Wednesday, September 30, 2009

One ll More Chemo Down

I had a chemotherapy port placed in my chest early this morning and after a brief recovery, I was sent upstairs for the next scary injection of chemotherapy. I go ta copy of the paperwork of my meds so that when I describe it in another blog here, I can do it corectly.

Although I was given something to relax me, or at least keep my blood pressure down (lol), I was awake for the import. It was uncomfortable, but that is because throughout this ordeal, I've gained a fear of doctors and needles. In other words, I've become a big sissy....go figure. BUT, I still believe I have the best docs and nurses around. Anyway, Dr. Andrews, cut an incision, numbed me, created a "pocket" and put in this lovely little port that will serve as an access point throughout the rest of this ordeal, thus saving what's left of my veins. He stitched the insider first, then glued the outside. I should note that this cancer did not destroy my veins, they've always been tiny and shy making it hard for needles. Almost always a butterfly is used. Anyway, the port can be there for up to 5 years if necessary, but as Dr. Andrews said, "Whenever you have a foreign object in your body, you run the risk of infections." Noted sir. They did a good job, but now I am quite sore this evening. The other part of the port is the cut into a large vein near the clavicle. Yeah, Jeff, the other doc, said he could drive a truck through it - nice. Cut and paste babe, cut and paste - and get out of there. That was all that ran through my mind.

The chemo is already starting to drain me, and on the way home, I picked up my bible and read a special passage. Why was it special you might ask? Because my friend Maureen gave me the small English version bible (better reading) that I can carry in my purse, and my other friend Lilly recommended a passage. Psalms 103. When she did, I told her that I usually just open it and ask God to talk to me. Funny, the EXACT page I opened to was Psalms 103. Out of alllllll the pages in the bible..... think there's a message there. I think so.

My friend Pat, who took me over for my treatment was able to come in to the area and sit and watch what goes on. Even she agrees that it gives you a different perspective from what you think may be going on - and you get to see it up close.
Pat has had her own share of what I'll call medical moments, so she has that special respect for both patients and doctors. I so appreciate her taking her valuable time to help me. Thank you Pat - you are the best!!

Another special moment was seeing Dr. Perez, my surgeon. Just a super Doc! I get teary eyed when I see him, because I know it was through his hands that the cancer was removed from my body. As he walked away, I noticed Bev (nurse) in the hallway and guess what - she had her Fight Like a Girl t-shirt on! I thought that was just too cool. Hopefully, it gives other women who come in there that extra "oomph" to get up, dress up and show up. My first promise to myself was just that, and I'm still trying to keep that promise. Lord, please give me strength.

Sunday, September 27, 2009

Tins and an old friend

A friend and co-worker (volunteer) where I work, showed up at my office with a big, pretty tin. Inside was several items that she clearly spent a great deal of time thinking about and finding. I want to share them here because she had no idea that on that morning, I was feeling so very, very low. When I opened the tin, my spirits were lifted, I needed that moment more than I would have thought. She gave me several beautiful books - even "The Last Lecture" by Randy Pauch; a Tetris game; a dream catcher; an eye mask (to shut the world out); an awesome little teddy bear who plays music and his wings move; ginger snaps, and many more amazing gifts. I was overwhelmed at that very moment, and so appreciative. Thank you, Harriet, you never cease to amaze me and your kindness will be remembered always.

Thank you, Jesus for sending me all the beautiful angels in my life.

Well, that is it. As of midnight last night, I said goodbye to the last of my lifelong friend, my hair. It sheltered me from the cold, put up with kids and hair dyes, and even got me a few dates through the years! ha....Adios Amiga....

