Tuesday, May 12, 2009

Living Will

May 12, 2009
I have recent been subject to a loved one’s family member being strickened with non-operable cancer that is assumed to have metastatic tendencies. There is “nothing they can do for her” and they are “keeping her comfortable”.
Their situation has brought to light feelings I have long forgotten and shut out.
My grandfather died 15 years ago of lung cancer, my father died last year of cancer to the renal, bladder, prostate, and bone. I remember my mom getting the call at 2am that if we wanted to say goodbye to my grand pop that we would have to go right then; I didn’t go. My father lives 5 hours away, I received the call that he might not make it through the week, and then next day I got the call he past. I do not know anything about my father’s death. I contacted his wife last night to ask about the details but now I am unsure that I want to read the email. I don’t know that I really want to know.

I plan on obtaining a living will within the next couple of months. I want my wishes to be known, and followed. I do not want to be kept alive; I only want to live if I can preserve some kind of quality of life. I do not want machines breathing for me. I do not want my family to have to make that tough decision. I do not want my children to see me like that. I am an organ donor and I want my organs used for good, if there are any left worth using. I believe in euthanasia. I believe in medicinal marijuana. I believe in stem cell research.

I am so aggravated by what cancer can do to people. It needs to be stopped. It is a fact that cancer is gene mutations; so if my genes are mutated and I reproduce, then my offspring is at a higher risk of cancer then someone with no cancer in their family. I have always felt that I will die of cancer. I know that. I have bad genes, cancer runs deep within my family. It is like waiting for the ball to drop. It does not help that I have had cancer once.

Sometimes you can try as hard as you possible can to stop the effects of cancer. My father wanted to live to see his youngest graduate from high school. He would tell me over and over again, the doctors say I can’t do it, but I will! He was determined…. And so was the cancer. The cancer was determined to eat him alive. To make it so painful that he would need more and more pills and the pain never left. He didn’t make it to his 3rd birthday. How is that any way to live?

We need a cure for cancer. I know it is probably not going to be found in my lifetime, but it needs to happen.

Saturday, May 9, 2009

I was having a conversation with someone on a different site who said that the thyroid meds build up in your system so it does not wear off ...per say.

You know, I tend to agree with you, although I do not want to admit it. I have been feeling horrible; moodiness is a sign that my levels are too low. I only get to this type of moodiness when I am at something like a .01. I could have sworn my levels were off during the past two weeks. I was tested...I am at a .23 hmmm, ok. I will not get into how this whole time she wanted me suppressed at a .02 and now a .23 is a good range for me… That is another discussion in itself.
Anyway, now that I know my level is "high" I "feel" better. It has to be in my head. I am very stressed over my upcoming cancer check, pending doctor switch, Thyrogen and time off of work. Not to mention I am moving June 6th, and my house is NOT packed. I had a CT that showed prominent lymph nodes last week, but my primary isn’t worried about it. I don’t see my specialists until June. My partner has a lot of stress on her plate as well, so I try to act fine not to add to her current upset. So yeah, the stress is piling up. I am happy I found this site because if I went only by how my doctors treated me and explained things to me I would still be lost. I am still surprised that the meds build up in your system...I have been taking my meds now at 3:45 in the morning and going back to sleep (if i am lucky)for at least a month. I feel more awake and ready to conquer the world at 630 when I get up.I do not have to convince myself to get out of bed, and drag my ass to the shower. I do not have to worry about taking a vitamin if I chose or having a glass of OJ when I get up. Then by 10p, I am so very tired, moody, cloudy; it’s hard to function. I guess that could just be me.

Wednesday, May 6, 2009

Seriously People

May 6, 2009

I hate how I feel, and how I act. I try to control it but I can not. It is like someone else has inhibited my body. I hate being mad and miserable ALL THE TIME. I hate not feeling, and not caring. I hate hurting those who are around me by my words. I hate the thoughts that are in my head. I hate being angry.

One year later, you would think that I would feel better or think about something else. I am frustrated with my doctor. I don’t feel like she cares, and to be honest she probably doesn’t. I do not know why people choose their specialties. They should know what kind of patients they are going to be dealing with prior to stepping foot into the field. I do not like my doctor’s defensive attitude. I do not care if she is the doctor, I am the patient, and I am inferior to her. I do not care if she doesn’t feel that she needs to answer my questions, they WILL BE ANSWERED. If not by her, I will find some other doctor that will care.

