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Freaking Out Waiting on Answers

mranxiety
Posts: 17
Joined: Sep 2020

Hi everyone,

Hoping I can get some feedback from knowledgeable peers.  37 male nonsmoker.  Super healthy and active.  Noticed 2 palpable superclaviclar nodes on right side about 3 weeks ago.  Could have been there longer but unsure.  GP ran blood tests and showed normal WBC but lymphocytes high.  Sent me for an ultrasound which came back normal.  1.3 was the biggest node and other .5.  GP still referred me to hematologist.   Took a new CBC and lymphocytes and all else 100% normal.  Nodes still swollen.  Hematologist ordered lymphoma labs which I'm waiting on results and he wants me to just move forward with a PET scan.  He said doing a biopsy on small nodes could result in nondiagnosable tissue so the scan will light up anything elsewhere.

Heres the questions.   This feels like it went from 0 to 100.  I have no other noticeable symptoms but the hematologist said that even though the nodes are small, they are palpable and "in the wrong place to brush it off."  I am losing my mind with anxiety now.  I have little kids and struggling to keep my mind off the fact I could be seriously sick.  Anyone have any words of wisdom or experience with anything similar?  Is this overkill or should I be rightfully worried?

Lym999
Posts: 35
Joined: Feb 2020

I understand where you are coming from. There is a lot of us just like you who were in great health (non-smoker) only to find out I had Lymphoma. I just found out a year ago in which we thought was just an upper respiratory issue in my right lung, but only to be told I had cancer. Luckily it was lymphoma instead of lung cancer and I am now currently in remission. I truly understand what you are going through and hopefully, it isn't anything, but even if it is Lymphoma there are plenty of remedies to cure it.

Stay strong! Please stay in touch and let us know what happens. If you want to chat more with me about it let me know.

 

John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3613
Joined: May 2012

Mr,

Welcome to our little ship of fools.  Your particulars do not presently scream Lymphoma ! or Not Lymphoma !

IF you have lymphoma, it is currently a very mild, incipient case, and such cases are almost universally easily treated.  Normal CBCs in many cases, like mine, while better than a horrible set of results, do not strongly suggest malignancy or lack thereof.   Many here have been diagnosed with highly advanced, aggressive disease, with mostly normal blood panels.

An excise biopsy (surgically cut out) of a node 1.3 cm would yield plenty of biopsy mass; perhaps you doctor was thinking of an aspirational biopsy (needle drawn), which is usually marginal, regardless of how large or small the tumor.  But a PET is a good idea, and it should yield highly accurate and suggestive data regarding cancer.   IF the mass appears hypermetabolic, a biopsy will then be necessary, since no PET clinically proves or eliminates cancer as a certainty.  Only a biopsy can or will do that.    Tumors in the clavical or axillary regions are usually easily accessed, and not difficult for a general surgeon.

Smokers get lymphoma and leukemia no more or less frequently than non-smokers.  Gerneral health and fitness also seem to NOT be strong indicators.   Close relatives with a blood cancer do increase liklihood of the diseases, but not astronomically.  A first -degree relative with Lymphoma, leukemia, or multiple myeloma are all therefore relevant risk factors.

Anxiety is a bane of the cancer patient's life.  But a better moniker wold be "Mr Trust" or "Mr Success."    

mranxiety
Posts: 17
Joined: Sep 2020

Thanks so much for the replies.  I am going to continue as directed.   Schedule for the PET next Friday.  Doing my best to stay sane.  Internet does NOT help that cause.  No relatives that I am aware of that have ever had a cancer diagnosis.  My doctor basically said that even if they did the biopsy, I'd likely be back in PET whether it was diagnosed or not so he felt this was the best path.  Ill trust him.  Ill be back in a couple weeks with good or not so good news....thanks again

ShadyGuy
Posts: 637
Joined: Jan 2017

PET is a screening test. Biopsy is a definitive diagnostic test. if the PET shows hot spots you will get a biopsy too. Thats the only way to identify the strain. Even if you test positive for lymphoma, the treatments are very successful. Good luck. Here is wishing you the best.

mranxiety
Posts: 17
Joined: Sep 2020

Thanks....ya, I am not 100% sure why he is doing PET first other than his explanation that he wants to be sure the nodes aren't the tip of the iceberg before he just biopsies one of them.  I guess as scary as it is, its less invasive than general surgery at this point since the 2 palpable nodes are my only symptoms.   Really appreciate the well wishes.  

