Thursday's Dr Appointments

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/18/2013 12:25 AM (GMT -6)   
Well, I had my two f/u appointments with my primary care doctor and the orthopedic doctor. Guess I'll start with the orthro guy.

He said I can come out of the boot. turn yeah tongue :-) :-) Can anyone tell I'm excited? After spending the past nine weeks in a cast or that stupid boot, I'm beyond happy tonight. Have to say it feels funny wearing a shoe on my left foot. Will start PT tomorrow on the left foot also will start PT on my back too, another woo hoo yeah yeah

My back has been killing me from rupturing my tendon and I can't wait to get relief. The pain has been so bad I've thought at times I'd lose my mind. Anyway, back to the orthro guy, he said that I still have Achilles tendonitis in my left foot, as well as my right. He said that he can feel the calcification in the tendons on both feet. Said I'll have this problem the rest of my life. That taking prednisone puts me at a 40% higher risk of rupturing them. shakehead Get good news, then bad seems to be the way of my life.

Told me to take it easy over the next couple weeks, if I start having pain go back into the boot nono nono I say I'd rather die first. If my tendons feel NO better in 2 months I need to see them again. The fact that my baby toe and the one next to it is numb is worrisome but we will wait and see.

Primary doctor agreed to a muscle relaxer, not sure for how long or if she gave any refills. I didn't pick up the medication, it was a two hour wait at the medical center pharmacy. I'll go in I guess later today and get it. So, yeah for her giving to me, but I'll be bummed if she only gave me a few, I understand why, she worries about my breathing, but man I hurt so bad.

I need to get blood cultures done, a sinus CT, and PET/CT of my lungs. I've been having fevers, sweats, chills, and severe fatigue since August. They are worried my mediport is infected, the last time I had those symptoms it was my port that was infected. IF my port is infected it's going to cause me a HUGE problem. They will have to pull my port and my cardiac monitor out of my chest. Bacteria collects around these devices and it will just keep reinfecting me.

The big problem is I have a MASSIVE blood clot in my SVC. If they have to pull my port they may not be able to get another one in me. devil I've been requiring a lot of blood transfusions as of late and w/o a port I'm not sure what they will do. I've very nervous about this whole prospect, I mean I don't want an infection but I do want my symptoms to go away. Plus, we can't seem to keep my INR in range, at the moment I'm at risk of making another clot.

Rheumy and oncologist feel I may have an atypical infection in my lungs, which could cause the symptoms, but apparently these types of infections are hard DX and treat. Also, they want to keep bumping up my MTX until my liver can't handle anymore shocked Not sure I like this plan but will have to wait and see.

Will see my oncologist next Tuesday and on Thursday I'll see the radiation oncologist who will start radiation again on the warts on my fingers. I sure hope that they can get rid of them, it worked the first time but apparently I didn't get enough radiation. However, having it again so soon, may make me lose my thumb smhair of course I'd already asked them to surgically remove it so who cares right?

Guess that's all the news here, hubby's working and getting paid, when not sure but soon I hope. Cat is holding his own, daughter is good, but way way busy at school. If you can tolerate the shot, please remember to get your flu shots. I'm allergic to them, but the family are getting them. It's closing in on the holidays and cold and flu season with it.

Hope everyone has a great day with low pain levels, loads of energy, and just happy well feelings. If not I'm sending many prayers, positive energy, thoughts and loads of hugs your way. Love to you all and thanks for supporting me.

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 10/18/2013 6:38 PM (GMT -6)   
Barbara, I'm happy to hear about the good news!
I want tell you about a person I heard about who had nasty warts on her hand that nothing was getting it. Her doctor tried genital wart remover on her hand and it was gone in a month. Have they tried that on you?

