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Just wanted to say hello.. I'm new on here :)

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

Hey everyone...

I finally got around to signing up for this site. I'm 22, from ohio, and I was diagnosed with Papillary Thyroid Cancer back in Aug of 09.. had my surgery the same month.. and then had my RAI in December 09. I've had a million and one side effects and "medical mishaps" and currently still feel horrible. My doctors are trying to figure it all out. LOOOVE going to the cleveland clinic! (sarcasm of course lol) if anyone is traveling up here and needs a tour guide around the facility just let me know!! lol

I just graduated from OSU.. needed to take a year off and am currently applying to grad schools for occupational therapy. I love the kids I work for, they all have different degrees of special needs. Some days my body gets spent really quickly, but it's the best job in the world :) One of my girls with cerebral palsy actually helped me brave through my first surgery by showing me all her scars from her back surgeries. And now any time I complain about the loveeeely scar that is permanently on my neck she yells at me and shakes her finger. She's definitely my role model through it all :)

Alright I'm gonna stop rambling now :) I just wanted to thank all of you in advance who post on this site. I've already read through some of your posts and probably cried more than I like to admit lol because it's soooo nice to have people who get it without ever meeting me or knowing my story. I look forward to getting to know you!

-Julie

T.
Posts: 1
Joined: Jul 2011

Hello, my name is Tom and I am also new on here and was just looking through posts on here and saw your's. I am sorry to hear about your condition. I am 29 and last year was life- flighted from my home in Montana to Portland, Oregon to have my right lung removed before recieving treatment for leukemia. It was completly out of the blue, wasn't feeling well and went to the Doc and they just never let me go home. I stayed in Kalispell, MT for a week while they were figuring out what was wrong with me. They said my lung was fine and then I got to Oregon (OHSU) and the first day I was here they said they needed to take the lung! Then We started work on my treatment. I had to have a bone marrow transplant and then a few months later I came down with a case of throat cancer and had to have that removed. On top of all that I have been diagnosed with Fanconi Anemia: A super rare blood disease that I was born with, it has no know cure and is responsible for my early on sets with the cancers. I am going home to visit on Friday for the first time in a year. Hang in there and keep a positive attitude. You probably hear that a lot, things will get better and easier.

Peace,
-Tom

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Hey there, just wanted to welcome you to the boards. Sorry to meet under these circumstances, but you will find a lot of friends here and answers to any questions you may have.

As for the Cleveland Clinic? Absolutely love the doctors at the Taussig Cancer Center (Dr. Joung Lee especially). Hated having to navigate through the center and the hurry-up-and-wait attitude of having more than 1 appt per day. Got a bit hectic at times. But like I said, love the doctors and their staff.

I have multiple meningiomas that have spread to my sinuses, optic nerve, optic nerve chiasm, carotid artery and skull base. Had brain surgery, 2 sinus surgeries and traditional radiation therapy all at the Clinic while we lived in North Canton at the time. My tumors came back in 2005 and were upgraded to brain cancer due to the location and inoperability of some of the tumors. Am awaiting more sinus surgery in September and the rest of it (tumors came back where they had already been resected) I am on W&W (watch and wait). Because of the radiation therapy, it almost destroyed my hypothalmus, including my pituitary and thyroid. Have hypothyroidism and will have to be on Synthroid the rest of my life. Luckily, it is the lowest dose possible and has almost no side effects. Unfortunately, the radiation also caused problems with my adrenal glands and I am also now on Prednisone, again low dose, but also again, probably lifetime.

Again, welcome to the boards and feel free to ask away. Remember, there are no stupid questions, just unasked ones.

Peace.
Teresa

nasher
Posts: 507
Joined: Apr 2010

Hope to read more post by everyone.

I am curious about some of the side effects that you have been dealing with and what "medical mishaps".

I get to go to 4 different medical areas normally + "local specialists"

I have gotten to the point that my Scar is a badge and not something I try to hide.

Please ramble all you want... I honestly hope some people’s posts become longer than mine.

In case you haven’t read my story (wow its back on page 5) http://csn.cancer.org/node/204377

I am a 40 year old male.

as for tours of clinics if anyone needs directions for Harrison Bremerton, Naval Hospital Bremerton, or Madigan Army Hospital I can probably give you tours or directions.

I agree with Teresa , the only stupid question is the one you didn't ask.

Don’t worry if someone else has asked the same question if we will answer everything as many times as we can to help each other.

I keep getting depressed on what I used to be able to do 2 years ago.

I have lots of local role models from my local cancer support group, and I get to see scars of all of my friends who have had other major surgeries.

