Tuesday, April 8, 2014

Dear Sir/Madam

I'm not standing for being treated badly without speaking my mind anymore. The following is a letter that I sent to Hillman C***** Center regarding my latest appointment. 


Dear Sir/Madam
 
A few weeks ago I had an appointment at the Hillman Cancer Center. The purpose of my appointment was to monitor the known cancerous mass in my right breast. I was diagnosed with invasive ductal carcinoma- triple negative in February of 2013. After two rounds of chemotherapy I decided to seek alternative therapy which I have been doing for over a year now with success. I say with success because the original biopsy used to diagnose the cancer also showed that it was incredibly  aggressive, having a 90% infiltration rate. So even though I still have cancer, it is confined to the original tumor and has not spread. My husband and I have put a lot of consideration into my decision. We have read and researched and have spent a great deal of money on my treatments. 
 
With that being said, I would like to tell you about my recent visit to your facility. 
 
Upon my arrival, I filled out the appropriate paper work in the waiting room, writing directly on the form that I currently have cancer, the type I have and the date of the diagnosis. My script from my doctor also stated that I had a known carcinoma and that I was there for a bilateral breast ultrasound. My name was called and I was escorted to the next waiting room and given a gown to change into.
 
While I was waiting I noticed the mission statement of your hospital stating that it is goal of your facility to treat each patient with dignity and respect. I had hoped this would have been the case, but as it turned out for me it was not. 
 
After a short wait, I was greeted by a mammogram technician named (Blah, blah, blah). (Blah, blah, blah) asked me my name and birth date to verify my identity and led me down the hallway towards the rooms where the mammograms are done. She informed me that I would be starting with a mammogram since I had found a lump and also since I had not had a yearly mammogram since 2010. I'm not sure why at this point she was not aware that I currently have cancer since she should have had both the form that I filled out and the script from my doctor that both stated my diagnosis. She also had the wrong medical records as I had never had a mammogram in 2010. In fact, I had never had a mammogram prior to 2013 when I was diagnosed because I was only 36 years old at the time. I informed her of this. She had me sit in the waiting room while she retrieved the correct medical records. But this really is the lesser of complaints from my visit.
 
Once back with the correct medical records she began asking me some questions regarding the gaps in my treatment. I explained to her that I had decided to seek alternative treatments. She said and I quote " oh, that's great, good for you", which by itself, I suppose, would have been fine, but she followed it with a story of a woman. (Blah, blah, blah) said "I knew a woman who tried to do it [cure her cancer] the way you are doing it, but she didn't use any common sense about it. When it became obvious that it doesn't work she still refused treatment, and well, you know." I was a little taken back that she would be sharing this with me.
 
Then she informed me we were still going to start with a mammogram. When I informed her that I wasn't interested in having a mammogram she became very irritated with me and arguing with me about my decision. I ultimately ended up giving in but I still believe that the mammogram was unnecessary. I don't think I should have to debate whether I get a mammogram or not with the technician when my prescription from my doctor was clearly for a bilateral breast ultrasound. If I say I am not interested in having a mammogram done, I don't think the technicians should argue with the patients about their decisions. But, even this is not the biggest part of my complaint.
 
While she was performing the mammogram she asked me about the types of treatments I am doing, which I didn't mind answering. What I did mind was (Blah, blah, blah) then saying to me, "you should be careful what you are reading" and also, "there's just no scientific prove of what you are doing". 
 
 I have had ultrasounds done every three months for the past year. I have had them done elsewhere and have gotten conflicting reports. I chose Hillman for my testing this time because cancer is what you do. I consider the doctors there to be experts. I do not expect people in the medical field to necessarily understand my decision,  but what I do expect is quality care regardless of my course of treatment. I expect the same respect as a patient as someone who has chosen chemotherapy, radiation, and surgery. I do not expect to go to an appointment and argue and debate my views or my choices. I do not expect to get unsolicited advice or to be belittled, or to have my intelligence insulted by the technician. But yet this is exactly what has happened.  
 
I hope that this kind of behavior won't be continued to be accepted by Hillman Cancer Center. I am extremely disappointed that all patients aren't treated equally at your facility. And maybe (Blah, blah, blah) would benefit from some sensitivity training because although my fight may differ from others with cancer, I am still fighting for my life. 
 
Sincerely,
 
Mrs. Tara McCreary

Saturday, March 29, 2014

March Ultrasound

As most of you know, I recently had a breast ultrasound to check the status of the c*****ous tumor hanging out in there. It had been three months since I had any imaging done, so I thought it was time to check things out.

First, let me back up and start by telling you about my appointment with my PCP and how that came about. Many months back I had an appointment with my primary care physician, who is a family practitioner. He had asked me to keep him in the loop concerning my condition and forward results of any tests to him. So after December's testing I had sent him the results via email like he had asked. Several weeks went by when I started playing phone tag with him. Eventually, I guess he figured he would just send me a letter.

It was short and sweet and to the point. It read:

Hey Tara,

Thanks for the email and update. As you clearly know imaging isn't 100 percent and can be interpreted in various ways. I am glad you are keeping an eye on things and if at any point you want to discuss them I am happy to do so.

And, of course, I greatly appreciate your updates as I am thinking about you and how it is going.

Hope you and your family are well.

Sincerely,

Dr. Good Guy, MD

I wasn't sure exactly what he meant by testing isn't always 100% accurate, but I thought, hey, why not, a fresh pair of eyes would be a good thing and I was curious what his take on the situation was.

