Category: Cancer

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Cancer Family & Friends Work

Thank You for Giving Me Hope

I wrote in my previous post, that my insurance company denied my doctor’s order of a PET CT scan to determine if the cancer had spread to any other areas in my body. I woke up on Friday morning, feeling a little better,  but still- I wanted to know for sure, and I was going to have to learn to live with that shadow of a doubt- always wondering.

My boss, D., asked me to call her after the scan, and let her know how it went.  I called my office on Friday morning.  D., wasn’t available, so I filled a co-worker in on the situation and asked her to fill D. in when she could.  My co-worker was outraged the insurance wouldn’t pay, and it helped to hear someone else was mad and thought the insurance company was ridiculous for denying this. 

I was trying to pack up our stuff for a weekend in Denver at my dad’s house when my phone rang.  It was D.  She asked me what was going on.  I explained to her what the insurance company had told the imaging company and the reasons the insurance gave for denying the order- basically because I wasn’t sick enough yet. 

D. told me that was absolutely absurd, and she was mad for me too.  She asked me how much the scan cost, and was the reason I canceled the scan because of the cost.  I told her yes- we just didn’t have that much money to spare right now.  I was shocked at what D. said next- she said she would like to pay for the scan for me, so I didn’t have to worry and wonder if the cancer was spreading.  She told me I was the mother of two young boys, and I needed to know so I could move on with my life.  She told me we would figure it out someday, and to not worry about it at all- she had it covered.

I couldn’t say anything at first.  I was crying and finally managed to tell her “thank you.”  D. told me she could not imagine not knowing if it were her, and she wanted to do this for me.  She told me to get off the phone and call back the imaging company so I could get an appointment as soon as possible. 

I called them back and I now have an appointment for the scan on Tuesday at 10:30.  They will have the results back to my surgeon in time for my pre-opt. appointment with him on Wednesday.   I called D. back to let her know.  I thanked her countless times.  She told me she was happy to help, and suggested what my friend did- to question the insurance company, and try to get them to pay for it.  But she said if they didn’t, and when I get a bill for it, to let her know.

I told D. I would, and all I could say to her was “thank you.” She told me she hoped this would make this time a little happier, and I have a lot to look forward to in the future.  As we hung up, I was overcome with her generosity and help.  I am still a little shocked thinking about this.  It is such an unexpected bright spot in the weeks of gloom I have had recently. I will know one way or another, what the true condition of my cancer is.  If it bad news I need to find out sooner than later.  Early detection is the key in surviving.   If it is good news, it will be the first step in being able to move on as a cancer survivor after my surgery- without always having that seed of doubt and wonder in the back of my mind.

I am so grateful and appreciative for this unexpected gift. It is no secret that I haven’t been feeling positive lately, despite my best efforts.  D.’s isn’t just helping me get a scan, but her words to me, made me realize what had been really bothering me- the uncertainty of all of this.  I can handle a “brutal” surgery.  I am going to have good days and bad days recovering.  As long as I know the cancer has not spread, and I am going to be fine- I can get through it. 

Not knowing is worse.  It magnifies the odds, no matter how small they are. I lay awake at night wondering if I am going to be around in a year, in five years, in ten years, and my biggest fear has been- what if the cancer has spread, and is slowing killing me, and I don’t even know it?

I will never be able to repay D., even if I repay the money someday.  Being able to get this scan right now, when I need to know- have to know- will give me peace of mind, and the answers I need.  It is the first step to my future- no matter what the results are- I can stop wondering and being scared, and start living my life again.  Not just hoping for the best, but knowing what the best actually is.  

So many people have been so supportive and I honestly can’t thank you all enough- from my family and friends- rearranging their lives to help me right now, to the offers of help- from doing handy work at the house, to cooking meals, to the supportive e-mails, to watching the boys, to paying for the scan, to the thoughtful cards and small gifts that are sent, to listening to me and helping me whenever I need to talk.  

All of these kind acts have given me hope. D.’s offer of help was the icing on the cake-but the cake has been there all along.  I can’t express what it all means to me, so the only thing I can say is thank you. Thank you for giving me hope.  Thank you to everyone-from the bottom of my heart.

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Cancer Me

The PET Scan That Wasn’t

A few months ago, I experienced the biopsy that wasn’t, and I found out on Thursday, that my PET scan isn’t going to happen today either.