I have found out that "Healthy people" just don’t understand but anyone who has gone through a surgery or 10 or... defiantly can understand.

Again I would love to hear/read your story, and go ahead and rant when the doctors tell you something silly like "it’s a good cancer" or "well all your labs look normal", and I love it when reading my medical record it says things like an interesting case of.

Hope to hear from you all much more
Oh and please forgive me when I forget to run my posts through a spellchecker.

Craig

sunnyaz
Posts: 582
Joined: Oct 2010

Glad to have you on the boards. I am Julie also. I am able to give anyone a tour of the University of Arizona Medical Center and UMC Cancer Center North. Great doctors here in Sunny Arizona! I am a Papillary Thyroid Cancer Survivor with metastasis to the Lymph nodes. Three surgeries and two rounds of RAI. No longer RAI avid. Glad to have you both.
Blessings,
Julie-SunnyAZ

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

Welcome Tom!! You certainly give me reason to stop all my complaining.. while I was away at college for most of the time I was never moved to another state for treatments!! goodness.. I hope you're doing at least little better now :)

Hi Teresa! So glad to see someone from my area :) I do have a quick question for you.. do you attend any cancer support groups or go to a really good cancer psychologist. I'm looking for one in our area, but I don't want to waste my time on someone who just repeats back what I say.. that technique does not work for me one bit lol

Hi Craig! How much time do you have?? lol Alright...

It took a year and a half for any doctor to take me seriously. I literally ripped up a script in an ER doctors face because I went in with a fever, and convulsions and all he gave me as an antibiotic (like all the rest). I had two severe thyroid storms that sent me to the hospital.. they were really scary because I didn't even know I had thyroid problems yet and of course the ER docs had no idea what was going on either. Both times I have no idea what they did because I was blacking in and out and I was alone so who knows what they did in order to kick me out of a bed. Also, I slept through my entire sophomore year of undergrad... pretty sure I only left my dorm room to leave to go home for a doctor appointment. Lost all my newly made friends from freshman year so I had no one to turn to most of the time. Then once I new I had hyperthyroidism, i fought with an incompetent endocrinologist at the OSU medical center (I went to OSU) who 1. never knew which medicine I was on, let alone the dose I was taking, 2. took literally a week to get a hold of her every time I called, and 3. Told me I had Grave's Disease (without explaining it and I had a panic attack on the phone with my mom because I was so confused and afraid I was dying or something), but then later she recanted her diagnosis, and then reinstated it. <

Then finally, I switched doctors and found my awesome endo at the cleveland clinic who on my first appointment, talked over my year and a half story without rolling his eyes or belittling what I was saying, did an ultrasound, and biopsy.. ALL IN THE SAME DAY! my OSU doc wanted to wait 6 weeks before even giving me a biopsy (which on her watch was like 3 months later). Anyways... found out I needed surgery, had the surgery, and that's when the fun really started.

The cancer metastasized to my lymph nodes so the ones on my left side were removed along with my lovely thyroid. During surgery my endo surgeon accidentally removed two parathyroid glands so I was on a lot of calcium and continue to have a serious calcium deficiency almost 2 years later. A week, maybe not even after my surgery my dermabond bandage started pussing (not a good sign as you all probably know lol) so I went back to the clinic prob like 4 times that week and apparently I was allergic to the adhesive and I'm even allergic to steri-strips and pretty much any type of glue a doc office has (yes even the hypoallergenic). So because they had to rip off the dermabond my scar got super screwed up and it was disgusting.. literally wore scarves every day. Then I was back in the hospital like 2 weeks after because my calcium plummeted and my body was freaking out and my heart was beating weird.. went to the ER they gave me calcium as soon as they could and hooked me up to a heart monitor and all was good. Two nights later I was back in the same ER for the same reason although this time was not a smooth visit. The doc wouldn't give me an IV because apparently my levels weren't low enough for his liking and decided to trick me with a bag of saline (sugar water= a joke and it's not like i was asking for pain meds or anything I just wanted calcium!!!) I told my mom to read the bag.. dextrose something something.. and I flipped out and started screaming from my bed some not so PG words and saying that he should have his license revoked because he is a piece of you know what doctor.. etc. etc. you get the idea. lol So finally he gave me my calcium, but because I had been pumped with freaking sugar water my body was so diluted that the calcium didn't absorb and I left there worse than I came in.. I couldn't walk (they wheeled me out in a wheel chair) and my hands were in complete tetany (I couldn't move them at all) Needless to say.. I refuse to go back there ever again. I told my parents even if I'm dying, if I wake up in that hospital I will get up and walk out lol. Gosh.. makes me angry just typing it! lol I had my radioactive iodine treatment and they had to give me a higher than normal dose and I'm pretty sure it fried my brain because of some of the things I've read on here about people's memory and attention, etc. etc. I definitely have major issues with that now.