Once in the exam room, he positioned his laptop between us so we could look at the results of the last three sets of imaging together. He didn't have one negative thing to say. If fact, he was very encouraging. He said he respected my decision and that I had obviously spent a lot of time researching everything I was doing. He asked me how he could be of help to me. So I asked him for a script for another ultrasound and blood work. He even asked me if there was anything specifically I wanted tested in the blood work. He's a keeper.

During the appointment, I thanked him for his willingness to help me, to which his reply was "why wouldn't I do everything I can to help you?". That's how doctors should be. I have no idea whether he agrees with my decision or not. That really isn't the point. The point is that he respects my decision. He respects the fact that it is my body and I should have the choice to treat my ailments how I see fit. I have read a lot of stories where this wasn't the case. Then I experienced it for myself as you'll read about in a minute.

One of the things I had discussed with Dr. Good Guy was where to go for the impending ultrasound. I had brought up going to Hillman C***** Center for their expertise. C***** is what they do. Who better to go to, right? He agreed, stating, like anything else the more you do something the better you get, the more knowledge you gain in that area. So, Hillman it was. Another good reason to go to Hillman, so I thought, was because this is where I had had my original imaging done.

I knew what this would mean for me, though. I knew this would mean coming face to face with the opposition. I had made up my mind that I was going to go in there proud of the decisions I had made, confident of what I believed in and defend my position strongly. HA!! Not quite what happened.  But it was a nice thought. All the pep talks in the world couldn't have helped me out that day.

The first thing you do after signing in is fill out a form - family medical history, prior lumps and bumps and c*****. All the usual questions. I wrote in large print letters: CURRENTLY HAVE C*****, TRIPLE NEGATIVE, DIAGNOSED 2/18/13. Important detail for later in my story.

They shuffle you from the main waiting room to another one where you sit undressed from the waist up awaiting your turn wearing a fashionable hospital gown sitting alongside a handful of other anxious woman, separated from any support person who may be there with you. I, of course, already knowing the system, chose to go by myself.

After a very nerve racking twenty minute wait which I spent thinking of quick witted replies for possible questions, this seemingly friendly middle aged lady came to the doorway and called my name. To make sure they have the right person the first thing they always ask you to do is state your name and date of birth, which I did. Then she said, "Hello, my name is blah, blah, blah, I am going to be doing your mammogram today". She proceeds to tell me how if I have a lump the first thing the doctor is going to want is a mammogram and not an ultrasound and since my last mammogram was in 2010 (yes, she said 2010) then I was due for my yearly anyway.

WHOA, WHOA, WHOA, stop the train!! I wasn't there for a mammogram. I was there for an ultrasound. And furthermore, I had never had a mammogram prior to 2013 when I was diagnosed for my known carcinoma!! So clearly they have the wrong person even after having all my information. I politely explain to her, because I had made a conscious decision to be kind and Christ-like no matter what, that I am not there for a mammogram, I already know I have c*****, and I never had a mammogram in 2010. Not a great start to my appointment, but hey, everyone makes mistakes. I was willing to overlook that little mishap and move on.

She returns a few minutes later, after, I can only assume, retrieving the correct medical records. She sits down next to me to ask me a few questions.

"The last thing we have on file for you is that you were going to Dr. So and So at Magee Women's Hospital".

So this was it. It was time to have a moment of truth.

 "Yes, then I went to C***** Treatment Centers of America (CTCA). Then, this is where my story differs from most, after two rounds of chemotherapy I decided I was going to seek holistic treatment. I have been doing that for almost a year now".

Want to know her reply?

 She said very excitedly, "Oh that's great. I'm so glad to hear that."

 Sounds good, huh?  What a relief. She was a supporter.

Then she asked me what doctor I was seeing. Her words, "who do you see for something like that?". With my defenses down, because I thought she was on my side, I told her. "Oh, I went to Dr. What's His Name in the beginning. He gave me a list of supplements to take." (Keep this in mind, too.)

Luckily, I was very careful with my wording because as I would soon find out, she was anything but on my side. I am well aware of the fact that it is against the law to claim to treat c***** by any means other than those approved by the good ol' FDA. Chemo, radiation, surgery being the main ones.

 And truth be told, I really don't see anyone. I had a couple of appointments early on in the process where I was given a specific regimen to follow to aid in boosting my immune system. The couple of nutritionists that I did see made it very clear that they don't treat c*****. I even signed papers stating that I fully understand that they were not treating me for c*****.  They treat my immune system, my immune system fights the c*****. That's how it works.

After that little conversation she said the doctor would still like a mammogram because I was "due" for my yearly anyway. This is where I started to feel just a tad defiant. You see, I am not in favor of the yearly mammogram that they tout. Mammograms use radiation and radiation causes c*****. I am already at high risk for c*****, obviously, and really I didn't see the need for it in this particular situation and I told her such.   Agree or disagree, that is my position and I should have the right to choose what I feel is best for me without further harassment.  But being that I was on their field, I eventually gave in and played ball by their rules. Though, it was apparent that Ms. Blah, Blah, Blah was very annoyed with me and couldn't understand my point of view at all.

Now the next part is where I truly failed. I apologize to all the people who think like me for doing such a horrible job at representing our position.

