why I have survived LMS, but on the other hand it makes living day to day real challenge with the problems it is creating for me now. At the present, I am having no chemo, I finally got the MRI
with contrast done Friday to my neck and veins in the chest to see if they would be able to maneuver a TPN line in.
One side is completely obstructed with a blood clot also and the other side is partially closed.
I had another test that determined that, but of course they need more tests. Just have no strength.
Only a little pain from the kidney stent and my rt. side, when I overdo things, like lifting .
So I take some pain meds. I eat OK, but it just comes right out of me, so I feel hungry all the time. The TPN should help.
16th June. Excuse my typing. I'm doing it on my laptop in bed at hospital while getting a 6 hour infusion of potassium, magnesium and fluids. I also have the kidney infection again and fever. Of course, it could be the Meso taking hold.
It the TPN does not work, I will stop it. Think the doc is coming. Oh, did I tell you that I have reached my 13th year with MESO.
Tues, 23rd June. 2009. Still hooked up in hospital. Wishing I could be home accomplishing something. My veins are really a mess. They just put in a new IV line. the last one was hurting so bad. The liquids burn so bad and my arms are all puffy and swollen from the irritation to the veins. They stick those lines and needles in and jam them and then they mess up and have to start over.
Doc was in! There is another M D Anderson clinic in my area. So.....I have to see a doctor there to see if I can get my infusions
there and not have to come into Houston. Instead of TPN, they want me to get 6 hour infusions twice a week at first to see if I can maintain the nutrients.
The last time I was in this hospital for a bowel resection for two months. They finally gave up on me and sent me home with "tumour" fever" since they could not come up with anything else. I had 104 fever. One day later I was at MDA and they saved my life, but didn't think they would. I knew it was not tumour fever and it wasn't.
29 Jun 2009. Infusion Therapy. Just got back from 6 hours of infusion Going to do this twice a week. So far I don't see any difference. Docs are concerned because I get the urinary infection so often and this is partly due to the colostomy and not
getting enough fluids through the kidneys. Also the ascites from the Meso and the damage from the radiation.
Jan 3rd, 2010. Jill is still in MD Anderson and now in the Telemetry unit for the heart damage caused from treatment.
27th Feb 2010. Last Saturday, I noticed my TPN line was hanging out of the wrist part of my sweatshirt....It came out of my neck.
THE WHOLE THING OUT OF THE JUGULAR....DANG
Of course couldn't get help till Monday. So I've spent 4 days at MDA trying to get a line put in. So one day they tried two different veins in one arm, didn't work...next day tried subclavial... didn't work....next day they wanted a repeat of the venogram....finally on Thursday, they got a line in the jugular and tunnelled toward the armpit...... so am getting fed again by TPN line. Just spent 5 more days in hospital with another UTI. Seriously. On two antibiotics. One oral and one IV. Making me terrible nervous.
Not on pc often. Not feeling well enough to read and answer. Getting really depressed over this.
25th March, Getting it at home for the time being. Walking much better...still a struggle though......If it wasn't for my hubby, .....I would have given up weeks ago. This is hard work !!! If Mr. Meso raised his head with me right now, I don't think I could handle it.
Go in for a UTI and come out with a bad heart !!!!!!!!!!!!. 91 days in the hospital.. 3 weeks in long term rehab. I'm tired....
Went in because of a urinary tract infection and they overloaded me on fluid and caused heart failure...trying to recover.. learning to walk and function as a human again...Mr. Meso seems to still be calm!
3rd Apr 2010. In appreciation and recognition of Jill's ADAO volunteerism, she has been awarded the Bronze Presidential Volunteer Service Award. Please join me in congratulating Jill for her inspirational efforts to help us all. Jill's award will be presented at the 6th ADAO Annual Asbestos Awareness Conference.