okkkk I'm pretty sure I probably left some stuff out.. sometimes I forget parts.. blamin' it on my RAI haha so skipping ahead a little, I got my scar fixed via plastic surgery and one huge fight with the insurance company this past december so now my neck doesn't look like someone hacked me up. I basically slept the majority of my undergrad experience away. But the big thing is that I'm still not feeling well at all and every time I get a blood test my levels are crazy. I stay on the same dose of medicine and one time I'll be Hypo, the next hyper.. it's ridiculous. My low calcium drives me nuts and I'm having bad muscle pains now so much so it's hard to walk some days or pick things up. So now since I'm back home after graduation they are looking into other causes as to why I'm still not feeling well. I'm still extremelllllllllly tired all the time and I just can't function. I thought after all my treatments I was supposed to feel normal again.. so much for that. So basically, I'm visiting every doctor my parents can think of to try and make me feel better. I of course see my endocrinologist every 6 months, but get a blood test every 2, I see a nutritionist, a sleep doctor, I'm looking for a psychologist, and looking for a chiropractor to see if maybe they can help me with my muscle pain. They've tested me for lupus, arthritis, and all those autoimmune disorders, but that test came back negative (which is awesome, yet not, because I hate this guessing game) So basically I just don't know what to do anymore and I feel like I'm going to have to live the rest of my life feeling like crap every single day.

I know it may not seem as intense as all your concrete diagnoses and I'm not trying to whine I promise, but having all these issues and learning on my own how to be my own advocate when I was only 20 years old is just too much for me to handle. I'm just really confused about what my body is doing and I just wish I could live my normal life again :/

3boys_mom
Posts: 47
Joined: Jun 2011

Your story is unreal. But I just want to say--good for you for being so "feisty"! I long ago determined that doctors are human, and some of them are bad doctors. I've been a strong advocate for myself and my sons for years. My oldest is near 13 and he had a recent run to the ER for suspected appendicitis (it wasn't). We were instructed to go home and then come back to the ER 6 hours later--which we did. When they wanted to give my son an IV for dehydration my son questioned it. (Especially since his urine sample was still in the room!) Then the nurse tried to come up with other reasons for the IV. The doctor finally came in and I was such a proud mom--my boy asked intelligent questions and when the doctor said that the IV could be a conduit for pain meds, but son asked him, "but if this is gas, like you think, will the pain meds help?" I wish I had a picture of the doctors face at that moment. The man had been "out logiced" by a 12 year old! We were sent home with gas meds. He was fine the next morning. However, he did catch scabies from the hospital (you should have seen the sheet they had him on!)--makes me even more glad we didn't allow him to be "poked".

Sorry, a bit off topic, but just wanted to say way to go! Good luck with your dx.

Sarah

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

I would have been so proud of my son too! well if I had a son.. let alone any kids (but you get my point haha!) Seriously, it's bad when I've taken a couple medical classes and can tell a doctor off, but then a 12 year old questions something that's just plain ridiculous.. not to mention the scabies.. that's just crazy! Thanks for applauding me though.. most people roll their eyes at me, but i don't care, it's my body for goodness sake! lol I guess my grandma had a run in with a horrible doctor recently and she keeps telling me she wishes I would have went with her (I usually do because she's from germany and doesn't really understand much what they say), but it's probably better I didn't I would have went crazy on him. Yes they are human, and everyone makes mistakes, but when they don't admit those mistakes then it's a problem with me, ya know.

Alright I'm done rambling lol

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

on the longest post lol

nasher
Posts: 507
Joined: Apr 2010

You may have won longest post on this thread but …

Ok let’s see what I can go over. I had just almost finished my response when we lost power so I’m starting from scratch so expect my response to be a bit jumbled.

Big concern for EVERYONE who gets prescribed anti-biotics. Make sure you get a list of every one they prescribe you and keep it for 2 years because some of the anti-biotic don’t work anywhere near as good if they are used too often (and each one has a different time between how often you can use them).