My bronchitis is clearing up and I'm coughing less.
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 10/18/2013 8:37 PM (GMT -6)   
Hi Barbara,
 
       Phew!!!  Both good news and some stressful news.  I am SOOOOOOOOO glad that you are out of your boot.  Hopefully, that will give your back a chance to heal.  I am so sorry to hear about your port.  Is the reason they are having trouble regulating your INR related to your diet??  When I was having trouble, they totally said it was my diet.  I consume a lot of deep greens, like kale, chard and spinach.  Once I backed off, it did help the INR stabilize.  Thankfully, I was only on the blood thinner for six months.  I was not happy watching my diet all of the time.  shakehead
 
On my end, stressors at work are reminding me to slow down and breathe.  I know if I don't, my body will respond in ways that I won't be happy with.  Thankfully, the GI stuff has calmed down.  Changing my diet and upping the Prednisone helped. :-)
 
Take Care!!
Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/18/2013 11:59 PM (GMT -6)   
Hey Joy and Laura:

Thanks ladies for the responses. I'll break them into two parts if that's okay.

Joy, first glad to hear you're beginning to feel better, maybe you've turned the corner. I hope you continue to improve and by next week will be back to normal.

As for the Aldera cream, yep, I've tried it. Used the stuff for six months and it didn't do a stinking thing. My doctors have literally tried everything on these warts. They even are taking this chance again with the radiation. Because it's so close to my last radiation treatments, I may lose the tip of the thumb or all the way to the knuckle.

The reason I can't get rid of the HPV warts is it's a virus and I don't have an Immune System at all, none. I have less T cells than your average patient with AIDS, and my B cells, well I have none. So I'm totally unable to fight off any type of infection. The Doctors at NIH, put me into one of the research programs there. They think I have an Immune Deficiency Disorder, in addition, to which one they don't know, that's why I'm in the study.

Laura, I'm sorry that you are still having stressors at school, but glad you are controlling them better and getting rest. So happy to hear that the GI problems have calmed down, I know you were very frustrated with how you were feeling.

Sorry you had to deal with the dreaded warfarin for 6 months. I'm sure it felt like it was 10 years, and I also know that your diet can really affect your INR. Unfortunately, my diet has nothing to do with why my INR is out of range on the low side. My Doctors are really stumped as to why. I eat the exact same amount of greens all the time. Actually, the past month and a halt I've totally stopped eating dark green veggies, and still I'm running low and can get another clot.

Hopefully, the doctor will be able to figure this out soon. Very worried about throwing another clot, I've already had two in less then 2 years so I'm on blood thinners the remainder of my life. I'll let you know how things are when I know something.

Hoping you both have a great weekend. Low pain levels, low stress levels to boot. I hope that you have just a good relaxing time with your family. So happy to hear that you both are feeling better. Keep up the good work and getting better, remember listen to your body and rest when needed.

Take care ladies and thanks for checking up on me and offering your thoughts on what to do about it. Please stay in touch over the weekend and let me know how you are doing.

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.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/19/2013 11:22 PM (GMT -6)   
Hey just a very quick update. Today has been pure torture for me, I have no idea what my PT did to me but my pain has been thru the roof. If you asked on a scale of 1-10 I'd say 100. I can barely move, and bending over well....

I notice around 3 am that I was having issues trying to turn on my side. When I got up at 7 the pain was unreal and barely could get to the kitchen to feed the cat and give him his medicine for the morning.

I'm still really hurting and I'm off to bed. I've got to make a trip tomorrow and it's in the car for 1hr 15 mins each way. Please say a prayer that I make it thru the day and the drive.

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.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/19/2013 11:40 PM (GMT -6)   
Sorry you've had such a miserable day, I hate days like that. Is your pain all over your body? Maybe your fibro is flaring - I know if I do too much too soon in PT I can aggravate things I didn't even know *could* hurt.

Hope tomorrow is better!
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 10/19/2013 11:52 PM (GMT -6)   
Ouch! I hope it doesn't hurt more due to the ride.
I hate it when my back gets like that. Make sure to carry an ice pack or heat wrap to ease some of the spasms.
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! :))

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 10/20/2013 3:27 PM (GMT -6)   
I hope your car trip today was as pain free as possible.
30 female. Sherrie, 2007 UC, 5/13 UCTD, 10/13 Fibro, Hypothyroidism, Intercostal Neuralgia, Dysautonomia, Meralgia Paresthetica, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, and Anemia.
Plaquenil, Lialda, Canasa, digestive ad lactose, Wellbutrin, Cymbalta, Lyrica, Midodrine, VSL 3DS, Rainbow light, Vit D, Humira 12/12

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 10/20/2013 7:27 PM (GMT -6)   
Hey Barbara,

I'm happy to hear the good news. Glad you got the boot off. I'm sorry to hear the blot clot though. I hope they'll figure it out so you wouldn't get any infections.