When I left work on Thursday, I checked my messages, and the imaging clinic asked me to call them as soon as possible.  The lady there said my insurance had not approved the scan, because I “only” had stage I papillary cancer.  She said my insurance said I had to have stage II thyroid cancer, OR stage I thyroid cancer (papillary) and a thyroidectomy.  I told her I was scheduled for a thyroidectomy next week.  She clarified even further and said at stage I, there has to be indication of reoccurrence of the cancer.

She told me without the reoccurrence, it is nearly impossible to get the insurance companies to pay for the scan.  She said the thyroidectomy would make a stronger case, but it would still be very difficult.  I sat in the car, stuck in construction traffic, in a state of disbelief- yet again.

I wanted the PET scan so I would have peace of mind.  I want to know the true condition of my health.  The reality that an insurance company can deny me that simply because I am not sick enough, or because the cancer hasn’t spread yet– just is inconceivable. 

The lady told me she didn’t want me to be surprised tomorrow at this news (which I appreciate they did call to tell me this), and if I still wanted it, I would have to pay it out of pocket.  She said it is over $2,000.  On one hand, this is my health-money shouldn’t be an object.  But on the other hand it occurred to me that there probably is a reason the insurance company won’t pay, based on some research my family has done for me.  

The chances and statistics of stage I, papillary thyroid cancer spreading beyond the lymph nodes is rare.  If it does happen, it is very slow moving and more than likely would take years for this to happen. I remember Dr. S. telling me my cancer was in the very early stages, and that we had caught it early.  Dr. S.’s office had said usually the endocrinologist ordered a PET scan, down the road if it was needed.  The thought occurred to me that maybe, just maybe, the chances were extremely low that the cancer had spread.

I asked the lady if my thinking was correct.  I can’t remember her exact words, but she confirmed that if the cancer had spread, it usually was at stage II and beyond, hence the reason why the insurance company wasn’t going to pay for the scan at stage I. 

I thanked her and told her I was going to hold off on the scan for now.  It should be causing me reason to be happy, but I couldn’t process this is good news or bad news.  As the night progressed, I feel like it is a little of both- good that it does seem to be rare that the type of cancer I have would have spread into other organs this fast.  But bad, because I still don’t know with 100% accuracy, and chances are I won’t know for some time.

 One of my friend’s husband’s suggested that I call the insurance company and ask them firmly why they are not paying for this scan, even though my doctor ordered it.  I don’t have a ton of energy to “fight” the insurance company.  I am not Erin Brockovich right now, but I do think I can manage a call, or have one of my family members do it for me.

My dad, sisters, and I agreed that for now, it is probably best if we leave it on the back burner.  The results of the scan will not affect my upcoming surgery, and the probability of the cancer having spread, seems very, very low. 

However, I feel frustrated, and angry at the insurance company.  If a doctor orders a procedure for a patient, it should happen. The number one concern should be patient’s health.  Suppose I am that one rare case.  Treatment by the time they figure this out, will cost way more than the $2,000 plus dollars for the scan. It seems ridiculous and almost criminal that patients can’t take a proactive role in their health because they just haven’t gotten as sick as the insurance company thinks they should be.

I am tired, I am scared, I am drained, I am exhausted.  I am trying to take care of myself and my boys, while keeping a positive attitude.  I do not have the energy to take on an insurance company on top of trying to fight cancer.  This is wrong, and it sucks.  Much like cancer itself.

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Cancer Health Me

Cancer- A Range of Emotions

It has been six days since I found out the extent of the surgery I am facing for my thyroid and lymph node cancers.  Everyday the shock wears off a little more, but I think I am still in a state of disbelief.  Each day that  I have to think about it, is another day I have to think about it and live with cancer.   I want to stop thinking about it, but I can’t.  I can’t turn my brain off.

As far as the actual condition my body will be in after the surgery, I feel  like I can live with most of them. I can handle the pain.  I can handle a scar-even if it a U shaped one.  I can handle shoulder rehab.  I can handle being on a restricted diet for six weeks to prepare my body for the radioactive iodine.  I can handle gaining weight and becoming depressed because of this diet.  Of course, these aren’t things I want- but I can put my mind around them and realize in the grand scheme of things, they aren’t that bad.  With the help of my family and friends, I will get through it.

