Monthly Archives: March 2013

The Cause

3/26/2013

It is very odd to lie flat on my back these days.  If I do, and I put my hands behind my head, then it makes the tumor in my breast very prominent and noticeable, even if just to me.  It is fairly large in size, so whenever I lay down, it is a constant reminder of what lies just beneath the surface.  Do you know how strange it is to walk around knowing that there is this thing with me, all the time, that I can touch and feel…a thing that has the potential to kill me?  I will tell you.  It is the most peculiar, uncomfortable, uneasy feeling that I have ever had in my life.  EVER.

As the days pass by, waiting for things to start moving and happening, it gives me a lot of time to think.  I have yet to have the inner dialogue of, “Oh God, why ME??  Woe is me and why would you do this to me, Lord??”  No, that hasn’t happened.  But I HAVE wondered what I could have done differently over the course of my previous 42 years to prevent this.  Did all of those years of smoking contribute to my cancer?  Did my miscarriages also raise my risk of developing this particular cancer?  I know that both of these things are supposedly risk factors that can increase a woman’s chances – but did they in my case?  I will never know that.  Did being overweight for so many years increase my chances?  Or being sedentary for so long?  Or perhaps the deoderant that I use – did using a rollon instead of a spray do it?  Yeah, there are all kinds of wacky theories out there.  But seriously, I have to sit and wonder what I did to contribute to the development and discovery of cancer in my body – and will I develop it somewhere else, too?

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There is also the possibility that I inherited the gene that producees breast cancer.  After all, my mother has had it.  Her only sister has had it.  I think they had maternal aunts with it.  One of my father’s sisters has had it.  I got whammied on both sides on the gene pool.

Tomorrow (Wednesday), I go back to UT Southwestern to have genetics draw blood and begin the process of testing me for the BRCA1 and BRCA2 genes.  My part is simple – they draw a vial of blood and send it off.  The hard part is waiting for the results – 14 days.  This, however, will help the surgeon determine if she should take just the affected breast, or preventatively take both (which is what I want).  Even if I don’t test positive for the gene, I want to have both breasts removed, so that I don’t ever have to go through this again.  For those who do not know, the BRCA1 and BRCA2 genes are known as tumor suppressors, and are linked to hereditary breast and ovarian cancers (according the the National Cancer Instiitute).  I read some interesting information regarding the genes and testing, which helped me understand it more.

Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers – NOT just breast or ovarian.  Women who inherit a harmful mutation has an increased risk of developing breast and/or ovarian cancer at an early age (meaning before menopause).  Men who inherit harmful BRCA1, in particular, also have an increased risk of breast cancer, and possibly, pancreatic, testicular, or prostate cancers.  Lovely.

I believe that the foundation is covering my genetics testing, or they will bill to Medicaid once I get coverage.  I was, however, encouraged to hear that if I am positive for either the BRCA1 or BRCA2, then there is a chance that the foundation will also bring my boys in and perform the test on them.  It would be very beneficial to know if either of them are also positive for these genes, so that they can be proactive in their health to do whatever they need to prevent getting an active cancer diagnosis.  Plus, Nicholas already has a baby girl, whom can also inherit this gene if her daddy is positive for it; something that I would HATE to see happen!

So I guess that if the tests come back as positive for this, the “breast cancer gene,” then that can pretty much explain the cause of my cancer.  If not, I guess I will never know what caused it or how I possibly contributed.  All I know is that it is here now, but I want it gone.  Soon I will begin the fight for my life, and I am so truly grateful for every well wish, every email or Facebook message, every prayer, every offer for help and/or babysitting, and every dollar that has been donated to help during this time that I won’t be able to work.  I truly believe that together we can and will triumph over this horrible mutation, and live to write about it all!

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The Consultation

3/21/2013

Today has been a miserable day for me, feeling like my throat is on fire and a cough that just won’t stop.  I finally had to give in yesterday and admit that hey, I must really be sick, so I threw in the towel and went to the doctor this afternoon.  Throat infection, probably stemming from allergies.  Damn allergies.  I did, however, have a fun morning with my friend & hairdresser for years, Liz.  She so graciously gave me a cut and color – and BOY did she give me color!  I left with blonde and two shades of pink!  SO awesome…I love her so much.

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But let’s go back to yesterday.

I had an appointment at Moncrief Cancer Institute yesterday at 1:30 PM, in Ft. Worth.  Oh THAT was a fun drive.  There is construction EVERYWHERE between here and there, so the normally 45 minute drive took me an hour and a half.  Good times.  But it was necessary and definitely important to this whole process, so I wasn’t going to bitch.