20th Apr 2010. Miracle has happened. My heart that was damaged has healed itself. Two different hospitals have run tests and the heart seems to be the same as it was in Oct. MDA said it would never be normal!!!!! I've been holding off telling you about my recent encounters with the urologist. Tomorrow morning at 7:30 I will be having surgery to replace the ureter stents and possibly a bladder splint depending on how bad the infection is. The stranger in my body is an INCURABLE urinary tract infection (UTI)
Never heard of such a thing, but of course I always have weird off the wall stuff happen to me. They feel the kidney stone is infected and they can't get it out due to the radiation. There are two other ways to get it, but no guarantees and three doctors won't do it. Too dangerous. I've spent two weeks dealing with the medical system to get myself okayed to have this surgery.
What a run around! I have fever and blood every day and pain on one side from the stent poking in. Hope the new ones are better.
They say that they will try to control the UTI with antibiotics. But nothing can cure it without the stone being removed and that isn't happening. Two appointments on Monday. One with my eye doctor to check out the melanoma eye. I've had to put that off due to all the hospital stays.
April 28 2010. Bud and I will celebrate 47 years together. And in May we will celebrate 14 years of survival with MESO.
22nd June 2010. In hospital since Friday. Feeling great right now, due to being pumped with IV fluids and vitamins and minerals and blood transfusion. Got a kidney infection again, don't know yet what they are going to do about the TPN. The surgeon that was to do the Tunnel cat had a heart attack and there is only one other guy who does this procedure and he is gone till Wed.
So they may put a regular line in, but can't do it while I have the kidney infection. Now!! Figure this one out. When they got ready to do the blood transfusion, they came in with the blood and just casually asked me if I knew my blood type and I said yes. I had a blood card that was given to me in High School from a hospital that says O+. They looked at each other and said it was B+. They double checked and even in July, last year, it showed B+. Maybe that is Mr. Meso's blood type ???? What do you think??
29th June 2010,Just got back from 6 hours of infusion. Going to do this twice a week. So far I don't see any difference.
I'm really dragging!! Really do need TPN, but doctor who is going to do the "weird" procedure, had a heart attack and I have to wait for him to get back. Docs are concerned because I get the urinary infection so often and this is partly due to the colostomy and not getting enough fluids thru the kidneys. Also the ascites from the Meso and the damage from the radiation.
14th Jul 2010. On a Thursday I had an appt with my urologist and had the urinary tract infection (UTI).Sent for ultra sound on Fri. Not good! Need to see doc on Monday and then be admitted to hospital. I didn't make it. Went to ER. Was in intensive care for over a week on a ventilator, tube feedings, strapped down, because I was fighting them so hard.
I remember NONE of this, which they say is very good. The next week was in IC and then for two days in a regular room.
I had 3 different infections, They tried to get some lines in me, that failed. IF I had been awake, I could have told them that they would not be able to get into those veins. So they did a central line in my femur. Still bruised up from that and it caused a blood clot. Blood platelets dropped. They were giving me shots every day to prevent blood clots, but after this happened.....
My "new" JI (central line in jugular) started flowing blood out the incision site. Can't use blood thinners any more, so.......once I got out they sent me to a haematologist They don't want to put a "filter" in so I just have to accept the fact that this clot could break loose.
They must have run every test they could and sometimes over and over. I now have 3 bags hanging off me and still have the ureter stents. I have the nephrostomy tubes coming out my back from both kidneys. Urologist wants me to get the stents removed and have the nephrostomęs permanently. l went to a different urologist. I have to get records from every place I have been since this started two years ago. They think the infections are from two kidney stones and they were unable to get them.
This will continue to be a problem with infection and also all the foreign tubes going into my body. This guy thinks he can. So I do have a little hope AGAIN!!!
17th Jul 2010. Spent 4 1/2 hrs in ER waiting room. Next day at 4 pm I was put in a room. I have VRE. Now you all will just have to look that up.LOL Anyway it is a UTI and it is resistant or let's say mine is) to all but 3 drugs. Tomorrow I should know which one will be best to treat me with. Have not seen urologist, He said he can't do any procedures till the infection is gone.