I can’t handle thinking about how I am going to be numb from my earlobes to my collar bone.  That makes me cry just thinking about it.  My boys hug me around my neck.  I like my neck rubbed.  I like my neck kissed, and it seems like a very big loss, to realize I am never going to feel those sensations again.   I realize it might not be as bad as I am thinking, and over time, I might gain some feeling back again.  But right now it is a causality that I have to mourn.

I have been terrified thinking about the surgery- those last few minutes that I am awake.  What if that is it for me?  What if I never wake up? 

When I do wake up, I am dreading being in the hospital for so long.  I have never been away from my boys for longer than three days.  I might have to be away from them from seven days.  That seems like a life-time.  I am so worried about what kind of toll this is having on them, and for me to go away for seven days- my heart breaks thinking about it. 

I have been wondering if the cancer is anywhere else in my body.   How do I know this hasn’t spread?  My dad suggested that I call my doctor and ask him.  I did on Monday.  They told me that the endocrinologist usually handles this aspect of the case.  But they recommended I have a PET CT Scan as soon as possible from my brain to my legs, to find out for sure so they can answer that question for me.  I am scheduled for this on Friday.

I let my mind go there for about half an hour on Monday- the major, “What if?”  What if the cancer is in the rest of my body?     

I feel like I am on auto-pilot.  Get through the days so I can go get the PET CT Scan, and then get through the days so I can have the results to that, and then get through the days to the pre-opt appointment, and then get through two more days to the surgery.  Somewhere in between there, I am trying to keep a positive attitude and be strong.  And hope, with everything that I have, that the cancer has not spread past my lymph nodes.

So I try to get through each hour.  I have stayed very busy.  I am exhausted but I keep going.  When it is quiet, and I don’t have enough to do, then the thoughts I don’t want to think about, start creeping in my mind.  I wish the surgery was tomorrow.  I think waiting around for that day to come, is one of the hardest parts.  I have to keep managing my emotions and thoughts until June 12th. 

But as bad as I feel at times, there has also been such an out-pouring of support and love.  I never imagined this- never imagined the small things so many people do for me every day, to help the day be a little better, and a little happier. 

I decided not to get a second opinion after talking to my family about it.  My aunt Laura, has been an intensive care cardiac nurse for over 20 years in for a major hospital in Denver.  Laura will tell you how it is- nicely of course- and sometimes not so nice.  🙂  When talking to her she came out and said it- I have cancer.  She said she had been looking at different treatment options besides surgery, and there aren’t any.  She said I have it, and I have to get it out- what my doctor proposed is the treatment, and it is effective. 

I told her I felt confident with what my doctor told me, and she told me that was half the battle- finding a surgeon you feel comfortable and confident with.   Laura says that affects the outcome of the surgery. I knew I had already found that doctor, and I felt happy I didn’t have to be searching for another doctor right now.  Laura spent a lot of time looking up information for me, and relating it to me in a non-medical way I could understand. 

One thing my doctor, Dr. S.,  told me I could do to be proactive before the surgery was get an appointment with an endocrinologist.  Dr. S., gave me the name of the endocrinologist, Dr. M.,  his wife sees, who also has thyroid cancer.  I felt my time would be better spent doing this, than trying to find another doctor to look at my case, and end up telling me the same thing anyway. 

I was told when I called Dr. M, that he was too booked up and he was not going to be able to take me as a patient.  I was getting motivated to try to find another one, when his office called me today and said Dr. S., had called them and told them he had referred me.  They told me I could meet with an associate doctor of Dr. M’s., for the initial appointment and then from that point on, Dr. M., would be my endocrinologist.  They told me as long as the doctor met with me before six weeks post-opt, that was fine.  I have an appointment in July- a few days shy of the six-week mark.  I am not sure what changed, but I am thankful that Dr. S., made the referral for me, and I am now a patient of endocrinologist I wanted. 

As far as my neck, my sister, Mara, told me her knee has been numb for 12 years-ever since her knee surgery.  She says she can’t feel a very light touch on her knee, but she feels pain on it.  She said the numbing would get better.  My sister-in-law, Kat’s, left side of her back is numb from back surgery she had ten years ago.  Evidently I will fit right in. 

My friends Amy, and Kathie, helped me find a great relaxation meditation CD for surgery.  I have been listening to this since Sunday night, and I am falling asleep much easier, and I am starting to feel calmer about the surgery. 