The first part of the appointment was brief, spent with a nice chick named Yesenia, filling out paperwork for Texas Medicaid.  I gave her all of the documents that they said that I needed to bring, and she told me that it would take 6-10 business days for me to get into the Medicaid system and have an ID# – but she said that I DO qualify.  Huge relief #1.  She explained to me that it is good for six months, and if I am still in treatment at that time, then all I had to do is renew it by having my treating doctor fill out a form for me.  Easy peasy.  She also explained that this particular Medicaid program, while it will cover most of my treatment, there are some things that it will not cover, and only covers three prescriptions each month.  So I will have to be careful to pick and choose wisely which ones to use it for – I remember when my mom went through treatment, her anti-nausea meds were OMG expensive, even on her good insurance.  And you can guaran-damn-tee that I am gonna want the good anti-nausea drugs!

The next part of the appointment was longer, spent with one of the nurse caseworkers named Edna.  We discussed the next step, which was a consultation with a surgeon.  She said that a preliminary staging would probably put me at a 2, but that my official cancer stage wouldn’t be given until after my surgery.  She had a piece of paper that had the surgeon’s name on it that they were referring me to, and I could read it upside down.  I thought I had read it wrong, so I asked, “Does that say Dr. Carolyn Garner??”  She said, “yes?”  I was like, “Out of Denton Regional?  Cute little soft-spoken redheaded doctor?”  She said, “yes?”  I said, “Well that can’t be right.  She is an endocrinologist.  Does thyroid surgery.  I know her.  My friends know her.  My mother just had her thyroid removed by her about six weeks ago!”  Edna looked at me and said that she has dual specialties:  endocrinology surgeries and breast surgeries.  Ohmygod seriously???  THAT is awesome!  Huge relief #2.  I would totally go to her in a heartbeat, plus I am already in her system because I had a consultation with her about my own thyroid last year, when I briefly had insurance.  That took a huge weight off of my back!  I would definitely rather have surgery at one of the bigger hospitals than at Denton Regional, but I trust this surgeon, so I know it will all be good.

Once we got this part out of the way, we discussed various things regarding treatment, and what to expect as best that I can.  She said that because of my age and family history, that they want to do genetic testing on me, for the BRAC gene.  She said that they want to do it right away, so that the results can go to the surgeon, and we can make a definitive decision regarding surgery.  If I am positive for the gene, then I have the option of having both breasts removed and it would be covered completely; while if I am negative, then only the affected breast is eligible for surgery and reconstruction.  If I am positive, they will also test my two boys for the gene; because men can get it, too, as well as pass to their daughters (and one of my boys already has one of those!).  If I am negative, I could still have the unaffected breast removed electively, but it would likely be out of pocket.  I have been saying, for many years now, that if I ever get hit with this type of cancer, then I would for sure want to have them both removed.  And I still say that now.  I don’t want to ever go through this again!  Take them both, take them now.

So now I am expecting a call from the genetics department.  She also said that I would get a call from one of their social workers, who will keep connected with me during the course of my treatment, to make sure that I have everything and all of the support that I need.  They have support groups.  They will be mailing me an A to Z book about breast cancer, since they were out of it yesterday while I was there.  I gotta say, this place, Moncrief Cancer Institute, is an amazing place.  Nothing but positive people, pushing calm, peacefulness that is full of hope and light.  Next week on Wednesday, I am supposed to call and check the status of my Medicaid.  If I am in the system, I can get the ID# and make my appointment with Dr. Garner.  From what I can tell, with genetics testing (and waiting the 14 days for the results) and any additional testing that Dr. Garner may want to do, I will likely be having surgery around mid-April.

With what I have had to take in during this short time so far, I am glad that it is finally moving along.  My biggest fear, in the beginning, was the fact that I had no insurance.  I am SO thankful for the programs that exist, for the knowledge to find them, for a great doctor’s office to direct me, and for the grants & donations that fund these programs.  I have had amazing support from family and friends, both near and far, in person and across the world of Facebook.  My dear friend, Madge, stepped up immediately and set up a fundraising site online for people to donate towards – and after three days she has gotten over $3000!  I am overwhelmed and blown away by the humanity of my friends, her friends, and many people who don’t know me at all yet have graciously given a donation!  This money will help SO much in the absence of my income, and will help pay the bills that I usually cover, as well as gas to and from all of the countless appointments.  Thank you just doesn’t seem like enough.  I am humbled and honored by each person who selflessly gave, and will keep it with me always so that I can someday pay it forward.

Onward we go.  One foot in front of the other.  One step at a time, one day at a time.