25th Jul 2010. I have been running a temperature over 102.Fever every day and nigh headaches and just not able raise my head.
At this point I have two types of bacteria and now have two different types of candida, one in urine and one in blood.
Today is the first day without fever in months. They pulled out the TPN line, Pulled out the stents. And replaced the nephrostomy tube. I "think" they plan on replacing the stents, but everyone has a different opinion. I "think" the urologist is getting cold feet about the stones being infected. I'm getting in deep trouble. Oh, I left out the IR. Dr. said he had put in a lot of central lines, but had never seen one like this. Normally, they can just to cut it out.
Good news........ No fever and back to my good appetite.
26th Jul 2010
Just been told thru a nurse(not Doc) that ESWL will be done at noon tomorrow. Never came today to do echo of heart. Want me to sign consent for ESWL. I said I wanted to talk to the doctor that was going to do it.
29th Jul 2010, Everything went great. Fever is slightly up this morn. But no pain. Just a little sore throat from tube. Scheduled to get eye exam. Fungus infection sometimes goes to the eyes. This happened last time. Your eyesight is affected, but it returns to normal in a few days and I didn't have any infection in the eyes last time.
2nd Aug 2010, Got home last night. On IV antibiotics for 4 more days: I can't take the pills due to malabsorption. Feeling good, but very tired. Got to work up to getting strength back. The doc is NOT sure that he got the stone 4th Aug 2010, Been in hospital 3 times. 3 different hospitals. Constant fever. Docs said I'm complicated. I've skipped out of an infusion appt this morning. Fed up with doc. In hospital 3 days sent home with fever. Went into hospital 3 days, later for 7 days. Sent home with fever, back in hospital 5 days.
Sent home with fever. Many docs suppose to be consulting ON this. Will see another doc on Wed or Thurs. Appt schedule is a little screwy. They would like to tap the fluid in my belly. I won't let them. Already know it is Meso, so why stir the shit up.
I'm sure this is the kidneys and the stents that are infecting me and causing the fevers. I know my body. But I still think I will have to go back to the urologist for some more surgery. I'm exhausted and in pain from the fevers and stones and stents.
9th Aug 2010, Been having severe pain near my left kidney. Went to M D Anderson today for visit and then to the new urologist. He did an ultra sound says kidneys look good. Thinks I need to see a "gut' doctor. Got a stronger pain killer. Hope Mr. Meso is not raging a war on inside me!!
10th Aug 2010, I have an unknown infection, where I've been on two antibiotics at the same time and have now switched to another one. Yes, I have dehydration, malabsorption, etc etc. Magnesium level got to .05 Friday and as Michele says that is very dangerous.
Causes permanent heart damage. Wanted me in hospital, but I begged for ER. I'm in the hospital every two to three days due to high fevers, and they don't know where they are coming from. We think from the stents in the ureters I will have to have these replaced every three months if I can make it that long, "put up with the fevers", take a new antibiotic, for 10 days and then go completely off. In one day the fever shot up to 104.4 after starting the antibiotic.
Suppose to go to ER, but I just can't stand that any more. A couple of docs would like to tap the fluid from my gut to see if I had infection there. They see the ascites, But at 72lbs........................ my stomach sinks back into my butt. They keep looking for a puffy tummy. I turn over and ask them to check behind me for it!!!!!
The doctors are baffled I'm suppose to be getting fluids but my schedule shows I'm getting nothing all week but blood stabs.
So I'm calling the Main clinic to see what they think they are going to do. If I can absorb anything, then I should be getting my magnesium and potassium by IV, which was the plan. Too many doctors involved. I do think they are going thru with the TPN (nutritional feeding). But there is a danger of infection getting into the blood from infection, which we have been trying to get rid of. But I'm starving to death.