Ok for the IV solution they put you on
----- cut and paste -----
key ingredients-sodium, dextrose, and multiple electrolytes-which are available in various combinations. Let's look at sodium-containing fluids next.
Salt of the earth
Sodium-containing fluids range from hypotonic (0.45% sodium chloride solution) to isotonic (0.9% sodium chloride solution) to hypertonic (5% dextrose in 0.9% sodium chloride solution). Along with sodium, these fluids provide chloride and free water; some are available in combination with dextrose.
----- end paste ----
Ok they probably put you on a standard IV saline with dextrose. There are many reasons for this the main one is if they expect to give you any meds/supplements/ anti-biotics/nutritional support/plasma or blood transfusion they will normally start a standard IV with dextrose so they can put whatever they want to without having to set up an IV when they need it.
Next point
A lot of us they do not know what is ALL wrong with us but they try to assume its all related
Right now I am setup for appointments for
Physical therapy
Nutrition
Vertigo
Sleep apnea and other sleep disorders
Depression
Unspecified neurological disorder “love it when they use terms like that”
Various vitamin and mineral deficiencies
Vision checks (seems my thyroid messed with my vision some before it was taken out)
Multiple series of blood tests including testosterone and estrogen (yes there are base levels for both in both sexes)
I am also up for my military 5 year physical as well as final retirement physical (20 years navy)
And that’s just the things they don’t think they have under control

Oh if you haven’t make sure you keep a medical card listing EVERY surgery and EVERY allergy/medical alert (like apparently for you almost every type of glue out there) and any vitamins supplements and herbal remedies. Trust me it makes the check-in to any dr visit much quicker.

I defiantly understand your frustration with the “wait and see approach” they knew there was something wrong with my thyroid 2 Dec 2009. Didn’t do anything but blood work till mid January when they did a FNA (came back inconclusive) and if I did not have issues with breathing do to the thyroid goiter pressing against my wind pipe (7.1 cm goiter) they would have waited much longer before removing ½ my thyroid (22 Feb 2010) then 2 weeks later they got the report I had 2 types of thyroid cancer and they took out the rest of my thyroid early march 2010. They would not have found out about the thyroid issue till later if they were not trying to figure why I was rapidly losing hearing (another issue).
“During surgery my endo surgeon accidentally removed two parathyroid glands” I honestly believe it was probably the same reason they removed 2 of my parathyroid glands (1 per surgery) the parathyroid’s were inside the thyroid tissue and to leave them they would probably have added 2+ hours to surgery time and left a whole lot of thyroid tissue.
Yes I am on large calcium and vitamin d supplements just to keep myself in the low range. On that note be sure you have some calcium chews or tumms or such with you at all times so if you run into a sudden calcium drop issue you can at least start to supplement while on the way to the DR or ER.

I was extremely lucky with my scar it looks nice for a scar the reason is my Dr had OCD beyond belief so my scar is actually about ½ an inch longer that it should have been but she wanted to even it out so it looked more symmetrical.
With your blood tests going hypo and hyper I am wondering if you are making sure you are not taking anything with your synthroid.
You should not have anything except plain water 4 hours before to at least 1 hour after taking synthroid and the less water the better to prevent flushing it through your system.
Also some minerals like Iron should not be taken within 2 hours of synthroid or it will cause low absorption of the synthroid.
As far as back pains and such I use a hot tub set to therapeutic levels (97-99F) that way I can soak for an hour or longer if needed to alleviate pain.
The only person who things I am normal is my psychiatrist (seriously). I don’t know what normal is any more.
On your blood tests have they tested for fT3 (to make sure the synthroid is being converted to t3 as your body needs it)
You will always be learning about being your own advocate trust me I learn something new every week at least.

As far as time to help other people out I have as much time as I physically/mentally can do cause when I help others with thyroid issues or other issues I am learning myself.

As far as medical appointments I have at least 10 more scheduled this month and expect over 30 in august cause they are doing all my end of naval service medical exams then the Veterans administration has to do a ton more to figure out how disabled I am. And they need to do all the tests all over again to see present condition. I hear a normally healthy person goes through 10+ exams so I expect a lot more.

Don’t worry about whining or ranting or crying or whatever we all need some of that I know I go on rants daily.

Another quote you had was “they were really scary because I didn't even know I had thyroid problems yet and of course the ER docs had no idea what was going on either. Both times I have no idea what they did because I was blacking in and out and I was alone so who knows what they did in order to kick me out of a bed”
If you go back to the hospital medical records area you can get a copy of all your record medical visits and labs and ER visits (for a small nominal fee) and figure out how they justified releasing you.

I defiantly understand about the problems finding a good endo the one I go to is 1-2 hour drive away (traffic) even though there are at least 20 in the local area (30 min or less) that my medical will cover. Including at least 1 who is a *%)(@$*#@^ … um.. yea you know.
As far as ER’s it’s the same situation for both me and my wife
The one I am supposed to go to (4 min drive max) I will not go to most the time and I will never take my wife to cause for most of the time what they will do is stabilize my wife and tell her to get to Madigan (1-2 hour drive depending on traffic). So unless it is something that I know that cannot wait the drive plus waiting room time we drive to Madigan. Yes there are lots of other ER’s between the close one and the one we go to and our medical will grudgingly pay for the visit they do not have access to our medical records unless we bring out own copies ourselves and combined out two medical records are 2 feet tall.