The Pathology

3/18/2013

It’s Monday, March 18th.  My sweet Noah’s 13th birthday.  I can’t believe this kid is already thirteen; nor can I believe how crazy I am about him (despite him being 13…hahaha)!  It is also the day that I hope to hear back from the doctor, all the while knowing that it could very likely be tomorrow.  By about 3 PM, I have given up most hopes of getting a phone call today with my biopsy results, so I start planning for a short trip to the store before Noah gets out of school at 4 PM.  I still feel lousy, but I need to make Noah’s birthday dinner, so I change clothes and head off with my list to the Kroger around the corner.  It’s 3:45 PM, and I am two steps out of my Jeep when my phone rings; a familiar Dallas number pops up and I stop, frozen in my tracks.

“This is Tanya.”

“Hi Tanya.  This is Dr. Seiler at UT Southwestern Medical Center.  Do you have a minute?”

Really?  No.  Do I have a minute?  Like I’m going to say, “Now isn’t a good time to find out about my cancer.  Can I call you back?”  Sorry.  Inner sarcasm comes out during times of high stress.

“Of course!  Let me jump back into my Jeep and turn some air on.”

From there, his calm, soothing voice led me through every step of the pathology report that he has so far.  He went in the same order that he performed the biopsies:

1.  The Stereotactic Biopsy of calcifications on the left breast – OK.  Fibroadenoma.  Benign changes.

2.  The mass on the right breast – OK.  A stromal hyperplasia.  Also benign changes.

3.  The mass on the left breast (the one that I felt) – Cancer.  Invasive Ductal Carcinoma In Situ.  The most common form of breast cancer, he said.  In the ducts and outside of the ducts.  Wonderful.

4.  The lymph node area of the left armpit – Cancer.

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Big, deep breath.  Okay.  Do we have a stage yet?  No.  The specimens are being sent off for further testing and staging.  It is Grade 3, which is the highest grade – and the worst.  It got a score of 8 out of 9, which I guess is bad.  My next step, he tells me, is to see a surgeon.  They might do more testing (like MRIs and xrays), but they will formulate a treatment plan and decide if surgery will be needed first or chemotherapy first.  He answered all of my questions, and made sure to ask me at the end if I had any OTHER questions.

I then spoke with Amanda, the coordinator at UT Southwestern with the nurses at Moncrief Cancer Center, the program that funded my mammograms, sonograms, and biopsies.  She put me on hold, contacted my nurse there, and came back to tell me that they will begin the process of Medicaid paperwork for me, and not to worry about any of it for the time being.  She said that I would get a call the next day from the nurse handling my case, and they would get me in to finish up paperwork, and it would take 6-10 business days to get an active Medicaid number.  Once I have that, I can make the appointment with a surgeon that they refer me to, and hopefully get a good plan in place for treatment.  More waiting.

I know that if I had insurance, I would just pick up the phone to the surgeon of my choice (who accepted my plan, of course), and make the appointment.  Things are different for the non-insured, but thankfully, I am no longer panicked at the thought of having to self-pay EVERYTHING.  Now, I know that Medicaid does not pay for everything, and I will have out-of-pocket expenses; and thankfully I have wonderful people in my life (and in others’ lives) who have already started a fund for that!  And if anyone is wondering how I am able to get Medicaid, it is because we live in a state that does not recognize our marriage (as well as on a federal level).  Therefore, Erikka, in the eyes of Texas, is considered my roommate; and I am considered a single mother of two children at home (since I legally adopted Harrison).  Crazy, huh?

It just keeps coming back to me that all of those who are opposed to same-sex marriage, for whatever messed up reason, have no clue how it can, and DOES, hurt real people, in real families to keep a “separate but equal” mentality anymore.  The Defense of Marriage Act has no good merits, except to discriminate and divide.  Having marriage legal in all states for some people, yet only legal in certain states for others, will do nothing but complicate matters large and small, on many levels.

And breast cancer is no small matter.

The Biopsies

3/15/2013

Eight days.  That’s how long it has been since my world kind of got turned upside down by my mammograms and ultrasounds.  But today is the next step.  Four biopsies.  I have been suffering horribly all week from dizziness and nausea, and after trying to figure out what the cause could be, I think I have finally decided that it must be my nerves.  So maybe it will go away after I get this step out of the way.

My alarm was set for 5:15 AM, so that I could get up by 5:30 AM, shower, and be out the door at 6:15 AM (we had to be there at 7 AM) – but I was awake all on my own by 4:20 AM.  Erikka’s parents drove in Thursday night so that her mom could stay here with the baby while we went to my appointment, and her dad would go with us to keep Erikka company in the waiting room while I am having the procedures done.  Truth be told, it’s also comforting to me, for some reason, to have him along with us.  Meanwhile, Noah spent the night before at my mom’s since it is Spring Break, and got to go to some Xtreme Jump place to jump trampolines with his cousins – so I’m glad he got some fun out of his week off.

