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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/28/2013 8:45 PM (GMT -6)   
Hi All:

I've been AWOL for a few days, just wanted to let you all know I'm still alive and kicking. However, I'm not doing to well at all. My daughter needed some help and I spent this weekend doing by far more than I should have. Yesterday, it's a long story, I ended up driving 360 miles. Needless to say I'm wiped out totally.

I had my PET/CT scan today, need to make my follow up with my Dr. to get the results. Tomorrow, I get my CT for my hands, with the splints for radiation on them. Wednesday, I'll begin radiation on both of my thumbs, then I'll do heat therapy after the radiation. My Doctor plans on going low and slow with my treatments, so for 10 days straight I'll have to drive up to the city and get my treatments.

I'm in need of a blood transfusion I'm certain of it as I can barely stand up and walk around w/o struggling to breathe. My neighbor told me that I look like death warmed over, my color is so bad. I'm white as a sheet and have really dark circles around my eyes.

My ulcers cleared up with my Valtrex surprisingly and with my dose of MTX on Friday so far hasn't started another case of them. So, I guess my oncologist got it right that the ulcers were from the chemotherapy drug, and they weren't lupus ulcers.

Anyway, I may not be around to much posting for a couple more days. I'm really feeling unwell and I just need to sleep. I hope you all are doing better and always you're in my thoughts and prayers. I'll post when I'm able to, but you're all in my thoughts and prayers. If you have my home number, you're welcome to call, if I'm awake I'll answer, if I don't answer please leave a message. I'll call you back when I get up to have something to drink.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 10/28/2013 9:04 PM (GMT -6)   
 
Hi Barbara,
 
     What are you doing driving that many miles???  My goodness.  My heart aches for you.  You really need to take care of yourself and get the rest that you need.  So glad to hear that the ulcers cleared up.  I hope that you are resting well and getting the relief that you need.  A gentle (((((((((((((((((hug)))))))))))))))) from my neck of the woods.  Hope it reaches you over these many miles between us.
 
Love,
Laura

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/28/2013 10:22 PM (GMT -6)   
Sorry, Barb. That's great that the Valtrex cleared up your mouth ulcers! One small step in the right direction.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 10/28/2013 10:23 PM (GMT -6)   
Hi Barbara I'm so sorry that you're feeling so bad. I am glad that the ulcers went away though. Please get rest when you're able. Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/28/2013 11:25 PM (GMT -6)   
Barb,

So sorry to read of this bad update. My heart goes out to my fave pain buddy. Was hoping for some better news. When will you get the results of the PET scan? It wasn't so bad after all, was it? Did they do it with and without contrasts?

Will be thinking and praying for you, as you rest and try to get better some. If you care, e-mail me your phone number and I will give you a call. I will give you mine in return.

Still haven't gotten off my a** with the Skype thing, sorry, I know, I am a slacker.

Wishing and hoping for better days for you, my friend.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/29/2013 1:31 AM (GMT -6)   
Rest up, buddy. I would be wiped out too from all of that myself. Try to pamper yourself for a few days. We will be here with bells on waiting for you to feel better.
Good to heard also that your mouth is better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 10/29/2013 6:39 PM (GMT -6)   
Hey Barbara,

Sorry you're not feeling too good. I hope all goes well with radiation.

I'm glad your ulcers cleared up.

Hope you'll feel better. Keep us updated wen you can.

UA
Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 10/29/2013 10:10 PM (GMT -6)   
Hi Barb,
 
Glad your mouth is on the mend and more ulcers haven't appeared.  What is the heat therapy treatment?  I hope you get some rest this weekend.  Is anyone checking your labs regarding the blood transfusion?  I had blood taken today and I think it hurt more than I have ever experienced and to top it off she only got 2 tubes (needed 4).  Once the butterfly was in my hand she kept digging with the needle in my vein and now I have a very swollen and bruised hand.  Someone else came to stick me in the other hand for the remainder that was needed.  She was good. 
 
Take care and call when you feel up to it.
 
Julia
 

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 10/30/2013 1:53 PM (GMT -6)   
Barb,

Sorry you are feeling so punky. I know how that goes, although I cannot compare my pain or status to yours, dear friend.