Meso is NOT active. Has to do with the radiation damage to the gut 34 years ago.
I have a colostomy and now the kidneys are giving out. All I get is "you are complicated". In the local hospital I spent 6 days without seeing a urologist. REASON!!!!!!!!!!!!!! Local urologist doesn't like complicated patients and cancer patients.
They want to see fifty patients a day and then go home to play golf. So where does that leave me????????????
Am I frustrated! You bet. ANGRY! You bet. Too much money paid out to doctors and hospitals in the past 24 years.
Where's the help! I can barely put one foot in front of another, I'm so exhausted from lack of nutrition and running these fevers constantly. I'm pissed!
13th Aug 2010. LOL Just want to say that I do drink constantly. Ask my hubby. But due to the constant diarrhea and the colostomy, I will never be able to absorb anything. That is why I weigh 72 lbs. Malabsorption! Dr. Papa has the ball rolling. I will see the infectious disease doc tomorrow. Enter hospital to get built up over the weekend. They do blood every 4 hours. Monday will have the TPN line put in and start nutrition and pray for no infection to get in the blood and line.
16th Aug 2010
this so true!!!!!! But lots of hospitals and doctors don't want to waste time on dying people. I just heard of a case like this today. They gave me 3 months to live, 14 years ago and had nothing to offer. I 'm still here just an update. Saw 3 docs last week.
That's all I do is make appointments with docs. I'm so sick of this!!!!!! What I think is going on is that the tubes coming out of my back get in weird positions in the kidneys and cause this pain, Now I have a YEAST infection at my central line site and have to go into the hospital every 3 days to get it dressed. Need appt with heart doc and endocrinologist.
Thinking that these antibiotics that I'm on are causing the yeast.!!!?? Talking with urologist today. He wants to do a test, that I have just had done. I think he is losing his mind or just too busy.
23rd Aug 2010. Still in hospital. They may have things figured out Finally got the TPN line sorted. The docs got my blood pressure screwed up and it was dangerously high 184/110
Think it was from pumping too much liquid through me too quickly. Had the stents removed and new ones put in. They were completely covered with crud and blocked up.
The Docs at M D A have good ideas, but I don't think my Urologist is going to go along with them. No fever today. Very weak and sleep a lot. No pain Meds needed today
15th Sep 2010. At this time, I have another different UTI. Being treated with 4 antibiotics. Two bags of good red blood, fluids and will start TPN at the hospital tonight.
Infection is not in stool or blood, so once all the cultures are back and they decide what to do for me, I will be going home. So tired from no sleep and being probed and poked, I'm exhausted. But I'm doing O.K.
18th Sep 2010
Would you believe, I'm still in the hospital?! My oncologist has hospital rounds this week so things are getting resolved. He is very protective of me. He wanted two more tests today. If the tests stay the same, then I can go home. 7days.....They think the kidney stone is infected and causing the problem and for sure the stents will be infected.
At least it is not in my JI line(for TPN). Going to stay on antibiotics, hoping we can keep the UTI from happening before I get the surgery over with. Just remember that this NOT Mr. Meso !This is radiation damage from 34 yrs.
24th Sep, 2010
I'm in over my head every day with doctor or blood draws. I'm beat down. Tomorrow is day surgery to "blast" the stone and exchange the stents. Losing blood and TPN is giving me have the "heebie jeebies". We are all hoping that getting the stone out will solve a lot of problems. My Creatinine level is very HIGH and they are having me do blood work every day. Kidneys, just trying to quit on me. This is from radiation damage in 1974. Not Meso!!
29th Oct 2010. Just spoke to "one" of the doctors regarding the pain on the left side. He ordered an ultra sound and said this may be the problem and because of my past history, they have overlooked the common things.
We were talking about the urine culture and I told him they did not do it and he thought they had and went to look. They did no urine culture or blood culture
He was headed to ER to chew butt. I asked how they knew which antibiotic to give me. He said they just use a broad spectrum. I THINK I HAVE A PROBLEM.