Keep in mind that while getting the mammogram there was conversation the entire time. For anyone who has had one before you know that it's not a super lengthy process but not super quick either. It might take 10-15 minutes. So just like when you get your hair done, even if you'd rather not talk, you make polite conversation. I thought that was what we were doing, at least at first. Until I realized it was really more of a time for this lady to insult my intelligence and interject her unsolicited opinions. Thanks, but no thanks, lady.

While having the mammogram done she noticed the discoloration of the right breast and questioned the reason for it. She referred to it as bruising, but in reality it was caused by a hand-held infrared light. I use it nightly and on occasion I have been known to dose off, leaving it on for a few extra minutes. So, technically it is a burn, not a bruise. Anyway, I explain this to her. Now, people can ask, "why?" and be genuinely interested in learning something, or they can ask, "why?" with an accompanied look of disgust on their face and not really care to learn anything. It was definitely the latter of the two that she asked me. I had explained that I had read somewhere that it could help. Her reply, "you should really be careful what you are reading", of course, with the same look upon her face.

Now, since this was said sometime after she had told me that there was no scientific evidence for what I was doing, I was definitely good and annoyed at this point. Up until then I was quiet. I had tried to defend my position but my mind was totally blank. All the quick witted responses had been buried under a huge cloud of disbelief that she was actually talking to me like this. Was this the same lady who couldn't manage to read the form that I had just filled out with the large print letters stating that I currently had c*****? Is this the same lady who just pulled the wrong person's medical files and didn't catch it even after I gave her my date of birth? And now she wants to tell me about medical evidence and warn me to be careful of what I read!!! It's not as if I read what to do on the back of a Cracker Jacks Box.

Why couldn't I think of something to say?  As hard as I tried, I had next to nothing. It's harder than you may imagine to articulate a reasonable point while having your breasts smashed. And as if having your breasts fondled by a strange woman isn't degrading enough, I had to have my intelligence questioned at the same time. Thanks for the extra salt tossed in my wound, lady.

The only thing I got out of my mouth was that the theory behind the infrared light was if the c*****ous cells were heated above 108* F they couldn't survive. I'm not even sure if that's entirely true, but it sounded good and I knew she wouldn't have any idea what I was talking about. I would have liked to, in retrospect, told her maybe she should read more, or maybe she should focus on doing her job correctly before worrying about how I choose to treat myself. Or perhaps she should try to learn something for herself instead of just regurgitating what is spoon-fed to her by the medical talking heads. So, yes, maybe it was best that I lost my words that day.

If only this were the end of my appointment, I would have left as one annoyed little camper and been on my way. All the insults and I hadn't gotten the ultrasound that I had come for.

Once in the next room, I waited just a few short minutes, long enough for the breast smashing tech to inform the radiologist that a nut job awaited her in room three.

The conversation went a little something like this.

"So, I understand you had two rounds of chemo and then stopped to seek alternative treatments and are now seeing Dr. What's His Name?"

Well, I'm certainly not getting caught in that net. I sternly reply, "No, that is not what I said. I told her that I buy my supplements from him. That's all."

"So who do you see for your c*****?"

"I don't see any doctor for my c*****. I consult with my primary care physician regarding any tests results and that's it."

If I was going down in flames, I certainly wasn't trying to take anyone who has tried to help along the way with me. I saw the line of questioning as a blatant attempt to try to incriminate doctors who won't toe the line. If you think I am being paranoid then just watch Burzynski: C***** is Serious Business on Netflix. Then get back to me about paranoia.

Anyhow, turned out that this doctor was the same doctor who had done my biopsy the year before, the one I had questioned about the importance of placing a titanium marker at the site. Now for round two.

I sit up after she was done. I had asked if she would discuss the results with me or if I would have to wait until my PCP called me to know the results. She said she would discuss them with me.

Now, this is where things get strange. And well, when things don't make sense, I start to question what I'm being told.

She said, "I'm concerned because it is bigger than it was last year."

Yep, strange. I had the same look on my face when she said that, that you probably have on your face right now reading this if you've been following along for awhile. P-U-Z-Z-L-E-D is the only way to describe it.

"This is very odd. This is so completely different from the results of my ultrasound done three months ago".

She was taken by surprise that I had had additional imaging done. "You had another ultrasound done? Somewhere else?"

"Yep. Three months ago. And three months before that. And three months before that. And this is completely different from what any of those said."

She shrugged her shoulders and went back to pointing at the images still on the screen. "It's a different shape, but bigger."

"Hmm, well, it obviously isn't growing at the rate it was because the biopsy results showed a growth rate of 90%."

Now she was speechless. I'm sure if the oncologists with many more years of experience than her had never had a patient with such an aggressive c***** than neither had she with her many fewer years on the job.

At this point I was too confused to feel defeated. That wouldn't come until the drive home.

I was staring at these images, but they mostly don;t mean much to me because I don't know what the heck I'm looking at. So I ask her to explain some things to me. I'm looking at grey matter vs. black matter. What's the difference? This is how it was explained to me. Grey was the harder, thicker tissue. C*****. The black was either cyst-like or necrotic tissue. Necrotic? Dead tissue.

Keep in mind that at this point in the appointment I am very interested in their take of the situation. They clearly don't think I have two brain cells to rub together and well, let's just say I decided to play along.

Necrotic? Why would there be necrotic tissue in the tumor? And her explanation? Because the c***** is eating away at the surrounding tissue.