My levels have to be off. I do not know how a doctor can order medication for a patient and then not follow up. They change my dose, and brand. (all of the sudden two months ago, my doctor decided that she wants all of her cancer patients on brand name only. HAVE I NOT BEEN A CANCER PATIENT FOR OVER A YEAR) WTF MAN?!
So she changed me to brand name, and dosage, then she doesn’t order follow up blood work. I have been on this dose for close to 8 weeks, and I had to call and ask for a script. I have felt horrible since the dose was changed. I am supposed to go see her in another five weeks; I was supposed to wait to have my blood work in four more weeks. Honestly, someone might die in that period if they do not do something about my levels soon.

Sunday, April 19, 2009

What is good for the goose is good for the gander


The doctor’s office recently called me and told me to change my meds. I wasn’t sure that I really wanted to do that, or why they wanted me to do that. I did it one weekend and I felt horrible, so naturally I attributed it to the decreased dose. I am so use to taking the same dose, when I get up I take the same amount of pills out of habit. I was talking to my aunt one day, and she asked why they decreased my pills. I told her that I really didn’t know why. She commented that it really was not like me to “not know” something like that. She did have a point, so I called the doctor Monday morning. I was informed that my Endocrinologist was still out of the office on an unforeseen emergency, but that the receptionist was going to grab my chart and try to help me. I asked her why they decreased my meds; she informed me that my blood work was so low that I should feel horrible everyday, and she was surprised that I could function. She said the normal range was .4 to 4.5 and I was .03. She said that is way to low and that is why they took my medicine away….I started to get upset. It didn’t make sense to me, if I think I feel fine now other than being moody, and I my blood work is really low and they want to take my meds away …how am I going to feel????? So she offered me an appt with another doctor in two days…so I took it.

The new doctor is okay. She seemed to be on the defensive.
She explained that it works opposite, when your levels are low they lower the amount of hormone you receive and when your levels are high they give you more hormone to lower your levels. She explained that they want to keep my levels on the low range but not as low as I currently am.
If my levels are low then it lessens the risk of reoccurrence. Here we go again. That is all you had to say! She explained that she wants me to take the pills as she has ordered them, not to dose myself; and to have blood work done in 6 weeks. She also explained that it is an accumulative dose, so it doesn’t matter what days I take the smaller dose as long as I have a certain amount of milligrams at the end of the 7 day period. She still wants me to have a follow up scan in January, and she wants me to have a thyroid us in May. Hmmm….a Thyroid US on a nonexistent thyroid, so you know I had to question that. She said, that the cancer can come back in the lymph nodes around the neck area so they still perform thyroid us. Did I not just talk about this low chance of reoccurrence? UGH!

We also talked about the horrible or annoying side effects I have from the meds. She said that it is because I am over dosed and that she can prescribe MORE medication to help lessen the side effects. It is already getting ridiculous. I went to see the neurologist for my headaches and to review the MRI that started this whole thing, and he put me on a daily preventative medication. He wants me to see a Cardiologist to rule out PFO, which he explained as a whole in the heart. Well I have seen the Cardiologist in the past 4 years and I tend to believe that if I had a whole in my heart he would have seen that on my last Doppler. But God forbid I do not do what this guy says and something happens, I will have no one to blame but myself. So guess who has an appt at the end of the month with a heart doctor…ME! So needless to say the number one complaint that any person that sees more then one doctor has:
is that one thing always leads to another,
and you always end up seeing to many doctors,
with to many diagnosis,
and to many meds, and
to many headaches.

This leads to another thing that has recently upset me:
Do you think I want to do this? Well the answer is NO, I did not ask for this.
So do I expect you to do this when it comes to your health, and to do it without complaining…that answer is YES. I will hold you hand as you held mine. And I will tell you the same thing you told me…I just found you, and I am not ready to lose you yet. And I will add something else: I want the time that we have together to be enjoyable, and not hindered my some pesky GI, GYN, or any other problems!