We arrived to the hospital early, which shocked me.  I checked in at 6:45 AM and they found their waiting spot and got coffee.  After a few minutes, they called me over to sign paperwork and get my bracelets, and then back to waiting.  Pretty soon I was being called back – first in line – and ushered into the little changing room and given the beautiful gown and robe that totally do NOT match.  photo(10)It’s kind of awkward to be a non-femme dyke in mammogram land, surrounded by other ladies who are dressed in the same little gown/robe combination – only they are typically older than me, with their well-managed hair, makeup, and accessories.   Yeah, I fit in REALLY well among them.  Soon, I was no longer the only one back there waiting, and the long line of floral chairs against the wall had a handful of matching patients, each waiting for a different thing.  Some were there for standard mammograms, like they get every year.  Some were there for diagnostic mammograms and/or sonograms, like what I had the week before.  And some were there for biopsy procedures, like me.

Because I had to have four different areas biopsied, they had explained to me that I would experience two different methods, based on the area that they were looking at.  The first one that they were planning on doing was called a Stereotactic Core Biopsy, and this was the method that they would use to examine the tiny calcifications that were found in the upper portion of the left breast (they were also on the right, but the doctor did not seem as concerned about them).  photo(9)This is where they lay the patient face down on a table (a HARD table, I might add), and the breast hangs down, through a hole, and they do all the work from underneath.  Once they had me in place, they bring in plates on each side of the breast to hold it in place and take some images.  Once they locate the calcifications, then they clean the area and prepare to numb it before they go in for samples.  They used two syringes to numb the area, because I had been very clear that this was what I needed!

This is how I looked on the table, before they started (and that’s why I was still smiling).  But that was the last of the smiles, pretty much, for the remainder of my visit there.  The table wasn’t too bad, but with no padding bumped up against my ribs, creating some very sore spots.photo(8)

Once they completed the first procedure, they buttoned me back up and ushered me across the hall to one of the ultrasound rooms, like the one that I had been in the week before.  Here, they would complete the remaining three biopsies, guided by ultrasound images.  They would be doing Needle Core Biopsies on three areas:  masses in both breasts, as well as the abnormal lynph nodes on the left side.  This would involve a lot more numbing meds, and several more needles.  Now let me tell you, if you ever have to have a biopsy done, and the doctors/nurses tell you that it’s “no big deal” or “don’t worry, they numb you up a LOT” or “it’s just a tiny needle” – it’s BULLSHIT!  They are LYING!  The numbing meds burn going in, and the biopsy probe needles are SO NOT tiny.

They did the right breast mass first, and it seemed alright.  Of course, I had taken two Ativan upon my arrival, so those meds had finally kicked in and I was pretty calm.  I also had Pandora radio going on my phone, and my ear buds were piping calm meditation music into my head while he poked me with needle after needle, taking samples of what he needed.

He soon moved on to the mass in the left breast – the one that had started this whole process.  It was also not too uncomfortable, and by this one, I was familiar with the process and how things would go.  What I was totally NOT prepared for, however, was the last one.  The fourth and last biopsy was to be done in my armpit area, so that he could get samples from the affected lymph nodes.  Nobody had warned me that it wouldn’t be like the others, with just a little pinch from the numbing needle as the most discomfort.  No.  The numbing hurt like hell, but when he stuck the big tube in (the one that he used the bigger needle inside to gather samples) and shot the big needle in, I gasped as the pain sucked the wind right out of me.  It hurt like a motherfu&*er and made me scream bad things!  The doctor apologized profusely, and the nurse told me how great I was doing, I guess thinking that somehow that would make up for it.

Soon it was over, and they said that they needed to take me back over to the imaging room and get more mammograms – two images of each side – so that they could make sure that they got all of their markers in the right locations.  Yes, they left tiny coil markers inside of me at each location, I guess so that they can easily find them next time.  They got their pictures done and I was free to get dressed and head home.  The doctor told me that he would personally call me on Monday or Tuesday, and from there we would be able to formulate a plan for treatment.  Whew.  I made it through.  The nurses also told me that I would be “a little sore” for a few days, and that I should only take Tylenol (which is completely worthless, by the way).

Sore didn’t begin to describe the pain that has been going on since having this done.  Especially under the arm where he went in for the lymph node samples.  photo(6)This is my left side, with the bandages under the arm (lymph nodes), the top side of the breast (that was the first biopsy site), and the underside of the breast (where the large mass is).  Dear God do you see how swollen my boob is????  Yeah, not comfortable.  At all.

So now it is Sunday, two days out.  I’m still really very sore, with a lot of pain in my underarm area.  It has been hard, because I am not supposed to pickup the baby until three days out, nor can I swim or take a bath.  Tonight we are supposed to go out to dinner with the family to celebrate Noah’s birthday (which is tomorrow), and my daughter-in-law’s birthday (which was a few days ago).  Erikka will help me take a quick shower later and wash my hair, since raising my left arm for any amount of time sends hot, searing pain into my arm.  Another step down, with many more to go, I am sure.  One step at a time, and hopefully I will get this gone for good.