Umm, yeah, I don't think so. Besides, it was inside the borders of the tumor. Not in the surrounding tissue.

I asked if she had used Doppler to check for blood flow. She hadn't. So she had me lay back down to take more images. There is blood flow. I'm thinking blood flow is good. Blood flow takes the needed supplements to the cells to kill those bad boys. But let's check to see what the doctor thinks of blood flow.

She says blood flow is bad. Why? Because the blood feeds the tumor. Well I guess if I was eating animal protein and sugar it would be. But I'm not.

Any guesses where that necrotic tissue was? Same place as the blood flow. That's where.

To make matters even worse, when I got the written report from the hospital the test results were stated in the report in two different places and they were different numbers in each place. So I don't even know which one might be correct or how greatly exaggerated. However it may be. UGH!!

Now, just for the sake of argument, let's assume that this doctor is telling the truth. We would then also have to assume the last three ultrasounds were wrong. Let's say that for the last year I haven't managed to shrink the tumor at all. Have I failed in what I was trying to accomplish? No, I don't think so. Worst case scenario I have only stopped the tumor from growing and spreading and I have not managed to shrink it. This is one possible theory.

Theory number two. This doctor exaggerated the margins of the tumor to emphasize her belief that I should treat my c***** with chemo, radiation and surgery. She used her power to tamper with test results in order to use those results as a scare tactic.

I've come up with theory number three and four but really they just get way more confusing from here. I honestly don't know what the complete truth is at this time. Every theory leaves me with more questions than answers. Not one of them makes sense with all the pieces to this puzzle.

So while the actual size of the tumor is questionable, there are certain things that we know for sure, verified by the mammogram and ultrasound images done that day. After one year of no conventional medical treatment of a very, very aggressive breast cancer (90% infiltration/growth rate) this is what I know to be true:

1. The c***** is confined to one tumor in the right breast. ( size undetermined at this time)
2. No lymph node involvement
3.It has been determined that it is in fact the titanium marker that was placed in the middle of the tumor that I can now feel. (but yet somehow I am supposed to believe the tumor is bigger)
4. The tumor that once was protruding from the breast surface feels flat even though the breast itself is smaller because I have lost 25 pounds since then.
5. Parts of the tumor have either become cyst-like or are necrotic as compared to previous images
6. My Ph levels are consistently in the normal range

I'm not sure at this point what someone's argument would be against what I am doing. I know that my decision to not go the typical route has annoyed people and made others very angry. Everything I am doing is based on scientific evidence, even though it isn't well documented or widely excepted by the medical establishment.  More people should be asking why it isn't. Why aren't people told that c***** feeds off of animal proteins and sugar? Why if what I am doing is working am I the one seen as crazy?


(NOTE: Just in case you hadn't figured it out, all the names in the retelling of this story have been changed to hide their true identities )  ;)






  





Tuesday, March 4, 2014

What is that?

February 18th marked my one year anniversary. In some ways it's hard to believe that it has already been one year and in others it's hard to believe that it hasn't been longer as it feels like on some days as though it has been many.

I've been thinking back on the days leading up to the diagnosis lately, both the day that I had the mammogram and ultrasound and the day of the biopsy. I can quite vividly remember the expression on the radiologists face as she was looking at the ultrasound screen. I had gone to Hillman Cancer Center where the radiologist was actually the one doing the ultrasound not a technician. She chose her words carefully and at that time I was clinging to any possible diagnosis other than the dreaded "C" word. She had given me the name of something else that it could have possibly been,  as we later found out that would be false hope.

I returned on a different day to then have the biopsy done. I thought I knew what to expect as they had described the procedure to me when it was determined from the ultrasound I would need a biopsy done. Only as I sat in the exam room waiting all alone I took notice of some small cubes of clear plastic. In each of the several cubes were very tiny, differently shaped pieces of metal. I would soon find out they were titanium markers. I remember thinking that if one of those things were going to be placed inside of me that no doubt that is something that would have been told to me. Right?

After someone came in and asked a bunch of standard, routine questions I was escorted to the room where the biopsy would be done. I was then sitting in the room on the procedure table with three hospital employees around me when finally they explained that after the tissue sample was taken a titanium marker would be placed in the tumor. I was wrong! I had a hard time believing that everyone up until that point had left out what I thought was such an important detail. I like making informed decisions, but evidently that wasn't going to be possible. I argued against it, but outnumbered 3 to1 and they were saying it is absolutely necessary, I really didn't feel as though I had any other choice. I ultimately gave in with the thought that I would eventually have a lumpectomy and it would no longer be of any concern.

Several days later I learned the results of that biopsy. And here I am one year later.

A few days ago, I was feeling what is remaining of my once stage II sized tumor and felt something peculiar. Imagine the thinnest gauge guitar string possible was wrapped around the tip of a pen then the pen was removed leaving only this small, rounded, very thin wire. That's what I can feel peeking out from surrounding hard tissue. Now I can't say with 100% certainty, but I believe that what I am feeling is the titanium marker that was placed during the biopsy. And since I wasn't able to feel it until a few days ago, I do believe that is a good indication that the mass is continuing to shrink.

A lot of people have been asking me if I have gotten another ultrasound, yet? I have not. That's the plan, though. So after I have I'll be sure to let you all know what those results are. For now, continued prayers are appreciated.

Tuesday, January 28, 2014

JBQ...What's That?