I called you earlier this week after I missed your call. I will try again tomorrow. Now I am going to get ready to go to Kelly's gymnastics.

I am praying for you. Get results of the status of your H&H to determine if you need blood. Don't wait until you are on the floor, honey.

God's blessings over you, my friend.

Lindaloo
Moderator in Chronic Pain and Fibromyalgia Forums.

Believe in yourself. Be kind to fellow humans and animals. Take time to smell the flowers and the coffee.

And by all means, when you are down, ask me for help. I will be there.


Linda

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/31/2013 8:09 PM (GMT -6)   
Well here's an update on how things are going. Yesterday, evening I received a phone call from one of the Doctors from the Pulmonary Clinic, at Walter Reed. My Pulmonary Dr is out of town at a conference, so one of the fellows called in her place.

He told me that my PET/CT scan showed that the nodule on the upper right lobe was gone, but the one on the left is still there and I've also have developed several more throughout my lungs. He said that she was more experienced, smarter and new better what to say about my PET/CT. So that she would call me next week with my results.

However, he was calling because the radiologist was worried about me and wanted him to check on me. The Dr asked how I was feeling and was I breathing okay. I mentioned that I was having serious pain on my right side thru my ribs up under my breast. I mentioned that I had an x-ray and the Dr that ordered it said nothing was fractured. Well, he said, actually you do have two fractured ribs on the right side. It's my 2nd and 3rd rib, he also mentioned that he could see that I had 5 other fractured ribs on the left side in varying stages of healing.

He said I hate to upset you, but I have to ask, "Do you feel safe at home, are you being harmed by your husband?" I said NO, we've been married nearly 29 years and he's NEVER hit me. That I have a cat that weighs 10lbs and he seems to like to stand on my ribs and I believe he's fracturing my ribs. I explained that I have osteoporosis really bad from taking high dose steroids. He could look into my records and verify that. I'm not sure he bought my explanation, he reminded me that if I were a child they would have called child protective services already. He also said that he would be contacting my PCM and letting her know that I've fractured my ribs again.

So, my PT isn't doing any work on my back as long as I'm in the pain that I'm in. As there isn't a darn thing they can do for fractured ribs, I'll just have to take extra pain meds and hope the pain goes away soon. I'm unable to lift anything over a pound because of the pain. Having troubles dressing and lifting my arm. Bill wants me to take it really easy over the weekend. He said he'll do everything for me and he just wants me to lay and rest.

Hopefully, I'll feel better by Monday pain wise. As I'll start radiation on Monday, it hurts to drive, it causing serious pain to look over my shoulders, I'll have to drive up into the city with heavy traffic every day next week. Prayers for a speedy recovery would be appreciated. I'm not sure how much the radiation is going to affect me, they are planing on doing heat therapy with it too.

I'm going to call my oncologist in the morning as I'm pretty sure I'm in need of blood. I'm very pale and have really dark circles around my eyes. I get really short of breath when I walk, but that could be my ribs too. The hardest part is my fatigue I"m totally wiped out and just want to sleep all the time. I'm due to take my next MTX injection tomorrow. Will let you know what he says, it may be Monday before I get my blood as my Dr is given 72 hours to return my phone call.

Hope you all have a good evening and a great day tomorrow. I hope that those of you are having pain, I hope your pain levels drop and you have a day without pain or at least with very little pain. Hang in there all and you're in my prayers.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/31/2013 9:51 PM (GMT -6)   
Barb,

Thanks for the nice post at HW PC for me, really appreciated your words and kindness. Sorry I didn't get to call you today, had more to do than I could possibly finish, then had a severe pain day the entire day. Will take your number with me as I have a busy day tomorrow with both PT and another long legal meeting for starters, but will see if I can find the time to call you.

THanks for you latest update. Sure wish I had some magic power to relieve you of all you suffer. If I had it for myself, I would gladly forsake my own needs and give it to you.