The Appointment

3/7/2013

The morning seemed to drag on as we waited to get ready for our 11:30 AM departure.  We planned to leave early enough to go have lunch before my 1:30 PM appointment in Dallas.  As we drove to one of our favorite spots, the knot in my stomach returned, and I barely had any appetite in which to enjoy my lunch.  After leaving the restaurant, we started the drive to UT Southwestern University Hospital, knowing we would likely arrive pretty early.  Better early than late though.  As we drove, Erikka reached over and held my hand like she usually does when we drive, but this time there was no idle chit chat.  I was lost in my thoughts, and I’m sure she was as well.  Once we figured out where we were going, we got the baby in the stroller and valeted the car.

My appointment was at the Breast Imaging Center within the Simmons Comprehensive Cancer Center at UT Southwestern.  I have been here before.  This was where I got my first routine mammogram back in 2007, and where I returned the following year after finding a lump and going through a diagnostic mammogram and sonogram.  My nerves had been shot at that time, in 2008, and everything turned out to be harmless and benign.  So as we entered the waiting area, all of that memory flooded back, but didn’t bring the anxiety with it.  I signed in and filled out the paperwork, then sat down to wait with Erikka and Harrison.  Little did I know how long we would be there and how much things were about to change.

Soon I was taken back, alone (unlike the last time, when Erikka went with me).  Because she had the baby and stroller, they said that the larger waiting room would probably be more comfortable for them.  So I went back, changed, and waited – texting Erikka and one of my BFFs while I did.  A nurse named Holly came out and called me into the small imaging suite, and quickly did the routine mammo shots – two of each breast.  She then made me go back out and wait while she showed them to the radiologist.  After he looked over them, along with my old films, she came back and got me to do more images.  She informed me that there was a new mass on my right breast that had not been there in 2008, one that neither I nor my doctor had detected; so she did two more images of the right side.  She then informed me that there was not one, but two, masses on the left side (the larger one that I had come in for had broken off and had a smaller one behind it), and a lymph node looked suspicious.  Great.  Wonderful.  She then did four more, painful I might add, images of my left breast.  After she got all of these images – there were ten in all when she was finished – I was again sent back out into the smaller, waiting area.  I did, however, send her to the main waiting area to get Erikka and send her back.  I knew that the ultrasounds were coming up next, and I wanted her to be back there so that she could go with me.  Holly gladly went out and got them and showed them to the back.  We waited there, together, for a few minutes before another person called me to go for the ultrasound.  But she said that Erikka and the baby would have to stay there, because there wasn’t enough room for the stroller in the sono room.  I was disappointed, and unnerved by having to go in alone – Erikka had been able to go with me last time!

I went to the next little room, laid down on a table, and waited.  Soon, the radiologist came in and proceeded to ultrasound my right breast first.  He showed me the mass on that side, and explained to me that he wasn’t all that concerned about that one, because it was oval and had defined edges.  He was slightly concerned with the tiny calcifications that showed up on that side as well as the left, and would have to take a further look at those.  He then moved over to the left breast and began his assessments.  The mass that I had felt all this time, the one that started the whole procedure, was slightly bigger than my doctor had guessed – 2.76 cm.  However, there was a second mass, much smaller, that looked like it had broken off of the larger one.  Lovely.  There were also suspicious calcifications on the left side, and not just one, but TWO of my lymph nodes were enlarged and too dark.  Wonderful.  The radiologist was really good about answering my questions as he went along, comparing what he was doing to the mammograms posted behind me.

Once he was done and I had toweled all of the goo off of my chest and armpit, I buttoned up so that he could talk to me.  He said that he wanted to do four different biopsies:  one of the mass on the right, one of the calcifications on both sides, one of the mass on the left side, and one of my lymph nodes.  I sat there, kind of dumbfounded, silently telling myself that it was VERY important that I remember everything that he was telling me.  This was another reason that I needed Erikka with me – so that she could hear and remember all that was being told to me!  He went on to tell me again that he isn’t all that concerned about the right side, and he believes it to be a fibroadenoma, which is a benign mass that I guess they don’t worry about too much.  He then went on to tell me that he is very concerned about the left side, and he is fairly assured that it is cancer – mainly because the mass is jagged, with uneven edges; along with the affected lymph nodes.  He said that he would be completely shocked if the biopsies came back NOT showing cancer on that side.  Oh.  Wow.  Okay.  The biopsies, he went on to say, will show the pathology of the cancer, and tell them which course of treatment will be necessary – surgery first or chemo first.  I asked him if he thinks it is early enough to get it completely, and he said yes, he believes so, and believes that with surgery, chemo, and radiation that it can be eradicated.  Oh.  Wow.  Okay.