 Aiden, who just turned 10 years old,  competes on a Junior Bible Quiz team. Junior Bible Quiz (JBQ) is a nationally recognized competition where the competitors, in teams of up to 4 in our district and up to 8 in other districts and nationally, study and memorize predetermined sets of questions in a JBQ study guide book. In the Penn-Del district only third through fifth graders are eligible to compete.  Questions are valued at 10, 20, or 30 points. The questions cover all books of the Bible and range in difficulty according to points. There are a total of 576 questions but our league only plays half the book each year rotating every other year which half is played. Three quizzers from two opposing teams sit at a table with hand buzzers while a quiz master reads questions. When a question is read the quizzer buzzes in, interrupting the question. They then have to finish the question and answer it correctly. If the question is answered incorrectly the team loses half the point value of that question. If an individual quizzer answers five questions correctly during a round that quizzer "quizzes out". If a quizzer answers three questions during any round wrong that quizzer "errors out". Each round is made up of 20 questions and generally there are 7-9 round at a match. There are three matches in the regular season followed by district semi-finals then district finals in Hershey, Pa.  It actually takes a whole lot of work on the quizzer's part to memorize not only the questions and answers but also the appropriate buzz-in point of the question. It's the job of the coach to figure out the best strategical method of play. 

Our involvement with Junior Bible Quiz started three years ago when our daughter, Reagan, was in the third grade.  She competed that first year as a ten-pointer. With what seemed to be very little effort she memorized all her questions, answers and buzz-in points. She also seemed to be gifted with quick hands for buzzing in.

The following year Brennan, who was in fifth grade, decided he wanted to quiz, also. It turned out Brennan was equally as talented at quizzing as Reagan. With Reagan learning the 30 point questions and Brennan the 10 point questions and a third equally as quick 20 pointer, their team was unstoppable. For the first time in the history of their school competing in JBQ they went to nationals. That year nationals were to be held in Orlando, Florida.

As a family we were unsure we would be able to commit to the challenge. There were many things to consider the biggest of which was how were we going to afford a week's vacation in Florida for a family of six. It seemed impossible.

After much prayer, we agreed to go and everything fell into place. We would do fundraising to offset the travel costs and one of the team members offered to have us stay in their timeshare with them at no cost. We were soon on our first family vacation and national JBQ finals in Florida. What once seemed impossible became possible.

Nationals were very eye-opening. We went from being the big fish to very tiny fish competing against the best of the best from all over the country. These kids were QUICK!!  Out of 80 plus teams competing our team came in 55th.

According to Penn-Del district rules only third through fifth graders can compete, but national rules differ. To compete nationally you can be in the second grade through the sixth grade. So the next year, which was last year, Brennan was too old to compete in our district, but Aiden was entering the third grade and to my surprise he wanted to quiz. I admit I didn't think Aiden was going to do very well. And not being able to read how was he going to learn the questions? It was because of Aiden that I decided to become a coach. It was my way of protecting him in case he didn't do well.

Reagan, now in her third and final year, was our 30 pointer and Aiden was a 10 pointer. I soon realized that Aiden was just as capable as his brother and sister at excelling and soon gave him the added extra challenge of learning not only his 10 point questions but I also had him learning 20 point questions. For Aiden having dyslexia didn't stop him, it only changed how we had to study. We ordered the mp3 version of the questions and he learned through listening to them when I wasn't available to study with him.

Just like the year before,we were on the road to making it to national JBQ finals. I would have my dream team, Brennan, who now met the grade requirements to quiz nationally, Reagan, and Aiden. The only year that three McCreary's could all compete at a national level on the same team.  This time our destination ---Texas!! I was so excited. I had it all planned out. We could just fundraise again to offset travel costs and that same team member said we could stay with them in their timeshare again. There was nothing to stop us....so I thought.

But it was just after semi-finals last year that I discovered a lump in my right breast. We went to district finals in Hershey, Pa and I sat through the awards ceremony knowing that when I returned to Pittsburgh I had a biopsy scheduled.

It's still so hard to believe that it was a year ago. I remember standing outside of the hotel in the cold so the kids wouldn't hear my conversation while I was on the phone with my doctor. He wanted to touch base about what had been found on the mammogram and ultrasound.  At that point we still hadn't told the kids anything.  Brennan later told me that he knew or at least suspected I had c***** because of the changes I made in my diet. He had remembered me talking about animal proteins and sugar feeding c*****. And that by eliminating both you could slow down or even stop its growth.

The results of the biopsy were devastating enough but then to add salt to my wounds it also meant we wouldn't be able to go to Texas. This once in a life time opportunity of my dream team would never be. I would now need to turn my focus to the battle of my life.

So here we are a year later. Last weekend Aiden's team that I coach competed in JBQ semi-finals and the top four teams in each of the two divisions would go on to the district finals in Hershey, Pa. Our team was tied with one other team for first place in our division but since it was decided by head-to-head our team would end up being in second place.  We made it to Hershey, again.

The kids competing in JBQ and me coaching it has honestly been one of the best experiences for us as a family. It combines two of the things I love best, the word of God and competition. It is absolutely amazing to see what these kids are capable of memorizing. You wouldn't believe how intense the matches can be. Ian has already decided he wants to quiz when he enters third grade next school year. He's already started learning his 10 point questions.

