I'm still here, with issues

Wisteria83

mp327 said:

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!

CEA test

Yep!  That's the one!  I see her again on 7/6, so I'll find out more then.  I'll also have the results from the PET.

Wisteria83

Jane s said:

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

CBD

I'm really glad you are getting some energy back and wish you could share some with me.  I've been trying to find out more about low Cortisol, and all I find is Addison's Disease.  I'm sure there will be more testing before that becomes a diagnosis for me.

I gained 2 lbs.  Might be because everytime I leave the house I make sure to stop at Wendy's to get a chocolate Frosty?  That's my latest fixation.

 As far as I know, the CBD oil you are taking must have THC in it to make you feel high.  Florida initially only allowed non-THC CBD oil but last year they included medical cannabis for certain ailments.  Smoking is still not allowed, but vaping the oil is, there are also sublingual tinctures and capsules, and there are different strains with different amounts of THC in them.  The dr. who recommends the card is the one who determines which you get.  And the names of them!  I was laughing my butt off.  One is called "Train Wreck" another is 9 lb. Hammer and some others are, Sunset, Sherbet, Dogwalker, Chem Dawg, Pineapple Express.  

Definitely a throwback to the 70's.

I've heard that CBD oil can cure cancer, but I wouldn't bet my life on it.  If it can make me gain weight, I'm all for it.  My husband, a retired police officer is all for it too.  He thinks Cannibis should be legal in all 50 states, and he's a Republican!

Monday I have the bone scan and I'm not expecting great results.  It's been 16 years or so since my hysterectomy and I haven't taken HRT, nor have I taken calcium or vitamin D supplements.  Combine that with the Radiation to my pelvis, and I feel like I'm just going to break a hip one of these days.  Oh, well.  I'll deal with that if it happens.  My dogs practically take me off my feet when I try to walk them.  NOW is the time to try to train them to walk on a leash, one at a time.  I only weigh about 3 lbs. more than they do.  They are nearly two and just like a cross between a toddler and a teenager.  Stubborn and thick headed.

TTYL~Hugs, Wis

Wisteria83

Jane s said:

picture

I was finally able to upload a picture!   

Picture

BTW...I love the pic!  You look amazing and healthy!

mp327

Wisteria83 said:

CEA test

Yep!  That's the one!  I see her again on 7/6, so I'll find out more then.  I'll also have the results from the PET.

Wis

I thought it probably was.  That test has been around a very long time, as the doctor I worked for back in the late 70's used to order that a lot on his patients.

LindaBaehr

Low Energy

My neurologist tested my B12, and I was seriously low.  I have been taking high doese for about 3 weeks, and it seems to be helping.  She said bowel/digestive system damage can cause bad absorbtion of B12 (radiation damage, Chrones, Colitis, etc.).  You might want to try it!

annie4145

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

When I read your post, you

When I read your post, you are the first one that I have seen that has a child my childrens' ages.  When you were first diagnosed, how much did you share with your 11 year old, and how did he or she react?  I have a 12 and 10 year old.  The 10 year old is at sleep away camp, which is good and is coming back in a week.  I have already said WAY to much in front of the 12 year old (in the week since I have been diagnosed, and he saw something on the computer before I even told him.)  But I don't know how much he has heard of the conversations between my husband and I, and how much he understands.  (I am at stage 2a).  He seems to be taking it in stride and doesn't appear too worried or anxious.  When I was at work the other day, he called me, and I thought he sounded sad.  I said, "I know you are worried and anxious, but everything is going to be OK".  He said, "No, I was just calling to see when you were coming home for lunch". (WOW, who was projecting there?? .... I guess me!).  My 10 year old is going to take it very hard.

 

 

Wisteria83

Update

Hi all,

My PET came back fine.  Saw the GI doc, and he seems ok.  He was pushing for a colonoscopy and endoscopy, but we sorta compromised and he had me take three pills all at once in case I had a parasite, then put me on Flagyl, a strong antibiotic for a week, then when I finished those he has me taking 50 billion probiotic and also lactaid with EVERYTHING I eat...meals or snacks.  The flagyl constipated me and I haven't had diarrhea since!  Then the Endocrinologist had me get another blood test, this time doing more in depth study of thyroid hormones, and my TSH is 5 times what it should be, so she ordered a thyroid med too.  I spoke with her but I'm still confused about how it all works.  I thought that HypOthyroid caused weight gain and she said not necessarily.  Still 80 lbs. or there abouts.  I got up to 83 at one point but honestly, I think that was at the worst of the constipation, and my lowest went to 78.  I don't see anyone else until next week.  Oh, and I also had a home sleep study done and have another appointment with that pulmonary doc on the 8th I think. That's all I do...take tests and pills and see dr.s and sleep....and drink Boost and try to eat as much as I can.  I don't know what else to do.  My pain doc wanted me to start DHEA, but Endo said hold off until she does more testing. ACHT I think.  Foggy headed in the worst way. My dogs escaped out the front door and I had to chase them, got a hold of one who knocked me over and dragged me, so got pretty banged up.  Whoever said, "The bigger they are, the harder they fall," didn't know what a 78lb dog can do to a 80 lb. person. 