The next step was to send me back across the hall, where Erikka was waiting still, to get dressed again while they go to schedule my biopsies.  I quickly got dressed and sat down beside Erikka, relaying the information that the doctor had just given me.  She looked stunned, and I tried to NOT have a meltdown.  I knew going in that this might be what they told me.  I just didn’t expect it to be this much.  After a few minutes, they came and got us and took us to a small consultation room across the hall.  We were told by Amanda, a scheduling coordinator, that I was scheduled for next Friday at 7 AM, and that we would be there for about half the day.  Oh boy.  Can’t hardly wait for this.  They gave me a few instructions, and we were then on our way.  I think we were there for about three hours in all, and given a lot of information.  It looks like it might prove to be a very long summer in the Dodd-Hise household, but whatever is decided, we will handle it and just get it done.  I haven’t got time for an inconvenience of this magnitude!

So…oh.  Wow.  Okay.

The Phone Call

3/5/2013

It is Tuesday now, and was looking like another day was going to pass without a phone call for an appointment.  But lo and behold, I bitched to the Universe and I guess it worked.  The call came around 1:30 PM, from a nice nurse named Brenda.  She asked more medical questions, got my family history for breast cancer from me, and hung up to call UT Southwestern to make the appointment.  About ten minutes later she called back with the information – next Tuesday, March 12th at 1:30 PM.  She told me that the diagnostic mammogram and ultrasound would be fully funded by their program, as would a biopsy if needed; but it would have to be scheduled for a separate day.  UGH.  Another week to wait.  Wonderful.  But, I thanked her and went on about my day, trying to once again keep myself busy to not worry.

When I went to bed later, I started having a searing, hot pain just under where the mass lies.  It felt like someone was stabbing me with a flaming knife, and nothing I did was making it lessen or subside.  I thought I was going to have to get Erikka to take me to the ER, but what was I going to tell them, that my boob hurts really bad?? I just had to try to get into a comfortable position and try to sleep…sitting up mostly.  Rough night, to say the least.

3/6/2013

I had to get up early and get Noah to school by 7:30 AM for a band competition, so by 9:45 AM I had already cleaned the kitchen, started laundry, and gotten the baby down for her first nap.  I decided, after the weird pain incident the night before, to call UT Southwestern and see if by chance there had been any cancellations for sooner than next week.  The very nice lady, Cheryl, told me (after I explained about the pain) to give her a phone number and a few minutes, and she would call me back.  Five minutes later I had a new appointment for tomorrow afternoon at 1:30 PM!  Oh my goodness I was never so thankful to have a doctor’s appointment in my life!

3/7/2013

Today is the day.  I know that everyone who knows what’s going on keeps telling me that it will be okay.  I agree.  It will.  It has to be.  Do I feel, deep down, that the diagnosis is cancer? Mostly.  Do I feel that I can and will fight it and beat it? Absolutely.  I am just ready to see this thing up close, find out what we’re dealing with, and find out what to do to get it out of my body.  Every day that I have awakened to find that it is still there has just been another day filled with anxiety, wondering if it is growing and/or spreading.  I have spent too long to get healthy and lose weight to let an inconvenience like this set me back.  I know I am strong, and I know that I have an amazing group of family and friends who are prepared to step up and support me in whatever way that we need.  And that gives me a huge leg-up, knowing that so many have my back and that I am never alone.

I started off scared…petrified.  But all of the waiting has given me time to reflect and realize that the mind is a very powerful thing in these kinds of circumstances.  Yes, I am still scared.  Mostly for those things that are totally unseen or out of my power, or for leaving this planet years before I am ready.  I want my children and my grand baby to have me, to know me more, to remember me.  That’s my greatest fear: that Harrison and Zoe won’t remember me.  So I have to fight like hell to stay around, stay healthy, and make sure that they get the opportunity.  And my friends? You better watch out, because I’m going to be bugging the crap out of all of you to make sure you are getting checked, so that we can all be around for many more years….we have to grow old together!

The Waiting…and More Waiting

3/4/2013

It’s midday on Monday.  It has been one week since I went to my doctor and she confirmed the mass in my breast.  It has been one week since I contacted the program who will ultimately (I hope) fund my diagnostic mammogram and sonogram, since I haven’t got insurance.  It has been ten days since I personally confirmed the mass, and ten days that I have been going nuts wanting to know what it is and what I need to do to get it out of my body.

More people know now, and I finally told the oldest child.  He asked some questions, but didn’t seem too concerned and told me not to be scared.  I have spent the past ten days with a knot in my stomach, and have tried to keep myself busy so as not to obsess too much about it.  But every morning that I wake up, I check to see if perhaps it is gone; and before I go to sleep every night I check again – and each time it is still there, becoming a growing part of me.