As far as Ryan and Cole go, all I can do is love them and tell them that.  I tell them that much more than I used to.  I am also receiving a lot more hugs and kisses from them.  They know I am going to the hospital and we talk about that.  I keep it very light and very basic with them.  But,  I feel it is very important that they know why I am going to be away from them, where I am going, and that I am going to be just fine.  My children don’t need to know every detail about my health and they are not at an age where they can comprehend it all.  But they do know that Mommy has to have an operation at the hospital, and they deserve to have their questions and feelings answered and acknowledged. 

My family and friends have been there to listen to me talk about my fears about  all of this- the good, the bad, and everything in between,  In the end, they all tell me I am going to be fine.  In my heart I believe that. 

I have realized during these last six days, I do have a choice- I can choose to be depressed and sad, or I can choose to be hopeful and positive.  No matter how many bad days I have between now and then.  No matter how scared I am.  No matter how much I wish this wasn’t happening.  I am going to beat this cancer and be healthy again- no matter what.    

Once you choose hope, anything’s possible.  ~Christopher Reeve

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Cancer Health Me

What I Found Out About Thyroid Cancer Surgery

Thank you all for the e-mails and comments youyou have sent me.  Many of my readers asked me to keep them updated, so here is what I found out today from my surgeon. 

The surgery is the worst case scenario. The two lymph nodes that are of major concern, are right below my ears. This means the surgeon is going to have to make a U shaped incision that runs under my ear, to my neck to the other ear. He will then have to work his way up- he said lymph nodes are like a ladder- one layer had to be removed before he can get to the next layer. He said he is going to have to dissect my neck. He said there are 80 nodes in this area, and he is going to try to get them all out, as he works his way up to get the ones with the known cancer. Every one they can get out, reduces the chance of a reoccurrence. He said lymph nodes should be under 1 cm. The two that are of concern are measuring 2.7 cm., and 3.5 cm. He said they could do a biopsy to make sure they are cancerous, but he said in his best professional opinion, he has never seen a case where the nodes are enlarged like this, and it wasn’t cancer.

I would think more seriously about a biopsy, but my thyroglobulin in my blood should be at 0, and it is at 37. He said he was very surprised it was this high. He said that all but confirms the enlarged nodes are cancer, and it is now showing up in my blood work. Dr. said it is more than likely that cancer is in my other lymph nodes in my body. But until they grow large enough, they are hard to detect. Six weeks after the surgery, I will have the radioactive iodine therapy that will kill off any cancer cells in any other lymph nodes. This is an effective treatment- it is a one time thing, I don’t lose hair or get sick. It does not look like I will need chemotherapy.

Because there is so much tissue, nerves, fat, and other vital parts in the neck, they have to work very slowly and meticulously in order to preserve as much of these as possible. It is a possibility I will lose my voice-for good- he said about 4% of people do. The vocal cords are right behind the thyroid and there are lymph nodes there.

Dr. said this is a brutal surgery. They have to cut away so much tissue and nerves to get to the lymph nodes, it is complex, slow, and there are other risks involved.

One thing he told me I am going to have to sacrifice is nerve endings in my neck. After the surgery, I will be numb from my earlobes to my collarbone- permanently. He said there is no way around this. Because I will be numb, I won’t feel the pain in my neck, but he said because all those nerves and tissues are connected, I will feel the pain in my shoulders.

He said the pain in my shoulders will be excruciating. He said he could not stress this enough for me, so I can be prepared. I am going to be in rehab for my shoulders 48 hours after the surgery. The surgery is going to be at least 10 hours. I will be in the hospital for up to 7 days. The recovery time after this is about 2 weeks.

I asked Dr. if I was going to die, and he said no. I told him I have my two boys, and he said I will be around for a long time for them. Learning all this was very shocking, and I started crying. Dr. gave me a hug and told me he knows how hard this is. His wife had thyroid cancer 2 years ago and he operated on her. He said their family went through the same thing, but my chances for a full recovery are very good.

I feel confident with the doctor- he is the leading surgeon for these types of cases in Northern Colorado. He’s been in practice for 16 years. He is on top of the current research and alternatives, because of his wife having the same thing. I feel he understands the emotional aspect of this for me as well. I told him I trusted him with this- to do what he needs to do, to make sure I am around for my boys. I am thinking about obtaining a second opinion, just to make sure I am covering all my options (thanks Mel).