Lym999
Posts: 35
Joined: Feb 2020

Shady Guy is right.  You will need a biopsy to see what strain of lymphoma you might have if your pet scan does come back as cancer. I had to have two biopsies for them to exactly determine all the details with my lymphoma.  I also had a bone marrow test done. Keep the faith that it turns out to be nothing but if it is Lymphoma there are plenty on here to help you through the whole ordeal. 

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

...measure hypermetabolic activity. That can include common infection and even the healing process from severe illness or physical injury. Again, an SUV (standard uptake value) is assigned to any spots whcih light up the scan. The lower the number, the less the concern. Yet, even high SUVs do not mnecessarily mean cancer. Only a pathological examination of a tissue sample (biopsy) can diagnose any malignancy. One phrase which helps to maintain sanity is:

"You do not have cancer until a pathology report says you have cancer."

ShadyGuy
Posts: 637
Joined: Jan 2017

"You do not have cancer until a pathology report says you have cancer."

Are you are saying pathology reports are never wrong? 

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

1. One is not going to get treatment if the path is negative. Good so far?

2. One needs to remain sane - especially those with pre-existing anxiety - during the diagnostic process. 

3. Out of over 68,000 known human illnesses and conditions, thousands share symptoms with cancer. Still good?

4. So, the "mindset" which can help the anxious maintain some semblance of peace through the diagnostic process, is to take the position that it is not cancer (remember those symptoms) until a biopsy sample undergoes pathological examination and a finding of malignancy is arrived at.

5. I did not make it up. I was taught it on a forum which had 60,000 members. 

6. And for the above reasons and more, a second opinion on both pathology and treatment is recommended.

Over and out.  

ShadyGuy
Posts: 637
Joined: Jan 2017

"You do not have cancer until a pathology report says you have cancer."

Are you are saying pathology reports are never wrong? Doctors and lab techs are often wrong. You have what you have regardless of what someone else says. False negatives and false positive frequently occur.

mranxiety
Posts: 17
Joined: Sep 2020

Hi everyone.  So, I never updated this thread.   Got the PET and CT in September.   Negative for any abnormal foci in PET and CT images showed nothing significant so basically, all clear.   Also had flow cytometry blood work and also all clear.  So, everything short of a biopsy.  Here we are 4 additional months later and, nodes still very much palpable.  I cannot tell if they are larger so if they are, it is not to the point where it is clearly noticeable.   A month ago, I had follow up with hematologist and I also had a second opinion meeting with an ENT.  Both told me to not worry and move on however, no actual explanation for the nodes.  Never did I have health anxiety until this situation so this is kind of throwing me through a loop.  In your educated and experienced opinions, what would be logical next steps?  Basically force a biopsy?  Have a follow up ultrasound to check size or, nothing at all?  I have no other symptoms but I do have 3 very palpable nodes that don't seem to be going anywhere.  I guess my mind wanders to some indolent form of disease that the PET may have missed.  Sorry in advance if I sound like a hypochondriac but, in my mind I did the right things but these nodes not going away just concern me.  Thanks in advance....

PBL
Posts: 295
Joined: Jul 2016

Since you've had those mildly enlarged lymph nodes for nearly six months, maybe more (referring to your initial post), showing no uptake, and they haven't budged in all that time, even assuming it is lymphoma, it clearly would be an indolent type. Asymptomatic indolent lymphoma can be monitored without any intervention for many years before it requires treatment.

You've seen a hematologist, you've had all the non-invasive relevant testing, and your GP is well aware of that small mystery so will likely keep an eye on it when you visit.  As the specialist told you, a biopsy on such small nodes could very well yield too little material to be conclusive.

In the absence of any development, such as more nodes popping up, or those first ones dramatically increasing in size, or other symptoms, you might as well keep on living life to its fullest possible. It will be time to return to the doctors if and when something new arises. 