Last night, Kyle, Rosie, and I stood in the bathroom and they shaved the rest of it off. I could no longer take the aching associated with the effects of the chemo on what was left of my hair. It constantly felt like someone was pulling it out piece by piece at the root. Additionally, it was falling out so fast that I was finding it on the floor, on my pillow, and on my clothes - everywhere! And it itched as it dropped down my off with it!! I'm not even remotely excited about the "new do" but at least it will grow back one day and until then, I hope to be able to rest at night without that aching feeling. Physics - shall we discuss that for a moment? You are so wonderful to offer the kind words, and I know it will grow back, but you may look at it and think, its only a few months, but for me personally, I can tell you already that each day feels like a month.

Today, I was educated in what it felt like to be "different". Some people looked at me and smiled, while others looked and quickly turned away as if thinking, "If I don't look at her, it/she doesn't exist". It being the cancer of course. I intentionally wore my "Fight Like a Girl" shirt today because I had on a pink turban. I had no idea how many eyes were on me until one older woman said, "I love pink, its very flattering". As I thanked her, I looked around and yep, sure enough, others were staring, but they would not meet my gaze. And so I looked down, and away.... I would like to think that it was because people don't know what to do or say, and as they turned away, I caught myself looking down - as if I were not good enough........Uh, what?? Hello, not happening, at least not a second time. Not because it was me, but because when I am out there, I need to serve as.....I don't know - an Ambassador or something for women with breast cancer. People need to be educated. Ladies get your mammograms! Take control of YOUR situation and your life.

I have found so many things that need to be addressed. First, cancer affects everyone around the cancer patient; at home, at work, in public. Why is it that insurance companies pay for non-vital things such as Viagra, yet they don't play fair with vital follow on care and reconstruction a woman needs after having a mastectomy. Medicaid may pay for basic reconstruction, but not symmetry so the breasts are somewhat similar. Although the Women's Rights and Cancer Act of 1997 made coverage mandatory, many insurance companies still fight charges. And every single day, when a woman is fighting with her insurance company to help her cover expenses that should be a given, she should actually be resting and taking care of her body. I can tell you without hesitation that mastectomy's are very traumatic. According to Dr. Richard Dowden, Cleveland, OH, states on his webpage, "You must be aware that many insurance companies try to get out of coverage for that situation any way they can, usually by tricky wording in the contract or by blatlantly disregarding the AMA guidelines. And even if they do assist with the costs, the insurer will not likely help with the expense of putting new implants in." (

For centuries, women have been raised to take pride in their appearance, and nurse their babies at their breast, yet, when a horrible disease like breast cancer strikes, the answer is "We're sorry, we can't help you". Someone needs to take a stand to help others who follow behind us. Doctors and nurses are diligently doing what they can to help, but patients need another voice - yours, mine, and so many more. I hope that each of you reading this will consider taking the time to write your insurance companies, Senators and Congressmen. Petition them to bring this issue to light and to change the laws. That way, our daughters, and their daughters, and their daughters, will never be left feeling like they are only half of a woman.

Wednesday, September 23, 2009

Filled UP!

I returned to Tampa VA today for the doc to check my current "fill" status and review the "girls" to ensure there is no infection going on. According to Dr. Carter, everything looks good! ~ Yay for me ~ So you know what that meant, right? Another fill, although I wasn't quite sure where he could possibly put it!?! Well, let me tell ya - there was room, and Dr. Carter was able to put one full needle in the left side and almost two in the right....oh my gosh, I have these monster boobs right now....sorry, but they are enormous to! Now, I gotta figure out what I'm going to hold them in - I don't think ANY of my bra's will contain them at this point.....

Oh my! I'm often reminded of just how very lucky I am. I ran into another woman who goes there and is almost finished with her reconstruction. She, like myself, has been pleased with the surgeries and treatment. I also met another woman, a new friend, and as we stood around talking waiting on our appointments, she filled me in on how they repaired her nipple area's....I was amazed, albeit fascinated - can't wait for more needles! ha~ Anyway, get this, she grabs my arm and says "You gotta see'em!" so we went into the restroom, and see'em I did...they look great! You couldn't even tell they weren't "real", I have hope! (Had that anyway, but now I have a better visual idea). It was all quite surreal, and the truly funny thing is that so many people have touched or seen my own now that my modesty is about gone so I completely understood her when she did that......God works in mysterious ways.....and as for the men in the hallway listening to our conversation? Priceless....