This is shaping up to be one of the hardest things I have faced. I feel I have the information and the facts now to face it head-on. If you believe in a higher spiritual force, like God 🙂 please pray for me. If not, please send me positive and healing thoughts. I will need them.

I thank all of you- my friends (even if I have never met you in real life- 🙂  ) and family for all the support and love you have shown me. I feel it, and it is what will get me through this.

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Cancer Health Me

Cancer Information- The Good, The Bad, & The Ugly

Today I have an appointment with my surgeon, Dr. S., to find out all the details I can on my upcoming thyroid cancer, and lymph nodes removal surgery. 

I have basically been a basket case of emotions, since finding out the cancer is in my lymph nodes in my neck last week.  I had a few good days, and then a few bad days. I am finding I am not so sad, but angry.  I am so furious I have this, and so angry- for whatever reason- it was not caught sooner.  Then I have complete moments of panic- where I feel like I can’t breathe.  Of course there are tears- many of them from frustration, fear, and sadness.

I realized last night that a lot of these emotions are because, I hardly have any information about this cancer and surgery.  The day I found out I had thyroid cancer, I immediately started reading about it on the Internet, and found that I couldn’t.  I literally got sick to my stomach at the first few sentences I read. 

The words “Survival Rate” might as well have been lit up like a neon casino sign in Vegas.  Survival rate means some people don’t survive this.  It means people die from what I have.  I couldn’t  go there mentally.   I knew I couldn’t handle sifting through the bad, ugly, and scary statistics to find the good ones.  I mentally checked out on finding out more about my cancer. 

My family and friends have been giving me bits of information on the cancer, here and there.  My dad actually wasn’t surprised to find out the cancer was in my lymph nodes.  He told me he didn’t want to worry me until I knew, but in his research he came across information that said about 50% of thyroid cancer patients, do end up having the cancer in their lymph nodes.  He told me the “Survival Rate” was still very high- at about 97%. 

I didn’t hear 97% though- I heard 3% die.  I wasn’t supposed to be that one person out of ten, with an abnormality that had cancer.  But I am.  I am having a hard time not thinking that I could be in that 3% that doesn’t survive.  Unlikely-yes, but still- the chance is there, no matter how small. 

I am at the crossroads where I had to make a decision.  Do I keep my head buried in the sand, so  I don’t have to think- don’t have to worry- don’t have to feel- don’t have to deal?  Honestly, that is what I want to do.  I want to climb into bed, and shut out everything for two weeks, and wake up cancer free.   Or do I face this head-on, finding out the good, the bad, and the ugly of it all- no matter how bad and ugly I find it to be?  

I can go into Dr. S’s office and sit there.  I can listen to what he has to say, nod my head in the appropriate places, shake his hand, thank him for his time, and leave.  I will leave more informed than I was, and won’t have to listen to his answers to the bad and the ugly.

One of my best friends, Amy (Crunchy Domestic Goddess), uses a phrase I like a lot- ‘knowledge is power.’   For me, I know  I need to have those bad and ugly questions in the back of my mind that I barely let myself think about, answered.  I need to feel empowered about my cancer and surgery, and the only way I am going to feel that way is to get all my questions answered- no matter how good, how bad, or how ugly the answers may be. 

I have sat for hours.  The first time really, since April 18th-the day I found out I have thyroid cancer, and let myself acknowledge those questions that have been trying to surface in my mind, that I have been shutting out.  And now, they are on paper.  My darkest fears, and my biggest hopes.  Writing out the words to form these questions, and having them stare back at me in my own handwriting just made this extremely real for me.  My questions, my fears, and my hopes, are real.  My cancer is real. 

So today I am going into Dr. S.’s office and I will sit there.  I will listen to what he has to say.  I will nod my head in the appropriate places.  But before I shake his hand and thank him, I will ask him my questions- all of them- the good, the bad, and the ugly.  I will write down his answers.  I will ask more questions if they arise.  I will have the knowledge I need to be empowered.  I will deal with the bad and the ugly through the help of my family and friends.

I am hoping, by learning, and accepting the bad and the ugly information about my cancer, I will be able to start to understand what I am facing.  When I have acknowledged and dealt with the bad and ugly, the only thing left will be the good.  That is the place where I want my journey with cancer to conclude, and today is my first step in making sure that is where it will end-with the good.