You have said that you were essentially concerned because you have young children for whom you would understandably want to be around to raise and support them. This is often part of the health anxiety equation. I would suggest you look into the means to manage that issue - young children need a parent, to be sure; and a functioning, relaxed and available parent is even better. Anxiety is handed down to young children.

You may never know why those slightly enlarged nodes popped up - or, you may find out years down the line that you have lymphoma. Is it worthwhile to worry about being seriously ill when you could be enjoying your current good health and lead a happy family life?  

I hope this helps.
PBL

mranxiety
Posts: 17
Joined: Sep 2020

Everything you say makes 100% sense.  Im a bit of a control freak i guess and the not knowing sucks.  I guess in hindsight, a biopsy maybe would have been a better course of action for my personality but, again, there is a concern even that could be inconclusive.   I was hoping the clean scans would be it and these things would go away and I'd move on.  I moved on for a couple months but for sure the anxiety is cranked right back up since they have not gone down.  I have considered the anxiety aspect of this but,  I also like to hope medicine can tell me whats really going .  Im sure the poking and such doesn't help mentally or physically.   I do appreciate your response and I know you're right.  I guess I'm just looking for some hard closure. 

PBL
Posts: 295
Joined: Jul 2016

... and knowing with 100% certainty would likely not change anything to it.

Something worth noting: poking and prodding will prevent those nodes from shrinking back to their usual, unnoticeable size. One more good reason to leave them alone and put the thought of lymphoma in the back of your mind, where it least bothers you.

Since you prefer to feel in control, why not set a date - say in six months - on your calendar to check on them? And until then, just forget they're there.

There is no risk you will actually forget of course - and if anything new arises, you'll know to go to the doctor's.

mranxiety
Posts: 17
Joined: Sep 2020

You're right again and yes,  I've been prodding them nonstop so probably need to leave them be.  Good advice and good direction.   I need to make a hard effort to stick to that plan for sure.  Thanks again for the advice.  I know most cancer patients pray for the clear scans and labs i have in hand so trying to keep that in mind for sure.

ShadyGuy
Posts: 637
Joined: Jan 2017

There are MDs who prescribe professional massage to reduce swelling in nodes. Look it up. May or may not be right for you. Here is just one example of many. It is recognized medical procedure, not quackery.

https://www.medicalnewstoday.com/articles/324518

 

 

PBL
Posts: 295
Joined: Jul 2016

I believe the article in the link deals with lymphedema, which is what you can see, for example, in breast cancer survivors who have undergone mastectomy with extensive lymph node ablation. Typically, they have a buildup of fluid in the arm on that side, due to the damage to their lymphatic network. Lymphatic drainage techniques aim to reduce that buildup. The woman in the video has lymphedema in her left leg: you can see it is quite swollen as compared to her right leg. You can also notice that she usually wears a compressive stocking on that side.

I am not sure that this would apply to someone with enlarged lymph nodes... But, one can always ask.

ShadyGuy
Posts: 637
Joined: Jan 2017

Bad example. I did not watch the video. My only experience with this technique was two women I used to work with who had mild lupus. They swore by it. Even if there is no infection and no cancer detectable, there still must be a cause for the inflamed nodes. One potential cause could be allergic reactions or perhaps exposure to environmental toxins. Also as I mentioned, lupus and RA cause the nodes to swell. An RA factor test is fast simple and inexpensive. I don't blame mranxiety for wanting to find the cause. 

PBL
Posts: 295
Joined: Jul 2016

I merely tried to offer some suggestions for him to reach some kind of either short- or long-term peace with the situation...

I hope he does find some way to turn away from that little mystery, not allow it to become the central point in his life, focus on what does matter for the time being - and, of course, that leaving those nodes alone for a while will ultimately, if not provide any answers as to cause, at least resolve the cause for worry.

