Coming Soon - One more is too many!

Distress Survey

This particular post has been bouncing around in my head since the day after my first treatment. On that day, I had to go in for my Neulasta shot. When I arrived at the appointment I was handed a sheet of paper and was asked to complete it. At the top of the sheet, there was a title which read "Distress Survey". I was intrigued. The nurse said everyone is asked to complete one and if your score a certain number they are required to refer you to someone. Again...intrigued. I started to look through the questions and my heart dropped. Not because of anything related to my situation, but because of my empathy gift/curse. As I read through, the reality hit that the level of devastation this disease can bring on for someone can far exceed the physical issues.  The questions basically asked if, in the past week, you had experienced distress related to any of the following topics (I can't remember them all so this list is far from complete - it was a full page with two columns).

• Money
• Food
• Housing
• Rent
• Childcare
• Work
• Transportation

Immediately, I thank Heaven for my many blessings, not the least of which is my stellar support system. That not only includes my husband, both sets of parents, siblings, extended family, our daycare family, my AND Bobby's work family, and so many more. I don't have to worry about childcare, the house (when I'm busy sleeping), errands, food for the family (when I'm busy sleeping). That also means that all of those things do not fall on Bobby to handle alone. It's tough enough on him as it is, I can't imagine what it would be like if he was left to carry it all on his own. So now my thoughts go to someone who is diagnosed - maybe a single parent who works part time with no benefits, no time off, no family around. Holy cow! Just thinking about someone in that situation or anyone in between just breaks my heart. The diagnosis ALONE is life changing but what if you had to worry about all of that PLUS the astronomical expenses related to treatment, the care of your family.... Then you move on to things that make the journey easier for some women - wigs, prostheses, etc. That stuff is not cheap! Some insurance will pay for wigs, but not all. Good wigs are close to $300 each and the average life, per my consultant, is 6 months if they are worn everyday. I had no idea!! You have to wash them regularly but you can't use regular shampoo, so you have to buy special product just for the wig. That's more $$. When I had my preliminary fitting for the prosthetic inserts, the consultant told me you can get fabric forms, which are best in certain applications like swimming and they are a bit lighter, and the silicone, which are more "natural feeling". Insurance will pay for one but not both. She said I could by one set and let insurance get the others. So we proceeded to test them out and I finally asked for the price on the fabric forms (I would let insurance pay for the silicone). She said the fabric forms were $275...I thought, "A little steep but not crazy." But then she finished her sentence with "a piece". Yes friends, fabric replacement boobs are $275 EACH.  Clearly, I'm not caught up in appearances, I haven't been back for my "after the swelling goes down" fitting...I walk around flat chested and don't think a thing about it. I know not every woman feels the same way but I'm flat and proud. Badge of honor type thing...who knows what the heck it is but it's not a big deal to me. That said, it saddens me that a woman with limited resources, dealing with financial and/or any of the issues listed above, might benefit by lifting her self esteem with a wig and prosthetics but, without some sort of support, the would be out of her reach. THAT BREAKS MY HEART!!  There was a group in Lexington that helped women in need obtain wigs but my consultant at Grogan's said that she thought that they were no longer in existence because they usually have a benefit event every year and she hadn't heard anything from them in a while.  So, I spent several days wondering how to help. I'm going to research and see what sort of programs, charities and groups exist in this area. If I don't find it, I want to build it! I'm not even sure where to start but if there's a need, someone needs to help.

So there it is - one sheet of paper with a bunch of questions on it, sent me into a tailspin. Oh, and if you're wondering, I was only able to mark one thing on the survey. I marked that I had experienced "Worry" in the past week. Why, you ask? I noted that I experienced worry while waiting the week between my scans and the results. I'd say that means my support system is, in fact, STELLAR. 

Love to all,

Andee

2 AM Check and all is well

I can now, officially, say that I am at the halfway point of Chemo Round 1- 2 treatments down, 2 to go. WOOHOO!! I still have a very long way to go but looking at the process in segments makes it a bit more digestable..don't you think? I received another round of high fives from my doc and his nurse (everybody has loosened up - I told you I would wear them down) and I'm feeling good about my ability to manage symptoms through the next few days. There will be a lot of sleeping, for a couple of days, no doubt. The current routine is - drink, eat, drink, meds, drink, sleep, wake, potty, drink, snack, drink, sleep, repeat.  Fatigue seemed to show earlier this time than last. I now have back up meds to help with nausea...just in case. I had a lengthy chat with both the doc and his nurse and they said there really isn't a cumulative effect as far as the chemo goes - what they gave me in session 1 is already out of my system. Most issues with round 2 are related to blood count and the work that the round 1 meds have done. So we'll wait and see but I'll keep eating, drinking and moving like I did the last time and mentally plan for smooth sailing. Last time I felt the effects through Monday morning (I kept detailed notes) so we'll see how things match up this time.

On another note, I am happy to report that my treatment buddies were able to enter the building without incident this time. Last time, they had a little trouble with a particular door but, with a little coaching from Yours Truly, we were able to make it to the right place at the right time.

This just happens to be my FAVORITE Far Side comic ever! I'm just lucky that my treatment buddies gave me a reason to be able to post it, and it be relevant and not just for my own entertainment.