I surprised my favorite nurses today. Leslie, Kelly, and Bev were all in when my sister and I arrived. I gave them their own "Fight Like a Girl!" T-shirts and they all put them on, so I have new pictures posted. My sister had hers on too!! As usual, people continuously stopped us to ask about the shirt, what it meant, where I got them, etc..... These docs and nurses literally saved my life so giving them each a t-shirt is peanuts and no comparison. I can never truly repay them with anything except my eternal gratitude and praise!

Finally, drivers were nuts from Mel to Tampa and worse on the way back. I-4 is a freaking speedway. If you are not doing 85, you are safest in the farthest right lane. And at that speed, they are only 12 feet off your bumper (max).....stupidity never ceases to amaze me....

My spirits are up and I'm feeling good today, even with these bigger rock hard twins.....LOL! For the record, they have to stretch them more than the size I will ultimately become, that way they will look and feel natural..... I know I'm only "halfway there", but halfway is a whole better than where I was just four crazy months ago.

Friday, September 18, 2009

All Kinds of News

"Big" news! On Wednesday, I was lucky enough for the doctor to tell me I can keep the expanders in for now. As a matter of fact, he did a "fill" and put 500 cc of saline in each one and wow - I have CLEAVAGE!!Seriously, they are looking decent. He wants to add more next week as long as the infection stays away. I had no expectation other than to hear Dr. Carter say, "we're taking 'em out, or leaving 'em in". No idea that he would ask me to come downstairs to begin the next step in reconstruction. I was ok until I saw the needles! At first, he took two needles out and said he would numb it - No biggy I thought. That was easy. What was I thinking?? Holy s*** - the next FOUR needles he pulled out scared the bejeezus out of me and I dang near fainted. No lie, each one was about 14 inches long and about 3 inches in diameter. I started to sweat and my eyes blurred - "Hey, Doc - you're not using those are you?" Ahh, but of course he was. I started to cry - everyone wants to zap me with needles nowadays and I have truly gained a real fear of them - especially those big ones! Lucky for me that once he located the correct area of the magnet in the expander, he knew exactly where to inject the mammoth needles. Yippeekiyaa....Each one took about two minutes to inject - he went slow. My chest is a bruised, but thankfully, there are still many area's that remain numb from the original surgery. Guess what - the doc wants to do another fill next week, too...yay, can't wait for THAT trauma.....

As for today, I had the wits scared out of me.

Unfortunately, one of our awesome guys' son was diagnosed with swine flu. "Dad" came to work - as he normally would....but it immediately had me on high alert as soon as I found out. He had no way of knowing that if he is carrying the virus, he could transfer it to me and it could be lethal......scary thought, huh? Cancer patients systems are highly compromised - especially during the second week after a chemo treatment, which I'm in that week...... I sure hope his little boy is going to be ok. Everything I hear about this flu is that it is bad and takes a lot out of everyone it touches. As for me, I'm staying away.....

Other than that, being back at work is great - I really did miss my group - especially the ladies in Admin. They are top I brought in tons of chocolate to show some

This week my energy level is coming in tiny little bursts and I'm enjoying each one of them. It's not much, but I'll take it! My cousin Deb sent me an email, and my aunt who is undergoing her own chemo at 80 years old is still hanging tough. I look at her and know that she is my chemo hero in this mess. If she can do it, so can I and I will continue to smile, as she does, and look to the Lord for faith and guidance, just as she does. Love you Aunt Rose.

Monday, September 14, 2009

Back to Work

Today, I returned to work for the first time in about two months. It was a long and tiring day, but it was also very refreshing and uplifting. I enjoy where I work and the people I work with - something I think is very important considering so much time is spent "there". I look forward to getting back on my feet and in the midst of things....a sign that this journey is one day closer to becoming a turned page in my book.

