I'm still here, with issues

Wisteria83

Hi everyone.  At the end of April it will be one year since I finished treatment.  I've healed well from the burns, but I'm still dealing with extreme fatigue.  If I don't get a nap in the afternoons, I'm completely useless by dinner time.

I'm still dealing with diarrhea most every day.  Yesterday I had what I consider a "normal" BM.  First time since before I was diagnosed.  It hurt then and still hurts now.  Lots of pressure/pain. But no bleeding, thank goodness.  I'm on a low residue diet and wondering if I should try to add some fiber, either in food or metamucil.  I get lots of crampy abdominal pain that comes and goes and I'm SO gassy.  The "Never Trust A Fart" has been my mantra, but there are times when I can't hold it in and I just toot, toot, toot as I'm walking to the bathroom.  Usually, I'm able to control my BM's since I went to a pelvic floor rehab physical therapist, I seldom have any accidents (fecal) but still occasionally have bladder leakage especially with exertion.  I do my exercises, and I bought the silicone vaginal dilators that I've been using.  I'm still using the smallest one, and have not attempted intercourse because stenosis has made my vagina so tiny and the tissues are extremely sensitive and fragile.

I've had two anoscopies, a Pet scan and two DRE's.  All is good.  I'm a little concerned with the anoscopies as the surgeon does them so quickly, it's hard to believe she can really see that everything is ok in there.  She also doesn't use any type of contrast like I've read about.

My husband and I are moving to another state in May (FL) and my radiology oncologist has told me that he'll "Hook me up" with someone down there who can follow me.

I'm still not gaining weight.  I've actually lost more and weigh 80 lbs.  I think it has a lot to do with my diet and my fear of eating something that's gonna set off a bout of diarrhea.  I also have no appetite.  Nothing looks or tastes good.

I've been struggling with anxiety and taking Klonopin which helps.  I go to pain management for other issues, and when I tried cannabis last summer to help with my appetite (It worked!!!) my pain management doctor told me that if my urine test showed THC again, he would stop prescribing my pain meds, which I've been taking since early 2000's.  I know if I stopped taking them, I'd be in a world of hurt, and not just because I've developed a tolerance for them.  I have cervical and lumbar radiculopathy, (Two cervical fusions, 8 years apart with plate and screws), carpal tunnel in both hands and I'm not a candidate for surgery since I've had it three times on my right hand and twice on my left.  I have Fibromyalgia that no med they've given me has helped.  I truly feel like my body is my enemy and I'm always waiting for the next bad thing to happen.  Sorry to be such a whiner, I just have SO much going on.  For those of you who know me from when I went through treatment last year, you might remember that two months out of treatment I herniated a disk in my lumbar spine and after conservative treatment (3 epidurals with different steroids) that didn't help, I had to use a wheelchair because the sciatica pain was so bad, I couldn't walk. I had back surgery late August.  Diskectomy and laminectomy.  I still have pain in my right leg and buttock and numbness in my foot.  I can walk short distances, but then it gets to be too much.

WOW...I sure have written a lot.  Sorry for the novel.

Anyway, I actually do have a question for you all.  Since the Cannabis helped me with my appetite, I'm thinking about asking my doctor for Marinol.  I know it's usually used for cancer and AIDS patients, which I am neither. So I don't know if they will consider me for it.  Which doctor should I ask?  Pain Management, my PCP, my medical oncologist or radiology oncologist?  I really think it could help me since cannabis is illegal in NC and FL.  FL allows CBD oil, but it's low THC, so I don't think that will work.  I should also mention that I tried Mirtazapine, an antidepressant which is supposed to help patients gain weight, but it didn't help one bit.

Thanks in advance for any advice you can offer.