Sorry about your pain yesterday. How is it today? Hope you got through the trip okay. Keep us updated.

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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/20/2013 9:35 PM (GMT -6)   
Barb,

Me too: happy to read about the good news part. Just letting you know your pain buddy is back in town and back on duty watching out for you.

Will be watching here for any new updates from 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 10/21/2013 9:15 PM (GMT -6)   
Hey Lynnwood, Joy, Sherrie, UA, and David,

Thanks for your replies, you are all so good to me. Hey my favorite pain buddy glad you're back, I missed you and you were on my mind the whole time you were gone.

UA the blood clot is a huge problem for me as it is my second clot, so I have to remain on blood thinners the rest of my life.

As for my back pain, it's still really bad tonight and I'm really tired. I was on the road yesterday to go see my daughter at her college. Then my cat had me up very early with projectile vomiting and I think he was in terrible pain. Ended giving him some pain meds and he's kinda been off all day long. I think my buddy is getting close to needing to be put down. cry cry cry My daughter will be devastated and so will I. He's become my cat since she went off to college. We cuddle every morning and I'll be lost w/o him.

I'm going to head to bed as I have a very long day ahead tomorrow. I'm to see my oncologist, radiation oncologist, gyn oncologist and massage therapist. I expect to be totally wiped out by the time I get home tomorrow afternoon. At least the massage is last so I'll be relaxed on the drive home.

Will put a post in tomorrow to give an update on all the Doctors had to say. Had my CT of my sinuses done this morning so I should know if I've got an infection in there by the end of the week.

Hope everyone is having a good night, with low pain levels. I hope that you all have a great day tomorrow. May you pain be gone or at least very low. David, you and I are going to have to either Skype or call each other one of these days.

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.

Splashdancer
Veteran Member


Date Joined Aug 2009
Total Posts : 928
   Posted 10/21/2013 9:50 PM (GMT -6)   
Hi Barbara! I'm sorry to hear that your back is causing you so much pain. I know with me, it seems that when my back is hurting more than usual, all my other issues tend to get exaggerated along with it - drives me nuts!

I can't remember what medical issues your kitty has, so what I'm about to say might just be moot. Our senior kit is 14 and over the past year, he started vomiting off and on. We can't afford a vet, so when our cats have an issue I usually call a local friendly vet who is willing to make suggestions over the phone and I do lots of research. I found that hairballs could be the issue - as cats get older, they not only tend to get more hairballs, they also have a harder time getting rid of them. Then again, it could just be some kind of gastro issue. So what I do is feed him very small amounts (canned food only - hard food can be hard for the seniors to digest) several times throughout the day. For the most part, this has been working.

Anyway, I just wanted to mention that. Whenever I hear something about kitties, my ears perk up - I LOVE cats! We have 4 (3 of them are 'foster failures'! Lol) and I also belong to a FB group that shares/cross-posts cats from a local high-kill shelter, trying to find them rescues, fosters, or forever-homes.

Hope you have a less-painful, more peaceful day tomorrow. :-)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/21/2013 10:10 PM (GMT -6)   
Thanks, Barb. Thought of you a lot too while I was gone. Knew there was no way I could check up on you, and hoped and prayed you didn't have some kind of major event or setback.

We purposely left our cell phones in my car when we parked at the ship terminal. In a real emergency, anyone could have reached us by ship to shore phone, and we didn't want to be bothered with day to day normal calls or pay expensive roaming charges being out of the country.

And we never vacation with computers, kind of defeats the whole purpose of taking a real break. I noticed the world and the news managed to get on without me looking at it 100 times a day, lol.