I honestly thought by now I would be c*****-free. I thought when it was time to consider whether we would go to national JBQ finals this year I would be past all this. But alas, here I am. Not quite there. I don't know whether it would be the right decision for us or not.  Even though they don't take place till June we will need to decide within the week after returning from Hershey. I'll be praying about our decision. Ultimately, the decision isn't mine. If we are meant to be there God will make a way [where there seems to be no way].











Sunday, January 26, 2014

17 weeks and counting...

This post is dedicated to my friend, Jamie, who reminded me over lunch last week that I haven't posted in awhile. Thanks for over 21 years of friendship with births, marriages, deaths, more births, and for me more and more births, marriage struggles and c*****....I think we've covered just about everything.

Now to my update: 

Imagine trying to watch your hair grow. Imagine trying to watch grass or a flower or a child grow. When you are in constant sight of something you often don't notice the subtle changes like you would if you hadn't seen it for awhile. Similarly, it is hard for me to tell whether this mass is getting smaller from day to day. I would most definitely benefit from not paying it any attention for a period of time, say even a week, but instead I'm almost nearly obsessed with touching it, trying to figure out if it is smaller than the day before. I can't tell you if that is the case, but thinking back to December 4th, the day of my last ultrasound, I know for certain it is smaller now.

I'm not sure that what I have remaining even qualifies as a lump anymore. I can no longer grab it around the edges in either direction, left to right or top to bottom. It is taller than it is wide, but feels nearly flat, especially around the edges. From what I can feel, in the middle there seems to be a pit or a dimple. It would seem to me, if it continued to shrink in the same pattern it would be two separate smaller sections of hard abnormal tissue. 

I have my days where I get frustrated because I was truly hoping it would have been gone by now. I've read lots of stories of people who have cured their c*****s in much less time than this. Although I've read just as many that took longer. On days when I'm feeling down and out I try to remind myself that as long as I am making progress, no matter how long it takes, I'm moving in the right direction. 

My journey on a holistic path began in April. I've made mistakes and gave into temptations in those early months from April through September, eating things I shouldn't have eaten, and ultimately caused the c***** to grow and spread. That is why when I am eventually c*****-free and count the number of weeks this took I will be counting from September 29th. That's when I switched back to what I am doing now. Since my late September ultrasound I have not eaten things that I shouldn't have. I have had absolutely no animal products or by-products and no sugary items, no sugar substitutes, nothing with sugar as an ingredient, which was one of the mistakes I made the first go at it. Both the salsa and the tomato sauce I was eating had sugar as an added ingredient which I never would have suspected. 

Not being able to enjoy the usual foods that I have eaten all my life has had its challenges. But I can say that I have successfully made it through Thanksgiving, Christmas, New Year's, Brennan's birthday, Reagan's birthday, Aiden's birthday, Bob's birthday, and my own birthday. (not in that order but all since the end of September till now) I haven't snuck so much as a bite of any off-limit foods. 

I think most people would be surprised if they knew what I ate, after all being a gluten free, organic, sugarless vegan who is not allowed fried foods, salt (I am allowed sea salt), caffeine, fluoride, GMO's, tap water, microwaved food, artificial colors, flavors, or preservatives sounds pretty restrictive to most. (this may not be a complete list)  But I have found many new foods that I enjoy. Tonight's dinner... Thai curry sauce over lightly sauteed Asian vegetables with organic wild rice...mmmm.

When my friend and I met for lunch last week it was the only time during this past four months that I had gone out to eat for the obvious reason....What was I going to eat?? I gave in on the organic figuring if that was the only time it wouldn't do much harm. I was actually surprised when I managed to order a fulfilling meal off the menu. Jamie and I both had a good laugh at how completely random it was. I had a side salad, no croutons, with Italian dressing, a baked potato, no butter or margarine, with a side of salsa, and a bowl of fruit. Although I wouldn't make a weekly event of this while still being in the active c***** stage it was nice to be able to go out and visit with a friend I hadn't seen in a long time. ( This I guess could be considered eating something I shouldn't have because it wasn't organic, but it was the only time. I definitely didn't eat any sugar and animal....just to clarify)

On a side note:

Since quitting chemo in March my hair has been a work in progress. It started slowly growing back about six weeks after my last treatment. I trimmed it with clippers every other weekend for the first couple of months until it got thicker. Since then I have let it grow having Bob or my mother or the kids trim just the hair at my neckline so as not to end up with a mullet. It's been slow to get here but I finally have 2.5 to 3 inches of hair, ten months later. Darker than it once was, I am thankful it didn't come back in gray as I heard it can. And maybe with some summer sun it will lighten up. I am considering at some point in the not too distant future getting an actual haircut.














Tuesday, December 17, 2013

Imagine the Unimaginable

From the time I found the mass in my breast in late January until I finally got a diagnosis on February18, I played out the moment I would hear the news over and over again in my head, imagining what it was going to  be like to hear them say those words. I imagined how they would say it. I imagined where I would be. I imagined how I wanted Bob to respond.  I imagined how I would react. I imagined how it would feel. I imagined every possible scenario there was to being told "you have c*****". But thinking back he never even said those words to me. He said "it's not good, it's invasive ductal carcinoma". I guess it's a good thing I'm relatively intelligent or I may not have even understood what he was saying. But I did understand and nothing I had imagined compared to when I was listening to him say it in reality. It was unimaginable.