The bone test came back as osteoporosis, which I expected, so I'm also on 2000 per day of calcium and vitamin D, had an infusion of Reclast that I'm supposed to do annually.  I had that done in the chemo room at the cancer center so it brought back some lousy memories.

So about the only thing I don't have is cancer...and that's the good thing.  Trying to stay positive with everything else but it's getting more and more difficult.

mp327

Wis

While my weight isn't as low as yours, I only weigh in at 95 pounds on my scale at home.  Before cancer, I weighed in around 110 pounds.  I eat pretty much whatever I want (as long as my guts can handle it) and sometimes will tip the scales a couple of pounds heavier, but then it goes away and I'm right back to 95 a couple days later.  I really think that it's due to malabsorption syndrome and I'm wondering if that is going on with you too, causing your inability to gain weight.  Combine that with thyroid problems and that might explain your situation.  I don't know, just speculating.  But for sure, radiation treatment to the intestines can cause some people to have malabsorption issues.  I'm pretty sure my intestines do not absorb fats well, which are the part of human diets that cause weight gain.  Not to get gross here, but if I eat something high in fat, such as french fries or quacamole, my stools will be quite greasy afterwards, like my body did not absorb any of the fat at all. 

I also have osteoporosis, but fortunately in my case, my score on my most recent bone density scan showed improvement, so my doctor agreed to hold off on the meds.  I really don't wish to take them if I don't have to, due to possible side effects. 

You and I could have a real interesting sit-down conversation about our situations, which are quite similar in these two ways.  I do hope you and your doctors can figure all of this out and that you can begin to feel better and put on some weight.  I'm so happy you got good news on the PET scan and that you are not dealing with that worry along with everything else.  Please keep us posted and know that I wish you all the very best!

Wisteria83

mp327 said:

Wis

While my weight isn't as low as yours, I only weigh in at 95 pounds on my scale at home.  Before cancer, I weighed in around 110 pounds.  I eat pretty much whatever I want (as long as my guts can handle it) and sometimes will tip the scales a couple of pounds heavier, but then it goes away and I'm right back to 95 a couple days later.  I really think that it's due to malabsorption syndrome and I'm wondering if that is going on with you too, causing your inability to gain weight.  Combine that with thyroid problems and that might explain your situation.  I don't know, just speculating.  But for sure, radiation treatment to the intestines can cause some people to have malabsorption issues.  I'm pretty sure my intestines do not absorb fats well, which are the part of human diets that cause weight gain.  Not to get gross here, but if I eat something high in fat, such as french fries or quacamole, my stools will be quite greasy afterwards, like my body did not absorb any of the fat at all. 

I also have osteoporosis, but fortunately in my case, my score on my most recent bone density scan showed improvement, so my doctor agreed to hold off on the meds.  I really don't wish to take them if I don't have to, due to possible side effects. 

You and I could have a real interesting sit-down conversation about our situations, which are quite similar in these two ways.  I do hope you and your doctors can figure all of this out and that you can begin to feel better and put on some weight.  I'm so happy you got good news on the PET scan and that you are not dealing with that worry along with everything else.  Please keep us posted and know that I wish you all the very best!

Yes, we sure could have a real interesting "sit down"

Thanks for getting back so fast...These hormone issues are apparently what's causing the extreme fatigue.  Super dry hair and skin, zero appetite.  

How were you diagnosed with malabsorption?  GI doc wanted me to do a stool collection, so I picked up all the items needed at Quest.  I haven't done it because I haven't had diarrhea...not that I'm complaining at all.  I can't do fried foods either.  Lots of floaters and mucus if I do. (sorry about that grossness)  I really thought that the radiation was supposed to be confined to the tumor, but I guess that the initial doses hit everywhere to include the lymph nodes, and then they directed it to anus and vagina.  If we lived near each other we could surely have a few good heart to hearts about all this.

I really thought I'd be feeling SO much better than I do over a year after treatment ended.  I'm really, really happy about the cancer being gone, but I don't know what a colonoscopy and endoscopy at this point would accomplish, considering the one and only time I had those done, NOTHING showed up except 3 polyps in my colon because the doc flew right past my tumor without pausing.  I've had two anoscopies and both were clear.  Now I'm due for another and I don't know which doc is supposed to do it.