PBL

mranxiety
Posts: 17
Joined: Sep 2020

I appreciate you both for replying.   I would LOVE to know the cause but,  since I have no other symptoms and they haven't seemed to change much in at least 6 months....I'm going to try my best to not mess with them and check them again in a month.   Maybe all the prodding several times a day is keeping them palpable.  I have a 3 month follow up cadence with my hematologist anyways and he knows the not knowing drives me insane so, ill go with this unless something changes and see him in March.  I know not test is 100%...even some biopsies are false negs so just going to hope the PET and CT were accurate and that its some other random, fairly not serious cause and hope no other issues arise.  I really do appreciate all the replies and help.  I never even knew a couple nodes could put me on a journey like this so its been different for sure.   Ill be sure to check in and if you all have any other input or advice, its always welcome.  Wish you all health and happiness

 

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

It will not go away until you make it go away. If I were you, I would take steps to deal with the anxiety, or you might spend the rtest of your life in doubt. You deserve to live in peace.

mranxiety
Posts: 17
Joined: Sep 2020

I hear you but yes, this did trigger some anxiety.  I came back to see if people with more real world experience than I had any other advice or opinions on logical next steps realizing that I may be overamxious or overanalyzing.   I for sure realize that regardless of the nodes, this situation has absolutely triggered some anxiety probably compounded with a stressful job and the general state of the world these days.   Anyways,  I'm going to follow my docs and my body and try and let these things be for a bit until my next doc appt unless something changes.   Hoping that helps a bit with the anxiety issue as well if I'm not constantly touching them and thinking about them.

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

1. Your username. Hmmm...

2. "may be overamxious or overanalyzing" Yes.

3. Ask about cognitive behaviuoral therapy. Drug-free, it is the gold standard in anxiety therapy. It can even be done over the phone.

4. I have had about 100 actual lymph node/tumors. My wife would occasionally check them, but I would not. They can become anxiety nodes.

ShadyGuy
Posts: 637
Joined: Jan 2017

Anxiety can nudge you to keep following up when you receive false reassurance. If you have lymphoma, which seems unlikely to me, you want it diagnosed at stage 1, the only stage at which indolent follicular is curable. Doctors are very reluctant to say a patient has lymphoma until it is full blown. Many just want to give more antibiotics and have you go away. Be calm but persistent. Don't let anxiety control you, but anxiety evolved to fill a survival need. Its ok to use it. Good luck.

mranxiety
Posts: 17
Joined: Sep 2020

Thanks....my doc has me on a 3 month cadence.  He has said if anything changes or if I just can't sleep, he will order the biopsy but he also said that it makes no sense given my current results and situation.   Seems like a catch 22 as I also am not really wanting to get my neck cut open if its unnecessary.  I'll see him in March and gauge next steps then as that will be a full 6 months post scans.  Maybe a follow up US will be a next non invasive step to take a quick look if there have been any changes.

PBL
Posts: 295
Joined: Jul 2016

It did not seem as clear in your previous posts as in this last one that you were actually being closely monitored. I will now say that you can safely "forget" about those nodes in between two quarterly visits. You can trust in your doctors' vigilance to take action when they believe it is warranted. Delaying biopsy until then is your best option. Think of your lymph nodes as tinier and more numerous versions of your lungs or kidneys - and now that Shadyguy has brought lymphedema to your attention... Who would have one of those organs removed without giving it some thought?

Do keep us posted on your future developments -or (hopefully) absence thereof: many people seem to worry about having lymphoma, and although you may think it irrelevant to report on continued negative follow-up, it may help others realize that you can have what looks like lymphoma symptoms, and still not be diagnosed with it... and life goes on.

Kind regards,

PBL

mranxiety
Posts: 17
Joined: Sep 2020

Thanks and absolutely will do.  I'll follow my ENT and hematologist direction for sure and will check in later.  Thanks again!

Pwhitefl21
Posts: 15
Joined: Jan 2021

Dear Mranxiety:

I totally understand what you are going through. I had no symptoms, and my CBC came normal. I had a swollen lymph node in my neck, which has since gone down. They did perform a biopsy when it was swollen and they found some cells that were consistent with low grade Follicular Lymphoma. I recently took a Pet Scan, and they did see some cells where the swelling was, but recognized that it had significantly improved. It did notice some activity in a node near stomach, but no where else. It has not affected any organs.