FRIENDS!!!!! I can't stress enough to you to be sure and check everything they give you, results, Question everyone!! TPN Dr. from MDA called yesterday to let me know what the fat faecal test showed. Thought all was cleared up. NOT SO!! Two gals from the company supplying the TPN came and told me they had spoken to the doctor and he ordered another malabsorption test. Life is certainly full of surprises, isn't it.
29th Oct 2010.Not having much luck with beating this kidney problem. Tues I had an appt. with the cancer doctor at the MDA cancer satellite center. No pain. Put me in a room to give me fluids and within an hour, I was in excruciating pain. The ER in Clear Lake is just across the parking lot. They gave me morphine and wheeled me into the ER. I was still on the antibiotics, I either have a different bug or the medicine did not work. They scheduled me for surgery the next morning. That didn't happen after the doc talked with us. Scheduled for lithotripsy tomorrow (ESWL) of course,
31st Oct 2010. The doctors are getting scared off, with doing anything with me. The lithotripsy was cancelled. Then a gastro was called in regarding the severe pain on my right side. Had a cat-scan, ultra sound and this morning going to have a to have a HIDA test. Now I'm supposed to be on a high fat diet for the faecal fat test, but they already did it before I ate the fat. LOL. There are toooo many people involved with this. Everyone has a different idea on how it should be done. Finally got some sleep
OH, the pain in my right side is gone this morn. Interesting!!
I know they are treating me with the wrong antibiotic for the kidney infection, because of the colour of the urine
and the way it feels. It's not bad, but it is there!! I just don't know where to turn at this moment.
Since they didn't do the cultures before they started the antibiotics, they don't know what to treat me with.
Maybe if I get this test done, they will let me go home sooner. I thought I was going to have to wait till Monday for the test.
1st Nov 2010. Oncology doc came and we discussed the meso spreading and he went and copied some notes for the surgeon. Surgeon came in and cancelled the surgery!!!?????????? I said are you getting cold feet? He is repeating the ultra sound this morn and the HIDA scan tomorrow.
Said my white cell count is good and liver function is good and the pain is gone. Checking to see if the stone went back into the gallbladder!
So no surgery today.!!!!!! Who Knows!! Things are moving quickly. Scan showed blockage in the duct going to the gallbladder. Need surgery. Was given 3 choices and none were good. Will have surgery this afternoon to have the gall bladder removed.
Just hope Mr. Meso doesn't decide to spread into more territory. Can't seem to get a break here. And still we don't have the kidney problem resolved.
3rd Nov 2010. I've had TPN, fluids, blood, and antibiotics
for a week in the hospital and I feel great! Had more testing done on the gallbladder over the weekend and again yesterday. Will have surgery today at 1 pm today. The doc will try to do it by laparoscopy. If there are too many adhesion's, he will abort and do an open operation. Hoping and praying that Mr. Meso stays asleep and doesn't see what's going on and start to rebel. But mentally I've accepted that this is just something that has to be done and better now before I really have serious problems from the gallbladder. We are hoping that maybe this will clear up all the infection in the kidneys.........but that's a lot of hoping.
13th Nov, 2010. Went to the doctor on Thurs about the gall bladder surgery all is well. Went to doctor about kidney pain again yesterday. Got fluids and antibiotic by IV. Must go to hospital. Potassium very low. Can cause heart problems. Mr. Meso remains quiet
14th Nov 2010 My hair is falling out also I think it is all the antibiotics. Doctors just don't have all the answers. I'm on two blood pressure meds, to heal my heart. Not wild about taking meds. I think sometimes they cause more problems. And you are right about some RX's saying stay out of the sun. "yes", but the one I hate is NO ALCOHOL. I miss my wine. But things could be a lot worse for me!! Counting my blessings!!