We laughed a lot...a few times we laughed until we cried. They made fun of me...a lot. We tried to keep up with my constant shedding. On that subject, I didn't realize how much hair I actually had - still have lots but I would have thought, with all that has fallen out, I would have bald spots everywhere....not so much.  The discomfort has reached the breaking point for me and Gabriel has finally said he's ok with me cutting it all off so I think today is the day. Gabriel is still certain that he does NOT want to participate, in any way, with the haircut. We've been reading Nowhere Hair (children's book about chemo hair loss) and talking about it as appropriate, and he seems to be doing better. Again, I'm trying to follow his lead.
 

Well friends, I'm going to go drink some more water and have another Belvita biscuit (remember, must keep something on my stomach), turn on my audiobook and try to get some more rest. I should be up again in 3 hours to cycle through the process again.
Back soon!

Love to all,
Andee

More stuff I like.

Here we go again!

Yes, it is that time again. Tomorrow is treatment day! Woohoo! Can you feel my excitement?  ha ha  It's time for infusion #2. I'm already back in my routine - have the meds going, the snacks and water are ready, my phone, battery case and Kindle are charged, I have my crossword puzzle book and my favorite pen ready to roll. I have my list of questions for my doc written down so I don't forget. I am SO ready to be able to say that I'm halfway done with round 1!!!
My hair continues to jump for its life...still no clumps so no bald spots. At this point I'm just thinning. I have my hats and fake hair all ready to go when the need arises. The actual hair loss isn't the issue at this point - though I do have to wear a hat if I'm doing anything in the kitchen - it's the way your scalp feels when it starts to let go. Ladies (or gents), if you've ever worn your hair up for a while and your scalp hurts a little when you take it down...that's what my head has felt like all day. I think this is what drives people to shave their head more than the actual trauma of the loss. Maybe that's just me but I'm leaning towards shaving more due to the discomfort than anything else.
Speaking of hair loss and hats, I posted some pics of my new hats on the Instagram photo diary. I'll get shots up of all of them eventually but they are multiplying quickly. I ordered a couple from Headcovers.com and a friend of mine was nice enough to make a few for me. I love them all! Thanks Christy!!
Well, I have a early morning date with my treatment buddies, a dude in a white coat and a nurse with a needle and some toxic chemicals. I'm sure I'll post throughout the day tomorrow. Think happy thoughts and dance for me, this one is supposed to be tougher than the first. Whatever it brings, remember, it's only temporary!
Goodnight sweet friends!

Love to all,
Andee

Why yellow?

Our sweet baby girl, once again lobbying for Mommy to go blonde.

Amen!

The shedding has begun!

It's starting to go! No big clumps yet but once that starts it's "Hello trimmers!"   

Kasey & Jesus

My dear friend Kasey has been repeating something to me since my diagnosis. "Me and Jesus will get you through this!" Now she'll be forever reminded when she looks at her wrist. The "Me and Jesus" isn't just for me but I'm going to tell myself it is...makes me feel kinda special. ;-)

Love ya girl!

How long will it take?

This is the only photographic proof of how fast my hair grows. These photos were taken one year apart. It hit me yesterday that I will soon have the opportunity to document how long it takes to go from zero to long.  I know, I'm a dork.

A little laugh

A friend sent this to me today. I laughed a little harder than I should have.

Thanks JHill!

General Updates

I am so far behind here. I'm going to break up my posts this weekend, as best I can. For this one I'll just provide some general updates, for those who are interested. The humorous and/or deep philosophical posts will come later. I know, I know...
So, I'm only a few short days away from chemo #2 - I know what you're thinking...ALREADY? Believe me, I'm right there with you. But alas, it is true. In honor of this milestone, I thought I'd take this opportunity to answer the burning questions everyone wants to know but is afraid to ask. This is why you come here...right???

• I'm feeling good, for the most part. I've learned that I need to keep something on my stomach at all times but I've experienced nothing much worse than, what I would describe as, a sour stomach. I have at no point felt like I was going be "sick, sick". This is good.
• My energy level has picked up but I can still nap at will. I don't walk around in a haze or anything but I can, pretty much, sit down, close my eyes and be asleep in minutes. It's kind of nice.  
• My taste buds are going. It's a very bizarre experience. I don't have a bad taste in my mouth, or anything like that, it's just that there are certain foods I've eaten in the past few days that have no taste. Other than a texture difference, I could have been eating a napkin. Other foods taste completely  normal.
• Reflux is not my friend? If you read my previous post about my love of spicy foods you were in on the early stages of this. The problem is, the food doesn't have to be spicy. I'm going to talk to the doc on Wednesday but it appears, based on my research, that this is not an uncommon problem. I don't drink a lot of soft drinks but I can assure you that there will be NO drinking of soft drinks as long as this side effect is in play. Bobby treated me to an orange Fanta a couple of nights ago. I took a drink of it and it was like I swallowed acid. HOLY COW it burned. That's enough of that! Sadly though, that's not the only thing that aggravates it so I will be keeping to a more bland diet for the foreseeable future. Bummer!
• No, my hair has not yet started to fall out. If you know me personally, then you are aware that even on a good day (pre-diagnosis and treatment) I shed like a dog. No kidding, I could run my hands through my hair and come out with a handful. It has always been that way. My hair is pretty thick so it's just been a pain for Bobby and the vacuum cleaner. The weird thing right now is that, not only have I not started to lose clumps of hair, my normal shedding has slowed down...a lot. All of a sudden it just slowed a trickle. For a moment I thought "this is good...maybe the hair loss will be minimal". Now, I'm thinking "not so much". The visual in my head is that my body is trying to make some futile, last ditch effort to hang on to it but soon it will just give up and let go. We'll see - I'll keep you posted on the follicle situation.
• My first round of hats are on their way. I'm not going to do the scarf thing.  I'm a hat person...always have been, always will be. I'm building my hair options but, if it weren't for the kids, I probably wouldn't even mess with that. Gabriel is still having the most difficult time with all of this. He is very, very sensitive. He's not sitting in a corner sobbing or anything like that but he's uber affectionate, gets easily upset and frequently lifts my hats to check to see if I still have hair. We are following his lead on the whole hair thing. It seems to bother him a bit. I've asked if he wants to help Mommy cut her hair and he continues to say NO!
  Everyone handles it differently. Example, a couple of nights ago, Mattie asked me if it was time to cut my hair yet. I told her it would probably happen in the next week or so. Her response was "Good, because I want you to wear your wig." And there you go...