They have computers onboard the ship, but someone would have to be nuts to pay 75 cents a minute to use them, not this guy. Plus was told the connections are so slow and erratic, being slower than even the old dial up lines.

Glad to be home, was probably our best vacation ever, even though we did this last year. I knew it would take its toll on me, but I would have to say it was worth it.

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

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/21/2013 10:35 PM (GMT -6)   
Hope all your appointments tomorrow bring GREAT news!

Hugs
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/22/2013 8:57 PM (GMT -6)   
Hey Splashdancer,

Splash, to answer a couple of your questions about my Grady, he's almost 18 years old. He's had a thyroid issues for many years now. We recently learned that he has kidney disease and has anemia very bad. He also has severe arthritis in his back hips and legs. The vomiting they figure is from the kidney disease. He never brings up hair ball anymore, as he no longer grooms himself except for around his privates after using the box.

Grady's thyroid medication causes nausea so he's on priolsec and is only given 1 tsp of food at a time. I spend the whole day running giving him food when he comes and paws at me for it. Some days he doesn't eat at all, we just went through a tough time and I was giving boiled chicken to get him to eat. He's just declining and my daughter and hubby both feel it's not time yet to put him down. With me having cancer myself (I could end up like the cat) I have issues with them refusing to hear what I"m saying. I don't want Grady to suffer at all, period.

The vet gave me some liquid tramadol for him, so I'm going to try that. She said an anti inflammatory would help with the tramadol, but it can shorten the time we have with him. Needless to say, my daughter said no to this option and hubby really doesn't approve of the cat taking medication period. He's not big on humans taking medication, so this is no surprise to me. I just wish I could do more for my little cuddle buddy.

I'm glad that you have someone that can look after your cats for you. I'm such an animal lover and I'm always donating money to pet charities LOL. Drives the spouse crazy, I just can't help myself, pets (animals) always love unconditionally and are there for you. Not all humans are and I've always been more sensitive about animals.

I remember my hubby taking me to see a movie back in the 80's I think Project X where they were testing radiation exposure on chimps. The movie would show these chimps dying, I know they really weren't killing them, but the thought had me so upset I started crying. I wanted to leave the theater and he wouldn't allow it. I cried the remainder of the movie and for 3 hours afterwards at home. When we saw Dances with Wolves, well, lets say I was out the door when they went after the wolf. I just can't handle stuff like that.

I'm by far to tender in the heart when it comes to stuff like that. Commercials or shows are turned off if an animal is being hurt or dying in anyway.

Hope you are doing well and things are going good. Please let me know how you are doing and how your 4 cats are doing anytime.

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.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/22/2013 9:20 PM (GMT -6)   
Hi David and Lynn:

David I'm really glad that you had a good trip with your wife and I'm glad that you spent quality time together. I'm sorry that you had to cope with a couple of serve pain days, but at least you had more good than bad. I agree paying $.75 cents a minute to use a computer is stupid.

We paid that back in the early 90's to call home from Europe when we were stationed there, but there was NO WAY I was going to go 3 years w/o speaking to my Mom. Especially, since I had a brand new baby when we left for Italy.

Lynn, thanks for the good wishes. I'm guessing some was good and some was not so good. I noticed that on Saturday my mouth was hurting yet again. It's actually my tongue and gums and they burn I can not eat because of it. Well, I can eat yogurt and ice cream. Thought maybe had thrush, so I used my Nystatin well it burned the heck out of my tongue and mouth.

Saw my oncologist this morning and told him about my problem. He looked in and said I'm full of ulcers, it's from them upping my MTX to where it is. Seems, this is going to be a common problem for me at this dose. He gave me valtrex and a lidocaine oral rinse. I'm to rinse before eating, and the valtrex is 2 times daily for 14 days. My hemoglobin is trending downward and I'll be needing blood real soon, if I can't get it to come up. He's thinking I'll need the blood next week. He's already gone over the protocol of the hospital, normally they do not transfuse a patient until the hemoglobin is 8.0 or lower. My cut off is 9.0 as I become way to symptomatic at that point. I'm currently sitting at 9.4.