Fondly, ~Wis

Msmoxie

I would still try the CBD oil for the pain and more

I am sorry that you are suffering so.  That doctor is cruel to disallow you the cannabis if that helps you with pain and appetite.  CBD oil is used (and does not get you high) by many people suffering various maladies.  It may help you too... worth looking into.  My niece takes the CBD oil for PTSD.... it may help with your anxiety and get you away from the pharmaceuticals that tend to have worse side effects.   I don't know where you are headed to in Florida but if it is anywhere near Gainesville, FL ... look up John French, LMT.  He has helped me sooooo much with his orthobionomy technique (most people have never even heard of this and I have not been able to find anyone in NJ that is practiced in Orthobionomy).  John French, LMT is a true healer ... and I am not just saying that.  Our chiropracter refused to work on my 82 year old mother once her bone density test results made him nervous about adjusting her at all.  John French has techniques that are supremely gentle and a healing touch.  Also, old fashioned Valium is the pain reliever of choice for me.  I have seizures on Tramadol and the other newer pain relievers have unacceptable side effects (including possibility of manic episodes.... like we need that on top of the suffering!!)... Because I have problems and bad reactions to many typical and common meds... my doctors are understanding and prescribe what works best for me.  Thank God for that because the suffering is unecessary.  

I believe that finding the right doctor will help you immensely.  I have ditched the doctors that don't understand and won't understand where I am coming from.  I have my primary care physician and a radiation oncologist (he knows that I will not accept chemo or radiation but willingly helps me with any request I have... I am thankful for kind and sympathetic doctors).

Maybe once you get to Florida you will have more open-minded physicians that truly want to help you... not themselves.

Sending you positive energy and strength : )

Moxie

LindaBaehr

Ugh

Sucks that you live in illegal states.  I hadn't used much in several years, but as soon as I went on chemo I got my prescription card.  I really calms my stomach issues.  As far as CBD is concerned, for my issues I have not had good luck with it.  I have used it orally and smoked it, and it has not helped my stomach or the neuropathy in my feet.  

As far as food is concerned, I still have the persistent diarrhea.  Not sure if it ever goes away.  I have eaten low carb for years, but I have found that if I add some rice and corn (chips!) into my diet, it seems to firm me up a bit.  I only eat one meal a day now on work days just so that the food doesn't keep me in the bathroom all day.  It took some getting used to, but it's fine now.  

mp327

Wis

I am glad to see an update from you, but sorry to hear you are still struggling with so many things.  I never used THC in any form to help with my pain while in treatment, so I can't give you any advice on that.  As for the continuing bowel issues, mine lasted for the first two years seriously enough that I never left the house until afternoon.  Things got much better after that, helped by choosing the right kind of foods.  I did still have the occasional accident.  I never did get very far with using the vaginal dilators, so I've just quit using them.  However, I'm happy to say that I had my annual pap smear and pelvic yesterday with no pain.  Yay!  The little things we celebrate after going through this treatment!    As far as quick anoscopies, mine are always like that.  I'm glad you continue to get the all clear in that regard.  I can relate to back pain and know how horrible and debilitating that can be.  I'm sorry you've really been through the wringer there.

Please don't apologize for coming here to update us on all you are going through.  You are NOT whining.  You have a lot of things on your plate and my heart goes out to you.  I hope you will be able to find a good doctor in Florida who can help you find relief.  Best wishes on your move.  Take care and keep us posted.  Hugs!  

Wisteria83

Msmoxie said:

I would still try the CBD oil for the pain and more

I am sorry that you are suffering so.  That doctor is cruel to disallow you the cannabis if that helps you with pain and appetite.  CBD oil is used (and does not get you high) by many people suffering various maladies.  It may help you too... worth looking into.  My niece takes the CBD oil for PTSD.... it may help with your anxiety and get you away from the pharmaceuticals that tend to have worse side effects.   I don't know where you are headed to in Florida but if it is anywhere near Gainesville, FL ... look up John French, LMT.  He has helped me sooooo much with his orthobionomy technique (most people have never even heard of this and I have not been able to find anyone in NJ that is practiced in Orthobionomy).  John French, LMT is a true healer ... and I am not just saying that.  Our chiropracter refused to work on my 82 year old mother once her bone density test results made him nervous about adjusting her at all.  John French has techniques that are supremely gentle and a healing touch.  Also, old fashioned Valium is the pain reliever of choice for me.  I have seizures on Tramadol and the other newer pain relievers have unacceptable side effects (including possibility of manic episodes.... like we need that on top of the suffering!!)... Because I have problems and bad reactions to many typical and common meds... my doctors are understanding and prescribe what works best for me.  Thank God for that because the suffering is unecessary.  