So, that's all the news that's fit to print. The silver lining is that with this treatment, I'm halfway through the ugly stuff. How 'bout THEM apples! Only 2 more after this one. WOOT WOOT. So, if you're praying or just sending out good vibes, hope for smooth sailing and no delays. As always, thank you so much for the continued love and support. *HUGS*

Love to all,

Andee

Come on, let's play!

It appears that there are, at least, a couple of people who stop by to check out my ramblings here. I've decided I want to make this experience a little more interactive so I want to hear from you. I've added a poll to the site. You'll see it on the right side of the screen under the hit count. I'll try to do a new question every week...just for fun.
This week's poll question comes out of a conversation with family after I received my own scan results. As terrifying an experience as it was, it was a huge relief to receive the results. So, stop by and answer, if you'd like to play along.

Love to all!
Andee

Must get it out of my head!!!

Posts are backing up in my brain! I need to sit down and write this weekend. Don't worry about chemo brain, I'm making notes!
See, I can be taught!!

 

He can be taught

Laugh of the Day - Another one for Bobby!

Rocky 1-6 in 5 seconds.

Yes it is!!!

Say it ain't so

Our power has been off due to the storms so no big post tonight. I just want to say this - I suddenly have a very low tolerance for spice. I'm not referring only to my love of Red Hot and sriracha - I'm talking pepper!!! As in the pepper in the shaker. What?!?! I simply tasted my Carolina barbecue last night, which does have real spice - cayenne, red hot and red pepper flakes - and it gave me slight belly ache. Well tonight I intentionally (and with sadness) skipped the barbecue and had a very mild, though somewhat peppery dinner. As a result I had to eat Tums!! I sure hope this is temporary. Oh no, no, no...it can't be!!! Spicy food is a love. 

Love to all,

Andee

So, I cried for the third time

As I mentioned previously...if not here then somewhere...prior to today, I had only cried twice over cancer. Well, I confess that I cried today for the third time. The difference today is that they were tears of relief and joy. I received a call regarding the results of the genetic testing. Everything came back negative. I cried because that means my precious baby girl and my dear sister remain in the "normal" risk category. They did NOT suddenly move from 12% to 80%! My reaction was a surprise, even to me, but WOW, what a relief.
For once in my life, it's nothing weird or "special". I'm just part of the 70-80% of cancer cases that just happen.
Aaaaaand....breathe....

Love to all,
Andee

Wait, did I mention...

This post is a courtesy post for any of you who might follow the blog only - you're not linking from Facebook, Twitter or Google+. I just realized that I failed to post one tiny tidbit of information. I went to all of the trouble of posting a detailed timeline for the first 2 months. I mentioned that I had a day full of scans but I never let you know the results. What is THAT all about?!  So, here goes...
All of the scans were clear!!  Woohoo!! MRI, CT and bone scan were all clear and the echo on my heart showed everything was great!
And now you know.  

Love to all,
Andee

No meds, no sick

I hope I'm not speaking too soon but I'm 4 hours past med time and I'm OK! I've kept food on my stomach (just downed a bowl of green beans and red potatoes...my "veggie" snack) and, so far, I'm feeling pretty good.  I think I can safely say that I made it through round 1 without incident. YIPEEE!!! Now, I can focus on staying healthy. Another one of those treatment things you may not know, is that when you start to feel better, you are most at risk of getting sick. Why? Because those chemicals that are charging through my system are doing their job...they're killing cells. My white blood cells are some of their victims. 7-14 days after treatment, counts (of more than just WBC) bottom out. This is the point at which I'll be most at risk. My goal is to have no hospitalization or treatment delays so I'm doing my best to stay healthy. I'm going to go above and beyond (but not crazy) to keep myself going and "clean".
More updates to come!

Love to all!
Andee

This is a test...

                             

I'm testing today. I'm going to see if I can swing it without nausea meds. Whew...that makes me nervous just typing it. The tools of survival today are Carnation Instant Breakfast, Belvita biscuits (crunchy version this time, and they are not bad) and water. I still had a touch of the queasies last night but nothing too bad. It's time to see if I'm officially through the woods on treatment #1. Think happy thoughts and say a prayer for me. Let's see what happens. 

Love to all,

Andee

Some of what I'm eating...

Doc suggested mashed potatoes. Well THANK YOU VERY MUCH! I don't mind if I do! These are quick and easy and yummy

Another directive from the doc. Ice cream (I chose Gelato). I think calories are the key here. He chose not to give me any steroids other than what I'm getting during my infusion. He even told me,  when I'm feeling ok, if I wanted fast food, eat it! He said he wasn't worried about my cholesterol. LOL Funny how priorities get changed depending on what you're dealing with.