22nd Nov 2010. Going to see urologist tomorrow afternoon to see about having the stents inserted again, instead of thee tubes and bags hanging off my "behind" I had them re-stitched 3 times and one hurts all the time. I just hope the stents will work and the infection will stay away. Saw the heart doc this past week, and Internal medicine doc. and my bone doc. Busy week. But I'm doing OK considering.....
24th Nov 2010. Urologist tomorrow. I had 6 medical appointments last week and one this week. And now we are headed to friends for Thanksgiving. I'm so blessed not to be in the hospital. I feel like a free bird let out of my cage. I have been out of the hospital for 3 months. Unbelievable. Urologist says we will take the tubes out and try just the stents again. Probably be in Dec. Had a urine culture done and we go from there, if all is good. I hope you all have a blessed holiday!
14th Dec 2010.Back in Hospital. GGGEEEZZ, my urine sample turned out to be infected, so back on an antibiotic. Didn't work. so back in hospital with 3 infections. They JABBED the universal stents in me. One went in, the other did not, Lots of pain. Now they found something wrong with the liver and want to do an MRI. My nerves are shot. Got a very sick cat, we are trying to save and the meds do not seem to be working.
14 Dec 2010.Got to go, they need more of my blood for some liver test.
15th Dec 2010.so....tomorrow afternoon they plan on doing surgery, to remove the stones. Regarding the UTI.....I have what they call the "super bug" I have become resistant to all but 2 antibiotics. When these become unusable... I will have some real serious problems. The tubes will always cause the bacteria and I must learn to live with the infection and only take antibiotics when it gets real bad. They can only be given by IV, so that involves being in the hospital. Always seems as if I come into the hospital with one thing and end up having something different.........but at least it wasn't cancer!!!!!!!Which I know they were looking for!!
20th Dec 2010. Home for the Holidays I've made it home again. Still have the nephrostomy tubes and stent. Then they found stones in the bile duct, so we got those out. I'm on a couple different antibiotics, but doing OK. I guess I will just have to learn to live with this problem. That's what they say. Peace to all.
12th January 2011
Anyway Jill was telling me that in May it will be fifteen years that she has survived the Mesothelioma. I find this so amazing.
Tue, 22nd Mar 2011.Update; Had my eye exam for the ocular melanoma. He said every things looks great. Cataracts, but not as bad as he has seen from radiation.
Don't have to go back for 6 months. Then M D Anderson......I've now been diagnosed with Osteomalacia. (Rickets in children). The doc said he had only one other patient like me and it was a man in his 40's. He is very interested in this and has been in contact with several doctors. One being in St. Louis, that specializes in this in children. He is presenting my case to him. From what I have learned, can't really do anything for it. Taking massive does of Vit D. It can be caused from digestive problems,
kidney problems, malabsorption, which I have all of this from radiation. My legs are becoming so bowed that it is hard for me to walk and keep my balance. The one good thing, is you can have a lot of pain with this and at this point...I do not.
2nd of July 2011, Jill is at home but has had numerous trips back and forward to both her doctor's and hospital
Mon,15th Aug 2011 It has been a month of frustration. There isn't enough room here to write what I have been thru. Basically it is doctors who have office help that do NOT follow thru. I won't go into detail, but the bone doctor has hired a NEW office manager and I have been in daily contact with him to get my bone stimulator. My collar bone was broken in February and it still is not healing. Have had the infection (UTI)and the last three antibiotics at home did not do the trick. The hospital only replaced one of the tubes coming from my back and did not change the other one coming from the other kidney. So the infection, once again after getting the DX back, I was to contact the Infectious Disease doc. He wanted his OWN lab to do the study, so I did it over. At the same time I received a letter from him that his office was closing. DAH, So when he got the test back, he gave me a prescription that had never been tested on this bacteria, just to try rather than going in the hospital for IV treatment It was a powder that I mixed with water every other day for two weeks. In the mean time the urologist had said he would talk to the ID doc about injecting something into the kidney. That never happened. So I asked the ID doc and he said he didn't do that, the urologist does that, GGGRRRRRRRR. I've been going to fax the urologist about the results of two tests that I did and see what the next step is. They've screwed up most of my other organs and I see no good things happening to these kidneys. Sorry not too much positiveness going on here. Mr. Meso is staying clear of all this mess and remaining quiet. So that's good news!!Will write again!