If you do not have a support group find one they help.

craig

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

Yea.. I've taken medical classes for my undergrad major, so I know semi-why they hooked me up to the saline.. but they never should have. I came in with specific directions from my doctor what to do.. they should have just given me calcium.

Also, with regards to my synthroid... yea I take it at 6am regularly so it doesn't interfere with anything. I have no idea what's going on.

The medical card idea is a great idea. We have it all written down, but not conveniently like a card. Thanks for the info :)

Sorry for the short post.. I'm not feeling well at all tonight. Story of my life.

Thanks for all the info :)

dedephy
Posts: 1
Joined: Jul 2011

I am new on here as well. I was actually puttering on the internet at work, and discovered this site. I never knew about it, but was thrilled to find a discussion board. My name is Stephanie, and I was diagnosed with papillary thyroid ca in 2008. Two weeks after my 30th birthday. I have had 3 recurrences and am looking at a possible 4th. Have had 4 neck dissections and 3 RAI treatments. I am really glad to find an outlet to vent my frustration as well as support!!! Glad to know that this site exists!

wife229
Posts: 3
Joined: Jul 2011

I am new on here as well. I was looking for an outlet to vent I guess. I was diagnosed in 2000 with papillary thyroid cancer. Have had Two surgeries and Two RAI treatments with no more of those. I currently have two nodules that are cancer that have returned we are treating them with synthroid and cytomel. Seems to work pretty good for me. I have Great Drs at MD Anderson in Houston and am Pleased with that. This past Christmas Eve my husband became ill and had and emergency survey and was diagnosed with colon cancer so the last 7 months have been busy for us in the cancer world.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Julie,

Wow......

I no longer live in the northern Ohio area (now in Philadelphia area) but I found my psychologist through a previous therapist I had in Columbus. I found my therapist here through my therapist I had in Charlotte.

That said, I would check with a patient representative at the Clinic or the Taussig Center. Another place to check would be on-line. Just make sure they are licensed and are qualified in chronic or terminal illness. My therapist is licensed in chronic illness and marriage counseling (the 2 DO go hand in hand) and both my husband and I find it to be quite beneficial.

As for lack of energy, medicines can sometimes make you tired, sleepy or just good ole fashioned sluggish. Also not getting enough sleep at night can make you tired as well.

As for normal? That is an issue many of us are struggling with, including myself. It has taken me forever (and I do mean that) to realize that I have a normal, it's just different than the one I was used to. But I found that I with the exception of the tests, exams, treatment, etc. I like my new normal. I actually have time to take care of what is really important to me, namely my husband. Our children are grown so I can focus on staying well, healthy and with a positive attitude (most of the time).

Good luck!

Teresa

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

Teresa - yesterday I did some online searches and I found this lady at the cleveland clinic who specializes in basically everything that has been wrong with me in the past or could potentially be wrong with me (i.e. they are looking into me having fibromyalgia) so thanks so much for the advice on getting someone who specializes in chronic illness.. cancer.. etc. It's so obvious that I would need someone like that, but I never even thought about it. The only down side to this lady is that she's on vacation for 2 and a half weeks and then I won't be able to get in to see her until sometime in September, but I feel like she may be worth the wait.

Craig - I told my mom about your medical card idea.. and leave it to a mom she's already got a sheet typed up with everything that's happened to me hahaha less work on my part! gotta love my mom :)

nasher
Posts: 507
Joined: Apr 2010

@Julie - if you are just on Synthroid you should talk to your doctor to see if they will perscribe a synthroid/Cytomel combination it really helps with energy.

yea when i started the medical card idea it was about the size of a credit card ... its now just over 1 page of paper but it still helps

@dedephy - hi Stephanie since it sounds like you have had multiple re-occourances with papillary it sounds like you are probably have B-raf mutation. Sunnyaz will probably be able to help with questions in that area more than I will ask any questions and vent all you want it helps trust me.

Teresa- the idea of a therapist for chronic illness and marriage counceling sounds like a wonderfull idea I wish I could find one local to me.

I have not gotten to a stable enough point to call a new normal yet if i could just have a few of my medical issues I am slowly finding out things I can do that dont agrivate any of my conditions that i enjoy so I guess im working towards normal

Craig

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