Having said that, I have a follow up next week. I know how you are felling, and the unknown is Scary. You will see that at each step, as more information comes, surprisingly the situation becomes less tense as you learn more. Try and keep all the negative thoughts out, and good luck.

mranxiety
Posts: 17
Joined: Sep 2020

Thanks.  I had my schedules all screwed up and I had a follow up last week.  Hematologist sent me for follow up ultrasound just to check size.  Came back that the nodes have shrunk and that they are not worthy of biopsy.   Still palpable...so, basically nothing I can do but watch them.  Doctor said with clear CT, clear PET and US that shows nothing enlarged by size criteria and normal looking nodes, biopsy is out of the question right now.  He said nothing looks pathological at this time.  A hematologist,  an ENT and 3 radiologists...none of them have suggested biopsy during the whole thing so, I have to trust them.  Basically,  nothing to do but keep an eye on the nodes and if something changes,  then I guess we shall see.  At some point I feel like a hypochondriac with all the tests and docs giving me the clear bill for now.   So, gotta move on.

Pwhitefl21
Posts: 15
Joined: Jan 2021

That's great news!

ShadyGuy
Posts: 637
Joined: Jan 2017

"closely monitored". Hopefully its more than just blood work. Myself and Max too had normal blood work up to the time Stage IV (me) and Stage 3 (Max) were diagnosed. Neither of us had palpable nodes either. Good luck. I am outta here.

mranxiety
Posts: 17
Joined: Sep 2020

Hi....I had a negative PET/CT and negative flow cytometry.   He did not want to do an invasive node biopsy if the pet/ct was negative which it was.  So, now they are watching the nodes and me for any change.  Not sure if you knew that or if you did and still think they are being too optimistic with not doing a biopsy.

ShadyGuy
Posts: 637
Joined: Jan 2017

I assume that "negative flow cytometry" means no monoclonal cells detected? Thats very positive news. People are different which is as it should be. Myself, because of my personal history, I would need to know why those nodes are enlarged. I would say that if they are not gone in 3 months then further investigation is warranted. Meanwhile, enjoy life. I regret chiming in here and sorry for any distress it may have brought to you. Best of luck. 

FingGrrr
Posts: 7
Joined: Dec 2020

In the years following my first lymphoma I've eventually learned to appreciate a little swelling here and there as a good thing. It means they're working. I've wasted time worrying about a relapse when it wasn't an issue. I don't mean to say this is the right way to think about it, just that a more positive outlook only helped relieve my anxiety. When the swelling is a problem I think you'll know it. It's good to be aware, or vigilant. If you make a point of checking once a month you'll be ahead of the game and more likely to catch anything early. That said, coming to a place like this you are more likely to read the stories that add to your anxiety. Good luck with the stress and your health. 

ShadyGuy
Posts: 637
Joined: Jan 2017

I don't think so. Look into it - yes. So far he has no signs of lymphoma so I do not know why the focus is on that. I find it very odd that a PET would be ordered before any other tests. The CDC gives a list of potential causes of persistently swollen nodes. Lymphoma is #6 on the list which is started off by lupus and RA. panic? Hardly - but look into the cause. CDC says persistently swollen nodes are a cause for concern if they persist 3 months or longer. As I said in an earlier post, I would be finding out what is causing this. Hematologist? Only if its cancer which it most likely is not. See an oncologist to eliminate cancer and a rheumatologist to look at other possibilities is what I would do. And in the mean time I would lose no sleep over it.

PBL
Posts: 295
Joined: Jul 2016

Answerin your latest post today...

Based on what you've told us so far, I assume you've got an appointment scheduled with your hematologist some time in April-May...

If so, as previously said, you're not alone. Try and live life as usual until that set date. If anything new arises before then, just let your hematologist and/or GP know. If you haven't been given an appointment (which I do not think the most likely of the two options), just head back to your GP's office and update them on what's been going on, and the hematologist will most likely see you without delay.

Whatever it is, it does not seem to be life-threatening. You are now known to your GP and hematologist. So, keep breathing and working and enjoying life until either the next appointment or something new does happen. Needless to say, you can always come back to this forum for support in the meantime!