We also found out that my Kidney function is rising and that's not a good thing at all. All these years with lupus and I've NEVER had an issue with my kidney's, now it's beginning to look I'm going to start having issues. I really don't need another issue, I've had all I can take and I'm fed up with it all period.

The radiation oncologist at the military hospital is against me having more radiation on my warts. However, he did say that he's never treated anyone for it and would be open to hearing what my Dermatologist has to say. He was going to try to reach him before Thursday. I'm to see my Derm on Thursday and my Dermatologist's colleague who is a Radiation Oncologist, who is considering doing more radiation on the thumbs. Also, will meet with another Dr who does heat therapy hoping he may have something to offer.

I'm so ready to just remove my thumbs. They hurt me so bad and bleed and crack all the time. Not to mention how ugly they look. Military radiation oncologist said I can't manage w/o the thumb and he wouldn't recommend removing them either. Suggested if I were to see a hand surgeon, maybe it would be possible to surgically remove as much tissue and then graft the fingers. I have no idea if that would work or not. Just, again, fed up with things as they stand.

My back pain isn't getting any better, doesn't seem to matter what I do to it. Feeling very defeated tonight, and a lot of the "why me" questions running thru my mind. I just can't imagine continuing to live in the condition I'm in much longer. The thought of this is gonna get worse and I'm going to have to cope with it, I'm just not sure I can.

Anyway, my massage felt good and I managed to get home by 6:45pm. Not to bad considering I left the house at 7:30 this morning. Guess I'm kinda still wound up from the day as I just can't get myself to go get into bed yet. Grady is laying on the back of the couch behind me, think I might try to eat some ice cream and then attempt to go to bed.

Hope everyone had a good day. I hope that we all manage to sleep well tonight and aren't awakened by pain tonight. I'll check in with you all tomorrow. Have a good night.

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.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 10/22/2013 9:32 PM (GMT -6)   
Yikes. Sounds like a very trying day with medical news...no fun at all!

I'm interested to see if the Valtrex helps any -- personally I'll be really surprised if it does as mouth ulcers are totally different than the oral herpes outbreaks it is designed to treat. Of course, I'm hoping it does help anyway as I had a recent reminder of what a drag a sore mouth can be.

Please try to eat something besides yogurt and ice cream!!! Maybe some cottage cheese? It has more protein and if you get the Breakstone variety with acidophiles all the probiotics will help you some. And it doesn't have the sugar like yogurt/ice cream which will give you thrush if you're leaning in that direction.

How is you gyn surgery healing? Saw you posting between appts this afternoon....maybe we'll chat soon.

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 10/22/2013 10:20 PM (GMT -6)   
Dear Barb,

So sorry to read tonight of your latest report and updates. It never stops raining on you, does it? One thing constantly after another.

Not telling you what to do, but I would be extremely cautious about taking on any more radiation for any reason. Did you ever get a clear answer about safe lifetime radiation limits for yourself? Remember, it's subjective, and there isn't any set amount per say, its more based on your radiation medical history itself, your sun exposure, skin type, etc. In my case, and my oncologist agrees, no more radiation - no matter why, even spot radiation for future bone mets when they start to appear. It's a question of risks vs. rewards. He doesn't think my body could tolerate even small amounts of radiation at this point due to all the damage that has already been done.

Please don't ever give up, can't stress that enough, and of course I know all the living H*** you have been through. Your life still has a reason and a purpose.

I am reading an excellent book tonight I bought just today at the local Catholic book store, it's called
"Never Give Up: My Life and God's Mercy" by John Janaro. Its about a man with terrible chronic medical conditions that left him disabled and unable to work. I am hoping I can glean some wisdom from it, so far, its an excellent read. If you like, when I am done (fast reader), be happy to send it to you.

As always, here for you. And yes, its my fault the Skype session has never taken place, I will work on that situation tomorrow, I promise.

Good night, hope and pray you are resting well. Sleep is bliss for any of us suffering.