Just a yummy snack



Chugging these things!

Great item first thing in the morning. Filling and seems to settle the tummy.

Things I've Learned (Chemo #1 Edition)

Hello friends!

Yes, it really is me. I apologize for being MIA but I've been sleeping...a lot. I'm talking "wake up long enough to walk a little, eat and then go back to sleep" a lot. So far, that process seems to have served me well. I think the key has been listening to those who have gone through this process before me, my extensive reading and research and listening to what my own body has been telling me. As I've mentioned before, everyone's cocktail is different and everyone's symptoms, side effects and reactions are very different. What has worked for me (for round 1 - round 2 will not be this smooth) may not work for anyone else. So, for what it's worth, here's what I've learned:

• Start taking nausea meds BEFORE treatment and continue for several days after. Don't let the symptoms kick in, if you can help it. Keeping them under control is the key. Do your very best to keep your meds going on schedule. I had a little sour stomach as a result of a delayed dose (I slept through my reminder alarm) but I took it and ate a Belvita bar and things settled down quickly.
• Move! Don't wait around around for Kurt Russell and Hell to show up. (If this reference makes no sense to you, go back a few posts) Keep on moving and get vertical when you're not sleeping. No laying around!
• Eat! Keep food on your stomach. I went through several months of morning sickness with my pregnancies and the same thing seems to apply - an empty stomach makes nausea worse. Example, this morning, I was late on meds (again) and waited too long to eat and I thought Kurt had finally arrived. Once again, I quickly took my meds and Bobby brought me a Belvita and I was up, about and smiling within the hour. 
• Protein - Everyone says keep protein intake high. When in doubt and even when not really hungry, I've been snacking on protein drinks. Quick and easy way to make sure you're getting enough and many of the them are quite yummy!

So, all things considered, I'm feeling pretty good. So the song of the weekend is "Feeling Good" and since I like quirky stuff, I've chosen the Adam Lambert version from American Idol (I just love Adam - the man has skills!)  So enjoy and I'll be back later!

Love to all,

Andee

Whatcha doin'?

Update

12:30 check in and all is well. Went to sleep just before 7 PM, woke @ 10 for meds then back to sleep until now. My bladder alarm woke me. ;-)  

Back to sleep I go. 

Love to all

Andee

Still hanging in there

Feeling pretty good after a few extra hours of sleep this morning. Not feeling too badly fatigued.  Woke up hunting for food, so that's a good sign. I had some mashed potatoes and a bit of bread and lots of water. Getting all of my meds on schedule so, so far so good. I'm up and about and was even able to get a meal going in the crockpot for tonight. Mom and Dad are still here and have been a blessing, as always. Our dinner delivery last night was great - thanks to Dave, Michelle and the boys.  Not an absolutely horrible experience at this point but still not out of the woods.
Thanks as always for the love, prayers and continued messages of support. They mean so much and they DO make a difference!
I'll check in later with another update. Hoping for a another boring post.  :-)

Love to all,
Andee

Treatment and the crazy things no one tells you...except me, of course!

Continuing our movie theme, this is from a movie called Modern Problems with Chevy Chase. For some reason I keep thinking of this movie. He is the victim of a chemical spill and funny things follow. You'll appreciate it more when you get to the fun stuff at the bottom. I don't look like this in the mirror but in my mind I do...at least until the 48 hours is up.

This post is more a public service than anything. I've been open about so many experiences that I can't stop now. I had my thoughts about what treatment would be like. You pick up tidbits of information from many sources. Even the information you get from the different members of your medical team with vary. I think there is also a bit of misconception about chemo itself. There is not one chemo - Bobby asked the other day and there are hundreds of different types/combinations. Different cancers require different drugs and they don't all have the same side effects. Example, for some types of cancer, the chemo used does NOT result in any hair loss. Even for people with similar cancers (i.e. breast), the cocktail is different and your doses and combinations are mixed specifically for you. So understand, it is NOT one size fits all. During my Q&A with my MedOnc prior to treatment, I asked about how strong my regimen was - I basically wanted to know where my drugs fell on the Hell-O-Meter. He said on a scale of 1-10, my first round would be a 6 and the second round a 4. I was expecting an 8 on round one. He said 'Oh no, there is stuff that is MUCH worse BUT I've had people sail through on #10 with no major problems and people on #3 who ended up in the hospital." It effects everyone differently. I have a book by a woman who experienced every single side effect you could possibly have. She had issues with pain, uncontrollable nausea constipation, diarrhea, vision issues, nerve pain...and on and on and on. It can be scary.

HERE COMES THE REAL STUFF SO IF YOU DON'T WANT TO KNOW, TURN BACK NOW. (it's not that bad really)

My first infusion ended at about 11:30ish on Wednesday. I experienced a touch of a metallic taste that same day. My urine was also red -I was warned so I didn't freak out. Just one of the joys of the Red devil (see Instagram photo diary to check out that junk...diesel fuel!!)  They also warned me that my eyes could turn pink or red as well. That, at this point, has not happened so for this round I think I'm in the clear. I've been taking nausea meds since the night before treatment but I'm still waiting for that to hit. I've felt a little tired but not sleepy. That's annoying. I've read that insomnia can be a problem but I'm not sure if it's chemo related or I'm just bracing for the bad part and keeping myself a little too "up".
Now to the stuff that's really interesting. During the infusion of my pre-meds my wonderful nurse shared some info that I didn't know! It made total sense but was just new.