PBL

mranxiety
Posts: 17
Joined: Sep 2020

Hey...I actually had my schedules all screwed up and just had an appt. I had my schedules all screwed up and I had a follow up last week.  Hematologist sent me for follow up ultrasound just to check size.  Came back that the nodes have shrunk and that they are not worthy of biopsy.   Still palpable...so, basically nothing I can do but watch them.  Doctor said with clear CT, clear PET and US that shows nothing enlarged by size criteria and normal looking nodes, biopsy is out of the question right now.  He said nothing looks pathological at this time.  A hematologist,  an ENT and 3 radiologists...none of them have suggested biopsy during the whole thing so, I have to trust them.  Basically,  nothing to do but keep an eye on the nodes and if something changes,  then I guess we shall see.  At some point I feel like a hypochondriac with all the tests and docs giving me the clear bill for now.   So, gotta move on   

ShadyGuy
Posts: 637
Joined: Jan 2017

i am happy for you!

mranxiety
Posts: 17
Joined: Sep 2020

Hate to come back but after finally moving on from my small supraclavicular nodes scare, I had this thing pop up a week ago. I am out of town but went to the doc only because of my past history. He says it is NOT a lymph node. Explained my history and he said, he has been doing this awhile and its something muscular, not a node. Prescribed steroids but I'm hesitant to take them as I'd like to see what it does on its own. This is same side as my supraclavicular scare. Any opinions? I was thinking to let it ride another week then see my own ENT when I'm back home but hard to process this is a random coincidence and not a lymph node. Pic: https://drive.google.com/file/d/1LWhi0sTBAOhkzUh11DjMEeeso-s9p2R1/view?usp=drivesdk

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

1. Follow doctor's advice.

2. Stop feeling for lunps and bumps! We are made of them.

3. Follow up on the anxiety.

There you have it.

mranxiety
Posts: 17
Joined: Sep 2020

You're not wrong...but this was noticed in the mirror while shaving.  It is pretty prominent when I turn my head.  I was honestly moving on from the entire thing and bam, see this thing 

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

We have told you everything that you need to know. The rest is 100% up to you.

https://www.anxietycentre.com/

ShadyGuy
Posts: 637
Joined: Jan 2017

Am I correct to assume you went to a Doc in a Box while on travel? You might want to stick with your original doctor. Let him/her take a look.

mranxiety
Posts: 17
Joined: Sep 2020

No, I was actually able to get into an ENT so his opinion is much more educated than mine.  I'm just a bit freaked it isnt going away and since there was no cause or discomfort with it, confused how it could be something other than a node.

ShadyGuy
Posts: 637
Joined: Jan 2017

know about cancers and how to test for them. ENTs for the most part know about antibiotics, sniffles, tonsils etc. If your anxiety is this high you may want to see an oncologist - just peace of mind. Make sure he/she has access to the tests already performed. Also get blood tests for RA and Lupus. These tests are very simple and inexpensive. Also a short tapered dose of prednisolone would likely make the nodes go down. It worked for me. I was afraid my cancer was on its third relapse because of small swollen nodes in my neck. Ended up being mild psoriatic arthritis on which prednisolone worked well. Worth a shot! All these autoimmune diseases - lymphoma, lupus, RA, Psoriatic, Chrons disesease etc. - are closely related and for the most part highly treatable but not necessarily curable. You can have a normal lifespan despite theses conditions. Having either increases the odds you will get another. For example having psoriatic arthritis significantly increases your odds of getting lymphoma. They are all diseases of the white blood cells and play out over decades. Good luck. Calm down.

mranxiety
Posts: 17
Joined: Sep 2020

Thanks for your reply.  I also have an onc I have been seeing through the previous "scare."  This ENT did prescribe the prednisone but I haven't taken it yet.  I figured the ent could at least call it a node or not and then order proper imaging or tests if he thinks its needed.  I have a follow up with my onc anyways so I'll just wait to see him and bring it up if it's still there.   Staying calm, just random things happening which is a bit strange.

ShadyGuy
Posts: 637
Joined: Jan 2017

https://m.youtube.com/watch?v=UJKythlXAIY

 

Let it go. This too shall pass when the morning comes.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3613
Joined: May 2012

Anxiety,

Following your thread here from September, 2020, until today, your issue remains identical:  Extreme worry (panic, actually) about nodes that a half-dozen doctors, and numerous scans, have told you to forget about.

You seem to not be hearing the doctors, and not hearing us.   You are an intelligent person, obviously.   Sit and ponder all of this for a bit is my recommendation.   Your panic is not derived from what the doctors are telling you.

 

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