Fun Weekend

Couple of photos from the Cancer Walk. Lots of people, pretty scenery, survivor tent was almost empty - what's that mean?!?!, "free" T-shirts, great company!

Hey they have petroglyphs here in Arizona too!

Pretty Day in the Canyon


You know I can't resist taking pics of elk bones!

Hope all of you had a great weekend also!

Today's Appointment with the Oncologist

It was nice to see Angel Nancy again. She stopped by while I was waiting in exam room one. I was all set for this appointment - I had my questions in a list, I visualized on the way over being calm and reasonable with the doctor, I took deep breaths, and had psyched myself up to keep my cool and stay focused. There must be something about that building though - I got out of my car and I started sweating and trembling. My hands were shaking so hard I could barely sign in. (I'll have to work on that because I'll be spending some quality time there.) So like I said , it was very nice to have Nancy stop by, calm me down, and laugh at my lame attempts at jokes. By the time the Doctor walked in I had most of my chemo procedural questions answered and I could ask him some reasonably intelligent medical questions.

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We got my oncotype test results back and they came out exactly as he predicted - I scored a 19. This is just barely into the average range - a few points lower and I would be in the low risk for recurrence range with a slow growing cancer. But average risk is better then high risk I'm thinking so it is not necessarily all bad news. The decision had already been pretty much made but these results sealed the deal - I will be going through chemotherapy. Since I have decided to not participate in the clinical trial he recommended that I do four treatments with Taxotere/Cytoxan. I'm with you - did we hear that right?? He said it again when I asked him to repeat it - only FOUR treatments - one every three weeks. That's six weeks shorter than I was expecting. If any of you had listened closely in a quiet moment this afternoon you might have heard me singing at the top of my lungs and dancing the whole way home. Probably not many people celebrate finding out they are doing chemo but I really really needed some good news and I took those six weeks and partied with them. Scheduling it all out - all of the treatments of chemo and radiation will be finished by Christmas - CHRISTMAS!! Huge New Year's Eve Party at my house and all of you are invited!

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And the winner of the "who gets to go with Linda to her first chemo" award is - drum roll please - opening the envelope - it's my little sister!! Yep - first chemo is on August 26th - two days after she gets here and one day after our Mother's birthday. Happy Early Birthday Mom!

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The Doctor held one hand up high and said "this is a very aggressive chemo treatment plan", he held the other low putting a couple of feet between the top and bottom hand "this is a nonaggressive chemo treatment", he moved the top hand down a couple of inches "this is the treatment we are using on you". He said one of the good points other than we are being aggressive is that with this TC treatment the side effects aren't usually as harsh as some other treatments can be. I will still lose the hair (blahblahblah - you have heard all about this ad nauseam) plus there can be some swelling. Oh great I have a few months of looking like Uncle Fester ahead of me. But hey that's six weeks less than I thought................ (sorry I took a break and did a little soft shoe)!!! He gave me a few prescriptions to be filled before the big day and sent me out to make all of the appointments. The first chemo trip will take most of the day with the different blood work that needs to be done and a bit of an orientation class. Once we start though he said it would only be a few hours in the chair.

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So quick recap, port put in next Tuesday August 19th, then the first chemo session on the 26th, hair all out by September 12th, second chemo the 16th of September, the third on October 7th, and the LAST treatment on October 28th. I should start radiation a couple of weeks after that (a little mini vacation for them from seeing me!) and even radiation should be finished by my birthday. I'm telling you - figuring out the whole logistics of this breast cancer thing is like having an annoying second job. I just wish it paid better. If I lose my day planner I'll never remember everything.

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So, those are the dates - anyone who wants to join Linda for a chemo session had better sign up soon because it's going to be over before any of us know it. Just having a game plan and moving forward to a cure is very encouraging for me.

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I'll be in Flagstaff tomorrow night getting ready for the Climb to Conquer Cancer hike on Saturday bright and early. I picked up our T-shirts today and they said 4,000 people will be there. I was thinking 500 - 4,000 seems like a huge number. I guess it just shows how many people have their lives touched somehow by cancer - or maybe they just have good food at the top of the mountain. I'll post pics later in the weekend.

Thanks Everyone!