• For the first 48 hours after treatment, you'll be a wee bit toxic...I'm sorry, what?! Yes - don't let anyone drink after you (no worries there), no sloppy kisses or any kind of action, if you sweat and have close contact with someone, they will get a rash. She said if your temp goes up or the heat is on and you sweat in bed, change the sheets daily and wash them separately. Needless to say, I've been giving fist bumps and waves to most everyone since Wednesday. lol
• Flush twice when you pee. If you don't the junk that's coming out of your system will turn the porcelain of your toilet bowl black. LOVELY!! You'd have to replace the toilets if that happened.
• A fellow Pink Lady posted on her blog about her first infusion so I was prepared for my nurse to be dressed in a HazMat suit. She wasn't but she did gown up pretty well...she said she left the goggles outside. She thought that was little much. So of course, we asked why all of the precautions. I mean, we knew it was bad stuff but how bad was it and what exactly was she protecting herself from. Let me go back and remind you that The Red Devil, is in fact, RED. So there was some expectation of staining, etc.  Let me tell you friends, that ain't the concern for her or for me. She said if it hits your skin, it will kill it. I'm talking necrosis...black, gone...bad stuff. That makes you take a moment and think to yourself, "So what the hell is happening INSIDE my body when it gets in there.

So to close, at least as of now, I'm still hanging tough. Maybe a little fatigue, no pain (yet), no nausea (yet), everything seems to be functioning as it should be if not a little slow (for now), sleeping fine when I sleep but for shorter periods and after my 48 hours is up, I won't feel like I'm a danger to anyone anymore. LOL

Love to all,
Andee

Hell's coming with me

A few of us on the Doolin side of the family have a thing about movies and especially movie quotes. Bobby and I have, at times, been really ridiculous. We couldn't finish sentences without quoting something or we would randomly throw out a quote and challenge the other with "what movie??". So if no else appreciates this post, they will.
So, as I wait for the treatment side effects to arrive, this is all I keep visualizing. Meet Kurt Russell as Chemo!  LOL

We have to have rules - REVISED

We are going to limit visitors for now (with the exception of our support team) while we learn the particulars of the treatment side effects. By the time we get that worked it out, my risk of infection/illness will be at their highest so we are proceeding under and abundance of caution. We had a micro-preemie and established Doolin Family Lockdown to limit his risk and it worked like a charm. Therefore, we are doing it again, a modified version anyway. Theses rules are posted for your convenience and will posted at each entrance (in case you forget). Don't get offended but we are not above turning people away. It's a long drive to get here for most so take time to read.
As always, we appreciate the prayers, love and support we are receiving.

Love to all!
Andee

Just FYI - LD Rules

2 Months

My journey started 2 months ago today. It has flown by! So, I thought today, as we move into the next phase of the process, I would fill in some of the gaps. I will keep to my standard bullet point list style. No one has time to the read the book I COULD write. Let's do this!