So the next time you think that you don’t have to take that med, or see that doctor, remember what is good for the goose is good for the gander and if you don’t have to ….neither do I!

I know you didn’t ask to be part of the 2% or the %5 but you are…and that just means you are special!

I love you!

It’s Just Cancer

It’s Just Cancer!

I recently had the chance to talk to another thyroid cancer survivor. It was good to hear from someone who went thru what I went thru. We got to talk about diagnosis, surgery, treatment and life as a survivor. It was nice not to feel alone.

A mutual friend had put me in touch with her because they are doing a thyroid cancer walk in October in memory of someone that died from the disease. Died…from thyroid cancer…actually her thyroid cancer went undiagnosed for years, and it ended up spreading to her lymph and bones.

So many people, doctors included, seem to find it necessary to tell you that “you are lucky it’s ONLY thyroid cancer” and it is “one of the easiest cancers to cure”. Am I Lucky? Am I Lucky to have cancer? I was lucky…they found it early. VERY LUCKY: if that statement in itself isn’t ironic! Ok, well there are a few things I am lucky for: I am lucky Dr Podgorski, he is so diligent and recommended the study that found the mass. I am lucky I didn’t listen to my family doctor and wait to see an endocrinologist and have a biopsy because it is probably nothing. I am lucky my lymph nodes and blood vessels were unaffected by the cancer. I am lucky they found it at all.
But am I lucky that I have a family history of Lung, Bone, Prostate, Renal, Bladder, and Breast Cancer? Am I lucky to be predisposed to all of these cancers, and now I have to live on egg shells, waiting for someone to find a mass or cancerous cells? It is said that thyroid cancer doesn’t “go” anywhere… for example; breast and prostate cancer are known to go to bone. However, thyroid cells can grow anywhere but the cancer is not known to metastasize. So yes, I had my thyroid removed, and yes I had Radioactive Ablation. And yes, I have to follow up around Christmas with another scan and possible treatment to make sure they do not see any more cancerous cells. But no one will committee to doing further testing on me.

No one thinks I need to “look” for anything else, any other cancers. But have you ever heard of giving someone peace of mind?? My GYN conceded and gave me a slip to have a mammogram, which came up abnormal. So here I am, having picture after picture, back sitting on the same table where they told me that I have a mass on my thyroid, waiting to speak to the Doctor to hear what the abnormality in my left breast is. Thank God it was only a cluster of cysts behind my nipple. But that hour was very nerve racking!

The Endocrinologist’s staff called me last week and cancelled my appt; they told me to decrease my medication on the weekend only and have blood work done again in six weeks. Of course, I forgot to change my dose this weekend. I was going to do it on Monday and Tuesday when I remembered but I was afraid I would have some reaction to the decrease, like mood swing or exhaustion. So I figured I would wait and see if I could remember this weekend. Good luck to me!

One of my biggest fears was how the scar on my neck was going to look. Yes I know that was ridiculous, I know I was being vane. I was so upset prior to surgery about this. I asked the surgeon at every appointment what I could do to make it not as noticeable. I was simply neurotic. Now that it is over, I have learned to deal with it. Most days I just forget it is there, but sometimes that is hard to do. It is constantly itchy, the hotter I am, the more irritated it is. None of the patients at my job will let me forget it is there, everyone has to ask about it. Some days I just want to tell them I was in a bar fight, or a killer tried to slit my throat but I survived by defending myself. Prior to my surgery I saw a few people with scars…I was so curious to know what happened, and if it was the result of the same surgery I was going to have, but I didn’t have the audacity to ask. People say the stupidest things to you also. I don’t think anyone thinks prior to speaking.
And old friend of mine, someone I considered very close to me at the time, went to her doctor and he suggested cervical surgery. All she could say was, “I don’t want to have a scar on my neck”; as I sat across from her, 3 weeks post op with a scar across my neck, I just look at her and say “it won’t be that bad, we will match.” HELLO! ASSHOLE! Are you serious??