Here I am, 10 months later, sitting here imagining. But this time I'm not imagining how devastating it will feel. I'm imagining how happy I will be. I'm imagining how I'll find out. I'm imagining where I will be. I'm imagining who I'll tell first. I'm imagining how others will respond. I'm imagining how I'll react. I'm imagining what it will be like to hear them say "you don't have c*****". And I imagine it will be pretty unimaginable.  

Thursday, December 5, 2013

December Ultrasound

Just a little over 24 hours after my latest ultrasound I received the results via email late this morning. I was honestly confused by what it said at first. It contains a lot of medical lingo. Really the only thing worse than not knowing the results is having the results in front of you and being completely confused by them. After looking up all the different terms and comparing it to past reports I finally had it all figured out and I was super excited.

The last ultrasound results from September had shown 6 masses total. (You can reread those results in the post "Crunch Time") I believe it was 4 in the right side and 2 in the left side. One in the right side known to be c*****ous measuring 1.6 cm. Another one in the right side thought to be a fibroadenoma (non-c*****ous) first detected in February. Two new ones found also in the right side. And lastly, two new ones found in the left side.

After the experience I had at the last place I had gotten an ultrasound, I decided to return to the original place I went to in June after deciding to do a holistic approach. I realize now the importance of going to the same place and how helpful this would have been to the process. This isn't a mistake I will make again.

So here's why I'm excited. These results say that there were NO masses, NONE found in the left side at all. There were two masses on the right side. The original c*****ous mass that had previously measured at 1.6 cm was now measuring at .8 cm. That's half people!! The tumor shrunk in half!! The only other mass was the already known fibroadenoma. I'm one very happy lady tonight. Lymph nodes on both sides are still swollen but normal for the situation.

So while I'm definitely not out of the woods yet, I can see daylight peaking through the trees.

Please, feel free to share my story. I want people to know. I would very much like for more people to know my story so when I have my next ultrasound I can finally prove that it is possible. There are options. And if I can do it, so can they.


Friday, November 29, 2013

New Traditions are Born

Thanksgiving day is usually a time when family and friends gather together, eat their favorite holiday foods and enjoy each other's company. Most years this is what we have done, too. This year, however, I decided that I would rather stay home. The inconvenience of trying to go anywhere caused by diet restrictions, both my own and the kids', made the idea of going anywhere just seem not worth it to me this year.

We did have an enjoyable, though non-traditional, day. We took the kids to the movies to see Frozen. I actually can't even remember the last time we all went to the movies together, if ever. Apparently this is a lot of people's holiday tradition because the movie theater was quite busy.

We skipped the turkey part of dinner, but Bob did make some of the other holiday usuals. He made special versions of old time favorites that I would be able to eat. I indulged in vegan mashed potatoes and gravy, gluten free, vegan stuffing and corn...mmm, mmm, mmm. It was so nice to have something different from what I usually eat.

The kids on the other hand don't enjoy Thanksgiving feast type foods, with the exception of Brennan, so Bob made them homemade pizzas. Bob's grandmother had made a pumpkin pie, so they enjoyed dessert first with gram and pap followed by dinner at home. I told you it was completely non-traditional.

I had learned such a valuable lesson from making my own list of what I'm grateful for that I decided to pass the lesson on to my children. I had each of them make a list of what they are grateful for and we shared our lists sitting around the fire pit enjoying a winter fire with some hot cocoa for them and veggie juice for me.

It was a stress-free, relaxing, much needed kind of day. And I do believe that a completely non-traditional Thanksgiving will be the "new tradition" around here.

  

Thursday, November 28, 2013

Giving Thanks

The following is a list of 30 things I am grateful for in celebration of Thanksgiving. When I started the list I was feeling anything but thankful. After focusing my energy on all that I have instead of what I don't, my mood began to lift. After reading it leave a comment saying what you are grateful for.
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(This list is in no particular order and is by no means a complete list. I am thankful for these things and so much more)

30. TV land - because I love watching reruns of past favorite shows

29. to be over my fear of flying- I now have a sense of freedom that I could go anywhere in the world (well, if I had the money)

28. for my reverse osmosis unit - Bob connected it to our refrigerator so not only do I have clean water to drink I also have clean ice

27. my 18 year old Chevy Suburban - though it's old and falling apart, it still gets me to and from wherever I need to go

26. to be free from my addiction to diet soda - I haven't had any since the day I found out I had c*****, that was over 9 months ago

25. to be free from my addiction to soap operas- what an incredibly useless and wasteful way to spend my time, though I'm quite sure I have found new incredibly useless and wasteful ways to spend time

24. my job because not only does it pay bills but I get to be off most of the same days as my children and the summer

23. My grandmother from whom I have learned so much - She's almost 94 years old and has a lifetime of stories dating back to before the Great Depression

22. for all the people, some friends old and new and some people I have never met, that take time to leave comments / send me messages - those comments shed some light on some of my darkest days

21. for winter coat pockets- never fails, every year I feel as though I hit the lottery

20. for my best friend who would drop everything if I needed her, would give me her last dollar and not think twice, keeps all my secrets and supports me through all life's bumpy roads

19. my mother's love - I've definitely given her more than a few sleepless nights but she never gave up on me

18. my mother's guidance and support (yes, my mother gets two) at the age of just 15 I was pregnant. She protected me from the ridicule, gave me the option to give my baby up for adoption or to keep him, then taught me how to be a mother and made me take responsibility for him rather than doing everything for me. It was so difficult at the time but I love her for it now.