M. D. Anderson
DIDN'T Want to TOUCH ME AND STILL DON'T. As I was told today (SAT) that the doctor would get the group together tomorrow to talk to me. Now that would be Sunday. I doubt if I will see them.
Sunday, 13th November 2011.Today, I learned that they wanted to do some high powered c-scan. Can't remember what it was called, but it is just more radiation. I think this was probably after they talked to the oncologist that I have had for 22 years. He is so smart. Finally they said it was not cancer. Now they think I "may" have a sacrum insufficiency fracture. In other words......I've got a broken "butt". I still say it is my sacroiliac..They say that the MRI doesn't show it clear enough that they can get a needle in the right place for a steroid shot..I've been asking for a shot since I came in..They said they can see the nerve on the left, but not on the right. I agreed to the scan, just to make sure. IF it is a fracture, they will "cement" it. IF if is not near nerves. Lots of IF'S. Other than that all is well. I'm in isolation, but am allowed to walk around the POD if I wear a gown and gloves. I've got that UTI which I always have and it is a problem. And no more cancer than I already have after weeks of dealing with pain management...finally my hip was found to be broken, in M D A .
Sunday, December 25, 2011. Don't know if i got back to you. I am having home therapy 3 times a week, new hip. Lesions on bones were not malignant. sorry, forgive my scrawl after many weeks of pain and entering and leaving the hospital three times and many tests being done, the hip finally broke through and they could see it. So I had a hip placement. will be in rehab for about 3 weeks I really need prayers for the pain there were lesions so they are waiting for the biopsy or they aren't; telling me yet, waiting till I recover some more,
15th January 2012. 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 I'm still waiting for the fever to go up.
6th Feb 2012. I'm able to stay awake longer now, without giving out. Had physical Therapy this morning. I'm doing better, but still can not put weight on my leg. They say it will be months. I'm learning different ways to do things, but it is a slow practice. You get worn out dragging a walker around, I can now use my Rollator a little and go with out the walker in some rooms, but no fever and no infection and Mr. Meso is sleeping I Hope!!!! Why would he want to stick around in this body??
11th Feb 2012. Don't think I never get down. This morning I had a good cry, yelled at Bud, my daughter in AZ called at that time and my husband gave me the phone. She said "Mom don't be depressed" and started crying (She Never DOES THIS) And said knowing that she can call me every day keeps her going. She never thought I would make it to my birthday this year. Never have seen her show so much emotion. But sometimes WE just have to let it all out!! I try to be up for you guys, but I have my days. I was praying very early this morning and also shooing the ole devil out of my thoughts.
18th Feb. 2012. Had my nephrostomy tubes changed out yesterday. Have to do it every month. Has been a couple months ago. I usually get this done at St Lukes, because the urology doc does not practice at MDA. MDA did change them, but because they do not treat my problem, only treat cancer and I don't have cancer of the kidneys. So now that I'm not in the hospital, I have to go to St. Lukes.
The bags they use, are made for a BIG person. They hang on the floor. We cut them shorter when we come home. But the bags are huge, I can change to small ones during the day. I'm pretty down this morning and letting the tears flow. Had a very bad night with pain from the hip and it's still there. Just trying to deal with it. But what's next???? I want a break. I just start to pull it all together and BANG, something else happens. The physical therapy for the hip is tough. A nurse in the operating room, yesterday told me I was doing great. Her mom had the surgery over a year ago and was still in a wheel chair. I got on the internet this morning looking for a support group for the nephrostomy, but no luck so far.