It doesn’t matter where I am, who I am with, someone always has a comment, or a question. I was at Petsmart right after surgery, the woman behind the counter asked about my scar and told me how good it looked; I was at the farmers market this weekend buying flowers and the woman said to me, “OH, You must have had thyroid surgery, my friend had that.” I was at work yesterday, it was my birthday, the last patient of the day said to me as soon as she saw me, “what’s the scar from” and I said thyroid surgery, she proceeded to tell me that her friend is supposed to have it out but doesn’t know if she wants to because of the scar. Wop Di Do, do you think before you speak?? I didn’t want a scar either, but guess what…I HAD CANCER! I didn’t have a choice! WTF? I don’t feel the need to tell everyone I come across that I have/had cancer. I do not need people feeling sorry for me.

Doctors try not to alarm you. They try to ease your mind, but at the same time they give you false hope. They make it sound as if, once you’re cancerous thyroid is removed, you are free and clear. You still need to follow up, but no worries my friend. Go on, live your life, don’t look back, your fine! Then in five years, whammy, its back again, your thought it couldn’t happen, but it did!

OH and the people who pretend to “be sick”. For the attention, because they are lazy, for whatever reason, don’t you think there are plenty of people right now, going thru different treatments, that wish they could be at work instead of sitting at the radiology oncology office being pumped full of different “anti-cancer” medications. Puking their entire stomach content into a basin because they are too sick and too weak to get up off the couch? And do you really thing telling that person, “its just cancer” is going to make a light bulb go off in their head, and they will say, “Wait! Why am I going thru all of this, its just cancer. It’s just mutated cells taking over all my healthy cells, eating me alive. No Biggie!”UGH people infuriate me.

A word to the wise:

What Cancer Can Not Do

What Cancer Can Not Do…

Cancer is so limited…
It can not cripple love
It can not shatter hope
It can not corrode faith
It can not eat away peace
It can not destroy confidence
It can not kill friendship
It can not shut out memories
It can not silence courage
It can not reduce eternal life
It can not quench the spirit

Serenity Prayer

God Grant me the Serenity to accept the things I can not change
The courage to change the things I can
And the Wisdom to know the difference
Thy will not Mine

Everything For A Reason

In March 2008, I had my routine MRI Brain preformed. I have been following spots on my brain called non-specific gliosis. The same radiologist has been reading my study for years and always said, “stable”. This year, I had Dr Podgorski read the study. He was a little curious as to why I had the spots at the age of 30 and what some reasons could be. He ordered additional studies to try to give us insight into these findings. One of the studies he ordered was a Carotid Doppler. He wanted to make sure I didn’t have any plaque build up in my arteries. I had the ultrasound done a few days later in which they found a mass on my Thyroid. The ultrasound tech told me, that I would probably need more testing. When I went back to see Dr Podgorski, he said he really wanted to have it biopsied. I went for the Biopsy in the beginning of April, and they diagnosed me with Papillary Carcinoma of the Thyroid. On May 30, 2008 I had a total Thyroidectomy preformed by Dr Lisa Reid at Cooper Hospital, with partner Nicole and my Mother by my side. It has been a roller coaster since my surgery. They put me on meds, just to take me off. I go from being angry, short tempered and irrational to crying in zero to sixty. I am not as mentally fatigued as they said I would be, but my muscles fatigue quickly. Along with being off the meds, I needed to go on a low iodine diet, which in no way made me happy or this time easy. I go for my Ablation (radiation) today. I am not looking forward to it because I have to be in isolation for the next four days. I am still trying to get out of it. HAHA! Nicole said to me this morning, “It’s a good day! Because today, the doctors are going to make sure you will be with me for the rest of my life!”
Now how can you argue with that??

Everything For A Reason!

Saturday, April 18, 2009

My Introduction

Hello! My name is Kristy...I was diagnosed with Thyroid Cancer on April 16, 2008. I had surgery on May 31, 2008 and ablation on 071108. Throughout the past year I have went on a journey of sorts....different feelings and emotions. I have always typed out my feeling, just never published them. I found it comforting to read others blogs and I thought maybe mine would help someone someday. At some point this weekend, I am going to start to load my blogs in order of which they were written. Please feel free to comment on my blogs... I will respond as soon as I can. I am in no way an expert on this subject and I feel extremely lost at times....so if you have advice...PLEASE let me know.