What's in a Name? That Which We Call A Wig By Any Other Name Would Still Be A Wig

Did you know that there are stick-on eyebrows out there? They come in all sorts of sizes, colors, and shapes. Very intimidating, heck I just got my first brow wax only maybe three years ago. I've decided that my eyebrows aren't going to fall out - along with my eyelashes. I declare the area around my eyes as a chemo free zone. This would also be nice in keeping eye infections and dryness away so I can still wear my contacts. Hey - wait a minute though there are those Groucho Marx glasses with the built in eyebrows. hhmmmm...

So like I keep bringing up, I am weirded out by the whole bald thing so I've decided/trying to have fun with it. Everyday I can remake myself. Hat, scarf, commando, wig, drawn-in with a Sharpie hair, sunflower mural, rent it out for advertising..... The possibilities are endless. To avoid scaring children and to have nice hair for the first time in my life I did order a few very much on sale wigs (less than $150 for all three). See above - this is my "Alexa" persona from the online catalog. I ordered it in "cherry brown". How fun will that be? I've always wanted to be a red head and I like how the bangs are long so others won't be able to tell that I don't have eyebrows! The other two I ordered in blond - one for my "Destiny" persona and one called "Seduction". I think I had more fun with the names than I should have. All of the "Linda" wigs were terrible so I get a vacation from being myself.

Anyway, I would love to hear your ideas - preferably in ways I can make some $ - on what to do with the bald head. I am kind of excited to see what shape my head is - I'm thinking I'm an egg head. And I plan on getting most of it shaved off in a couple of weeks when my sister is here so that will be fun also. This cancer thing really is just one big adventure. Please remind me of that next month because that is easy to say now.

Anyone know how to keep a bald head from being blindingly shiny? Talcum powder? Flour? Foundation powder?

More Cancer Knowledge You Never Wanted to Know But If I Have to Know It Then So Do You - getting bossy aren't I?

The day is set - I get my new little buddy called a "port" embedded under my skin on the 19th of August. What's a port you may ask? I know I did so I looked it up on wikipedia and here is what they said:

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". Ports are used mostly to treat hematology and oncology (hey that's me!) patients, but recently ports have been adapted also for hemodialysis patients.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava.)
The septum is made of a special self-sealing silicone rubber; it can be punctured up to one thousand times before it needs to be replaced. To administer treatment or to withdraw blood, a health professional will first locate the portal and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a Butterfly needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. Also, after each use, a heparin lock is made by injecting a small amount of heparin (an anticoagulant) into the catheter. This prevents development of clots in the system. The port can be left accessed for as long as required, the port is covered in a dressing to protect the site from infection and to secure the needle in position.
The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort with breathing after the procedure, and can be managed with over the counter anti-inflammatories & tylenol.
A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under a local anaesthetic. When no longer needed, the port can be removed more simply in a clinic or doctor's office.

Here are some of the complications (rare) that can happen according to wiki : Infection - a severe bacterial infection can compromise the device, require its surgical removal, and seriously jeopardize the health of the already weak patient.Thrombosis - formation of a blood clot in the catheter may block the device irrevocably. To prevent clotting the portacath is flushed with saline and heparin, usually by a nurse or other medical professional, at least once every four weeks, or more often in conjunction with administering medication.
Mechanical failure - is extremely unlikely. It is possible in a rare event that part of the system could break and become lodged in the circulatory system. In such case it is unlikely to cause any serious harm.Pneumothorax - Attempts to gain access to the subclavian vein or jugular vein (jugular vein!?! That ain't cool!) can injure the lung, possibly leading to this complication. If the pneumothorax is large enough, a chest tube might need to be placed. In experienced hands, the incidence of this complication is about 1%. Arterial injury - The subclavian artery can be inadvertently punctured. This usually leads to a subcutaneous hematoma and occasionally a pseudoaneurysm. An alternative site may need to be used for port placement. Puncture of the carotid artery is more rare, since attempts to access the nearby jugular vein is increasingly done with ultrasound guidance. I've also read about some that "flip" or move around a bit which seems to cause discomfort and a bit of difficulty inserting the needle into the port.