I believe that finding the right doctor will help you immensely.  I have ditched the doctors that don't understand and won't understand where I am coming from.  I have my primary care physician and a radiation oncologist (he knows that I will not accept chemo or radiation but willingly helps me with any request I have... I am thankful for kind and sympathetic doctors).

Maybe once you get to Florida you will have more open-minded physicians that truly want to help you... not themselves.

Sending you positive energy and strength : )

Moxie

Orthobionomy

Hi Moxie,

I looked up Orthobionomy, not sure it would help my pain issues which I've had for the past 18 years.  But thank you.  I think I will try to find a doc that uses CBD oil in treatment.  It's worth a try.  I'd love to get away from the pharmaceuticals.  I just don't know if I can at this point.  I take the pain meds as directed and they work for the most part unless I over do.  The packing to move has me hurting more, and the anxiety of finding a place to live has me in a tizzy.  We won't be near Gainsville....we are looking at Spring Hill, Zepherhills, Dade City area.  About an hour outside of Tampa, so that's probably where I'll end up going for medical treatment.  I just have to wait and see at this point.

Wisteria83

LindaBaehr said:

Ugh

Sucks that you live in illegal states.  I hadn't used much in several years, but as soon as I went on chemo I got my prescription card.  I really calms my stomach issues.  As far as CBD is concerned, for my issues I have not had good luck with it.  I have used it orally and smoked it, and it has not helped my stomach or the neuropathy in my feet.  

As far as food is concerned, I still have the persistent diarrhea.  Not sure if it ever goes away.  I have eaten low carb for years, but I have found that if I add some rice and corn (chips!) into my diet, it seems to firm me up a bit.  I only eat one meal a day now on work days just so that the food doesn't keep me in the bathroom all day.  It took some getting used to, but it's fine now.  

Cannabis

We thought about moving back to CT where we are originally from, and i know I'd qualify for a card, but we are on a fixed income and the taxes in CT just keep going up and up and we simply can't afford to move back.  I think FL is on it's way to legalizing medical marijuana, it just might take a year or two.  Ideally, I find a pain doc who doesn't test for THC.

Wisteria83

Update

Nice to be back!  I've been avoiding this site...denial isn't just a river in Egypt, right?  But lately I've felt the need to come back to see what 's going on with folks and to complain about my ailments..can't do that at home, nobody really wants to hear it.

I'm so glad you had a pain free exam!  I hope my next one at the end of April is just as painless.  My PCP ordered some vaginal estrogen...it's the tiniest little pill on the end of a tiny applicator`seriously, smaller around than a birthday candle, and I couldn't get it in without using coconut oil and it still hurt, that's one of the reasons I asked my doc to refer me for pelvic floor rehab.  It was great while I was going and I learned a lot.  I couldn't believe how many muscles are "down there."  But I have exercises to do, and they've helped tremendously with the incontinence.  I'm really glad I went, but it got to be too expensive to continue that treatment.  I went to Soul Source for the dilators.  I bought the small set.  No cheap date, that's for sure, but worth it in the long run if I can be intimate with my husband again someday.  I'm not rushing into that.  

I changed pain docs after the fiasco I had with my previous one trying to get my meds on time...their office staff really sucked.  BUT, this new doc does check for THC, so that's no longer an option for me.

At my appointment a few days ago I asked him about the Marinol, and he wrote a script for it, and told me my urine test would show THC, but since I haven't used it since the beginnning of August, he's confident I won't be using it again...lol.  The problem is getting it filled.  My insurance company won't cover it unless the doc tells them that it's medically necessary.  So my docs office faxed them notice that it IS medically necessary due to my weight issues that are directly caused by my cancer treatment, so keeping paws crossed that it gets approved.  I won't know for a few days.  It's REALLY expensive.  The name brand runs around $800 a month and if my ins. approves the generic, it will be $81.  Still a lot of money, but since I barely eat that much in groceries in a month, it's probably worth it.