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 10/23/2013 7:32 PM (GMT -6)   
Hey Lynn and David:

Lynn, you'll be happy to hear I had some oatmeal this morning to eat with milk. Bill just warmed me some home made bread and I pulled off the crust and just ate the middle with butter.

I'm also attempting some ice cold black grapes too. I've had several glasses of milk too. I've now managed to get four Valtrex in my system and my tongue is still burning, not sure if this is going to work or not, but I'll see. I've used the lidocaine oral rinse too. Will attempt to eat regular food tomorrow I think.

My Gyn/Oncologist gave me an all clear report, and said that my open incision is healing. That the tissue samples were non malignant and that there is no cancer in the tissue as all. He said unless I have anymore issues with my incision I can just wave at him as I pass him in the hallway. It looks like my surgery was a success and if I had any issues at a later date to please contact him.

David, I'm really trying not to give up, I know I need to keep fighting, but it's so hard to do at times. I know you understand that feeling, it just seems like I can't get a break no matter what. I promise I won't give up, but if I don't express how I truly feel I start to focus on hurtful things rather than the important stuff of wanting to fight.

I know that I really need to consider this additional radiation heavily. I was give 5 radiation treatments for a total of 2000, per my radiation oncologist at Walter Reed. I asked would the Dr at University of Maryland would know what that meant and he said yes.

According to my Dermatologist he has proof that the warts can be gotten rid of with more radiation. That he has multiple cases where it's been proven. The military radiation oncologist said he's never treated anyone for my condition and he would be willing to hear from the Dermatologist and consider things.

I will meet with the radiation oncologist at University of Maryland and his colleague. I need to at least hear what they have to say. I truly can no longer handle my thumbs, I swear one night I'm gonna have a few shots and just hack the darn things off in my kitchen. Bill will have a heck of a bloody mess to deal with, as I'm on coumadin, so I kinda bleed heavily LOL. I literally can not use my thumbs for anything expect to grasp things.

I would be very interested in reading this book that you're reading. It certainly sounds interesting, a friend of mine recently sent me a book by Philip Yancey, it's called "Where Is God When It Hurts?. I've yet to read the book but I'm going to read it soon. She also sent this exact same book to my daughter, as she's had trouble with dealing with my suffering in pain. She's very resentful and upset with my Doctors, because they don't keep me comfortable.

I hope that you're having a good evening. I saw your post on the CP forum about your new medication and that it was very sedating to you. I hope that it continues to cover your pain, and I'm not sure whether I hope that the sedating effect wears off or not. I know that you do not sleep well and if it's sedating then maybe you'll get more sleep. Guess it depends on how much you need to do during the day.

I hope that you both had a good day and I hope that you both are feeling as good as you possibly can. Lynn maybe we could talk on Friday. I've got a medical appointment at 11am but I should be home by 2 or so. David we're going to Skype one of these days. Hope you both sleep well tonight. Thanks for your support and understanding.

Love,
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 10/23/2013 9:53 PM (GMT -6)   
Hey Barb,

great to hear back from you.

told you there's something magic about the cold grapes, even though I was told green seedless, but I don't think that part makes any difference to be honest. really helped me at the time

only been on the Narco one day, but so far, impressed that I could tell a difference. Wife said I didn't seem to be so much on edge this evening.

I will be done with the book in a couple of days, so let me know, and be happy to send it to you if you have some reading time. I am liking it so far.

As far as radiation goes, it's measured in gys (pronounced greys). It's that cumulative total that is important to know. My two major radiation events alone totaled almost 150 gys, which is a lot of radiation, and that doesn't count dozens or hundreds of x-rays, CT scans, etc. That's why its no longer safe for me. Plus everyone gets radiation naturally from being outside, it all adds up

Take care, my dear friend and pain buddy, hope you have a good evening yourself

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 10/25/2013 8:38 PM (GMT -6)   
Hey Barbs,

Now catching up. Haven't been on for a few days.

I understand about the blood thinners. My father is a heart case and had to use Plavix and Aspirin to survive.

I'm glad to hear about the results are good and the incision is healing up now. Let us know how things go with the oncologist at the university when you meet with them.

Hope you will get some pain relief.

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