17. that for 10 years I was able to be a stay-at-home mother to my 5 beautiful children - financially it was rough but if given the chance to do it all over again, I wouldn't change a thing

16. soccer- even though it takes up so much of our lives, the boys love it and the joy that it gives me watching them play is priceless

15. for chick flicks- because sometimes they are just so necessary

14. my only daughter- for being my little sidekick and well, the fact that we now wear the same size shoe, 'nough said

13. my oldest son- for not having been the typical teenager

12. my second born- for sharing my off-beat sense of humor

11. my fourth born- that through his food sensitivities I would have the opportunity to learn so much. It changed the course of our lives. His persistence in the midst of his struggles with dyslexia are inspiring and motivating. Though early on he was labeled the "bad one" by others, his adventurous and spirited personality bring joy to those around him

10. my fifth born- for being the best not girl baby ever. (I so desperately wanted a sister for Reagan) He absolutely never cried and slept through the night from the time he was born. His quiet demeanor and ability to play by himself made him the most perfect fifth child a mother could ask for.

9. for text messaging - because talking on the phone when you have children is a rarity.

8. that on 11/25/13 I combed my hair for the first time in 8 months :)

7. for all those who have given money, bought t-shirts, or candles, sent cards and more cards

6. for everyone who has prayed for me and continues to pray for me

5. for precious quiet moments alone - because they don't happen often, they are so much appreciated

4. for sunshine and 80 degrees and flip-flops and tanks- knowing they exist is what gets me through the winter months

3B. for Whole Foods, Trader Joe's, and the East End Food Coop for supplying my family with food without all the nasty artificial colors, flavors, and preservatives.

3A. for the day I stumbled across www.feingold.org - it has undoubtedly changed the course of my life       (I thought of this after I had completed the original list of 30, but it was way too important to leave out)

2. for my husband, Robert- though the 14 years we've been together haven't all been pretty we've stuck it out together. He has supported me like no other person through this journey. He supported my decision to have chemo (even though he didn't agree with it). He took care of me when I was too sick to take care of myself afterwards. And he has been my biggest supporter since quitting chemo and deciding to treat it holistically.  He picks me up when I'm down. He's been both my rock and my soft place to fall. I could write pages of all the ways in which he helps me everyday and still probably not even mention everything. I never could have made it this far without him.

1. for God's never ending mercy, grace, love, and forgiveness


Have a blessed Thanksgiving everyone!


At all times and for everything giving thanks in the name of our Lord Jesus Christ to God the Father. Ephesians 5: 20




Wednesday, November 27, 2013

Dancing Again

As you know from my last blog posting I was having a rough few days. Immediately following that post I decided to write down thirty things I am grateful for in an attempt to help my worn spirit. At first I found this task incredibly difficult. My mood was such that I really didn't feel like being thankful, which is exactly why I knew I needed to write it. About halfway through it became easier. By the time I had neared the end I easily could have come up with thirty more. I was beginning to feel better already. I'll share that list in another post.

Okay, so I had my list. Now what, I thought. Knowing the importance exercise plays in mental health I decided to get on the trampoline and start jumping. Even if I only could manage to do it for a few minutes, I told myself,  it would help. That was really just my way of tricking myself into starting which is always  the hardest part when you really don't feel like doing anything at all.

Next, I decided to up my daily dose of vitamin D since my exposure to sunlight is nonexistent in Pittsburgh in November. Additionally, Bob gave me some passion flower to take.

I had covered all the basics I could think of. I was feeling better, but by no means was I feeling motivated, the kind of motivation that I felt I needed to kick some c***** butt.

That all took place on Tuesday. The next day we were supposed to get a big snow storm. I say supposed to because once again the weathermen were wrong, (surprised? not really) and we didn't get anything at all.

So with just wet roads on Wednesday morning, I decided to make a trip to the nutritionist's office to buy some needed supplements. Rarely when I'm out anywhere do I buy items that I've deemed unnecessary, but there was book that caught my attention- "A C***** Battle Plan: six strategies for beating c*****, from a recovered "hopeless case" by Anne E Frahm. I decided to splurge and I'm so glad I did.

This Book was the best $15 ever spent. Well, maybe not ever, but definitely worth every penny and then some. I can not say enough good things about this book. Now I'm not much of a reader, mostly because it's difficult to find the time, but once I started reading it I couldn't put it down. I read the entire book, all 172 pages, in one day. The author covered every aspect of her recovery- diet, exercise, attitude. I already knew most of the information in it but it was so nice to be able to relate to the author's thoughts and feelings and to feel validated in my own. Her simplistic way of retelling her story makes it a great read for everyone that is battling c***** or knows someone battling it, so everyone!

She wasn't diagnosed until she was in stage IV, after a misread mammogram and months of being told by doctors all her aches and pains were the result of something else. She endured months of chemo and had radiation, surgery, and a stem cell transplant. When all else had failed she turned to nutrition.

If you or someone you know has c***** this is a must read book. A MUST READ BOOK!!

From a scientific standpoint another book to read is "The China Study" but if you're like me and prefer the documentary version, watch "Forks over Knives" when you have an hour to spare. It's available on Netflix.

AND BUY THE BOOK!! And if anyone does buy and read the book, be sure to tell me what you think of it. I'd love to know if you loved it as much as me.