I'm so tired all the time.  When does the fatigue go away?  I'm just always wanting to nap and any kind of exertion just does me in.  My husband just woke up and told me I need to use the Boost again.  UGH.  That stuff.  I can STILL taste it!  But I have it so, in order to feel better, I'll start drinking it again, since I'm obviously not getting enough calories in my diet.

Hugs to you.

mp327

Wis

Thanks for the additional update.  I tried the vaginal estrogen for some time, but didn't notice much change with it.  I finally decided it wasn't worth the risk of causing additional cancers, so I discontinued it.  I hope you can get approval for the Marinol and that you can get some relief from your pain.  Fatigue--ugh!  I hear you!  I will go a couple of days and have the energy of a 20-year old, then the next day, I feel like a slug.  I do not like Boost either--tasting it always takes me back to when I was in treatment.  I have occasionally used a drink called Premier Protein, which I believe is available at Costco.  It tastes much better, IMO.  It's very high in protein, which I'm supposed to cut back on, due to my diagnosis of chronic kidney disease.  I miss my protein--I'm a bit of a junkie when it comes to protein, as I lift weights. 

Good luck with the packing and your move.  I hope being in Florida will lead you to the right doctor who can help you sort out all of your issues.  Please keep us posted when you can!

Wisteria83

mp327 said:

Wis

Thanks for the additional update.  I tried the vaginal estrogen for some time, but didn't notice much change with it.  I finally decided it wasn't worth the risk of causing additional cancers, so I discontinued it.  I hope you can get approval for the Marinol and that you can get some relief from your pain.  Fatigue--ugh!  I hear you!  I will go a couple of days and have the energy of a 20-year old, then the next day, I feel like a slug.  I do not like Boost either--tasting it always takes me back to when I was in treatment.  I have occasionally used a drink called Premier Protein, which I believe is available at Costco.  It tastes much better, IMO.  It's very high in protein, which I'm supposed to cut back on, due to my diagnosis of chronic kidney disease.  I miss my protein--I'm a bit of a junkie when it comes to protein, as I lift weights. 

Good luck with the packing and your move.  I hope being in Florida will lead you to the right doctor who can help you sort out all of your issues.  Please keep us posted when you can!

Marinol

FINALLY got the Marinol.  It took a week to get it approved.  Finally, in tears, I told the 6th or 7th person at my insurance co. that my primary care doc told me that the malnutrition was going to kill me if I didn't get a handle on it.  He put me on hold (again) and came back and told me I was approved for one year.  So Yay!  Now that I've tried it for a couple of days, all I feel is high...no appetite increase yet.  I'm hoping it kicks in.  I'm not crazy about the high feeling...I didn't like it in the 70's and I didn't like it last summer either when I tried it then...the real stuff not the pharmaceutical.  I'll stick with it though on the chance that it will work.

I'm doing my best...muddling along with the packing.  My husband is going to take a truckload down to FL and put it in storage...all our unnecessary things.  We'll keep the stuff we really need for the next month and a half and then move the rest out when it's time.  Trying to find a house down there, working with a realtor.  Prices are going up in FL too, so keeping my fingers crossed that we find something soon.  I don't want to have to move in with my son and his family with our two dogs and two cats.  That would be a total fiasco.  A lot of the problem is that the closing on this house is 5/21...the kid we are selling to is a Marine...we live near two bases. And he's in training and unavailble to close until then.  Nobody wants to sell us a house with the closing so far away.  We need the $$ from this house in order to buy another.  What a mess.

Oh well, life is always exciting for us...we've never had a smooth road, why expect one now, right?

Hugs to you

mp327

Wis

I hope everything works out for you with the move and I also hope the medication will kick in and give you the relief you need.  Please keep us posted!

Jane s

weight gain

Sweetie!  I read your post last night with great alarm.  You and I were in the same boat, weight wise, last year, at around 100 pounds.  I've managed to gain back 10 but you've lost 20 more!?  I want to come over there and help you, and while I'm there punch that f-ing pain doctor in the face.  Now that the Marinol shows THC in your blood anyway, you can use cannibis again?  Hopefully one or both will help.  