• Saturday March 15, I found a lump in my left breast during a self exam.
• Monday March 17, Called the doctor's office to schedule a visit 
• Tuesday March 18, physical exam completed - based on the exam, they estimated that the size of the mass was approximately 3 cm. Diagnostic mammogram scheduled
• Wednesday March 26, spent the day at the breast imaging center.
• completed 2 rounds of mammograms
• ultrasound
• biopsy (left)
• aspiration (right)
• diagnosis of breast cancer
• organize with nurse to get scheduled with surgeon
• I advised the nurse at that moment that I would opt for a double mastectomy so she could make a note wherever she needed to. She looked surprised and I asked, "Doesn't everyone tell you that?" She responded with an emphatic NO. To each her own.
• Thursday March 27 - received official biopsy results which showed two types of breast cancer (left side only), DCIS & IDC. I'll post a page with the details on each but the key one here is IDC.  While DCIS remains in the milk duct, IDC is Infiltrating Ductal Carcinoma - or in scarier terms, it's also referred to as Invasive Ductal Carcinoma, which simply means it can travel. The pathology report confirmed that the cancer started where we found it, so there were no source tumors in other locations we needed to worry about. Based on the ultrasound there was involvement in much of the left side of the breast but they didn't see anything in the lymph nodes and I had found no swelling or bumps in the nodes via physical exam, nor had the doctor. I was given my scheduled appointment date with the surgeon. It was originally scheduled for April 16th but we were able to get it moved up.
• Wednesday April 9 - met with Dr. AJ (who is FABULOUS FABULOUS FABULOUS FABULOUS). He did a physical exam and then he met with Bobby and me about options. Peggy, the Nurse Navigator (great!!) was present for both. He took the time to review the actual test results, including the path report from the biopsy and walked us through the options. I let him review everything but all were aware of my wishes. Though no cancer was found in the right breast, I felt the right thing to do was go ahead and remove them both and move on. He was supportive and we moved on to scheduling. Oh, at this point, with the data from the mammograms, they weren't sure if the mass was a large single mass or possibly 2 smaller ones. We would only know for sure after surgery. The clinical staging that point was Stage II but we were aware that could change with the information gained after surgery.
• Tuesday April 15 - Surgery day! Operation: Bye Bye Boobies, MISSION ACCOMPLISHED. Only real new news was they did find "some" in the lymph nodes so had to have some of those little suckers removed. ****Yes, I am planning on having reconstruction but for optimal results, it is recommended that any reconstruction be held until 1 year after radiation ends. That means I may get a chest for Christmas 2015. Radiation does bad things to your skin and as a result it would result in a less than desirable outcome. I shall remain Frankenstein-ish for the next 19 months, or so. It's just scars and skin and it's only temporary.
• Wednesday April 16 - Discharged from the hospital (with no boobs and 2 drains) and spent some recovery time with my FABULOUS parents. What a blessing they are. The other blessings are OBVIOUSLY my perfect husband for taking on a lot of responsibilities in a very short amount of time. Blessed that my fabulous in-laws stepped in to assist as well. Neither Bobby nor I are very good at asking for "help" but we realized early on that if people offered, we needed to accept. Support is SOOOOOOOOOOO important.
• Wednesday April 23 - Follow up visit with Dr. AJ. He removed all 2 million staples (my rough estimate) and I lost the drains! Excuse my French but those things SUCKED! (both literally and figuratively, I guess). Weirdest sensation having those removed. It should be it's own page post. Anyway, he said everything looked good and then he took the time to review the pathology report. Turns out, it was a single mass and it was significantly larger than all initially thought. It was almost 6 cm and with the < 3 (for you kids who think that's a heart, it really means less than 3) lymph node involvement that let me graduate from Stage II to Stage III. ugh! Seriously?
  I'll cover staging on a page because most people (including me pre-cancer) don't really understand the particulars. I like to use the analogy of the Chinese restaurant menu - pick one from column A and one from column B and there you have it!
  Scheduling began for appointments with Physical Therapy, Genetic Counseling, Medical Oncologist, Radiation Oncologist.
• Wednesday April 30 - early morning visit to surgeon for some fluid aspiration (RELIEF) followed by the first meeting with my Medical Oncologist (aka Chemo Doc). This was a pretty unfunny meeting - he was pretty serious, as I'm sure he needs to be with most patients, but I was able to loosen him up a little by the end. We discussed the recommended course of treatment - an aggressive one because of the staging of my tumor and my "young" age. I will have 4 chemo drugs given in two sets of cyles. The first (and worst, side effect-wise) will be 4 infusions 2 weeks apart. That will be followed by 12 weekly infusions of the cycle 2 drugs.
  He also ordered the dreaded battery of scans. For those of you who don't know, different types of cancers have "favorite" places to setup shop in the body...if they are able to travel. For breast cancer the hot spots are:
  Brain
  Lungs
  Liver
  Bones
  None of that sounded like anything worth having, not to me anyway. So, the tests ordered for me, and to be completed in a single day, included:
• MRI - Brain
• CT Scan - Lungs, liver and pretty much everything in the torso.
• Bone scan - uh....bones!
• I also had a cardiac echo scheduled prior to "Scan Day" aka "Nail Biter Day". This is done in order to make sure that everything looks good and also to provide a baseline because the chemo medications can cause damage so I'll be monitored regularly.
• Thursday May 1 - Appointment with Genetic Counselor. FASCINATING appointment. It will require it's own post once the results come back in. That appointment was followed by a consult with the Radiation Oncologist who will be handling my radiation. That treatment will entail 33 daily (weekday only) treatments which last about 15 minutes or so each. The staff was fabulous and fit right in with my craziness. That's not going to be so bad.
• Friday May 2 - heart echo completed
• Tuesday May 6 - MRI, CT and Bone Scans completed
• Friday May 9 - Port placement surgery/procedure (outpatient). 
• Monday May 12 - Physical Therapy
• Wednesday May 14 - 1st of 4 "round 1" chemo treatments. If we have no delays, these will occur every 2 weeks until complete.
• Thursday May 15 - Back to the office for my 1st Neulasta injection (The Hell Shot). Basic info here is that this drug helps speed white blood cell generation in an effort to shorten the amount of time where I would be most at risk for infection. This one has side effects that make me way more nervous than chemo nausea and hair loss. It can cause some really, really horrible bone pain. I'll do a Neulasta post at some point. I'm participating in a research study (gotta take one for the team to help future pink ladies in their fight) so I rolled the dice and they randomly chose what I would be taking to help control the pain. Oddly, Claritin seems to be the most effective option and my prayers were answered - I randomly drew Claritin!! Small victory. lol  The other options were Naproxyn or nothing. Whew!!

So, here we are. Two months in. As of right now, I am not experiencing any side effects. I'm eating right, drinking a lot of water and I've been taking my nausea medicine since the day before treatment in hopes of keeping it under control. I'll post updates as I can. It has taken all day to write this particular post and I'm a little tired (awake since 1:30 AM) so there may not be another post today. But, as always, with me, you just never know.   ;-)

Love to all!
Andee

Close enough?

Please note, that I had not yet finished fixing my real hair. Pretty close?

Oops

Picked up my wig today. For fake hair, it's not bad and pretty closely resembles my natural hair. I'm not sure if that means it's a good wig or if I have bad hair. ;-)

Anyway, as most of you know, the wig is primarily for the kiddos. Trying to keep things as close to normal as possible. They know Mommy is going to lose her hair and they understand the whole wig thing. Mattie initially requested a pink wig (which I'll still do) but she then told me I needed to get a "yellow blonde" wig so I would look like her. Though I tried one on (in the same style) and took a picture for her, I opted for the brunette version. When I showed the wig to the kids this afternoon Gabriel smiled and said "It looks like your hair, Mommy!"  Mattie said she liked it and then she started looking all around. A little confused, she asked where the blonde one was. I told her I didn't get it and she burst into tears. "You were supposed to be blonde like me!"  Bless her heart. Of all the things I considered having to comfort the kids over, this certainly was not on my radar. 