I’m trying to get some business taken care of that I have neglected for too long, and am hoping that it isn’t too late.  I applied last week for a life insurance policy, worried that if I should get a negative diagnosis that I won’t be able to get any later.  I decided on $100K of coverage, despite previously having much more; but I’m older now and it’s more expensive.  I figure that this amount would cover final expenses and college for the two younger kids, and maybe later I can get a smaller policy to supplement it.  I also figured that I should go ahead and apply last week and get the medical exam done as soon as possible before I get any kind of diagnosis that could screw it up.  As of this morning, when the nurse came to my house to do all of the testing, I have no appointment and therefore no diagnosis of anything bad.  I know that it’s a tricky area that I am wandering in here, and even if the policy is written and granted this week, that a negative diagnosis NEXT week could void it altogether.  But I HAD to do SOMETHING to at least TRY and protect my family should something happen to me.  I feel so helpless and unable to do anything as long as I don’t know.  I NEED to know, so I will know what to do next.

I was supposed to meet with my BFF and attorney tomorrow to update my Will, but she is unexpectedly having to go out of town due to a family situation.  When she returns in a couple of weeks, I will go in and we will go over the changes that I need to make, like adding Harrison and Zoe to it (not that I really have much to leave any of them!).  Again, just trying to take care of business that I have neglected up to this point.

So it is midday on Monday, and one week that I have been waiting for my phone to ring with a nurse calling to make my appointment.  Six days ago, the chick at the program told me that it would be a few days probably before a nurse would call.  Three days ago, I called to follow up and see where I am, and was told then that there is no set timeframe and that she couldn’t tell me how long it would be.  This brought me to tears slightly.  The chick explained that it was only she and the two nurses in this department, and that because everyone who is calling them has the same issue as me, then no one is bumped up as more important than anyone else.  I finally took a breath, and told her that really, I appreciate the work that they are doing and to keep up the good work.  I imagine that they are talking to a lot of freaked out women just like me every day, and are probably not thanked or appreciated nearly enough.  She seemed taken aback by my comments, and finally said, “Ma’am, I know you’re anxious, and I promise that someone will call you soon.”  So I had to just accept that, and know that I was going to have to struggle through another weekend not knowing.  I pray that someone calls today.  This is making me crazy.

The Waiting

2/26/2013

Tuesday and still no appointment for the tests.  I am going nuts.  It is so hard to not lose it, melt down, and really let myself actually come to grips with how scared I am.  I KNOW that IF I do have a bad diagnosis that it is VERY treatable.  I know this.  It doesn’t change the fact that not knowing is probably scarier than knowing – because with knowing comes a plan of action.  Right now I have nothing to go on.

I got so excited when I saw the number calling on my phone just before lunch today.  I quickly answered it, while sitting in my Jeep in the parking lot of Walmart, and answered all of her questions regarding my information.  After ten minutes and going through everything that she needed to know to get me into the system for the program, she tells me that she has me all in, along with my doctor’s order for the tests, and that a nurse will be calling me to schedule my appointment – within the next FEW DAYS.  Oh dear God are you serious?  I mean, I know that I’m not the only one, but REALLY?  I hung up the phone, near tears, and realized that THIS is life for the uninsured with a possible serious medical condition.

Now don’t get me wrong – I am extremely grateful and thankful for the programs that are out there available to men and women who are uninsured or underinsured, so that they can get treatment and/or help in the event of a serious medical condition.  But there is most definitely a difference in how treatment timeframes play out between the insured and the not.  When I found a small, pea-sized lump in my right breast in 2008, I still had insurance through my job.  I made one phone call to my doctor, got in the next day, and got the order for the mammogram.  I made one phone call to the mammography department at UT Southwestern and made the appointment for probably within a day or two.  I went, I got the test done, and got the results right then.  Had there been something to worry about, my doctor would have referred me to a surgeon for a biopsy probably, and I would be on my way with my treatment.  This time?  I made several calls before I realized that I needed to go to my doctor for confirmation.  Fortunately, they got me in same day and got me the order I needed.  Unfortunately, it was two phone calls and a message left before I spoke to a person regarding the program that would provide the diagnostic tests.  She got some information and requested the order be faxed; then told me to wait.  Then today’s phone call came as a teaser, because then I was told to wait some more for yet another phone call.  Once I get THAT phone call, who knows how long I will have to wait before I actually get to have the testing done.  I don’t even want to think about the wait for the next step, if a next step needs to be taken.  And the reason for all of the waiting is because I am not the only one with a suspicious symptom who doesn’t have insurance; and this is one of the few programs in the metroplex who offers low cost or free diagnostic screenings – so they are constantly backlogged.  I understand that and can appreciate that.