My doctor told me last year that I would not heal well if my body thought it was malnourished, I'm afraid that is what is happening to you, and of course you are exhausted!  I don't like those weight gain drinks either, and I'm trying to stay away from too much sugar so as not to feed the cancer, so I have been supplementing with protein and fat smoothies: banana, almond milk, plain yogurt, peanut butter, avocado and/or canola oil, whey protein powder, a bit of green powder I found at the health food store , and cinnamon.  It's not delicious so I drink it through a straw.  I totally get the no appetite thing, I've struggled with it my whole life, so I find it much easier to drink the calories.

I do like to eat cream of rice cereal.  It helps with the diarrhea issue and is easy to eat.  I actually bought some jars of baby food but they taste disgusting.  How do we feed that to our babies?  yuck...

I know moving and house hunting are super stressful, but please take it easy.  I finished treatment in Jan of last year and I have to nap if I try to stay up past 8 or 9.  Keep us posted on how you are doing.  I'm thinking about you! 

Jane

Wisteria83

Jane s said:

weight gain

Sweetie!  I read your post last night with great alarm.  You and I were in the same boat, weight wise, last year, at around 100 pounds.  I've managed to gain back 10 but you've lost 20 more!?  I want to come over there and help you, and while I'm there punch that f-ing pain doctor in the face.  Now that the Marinol shows THC in your blood anyway, you can use cannibis again?  Hopefully one or both will help.  

My doctor told me last year that I would not heal well if my body thought it was malnourished, I'm afraid that is what is happening to you, and of course you are exhausted!  I don't like those weight gain drinks either, and I'm trying to stay away from too much sugar so as not to feed the cancer, so I have been supplementing with protein and fat smoothies: banana, almond milk, plain yogurt, peanut butter, avocado and/or canola oil, whey protein powder, a bit of green powder I found at the health food store , and cinnamon.  It's not delicious so I drink it through a straw.  I totally get the no appetite thing, I've struggled with it my whole life, so I find it much easier to drink the calories.

I do like to eat cream of rice cereal.  It helps with the diarrhea issue and is easy to eat.  I actually bought some jars of baby food but they taste disgusting.  How do we feed that to our babies?  yuck...

I know moving and house hunting are super stressful, but please take it easy.  I finished treatment in Jan of last year and I have to nap if I try to stay up past 8 or 9.  Keep us posted on how you are doing.  I'm thinking about you! 

Jane

Still at 80 lbs.

Hi Jane!  Well, the Marinol isn't working.  I'm on the lowest possible dose, but it makes me feel high and dizzy so I'm pretty useless.  I see the pain doc again on 5/17.  He's supposed to give me a couple months post dated prescriptions.  I'm also seeing my rad onc tomorrow after a CT scan this afternoon, and my med onc and PCP on 5//8.

This will be the last time I see all these doctors before we move to FL on 5/21.  I need to find docs down there and that's pretty daunting.  My rad onc said he'd try to "hook me up with someone,"  I don't know about the others.  We did finally find a house in FL.  Spring Hill...it's about an hour north-west of Tampa.  I'm hoping to find local docs so I don't have to make that long trip.

I force myself to eat, but I have to be careful because some stuff makes me have to run to the bathroom.  I can handle pasta with white sauce, most meats, depending on how they are prepared...nothing fried, no salad or fruit.  Rice is ok too.  Sure makes meals boring which doesn't help the appetite.

I tried the smoothies, with yogurt and protein powder and bananas and icecream, but they still didn't put any pounds on me.  So I sorta gave up on them.  I need the Boost or Ensure, but can only tolerate the chocolate flavor.

I'm like you...going to bed early like an old person.  I try to stay up until 9 but usually don't make it, and I still nap every afternoon because I just have no energy.  Tomorrow will be one year since I finished treatment.  You'd think I'd be doing cartwheels at this point, but that's not happening.

Take care, talk to you soon.

Hugs, Wis

Jane s

How are you?