Back later. 

Love to all,

Andee

Challenges

One of the biggest challenges when dealing with cancer and all of the associated treatments and procedures is the feeling that as soon as you start to feel like yourself, it's time for the next thing. Don't let it get you down. Take each thing as it comes and count it as an individual accomplishment. Manageable pieces, that's the key.  Don't ponder the entire journey, just take things a day at a time and take each completion as a win. 

I have 2 appointments this week, one down, one to go. Win!

Strength!

Me and my baby boy. One of my sources of inspiration - he knows how to fight!!! I'm not referring to the scratch on his nose...he was on the losing end of an encounter with some playground equipment. I'm talking 50/50 chance of survival kind of fight. 

Carter/Doolin/Hatfield/McCoy...it's in the genes!

Busy, busy, etc.

Well, I've had a full day of fun already and it's not even 9:30 yet! Up before the sun, helped get the kids ready, made it on time to my 7:30 AM PT appointment, got groped a little, learned a lot, picked up an Rx in prep for treatment, which begins this week and got most of the tools needed for eyebrows and eyelashes...cause, ya know, I soon won't have any. ;-)

I'll write up my PT experience later. 

Love to all!

Andee

Define Mother

Originally posted May 2012 on my original blog. 

__________________________________

It should be pretty easy, right? I used to think so but then life happened. People who haven't been through infertility or loss of a child probably don't think twice about what makes a mom. Six years ago it became a very confusing and difficult concept for me. Mother's Day became a horrible thing. Don't get me wrong, I recognize the day but I have a whole new perspective on it. So, you may ask, why the heck could it be so difficult to define "mom" and what's so bad about Mother's Day. Well let me tell you.

Imagine that you lost your first baby and a few months later, here comes Mother's Day. Your family and friends seem very uncomfortable around you. Do they wish you a happy Mother's Day or simply remain silent. It's a no win situation for everyone - if they mention it you could have one of those spontaneous emotional breakdowns. If they don't, they might feel bad about avoiding the subject. It's so awkward. I also had a really hard time when people asked if Bobby and I had any children. You don't want to go into your crazy mixed up medical history and explain that your defective body generated a tumor the size of softball which caused you to lose an otherwise healthy baby. But you feel a tinge of guilt for not acknowledging your child existed. This stuff will mess with you, I swear.

By the next Mother's Day, I had been told that my surgery was so invasive that we wouldn't be able to have any more children. The pregnancy we lost due to the "tumor from Hell" would be our only one unless we chose to put ourselves through In Vitro.  No, thank you. I've had enough tests, needles, procedures, specialists and heartbreak to last a lifetime.

Obviously we were blessed with 2 little miracles (and I don't use that word lightly) but I'm still hyper-sensitive to how painful that day can be for some people. To be honest, it's not my favorite day of the year. I love my babies but even with all that I have, that day reminds me what's missing. I feel pain for all those women who want so badly to have children but, for whatever the reason, cannot. I feel for all those who have lost a child.  I can totally relate to women who would rather hide for one weekend in May.

So think about it - what makes someone a Mom? Does motherhood begin at conception, when you're showing, when the baby is delivered, do you have to spend so much time with that baby before you're a mom?You may consider yourself a mom when the rest of society does not. Not as easy as you thought, is it?

Yes

More stuff I like!

Let's get real for a minute

I usually keep my posts on the lighter side. This one won't be dark or depressing, just real. I feel an obligation to "preach" just a little bit. This is for everyone, not just my lady friends. The men out there (if any read this) have mothers, wives, daughters, nieces, and female friends. The fact that 1 in 8 women will be diagnosed with invasive breast cancer in their lifetime is a staggering statistic BUT every woman likes to believe that they will be in the 7 and not the one. I'm here to tell you, I thought I knew what I needed to know to protect myself and to catch anything early. Trust me, you do NOT know everything and you're probably either not doing as much as you think and/or you're functioning under certain incorrect assumptions.

I am not a medical professional, I'm a professional patient and an experienced mom of a semi-pro patient. When faced with a challenge, I try to learn as much as I can because I am a part of my treatment team. The doctors are there to assist me, NOT direct me. The decisions are mine and it is my responsibility to learn as much as I can in order to assist in my treatment and recovery. I continue to be amazed at the "shock" of the medical personnel when they try to explain things to me and I throw out the name for what they are trying to explain or some bizarre possible side effects of a treatment. I get the sense that most patients they deal with are a just along for the ride. GET INVOLVED IN YOUR OWN CARE! Learn, learn, learn! Do it BEFORE a diagnosis but especially after!

I skipped ahead, let's talk about detection and some myths/misconceptions. I'm as guilty as anyone in this department so there is no judgement here...