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/2/2013 9:55 PM (GMT -6)   
Well today has been difficult to say the least. I didn't get up until after 10:30 this morning and could barely move. My ribs are killing me and the pain is terrible there. I feel a clicking when I lift my arm upward or move it around to much.

When the Dr's who will do my radiation told me I didn't have a fracture on Tuesday evening. I went ahead and lifted a 24 pack of bottled water and carried it to our kitchen from the entrance way. On Wednesday when I got up I hurt like 100% worse than I did the day before. This has stuck ever since, the Dr at Walter Reed called me Wednesday evening to inform me of the fractures in the 2nd and 3rd ribs. I'm now wondering if maybe instead of a fracture if they are broken all the way now, because of the clicking sound/feel.

Bill has been working really hard at doing all things for me. I spent hours in our chair in the family room holding the cat on my lap. We did go out briefly to look at a couple of cars. Then came home he made me dinner and again I just sat in the chair. I'm now in bed and thought I'd give an update.

My lower back is hurting as always, but man my ribs are really bad. I've taken the max on my break thru medication tonight so I'm going to hit the Motrin I guess. I know I have some 800mg tabs left, I'm not suppose to take this cause I'm on blood thinners. The pain is just to bad tonight I'll eat a salad for breakfast LOL that will thicken my blood up.

Hope you all have a good night and low pain levels. Joy I read your post and I know you're really flaring I'm sorry and I'll say a prayer for you tonight. Will post on your thread tomorrow.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/2/2013 10:37 PM (GMT -6)   
Oh, Barbara, I hate you're have such a time with your ribs. I hope they heal quickly. Try to take it easy and rest.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 11/3/2013 1:18 PM (GMT -6)   
 
Hi Barbara,
 
     I am so sorry that you are having to go through all of this.  I can't imagine your pain level right now.  My mom had really bad Osteoporosis and broke vertebrae just turning from one side to the other in bed.  It was so painful to watch that process.  She had also been on high pulse steroids for almost a year for Temporal Arteritis, which made the Osteoporosis even worse.  It runs in my family.  Both my grandmother and mother suffered through it.  And I am always concerned that it will affect me at some time.  I just hope you are able to get some pain relief today.  I am sending you another one of my (((((((((((((((gentle hugs)))))))))))))))) from my nest in the redwoods.
 
Love,
Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/4/2013 1:10 AM (GMT -6)   
Hi Joy and Laura:

Thanks ladies for the hugs and well wishes. I'm in serious pain with these ribs I tell you. I'm going to ask the Dr who will be doing my radiation tomorrow for a couple of things. I'm going to ask them to order another x-ray or a CT. I can't help but think that I may have turned my fractures into breaks. I lifted that bottled water Tuesday night when they said my ribs where fine. I've had pain thru the roof ever since then. Plus, when I breathe to deeply I can feel a click or pop.

I also noticed that I've got ulcers on my tongue again. The Valtrex cleared them up but my oncologist only gave me a weeks worth of meds. I figured as soon as I took the bigger dose of MTX the ulcers would be back. Since the Dr's I will see tomorrow are radiation oncologists, I would figure they could prescribe the same medication my oncologist did for my ulcers.

I'm going to be swamped this week with appointments. I have radiation everyday this week and everyday next week. I have to do Pulmonary Rehab on Tue, Thurs mornings, and Physical Therapy Tues, Thurs evenings, and finally therapy on Weds. I think I'm going to be totally wiped out by Friday evening. I'm pretty sure I'm going to need 2 units of blood sometime this week too.

Bill and I purchased a new bed a year ago, it was a Serta iComfort memory foam bed. We used it up thru September and found that the mattress became way to soft and the dealer we purchased it from allowed us to exchange it for something close to what we spent. Well, I have to say the bed we now have, is WAY WAY WAY to hard for me. Bill has a bad back but he does well on a firm bed. I hurt everywhere and I need a softer bed. Guess, I'm going to try to find myself a memory foam pad in twin size to put under where I lay. Sure hope it works, cause the morning are terrible I can barely move.