Several well-wishers came by and complimented my hair, which is still a bit strange to me, but I'll have it just long enough to get used to it being short. :) So much to catch up on but I am moving much slower now than when I originally left for surgery, so I am determined to ease back into the pace. Health first, and then I will be more efficient in the job.

I received the "It's a Wrap" wrap for my head today. It is a nice chocolate color made for me by Laurie Erickson and her group at "Its a Wrap". The wrap is lovely but what made the whole package so very special was that inside was a card and the card was signed by the ladies who make the scarves at awesome is that? And then, there is a little fairy attached to the end of it as an extra. And to think they do this, at no charge for all women losing their hair to chemo. There is truly divine intervention.....and I will be honored to proudly wear what they have given to me in love and spirit. Thank you, ladies!

Saturday, September 12, 2009

My Sister-In-Law

I first met my sister-in-law, Penny, when she was eight years old and I went to St. Louis to meet my husband to be(s) family. What a little beauty she was, and still is. I was always so fond of her and wanted to be protect her at all costs, although I can't say I did a great job....Last night, she reminded me of a time I got her in trouble with her mom...My bad..Sorry, Pen...really, really sorry....I was only 19 myself....I still love her, and the rest of my in-laws deeply. They are a wonderful family that I am proud to be a part of.

Anyway, a week ago, we talked and she told me that her husband had just been diagnosed with Stage 3 Lung Cancer. I almost fainted...Not to Penny, please Lord, don't do this to her, she's a GOOD woman. We talked for a long time, and I did my best to encourage her to keep her chin up and believe not only in miracles but medicine. Times have come a long way with how they can treat cancers and other ailments. My heart deeply ached because I knew exactly how she felt - lost, in disbelief, completely numb..... AND she just found out she is going to be a grandmother....before ME!!! What's up with that anyway?? Just kidding (my) boys - take your time.

To round this out, she called last night and said it was a misdiagnosis!! Apparently, Tom has some sort of infection or pneumonia that he will be treated for. I gather that this type of misdiagnosis rarely happens and I was stunned, grateful, and so happy for her. I felt absolute joy for Penny and Tom...I think I cried for 10 minutes after we hung know that they have more precious time together, without interference from this or any disease. Wow, it really made my whole day.

Today has been an odd day for me. I didn't sleep well and got up early to go to the store with my sister. I have to get everything I will need by Tuesday evening for at least a week to protect myself. Still looking to make sure I have what I need. Sure don't need have been so tired, unlike anything before now. So, I am taking everything slow and easy and I have rested most of the day. There is some swelling and minor aches and pains that I'm dealing with, but I still feel blessed. Wishing you all a wonderful weekend....

Friday, September 11, 2009

Day 3 after Chemo

Hi all! Well, I am on day three after receiving my first chemotherapy treatment. I have had a bit of indigestion, quite a bit actually, but am hanging on to everything. I will not be able to eat raw or undercooked foods for some time, for obvious reasons that there may be something left on the food that could place my system in harm's way. I have to be careful with everything I do now, including food, touches, exercise,

I am faithfully taking the heavy antibiotics given to me for the return infection in my breasts and this morning I felt a little bit of relief. The redness appears to be going away, and the swelling actually went down. Never thought I'd want to hear that after having them both removed, but thank you, Jesus!! LOLOL

Next week, starting on Wednesday, is my "weak week" - week 2. This is where is the white blood cell count is most compromised, so I will be extra vigilant during each of those weeks of the four sessions I must undergo. After that comes week 3 and I should be feeling pretty good, just enough time for them to zap me again....So what do I have to say about that? Bring it on, I want to live!!!!

I sent Oprah my new haircut picture with my first chemo treatment. Her O magazine has a great article, "You're Stronger Than You Know"....and it just seemed to fit my day and my hopes for myself, to stay strong throughout this journey. So as the minutes ticked by one by one, and I tried not to clock watch by reading her magazine. It helped the two and a half hours go by just a little faster....