• I do regular self-exams, that mammogram can wait. Wrong! It is very important to do self exams on a regular basis but here's something you may not know. One of the types of BC I have (I have 2 in case you didn't know) does not cause a lump. Let me say that again, IT DOES NOT CAUSE A LUMP. You could be doing exams until the cows come home and still never know it. Mammogram, mammogram, mammogram!!!
• I felt a lump but I'll just keep an eye on it.  I'm sorry, what?! I was not an offender here. I found my spot on Saturday, called the doc  Monday, physical exam Tuesday, mammograms x2, ultrasound, biopsy and diagnosis the following Wednesday. Bilateral mastectomy one month to the day after I found it and chemo starts 2 months after I found it. How long were you thinking about waiting?  Trust me, the fear of what "might be" is much easier to handle than the reality of a diagnosis. You are not doing yourself any favors by waiting.  Remember, most lumps found are benign but isn't it better to know for sure?
• I have no family history of breast cancer so my risk is low. You are at higher risk of you have family history but 70-80% of cancer hits people with no history. It's random, it's sporadic. 

Cancer is scary. Treatment is scary. "What ifs" are scary. Cancer is something I have but it is NOT who I am. I make a choice every day to put a smile on my face, to enjoy the wonderful life that I have, my fabulous family and friends. Not one of us is guaranteed tomorrow so why should I be any different now than I was on March 14?  Think about that. 

I'm not super strong, I'm not Wonder Woman, I'm not amazing. I am Andrea Doolin, same goofball I've always been. I am a wife, a mother, a sister, a daughter, a cousin and friend to so many wonderful  people. We've been through a lot but it has made us who we are. I have so much to fight for and not one thing that I'm willing to give up on. They were just boobs (or breasts if you prefer), they didn't define me. It's just hair, it will grow back. The purpose of this trial is for me to share information, be candid about the journey, and hopefully provide a little inspiration for others who may come after. What you see/read is what you get. I am blessed beyond measure and I'm ready for battle. 

Love to all!

Andee

I like this!

We could have danced!

When they wheeled me into the OR this morning, Dr. AJ had music playing. I told him he could turn it up. Then I told him and the nurses about almost asking for the dance session before the mastectomy. The nurses had seen the video so we talked about it for a few minutes. Dr. AJ hadn't seen the video but when we told him about it he said he would have let me do it! I told him we didn't know each other well enough at the first meeting to ask but if I see him again, you can bet I'll ask for the pre- op dance session. :-)
He's so fabulous! He's definitely getting an invite to the dance party.

She's out!

Hey peeps! This is the sister in law! :) Andee is out of her port placement procedure laughing as usual! She is waiting for a chest X-ray before she can be released to go home and rest.  I just want to say from me thanks for loving and praying for our girl! Keep it up!!! I'm sure she will be posting later! :)

Pam

It's Friday!

I haven't seen my surgeon in over a week and I haven't been stuck with a needle in at least 3 days. I'm going to enjoy this Fri...oh wait....

;-)

Getting ready to head out and get an implant!  Happy Friday, friends. 

Love to all,

Andee

Now that's just silly!

It's so important to share your life with someone who will laugh with you - especially when most people would think there was nothing to laugh about! Oh, how I adore this man. 

Let's talk about ports

At this time tomorrow, I will be experiencing the joy of port placement. You may be asking, what in the world is a port and what's the big deal? Well, it's just another brick in the road. The port is actually a wonderful thing. If it wasn't for a  port, chemo would have to be administered via IV...put in every treatment session. Goodbye veins, hello blowout!  The other silver lining is that the port can be used by everyone! They can take blood, give meds without multiple sticks. Woohoo!!

The port is placed during an outpatient procedure. It should only take about 30 minutes and my lovely surgeon will be doing the honors. Once the procedure is complete, they'll take a quick x-ray because there is a risk of puncturing the lung (see image below...yes your lungs go up that high). I'll then be sent on my way with orders to take it easy for a couple of days.

A picture is worth 1000 words

If you've never met our kids, this pretty much sums it up.

Yes, cancer does suck BUT it has it's silver linings

Ladies (and gentlemen), imagine, if you will, that you were given the following options (minus the whole cancer thing):

• If you don't like your hair, change it. As often as you like and in whatever style you like.
• Never color again. If you want a new color, just get new hair!
• If you REALLY don't like your hair, just take it off. No...really, you can!
• If you don't feel like fixing your hair, just throw on a hat.
• If you do feel like fixing your hair, it doesn't even have to be on your head so you can actually make the back look FABULOUS!
• You don't have to be wearing your hair to wash it!
• Breasts getting in the way? Just take them off, too!
• No bra required - let me say that again - NO BRA REQUIRED
• No waxing, shaving, plucking - (Cue the heavenly music!)
• The foods you love are suddenly going to taste "not so great" but peanut butter and chocolate will probably remain yummy!

Happy Wednesday all!

Love to all,

Andee

Thanks Beth!

Wearing it out!

The Daily Laugh (I know, it's been a while) - The Penguin Dilemma - Translation

I just can't sit around

I think I'm going to go to "town" and check out some wigs...or, as my prescription describes it, a "cranial prosthesis". Seriously. I know, it sounds like I'm getting a replacement for the top of my head but apparently that's the term. "Follicular prosthesis" sounds more appropriate, don't you think?  LOL

Love to all,
ACD

ICYMI Facebook Scan Day Edition

Below - my post as I was drinking the "gunk" before my CT. 

Getting bored while waiting results in random thoughts...and posts. 

At the end of the day, a bonus. My oldest nephew graduated from Air Assault School. So proud! My mother in law attended graduation and brought back an awesome PINK Army hat. Showing it off with pride!

Love to all!

Andee