1st March 2012
The first picture is me at the art show looking at my favourite picture. It was only $12,000. It was a shiny sports car and if you look close you can see reflections of race cars in the fenders and door. It got third place. The first place is the one that I would never had chosen. You can see a tiny bit of it in the lower Right hand corner. It was the head of a woman with black hair. Looked like it was all tan and white. I could have painted it. HAHA!! Next one is Bud having a glass of wine..
14th March 2012, I saw the ortho doc who did the surgery on the hip. All looks good. Still in therapy. Trying to use the cane now. But I get awfully tired. Still having therapy 3 times a week. Off that subject and ?'s about meso fluid. How many of you have had it and tell me what it feels like and if you have lymph involvement. Can you feel or see symptoms of it???
16th March, 2012. Had an appointment with the Internal Medicine doc. for my osteomalacia. I was supposed to do a bone density test, but I chose not to. I told him that I didn't think it was necessary since we already knew my bones were in bad shape, scoliosis, malabsorption, broken hip, etc. I didn't need any more radiation, because that was why I had all my problems. HE AGREED!! Bud had never met him, but was really impressed. He is extremely bright and seems very interested in me, because I am "unique" and he doesn't have anyone "like me" I'm starting a new drug for the bones. And there is a trial going on for another promising drug. I don't qualify so I've heard that before. I don't remember if I told you that I went to the Bone surgeon and everything still looks like it is in place and I can start bending further.
22nd March 2012. Soon it will be sixteen years for me. But every little thing that happens to me makes me think, aha!! Mr. Meso is getting aggressive. I get my PET in May, but I've got some concerns. Have a mole that doesn't seem right. Is it Melanoma??? and my face, neck ,arms, and belly seem to be getting "fat". Is it fluid ??? No fever, no pain!! Several people that saw me in the past two weeks have commented on my puffy cheeks and "looks like you are gaining weight!" I still only weigh 110. I've shrunk three inches, but that is the scoliosis working on me and that rib they took out in N.Y. Thru with PT at home and scheduled PT at outpatient to start on Monday. I tried driving for the first time so I could get there without Bud, But they will have to come and help me in. I can't handle the walker, in and out of the trunk. Will see the eye doc tomorrow for the ocular melanoma. He has started seeing me every 3 months now Keeping a close watch on the "freckle" on the other eye. Just got off the phone with the doctor of Pharmacy. She handles the TPN. Says I'm dehydrated and the calcium is low. That is caused by the new drug they gave me for osteomalacia.
Fri, 23rd March, 2012 Yesterday I saw the ophthalmologist who monitors my past ocular Melanoma ( soon will be 23 years and also keeps checking the spot on the other eye that is very visible. It has not changed and is not seeding, so it is not melanoma. I will return to him in six months. More blessings coming my way. My hip is coming along, but my knees are really in pain, from trying to walk normally again. I plan on trying to work in the flower beds today. It is a beautiful day to be outside today. I'm going to soak up some of that Vit. D. I've got a broken "butt". I still say it is my sacroiliac. They say that the MRI doesn't show it clear enough that they can get a needle in the right place for a steroid shot. I've been asking for a shot since I came in. They said they can see the nerve on the left, but not on the right. I agreed to the scan, just to make sure. IF it is a fracture, they will "cement" it. That is "IF" if is not near nerves. Lots of IF'S. Other than that all is well. Listened to a sermon this morning. Saying we should think about the good things going on in our life and not the negative. This week has been very negative, so I'm concentrating on the good. I'm in isolation, but am allowed to walk around the POD if I wear a gown and gloves. I've got that UTI which I always have and it is a problem. Got a nice window view of the parking garage. HA,HA, but there is some green grass and flowers to look at. Get my room cleaned every day. So there is the positive! And no more cancers than I already have. Got lots of angels watching over me. 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. 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!!!
On To The Continuation of Jill's Story