I just. want. to. know.

The Confirmation

2/25/2013

Monday morning.  I spent the weekend pretty much obsessed with the “what ifs” and the hard lump inside of my breast.  We tried to keep busy, which helped a lot.

This morning I made several phone calls in attempts to try again for a mammogram appointment.  I found out from all of them that if you have a symptom or suspicious anything, then you are no longer eligible for the free or reduced cost mammogram; you will need to get a diagnostic mammogram and probably a sonogram.  Well, YOU won’t; I will.  So, in a panic I called my doctor’s office and spoke with the friendly office manager that I know on a first name basis.  She said I would need to come in to have the doctor confirm the lump anyway, and told me to come this morning.  Well alrighty then!  I quickly got dressed, got the baby dressed, dropped her off with my awesome friend, and headed towards the doctor’s office.  They got me right back, took vitals, asked questions, then gave me the awesome paper gown (open in the front), and left me to wait.  Soon my doctor was in and doing my exam, confirming that it was a firm, elongated, 2.5 cm mass, and yes, I DO need a diagnostic mammogram with sonogram if needed.  She left to go write my orders, while I gathered copies of everything and instructions on who to call to schedule the appointment.  It alleviates alot of fear to know that there are good programs available to men and women out there with no insurance, in the event that something life-changing happens and they need help.  This could very well be me.  I will know soon enough, right?

I got in the Jeep, called the number that they gave me – twice – and finally left a message.  Their voicemail said it could be up to two days before they call me back.  Wonderful.

I made it until about 2 PM before I started hunting for another number to call.  I found their Facebook page, which ultimately provided not only the toll free number that I had called earlier, but a local number as well.  I called it and to my excitement, I got a live person answer!  I spoke with whom I needed to, and she said that my orders needed to be faxed over; so that led to another callback to my doctor’s office.  I was told that once they got the orders via fax, then it could be up to 48 hours before I got a call back for scheduling.  Sigh.  More waiting.  I don’t think these people know just how impatient I am.

The Discovery

2/22/2013

Today could very well be the beginning of a new, long journey.  Who knows.  But I suppose any day of our lives could be a turning point for any of us that we just don’t know – until it happens.

Today was the day that I confirmed a fairly large mass in my left breast.  Today was the day that I said it, out loud, to my wife and best friend.  Today was the day that I had to stop denying what I felt in the shower twice last week.

I am moderately freaked out by this discovery.  When I first felt it, in the shower at the gym, last week, I shrugged it off thinking it was all in my imagination.  A couple of days later when I was showering after our Aqua Cardio class, I felt it again and again thought it was all in my mind, so I totally blew it off.  It was this morning, when lying down for a nap with the baby, that I rolled over onto my hand and was awakened because I felt the mass against it.  This, of course, prompted me to roll over and do a proper self-exam; and it was definitely NOT all in my mind.  It is most definitely in my breast.  I went into the bathroom to see if there were any noticeable differences to the shape; and was disappointed to see that there was.  Great.  This is really there, and I’m gonna have to do something about it.

Back to being freaked out.  Oh my God.  I have no health insurance.  OK.  So what am I going to do?  I cannot be one of those people who don’t do anything because they don’t have insurance.  There ARE resources.  There IS help.  Nor will I sit back and blame the president or other some such nonsense for the situation I am in.  I don’t have insurance because self-employed folks pay really high rates for really high deductible insurance, which doesn’t help the little guys like me; plus the fact that my wife’s company refused to add me to her fantastic insurance plan simply because we are the same gender.  Bastards.  All of them.

So I recalled that last time I went to my doctor, I grabbed a card that stated that they can refer patients who qualify for eleven dollar mammograms through their foundation; each test is funded by donors and grants.  First I had to locate the card, and then I called the number.  I got a recording the first time, and again the second time – so I left a message and waited for my call back.  It was Friday afternoon around 2 PM when I left the message – no call back today.  I hope to get a call on Monday and get it scheduled as soon as possible next week.  The waiting is the worst part.  All of the things that the imagination can put us through is what has been happening all day.  Erikka says not to panic, but it’s very hard, given my family history with the boobies.  I told her that I would be SO pissed if I have worked this hard over the past year to lose weight and get healthy for something like breast cancer to happen….only I didn’t say the C word.

All I have now to go on is a message left for an appointment that is yet to be made.  That is my next step.  I will go and have the mammogram done and see what they say.  In 2008, at the age of 38, I found my first lump on the right side – and it was about the size of a pea.  I went through the mammogram process, which led to further testing and sonograms, and ultimately being told that it was fibrous tissue.  This one is different, and about four times as big; and the underside of my breast is flattened, kind of dimpled in.  It scares me more.