Wednesday, September 9, 2009

One Down Three to Go

I had my first chemotherapy treatment today. Of course there were minor setbacks that resulted in delays, but in the end all seemed to go well. We arrived at 0830 but had to go sign some consent forms, etc. Then the blood draws, then the mixing of the chemo "cocktail" as they call it and the IV......Oh how I dislike needles.... But, Libby did great! You can see the pictures of today's events - and my new hair as I am posting them. The duration of the day was spent talking to nurses, a Pharmacist, picking up more meds yet, and watching TV. I tried to relax but what I thought about most was time, each minute that passed seemed like an hour. It took 20 minutes for the Dexamethazone to be administered, then it was switched over to the Cyclophosomide which took an hour, and then on to the mean Docataxel - covered in a green protective film to protect it from light. That also took an hour.

I did get some food on my stomach because my other doctor in reconstruction put me on a heavy dose of antibiotics, as we fear the infection in the left breast has returned. I can only hope and pray that it goes away and holds out for another 89 days.... otherwise everything stops and the expanders will have to come out. I could actually care less about that at the moment, all I know is that I have to get through this chemotherapy....that's the top priority. Please help me pray the infection settles down....

I think the worst (or funniest) photo here is when the IV was going in...holy crap!! It felt like - well, I'm not quite sure I can put it into words....what I can say is that I'm lucky I'm getting a port put in on the 30th....whew - then everything in or out will go through that and not what is left of my little bitty veins.

I took my Oprah magazine I bought. I got it to read the last page - "You're stronger than you know". Well, after today's events, apparently I am (as long as you missed the needle picture). While reading it and trying to keep my mind busy, I found Ellen in it too - she's surely getting closer to being on the cover with the Mighty O.... Two women of great courage, life stories, and the true desire to help others and make them laugh. I'm glad they were part of my "life ordeal" today.

I have to thank my sister Sherry most. She's a champ for sure. The last few days I've been fussier than I thought I was and she tolerated it well. Guess I was a little stressed out about today. Thanks, Sher - I soooooo appreciate all that you and Ferell do for me each and every day....

Friday, September 4, 2009

"We never know how strong we are until being strong is our only choice".

The last four months have been amazing, crazy, uplifting, scary, and full of hope and faith for me. What has been the absolute scariest time of my life has been turned into a gift from all of you.

Whether or not you realize it, your comments to me here have been very inspirational and have helped me to get through each day. There were a few times when I nearly broke down thinking I really might not make it, but I would block out those thoughts and re-read comment after comment here. And then, I would get down on my knees and pray.

This post is for no other reason than to thank all of you. You truly cannot imagine how alone I have NOT felt knowing you were out here to encourage me. I thank each of you from the bottom of my heart. Know that I remain strong and vigilant in this life mission and I am determined to make a full recovery.

I am eternally grateful.

Thursday, September 3, 2009

Scans and Plans

Hello all! I had a "PET" Scan on Monday and yesterday I received the results. First, what exactly is a PET Scan? Its formal name is Positron Emission Tomography and its purpose is to determine the presence and severity of cancers, neurological conditions, and cardiovascular disease. It is currently the most effective way to check for cancer recurrences, and it offers significant advantages over other forms of imaging such as CT or MRI scans in detecting disease in many patients. The risks associated with a PET scan are very minimal as the quantity of radiation is low and the FDG (-Deoxy-2-[18F]fluoro-D-Glucose) degrades quickly so that its usually out of the body before a patient leaves the area.

It was painless, and I owe a beer to the Tech, my new friend, James, who was able to get my vein on the first try....a rarity these days. He put in an IV and then came out with a needle encased in a heavy lead tube!! My eyes about popped out of my head, but James explained that it is to protect him. I completely understand because in order for him to be helpful as part of my "team", he must deal with this radioactive material daily.