Hi Wis

I haven't been on here in a while, went on vacation, spent a week in Hawaii with my 11 year old.  I was nervous about my energy level because we arrived at what felt like 10 pm and I had to pick up the rental car and drive for an hour.  But, I rested as much as I could on the plane and it was fine.  Then I just scheduled all our activities for later in the day, while still going to bed early.    My son is used to my need to stay in bed until late morning.   When we got back I hosted a memorial for my dad and step mother, which was really nice but I've been exhausted ever since.

Anyway, I've been thinking about you and meaning to check in.  Let us know how the move went.  And drink some calories!  The weight will come back if you stick to it, I'm sure, it may take a while, though.

Hugs

Jane

Ouch_Ouch_Ouch

Wisteria83 said:

Update

Nice to be back!  I've been avoiding this site...denial isn't just a river in Egypt, right?  But lately I've felt the need to come back to see what 's going on with folks and to complain about my ailments..can't do that at home, nobody really wants to hear it.

I'm so glad you had a pain free exam!  I hope my next one at the end of April is just as painless.  My PCP ordered some vaginal estrogen...it's the tiniest little pill on the end of a tiny applicator`seriously, smaller around than a birthday candle, and I couldn't get it in without using coconut oil and it still hurt, that's one of the reasons I asked my doc to refer me for pelvic floor rehab.  It was great while I was going and I learned a lot.  I couldn't believe how many muscles are "down there."  But I have exercises to do, and they've helped tremendously with the incontinence.  I'm really glad I went, but it got to be too expensive to continue that treatment.  I went to Soul Source for the dilators.  I bought the small set.  No cheap date, that's for sure, but worth it in the long run if I can be intimate with my husband again someday.  I'm not rushing into that.  

I changed pain docs after the fiasco I had with my previous one trying to get my meds on time...their office staff really sucked.  BUT, this new doc does check for THC, so that's no longer an option for me.

At my appointment a few days ago I asked him about the Marinol, and he wrote a script for it, and told me my urine test would show THC, but since I haven't used it since the beginnning of August, he's confident I won't be using it again...lol.  The problem is getting it filled.  My insurance company won't cover it unless the doc tells them that it's medically necessary.  So my docs office faxed them notice that it IS medically necessary due to my weight issues that are directly caused by my cancer treatment, so keeping paws crossed that it gets approved.  I won't know for a few days.  It's REALLY expensive.  The name brand runs around $800 a month and if my ins. approves the generic, it will be $81.  Still a lot of money, but since I barely eat that much in groceries in a month, it's probably worth it.

I'm so tired all the time.  When does the fatigue go away?  I'm just always wanting to nap and any kind of exertion just does me in.  My husband just woke up and told me I need to use the Boost again.  UGH.  That stuff.  I can STILL taste it!  But I have it so, in order to feel better, I'll start drinking it again, since I'm obviously not getting enough calories in my diet.

Hugs to you.

Time takes time.

I was very tired for at least a year. Also, I would get weak and hungry and crash in a flash. I had to carry Boost with me at all times for those moments. (I lost more weight after treatment was over than during it.) I used that intense chocolate flavor Boost, which I actually liked.

All things being equal, you will recover bit by bit until you realize you've overcome those side-effects. Try to do excercise - lift soup cans, walk, take the stairs, etc. Try to read and do crossword puzzles, etc, to keep your memory sharp.

It can all be quite the process.

Wisteria83

Jane s said:

How are you?

Hi Wis

I haven't been on here in a while, went on vacation, spent a week in Hawaii with my 11 year old.  I was nervous about my energy level because we arrived at what felt like 10 pm and I had to pick up the rental car and drive for an hour.  But, I rested as much as I could on the plane and it was fine.  Then I just scheduled all our activities for later in the day, while still going to bed early.    My son is used to my need to stay in bed until late morning.   When we got back I hosted a memorial for my dad and step mother, which was really nice but I've been exhausted ever since.

Anyway, I've been thinking about you and meaning to check in.  Let us know how the move went.  And drink some calories!  The weight will come back if you stick to it, I'm sure, it may take a while, though.

Hugs

Jane

Almost moved in.

Hi Jane!  So nice to spend time in HI.  I lived there for a year when I was 18....such a long time ago.  Everything was expensive then, so I imagine it's only become worse since '79.