Laura, I sure hope you don't end up with osteoporosis, it's no fun at all. I kinda got a double whammy with mine. I had a total hysterectomy at age 32 so I went thru menopause young and then I have NEVER taken less than 10mg of prednisone and then that dose only lasted for maybe 20 days. The remaining days over the past almost 13 years I've taken anywhere from 20mgs to 100mgs daily.

That's why my bones are just so thin. I need to call the endrochronoligst tomorrow to let him know about the new fractures. He said if I fractured anymore, he would want to start me on a drug called Fortaeo is has a lot of serious sides affects and I believe I have to give myself a shot every day for two years. My dear friend whose 87 just finished her two years of it. She is like your Mom, she breals her back just rolling over in bed.

Okay, gonna go to sleep now. Hope you all have a good day today. Take care and will check in later.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/4/2013 1:35 AM (GMT -6)   
Take care and drive safe to your appointments.
If I was you I would hire a driver for the week and take it easy.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/4/2013 9:57 AM (GMT -6)   
I was thinking about you last evening and wondering if you could hire an unemployed person as a driver (not a professional driver, that costs a lot). Maybe put a part-timer wanted at $12 an hour or something on your local grocery or library bulletin board. I'd be better than minimum wage for someone! And something almost anyone over 18 could do. Around here we have a couple of street corners where men wanting work stand & you just go & pick them up. Although I bet Bill would think that was unsafe, it seems better than having you driving in pain.

Hope the day goes well, hugs.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/4/2013 10:29 AM (GMT -6)   
thinking of you, barb, and as usual, hoping for the best. know you in the midst of a busy week, somehow you got to pace yourself and ration your energies to get it all done.

david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 11/4/2013 1:47 PM (GMT -6)   
Hey Barbara,

I'm sorry you in soo much pain and the ulcers are back. Hope you can get some pain relief soon.

Hope all your apps goes well this week. Keeping you in my thoughts.

UA
Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 11/4/2013 9:01 PM (GMT -6)   
 
Hi Barbara,
 
       Hopefully, you are feeling a little bit better.  My wish is that your doctor appointments go well and that you get some physical and emotional relief.  My mom was on Forteo for two years and it actually increased her bone density.  She had very few side effects and was able to tolerate it quite well.  Please get lots of rest and take care of yourself.
 
Love and Hugs!
Laura

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/6/2013 12:03 PM (GMT -6)   
Barbara asked me to post this update -- she was just too tired for it yesterday. Sorry I didn't get it up sooner.

Barbara said...

We switched my heat treatments around. I was suppose to start those with my radiation yesterday and have no heat on Wednesday. However, we bought Nikita a car out of state and had to pick it up yesterday after radiation. Long day yesterday too.

So today started at 8:30 got home at 7:30 tonight. Had to clean the fish tank and help w/laundry. Had the heat treatment first and it hurt like a mother u know what. The heat my thumb up to 44 degrees celcius (not sure what that is in Fahrenheit) but it burns. They want it hot enough that I'm uncomfortable and it hurts but not where I'm screaming. A lot of patients sleep thru them, but with my central apnea I can't do that. They instructed me to bring an iPod or book or DVD to watch to try to get thru the session. The treatments last 1 hour. They do only one thumb daily, then I get radiation after that.

My tendon is hurting like hell, I'm limping and my rib is terrible. Pain is at a solid 8 out 10. Tomorrow have to be at med Ctr for heat at 9:30 then radiation, therapy w/shrink at 2. We will drop Nikita's car off at shop at 8:00 am will take Bill to work go do my pick up Bill at 4 get car come home.

Hope to post tomorrow, if treatments don't kill me tomorrow.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/6/2013 3:16 PM (GMT -6)   
Ouch, Barbara! I hope today is better. Feel better, honey.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/6/2013 5:16 PM (GMT -6)   
44 degrees Celsius ~= 110 F

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/6/2013 6:45 PM (GMT -6)   
Talked to Barbara a bit ago -- another terribly long day, she's exhausted. Today the heat felt hotter, so everything was more miserable. Keep her in your thoughts!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 11/6/2013 10:17 PM (GMT -6)   
 
 
I will definitely keep her in my thoughts.  Thanks for the update, Lynnwood.
 
Oreo
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