My results were negative. What this means is that THERE IS NO CANCER ANYWHERE in my body!!! Oh my, thank you, thank you, Jesus!!! You cannot even begin to imagine my joy at hearing the nurse's words. This was such incredibly good news for my long term recovery. The next milestone is two years. If I go two years without incident, things look good. The next milestone is five years. If nothing at the point, I can expect a good healthy rest of my life.

My chemo and doctors will be changing once again. I have decided to stay under the VA's care for multiple reasons. The first, Dr. Pooja Randham, Oncologist. Her decisions on the type and length of treatment, and my understanding of "why" is clearly acceptable to me. She will treat me with the "TC" version of chemotherapy - and only with four rounds of it. TC is less damaging to my heart and is not known to cause leukemia, as does the AC. If I were to get this particular type of leukemia from taking the AC, it is very bad and would likely be lethal. Check. Next, only four rounds - that means in three months (not six) - by CHRISTMAS - I should be getting my life back, with the exception of the rest of the breast reconstruction. Check, check. Lastly, costs. I had no idea that the costs involved. If I remain in the civilian sector for care, the cost will/can rise to over $100,000, of which 20% (or $20,000) I would be responsible for. If I stay with the VA, it is free to me.....check, check, check. Decision made. My priorities in life have been steadily changing and I want to LIVE my life more than ever and I don't want to live to work to pay this back....I want to be able to help others.

Pooja said it is imperative to begin my chemo treatments immediately - because of that dang triple negative feature. Soooooo, next week on Wednesday, Sep 9th, I will receive my first treatment. After that, only three more to go (every 21 days). They have delayed my return to work until the 14th to give my body a chance to process the first treatment. When I return to work, it will be on the second week - the week I am most susceptible to illness due to my WBC (white blood cell count) so I beg that anyone with a cold or sniffles please keep distance from me. Your colds CAN kill me. But, I would love to visit with you during the third week. ;)

Now, I need to rant for a moment with the last bit of this I'm struggling with. I will still lose the rest of my hair and I know it. I saw a woman yesterday, her hair was maybe 1/4 inch long - and I almost cried right there. My heart dropped to my toes. I am really having a hard time with this part. I still want to be in control and just cut it off, but I know that I am going to look so dreadful that it just takes my breath away. I KNOW it is temporary, and I KNOW I have to do this, and even though I pray hard about it, I'm just sort of stuck in my tracks today. I feel like it is the last bit of my girlishness that I have to hold onto and it really sucks. There, 'nuff said.

But, I guess it is time, so I will ask my friend Kathy if she will cut it for me....not all of it, but most of it. That way, if I cry, she will really "get it". Kathy's sister went through her own experience with breast cancer and Kathy even walked Tampa's 60-mile breast cancer awareness/challenge a couple years ago......Seemed like every week, she was driving north to spend that critical time with her sister.

Anyway, to the right, please note my new friends and team members. I would like to publicly applaud them for their kind, caring, professional demeanor's. My sister and I were having a conversation on the way to Tampa about how I really liked everyone involved in my care, and how lucky I feel to have them. I believe that there are two types of doctors; the ones that are genuinely concerned about the care and wellness of the patient (and it is reflected in how they interact with the patient), and those that are indifferent and matter of factly with little or no "personal" interactions. Well, I can tell you, for me, this IS personal so I want docs who are willing to be personally involved with me. And I know how blessed I have been to have just that kind of care. Well, lo and behold, Sherry and I were getting on an elevator in the VA and noticed a man in a wheelchair with one arm was trying his best to get out of the elevator. We actually had to put our arms out to keep it from closing on him because two residents in training (students) on the elevator would not even look at him, they kept right on with their conversation! THAT is the difference I am talking about. Shame, shame on them. Neither of us could believe it.

OK, time to buy a wig and some scarves.....have a wonderful week and a beautiful Labor Day weekend.