We drove down to FL last week and I'm still recovering.  I was in the car with my two Golden Retrievers, and my husband drove the 26' truck with the rest of our belongings and towed my Mini. It was a hell of a drive.  12 hours, and I still don't think I've recovered completely from it.  I had two bladder accidents because I couldn't get into the rest area bathroom in time.  It seems like once it starts, I just have no control.  Luckily there was a woman there who let me use her phone to call my husband (who was staying with the dogs)to bring me clean clothes.  I was mortified.  The second time, wasn't as bad, but still required a change of clothes, which I managed to do in the car.  Very embarrassing.

I'm surrounded by boxes still.  Most everything is put away, but downsizing has me wondering where to put things.  There is far less storage in this house, but it has a pool, so once it gets to the right temp, I'll be in there getting some exercise.  I still have a storage unit full of things from the first truckload down here.  All my crafting things are there, but my husband wants to make me a "She-Shed" so I can have a place of my own to work.  We already have the shed, it's just a matter of putting up drywall and painting it, and putting up my shelves and work area.  I'd really like to get back to making jewelry.  I miss being creative and productive.  All in good time, I guess.  I also want to get my bookshelves...3 big ones and all my books out of storage.  We'll need to rent a truck in order to do that.  The storage place is only 6 miles away.  What a difference it is here.  Coming back to civilization is like a culture shock.  No more target shooting in the back yard, but it's only a few minutes to get to the stores and that's really nice.  It used to be around 40 minutes just to get groceries.

I've left the house twice since we've been here.  Once to take my dogs to the vet. (Sadie had an allergic reaction to something here and got icky eyes). And yesterday, I went to the new pain management place to fill out paperwork, with proof of residency so I could get an appointment.  I'll see the new doc in a week. My pain doc in NC made note on EVERY office visit about my marijuana usage...calling it " recreational."  That pissed me off royally.  I did NOT take it recreationally, I took it to gain weight a couple of times.  I just hope that I'm not totally red-flagged, and that I can explain to the new doc the reason I used it, and that he will understand.

I'm going to do my best to get off these opioids.  I've been on them for years.  I don't think they actually even work anymore, I've been in a lot of pain from my neck and the sciatica still flares if I'm on my feet for very long.

Well, I've taken up enough of your time...I'm glad you had such a nice vacation. I still haven't gained weight, and my doc back in NC told me to take the Marinol at bedtime so I don't get the "high" feeling.  Please keep in touch!

Hugs to you,

Fondly, ~Wis 

mp327

Wis

So good to get an update from you and I'm glad you are now moved, although you're still trying to get settled apparently.  It takes time.  I hope things calm down and you can get back to a normal routine in your life.  Finding new doctors is always a challenge, but I hope you'll find good ones who will help you with your pain issues.  I've moved quite a few times and one of the worst parts of moving is starting all over with medical care.  Take care and I hope you get to enjoy that pool real soon!

Wisteria83

mp327 said:

Wis

So good to get an update from you and I'm glad you are now moved, although you're still trying to get settled apparently.  It takes time.  I hope things calm down and you can get back to a normal routine in your life.  Finding new doctors is always a challenge, but I hope you'll find good ones who will help you with your pain issues.  I've moved quite a few times and one of the worst parts of moving is starting all over with medical care.  Take care and I hope you get to enjoy that pool real soon!

Found a couple of great docs!

My first visit with my new pain doc went really well.  He is VERY pro cannabis, and is going to refer me to get a card.  He actually handed me a pamphlet about it and told me to google it.  He also sent me for a blood test and they took 7 big tubes and three small ones, so he tested me for just about everything.  Then he referred me to an oncologist and I just saw her yesterday.  She was amazing.  She asked me if I was tired...and my response was, "ALLTHE TIME!"  She said, no wonder, your cortisol level is very low.  They were able to get the bloodwork results before my next visit with the pain doc, and she ordered a prescription of hydrocortisone tabs, referred me to an endocrinologist and a GI doc, ordered a PET scan, mammogram...I'm a year past due for that.  She also had them draw blood there for a cancer test.  I can't remember what it was called right now....three letters.  No one has ever done that test on me before.  All of this is going to be done within the next two weeks before I see her again.  Both of these doctors were extremely thorough, and really put my mind at ease.  I feel really fortunate that I have these docs.