I'm hoping that the hydrocortisone will start putting lbs on me.  Both of my sisters have Graves Disease and since they were diagnosed in their 40's and had their thyroids radiated, they are both on the same thyroid med as I am, but at a much higher dose.  I read that if you have a family history of thyroid problems and if you have one endocrine issue, chances are higher to have another.  But everything I've read doesn't make a lot of sense to me.  More foggy brain to add to what I already have.  I don't understand the numbers and what they mean.  It's all very confusing to me, and even though I've had the docs explain it, it's like it goes in one ear and right out the other and I'm unable to explain to my husband what's happening with me.  It's frustrating since I used to be able to concentrate easily and now I can't.

 

mp327

Wis

Yes, I would love to meet you sometime.  Now that you're in Florida, if I ever take a vacation down there, I'll let you know ahead of time and perhaps we can get together for a chat. 

As for the malabsorption syndrome, I pretty much diagnosed myself.  I began having some symptoms that led me to Dr. Google and everything pointed to malabsorption--weight loss or inability to gain weight, stools that float, are pale in color, and greasy.  That was a few years ago and I will say that I seem to no longer be having those symptoms.  I'm not sure what that means, whether my intestines have repaired themselves or what, but I still don't gain weight.  Sorry, not trying to be gross--just don't know how else to explain it.  I have talked to my doctor about all of this and she agreed that it could be malabsorption.  I also used to often experience a sloughing of intestinal lining with BM's, evidenced by whitish, skin-like material.  That still happens, but only occasionally.

It's good that your diarrhea has ceased, but I hope you can get that stool collection done to see if that points to anything.  Your inability to gain weight is concerning. 

As for your doctor missing your tumor on the colonoscopy, this happens SO often.  It's my understanding that in order to view the anal canal during this exam, the doctor must turn the scope backwards and unfortunately, many doctors do not do this, leading to missed cases of anal cancer.  My doctor knew at the time of my first scope that I had an anal tumor, so she took pics of it and also got the biopsy specimen at that time.  If you have a colorectal doctor in your new location, I would think that he/she would be the logical one to do your follow-up anoscopies. 

I hope you can get the thyroid issues all figured out.  That is curious that Graves Disease runs in your family.  I hope the hydrocortisone will help you gain some weight.  As for foggy brain, I have had that so many times, especially at doctor's appointments!  I think part of me just wants to tune out what they are saying to avoid hearing anything bad.  I recently had my eyes tested for new glasses and had a thorough exam, at which time the doctor told me I had either macular degeneration or glaucoma.  It gobsmacked me so much, I couldn't remember which he said and had to stop back in a few days later and ask for clarification.  Fortunately, I guess, it is early, early stage glaucoma, which is the better of the two to have because it's treatable.  I'm just a mess from my head to my toes! 

Take care and please keep us posted on how you're doing.  I hope you can get some answers!

Jane s

Yay for clean Pet scan!

Hi Wis

I'm so glad your Pet scan was clear, with all the other problems you are having, it really is the cancer that is the worst, so hurray it's staying away!  I had a clear ct scan last week, and spoke to my doctor who said that the main thing he's concerned about is how I feel.  if I feel good,that's the best sign that the cancer is gone.  He also said he highly doubts it will come back.  It was lovely to hear.  Since you and I are on the same timeline, I'd say the same is true for you! 

Yes, the CBD tablets I have are 1/20 THC/CBD.  I have such a low tolerance even a tiny bit of THC will make me high.  Lucky me...

Be careful with those dogs, my goodness!  And are you swimming? 

xo

Jane

Ottawamarc1234

Post 39 Days....Still Suffering With Damn Fissure...

...and itch after pooing and bathing. Pooing doesnt hurt anymore...still "flat" not "round"...does that every "return to normal"? Or does that take longer? Keeping my stools soft with Psyliium powder in OJ or Cranberry Juice. Taking luke warm baths(no epsom salts or other things straight water)..Using various creams for the 'itch from hell' and still suffering but avoiding Oxycodone all together now..extra strength Tylenol thats all. Advil cannot use cause of stomach issues and other things no.

Jane s

update?

Hi Wis, wondering how youa re doing?  I haven't logged on in a while but I've been thinking of you.  Hope you are doing well and settling in.  I'm the same, had an anoscopy scheduled last week but the doctor postponed it until next month.  Argh.

 

hugs

Jane

Jane s

Ottawamarc1234 said:

Post 39 Days....Still Suffering With Damn Fissure...

...and itch after pooing and bathing. Pooing doesnt hurt anymore...still "flat" not "round"...does that every "return to normal"? Or does that take longer? Keeping my stools soft with Psyliium powder in OJ or Cranberry Juice. Taking luke warm baths(no epsom salts or other things straight water)..Using various creams for the 'itch from hell' and still suffering but avoiding Oxycodone all together now..extra strength Tylenol thats all. Advil cannot use cause of stomach issues and other things no.

coconut oil

Hi, I had a fissure and put coconut oil in the sitz bath and it seemed to help a lot.  Just don't dump it down the drain or toilet, you could cause plumbing issues...