Wisteria83

Wisteria83 said:

Found a couple of great docs!

My first visit with my new pain doc went really well.  He is VERY pro cannabis, and is going to refer me to get a card.  He actually handed me a pamphlet about it and told me to google it.  He also sent me for a blood test and they took 7 big tubes and three small ones, so he tested me for just about everything.  Then he referred me to an oncologist and I just saw her yesterday.  She was amazing.  She asked me if I was tired...and my response was, "ALLTHE TIME!"  She said, no wonder, your cortisol level is very low.  They were able to get the bloodwork results before my next visit with the pain doc, and she ordered a prescription of hydrocortisone tabs, referred me to an endocrinologist and a GI doc, ordered a PET scan, mammogram...I'm a year past due for that.  She also had them draw blood there for a cancer test.  I can't remember what it was called right now....three letters.  No one has ever done that test on me before.  All of this is going to be done within the next two weeks before I see her again.  Both of these doctors were extremely thorough, and really put my mind at ease.  I feel really fortunate that I have these docs.

Forgot to mention

I also forgot to mention that the oncologist order a bone density test.  Never had one before.  Makes me wonder about my docs in NC.  Why this wasn't done before?  Guess I'll never know.  The next two weeks are full of dr. appointments and tests, but I'm really glad they are being thorough.

mp327

Wisteria83 said:

Forgot to mention

I also forgot to mention that the oncologist order a bone density test.  Never had one before.  Makes me wonder about my docs in NC.  Why this wasn't done before?  Guess I'll never know.  The next two weeks are full of dr. appointments and tests, but I'm really glad they are being thorough.

Wis

Good to get an update from you and how great to hear that you are happy with your new doctors.  I think the test you were referring to that has 3 letters is probably a CEA test--Carcinoembryonic Antigen.  It is a blood test used to detect certain types of cancers.  It does not, however, detect all types of cancers.  I hope everything turns out well for you--it sounds like you are in very good hands!

Jane s

Hurray for good doctors!

Hi there Wis!

I'm so glad to hear about the doctors you are seeing in Florida!  What a difference it makes.  Sounds like the move was pretty stressful, (but of course it was, that's how moving is) but now you've made it and things will get better, YOU will get better.  I'm glad to hear you will start crafting again, too.  I say a mantra to myself "you are cured, you can go rejoin the human race".  We need to take our lives back, this cancer treatment really just knocks you out of everything for so long!  Now that you are done with the move, I hope you can relax a bit, manage the pain, gain some weight, swim!  How wonderful to have a pool!  I'm really feeling good about everything you said. 

I apparently had a fissure, or a biopsy that wouldn't heal.  I was bleeding with every bm, and having pain and muscle spasms.  My doctor gave me Rectiv cream and it really helped.  I'm feeling so much better now.  I have energy.  Not as much as a normal person, or even as much as I used to have, but way more than I had a year or even 6 months ago.  My oncologist said that was a really good clinical indicator that the cancer is not coming back, or something to that effect, so I'm holding onto that.  I'm really trying to manifest healing.  I imagine the doctor telling me I'm cured, and how I will feel.  (It's a great feeling!)  I'll have a ct scan in the next few weeks and then meet with the oncologist on July 19.

I've been taking CBD capsules a friend gave me.  They are 20mg and supposed to be just CBD.  They get me high.  So, there is either THC in them, or CBD gets you high.  In my opinion, all the cannabis people are a bunch of stoners, so I think either or both are true!  Anyway, the high isn't that intense, and i'm trying to just sit with it and be ok with it.  I take them at night too, but then dream and realize I'm high in the dreams.  Sheesh.  ANyway, I don't know if it is helping with my appetite or not, but it is supposed to be anti inflammatory and who knows, it may cure cancer!  Ha.  

OK, take care, keep in touch.  Youa re in a good place being well taken care of, finally!  

hugs!

Jane

Jane s

picture

I was finally able to upload a picture!