So, my next question was "why do I want one"? Here's what breastcancer.org has to say - Your oncologist may recommend (like mine) that you have a port or "port-a-cath" inserted in your upper chest wall (the space between your collarbone and your breast) to make chemotherapy easier and more comfortable for you. What? More surgery? Don't panic. This is a simple, same-day procedure that doesn't require general anesthesia (my surgeon says he will use an IV med to knock me out enough that I won't remember what happened - "you put a what - where!?!?"). You will have a chest X-ray to confirm that the port is positioned correctly. When chemotherapy is over, the port can be removed quickly in another same-day procedure.
The port is about the size of a quarter, only thicker, and will show only as a bump underneath the skin. There are several benefits to having a port:
No need to find a vein every time you receive chemo. A special needle fits right into the port, so all you feel is the stick—not the poking, prodding, and false tries in your arm. The nurse may numb the skin first with ice or a cream, to lessen any feeling at all (yes, please).
A port may be especially valuable for women who might be experiencing some swelling of the arm on the side of their surgery.
The medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body.
Some types of chemotherapy can be very uncomfortable if injected into a vein just under your skin. The port avoids this potential discomfort.
Getting blood for blood tests can usually be done through the port, decreasing the number of times you need to have a vein "stuck." One site I looked at even points out that it's possible to feel the chemo going through your veins while using an IV - eewww that can't be fun and it causes all sorts of damage I hear if some of the chemo meds get into the surrounding tissue near the IV needle site. Plus I have always had horrible veins to find for sticking needles into so with all of this information I've decided to go for the "Full Meal Deal" and get the port - might as well get the whole experience right? And I've kind of been missing the quality time my surgeon and I used to have together.

Also on the Life is Good List - Puppies as Pillows!

Phooey On All You All

I was looking forward to sitting around and feeling sad and sorry for myself today and then you all have to ruin it for me. Funny sweet encouraging emails at work from one who had it so much worse than me and should be telling me what I wimp I am - instead she's sending me her "lucky hats" from her chemo stint to keep my head warm this fall/winter. A lovely phone call at lunch from a friend in Springdale I miss like the dickens. Emails and phone calls with an invite to play in Vegas this weekend. A great purple T-shirt in the mail from Red Lodge, Montana straight from a Climb for the Cure hike with "Survivor" on the back - a bit early for me to wear but I love the optimism! Some fun loving greeting cards that actually made me smile as much as I tried not to. Then while still committed to my evening of self pity a great phone call with my parents who refuse to let me drive them away with my curtness. And lastly in my futile attempt at an evening of drowning my sorrows in cookie dough ice cream - I decide to pop on here and my last post has some great comments that make me laugh so hard I start crying. And all sorts of great support like this happens to/for me everyday these days from all the wonderful people I know. Even when I am alone - I'm not alone. Thank you so much everyone - no way I can feel self pity for this when I have such great folks all around me. I am blessed!

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The "Clowns Will Eat Me" pin is from one of the blogs I have listed on the left of this page. Each blog is listed top to bottom by which has the most recent post. Some of them post more often than others. The bottom two though won't ever post again. Both Heather and Sarah had amazing voices. Like I have said - some amazing women have gone before me.

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I'm just worried/scared/apprehensive about what is coming. I promise when the hard part starts I'll not take it out on any of you (even you Mom and Dad who sometimes seem to get the worst of me). Seven months from now this will be over but for the rest of my life I'll know that I'm never alone even when I alone. I humbly thank all of you. And hey - there's number one on the two lists I am working on - for both the "why my life is good" and the "why I want to live" lists = my friends and family!

More Info About Cancer I Never Thought I Would Know

Ok - tonight's lesson, the Oncotype DX. The Oncotype DX ® is a diagnostic assay that quantifies the likelihood of breast cancer recurrence in women with newly diagnosed, early stage breast cancer. In addition to predicting distant disease recurrence, Oncotype DX also assesses the benefit from chemotherapy. It uses formalin-fixed, paraffin-embedded tumor tissue to analyze the expression of a panel of 21 genes and the results are provided as a Recurrence Score (0-100). Right now insurance only covers this test in women who are early stage (1 or 2) and are hormone positive and node negative. Hey - that's me! Which is good since the test costs close to $5,000. Yikes! Seriously I had better get a free T-shirt before this is all over. I am paying for a lot of new boats for these doctors/pharmaceutical companies.

Angel Nancy first mentioned this test to me not long after surgery and she made sure that they sent out for this test. The trick is to have a low low number - less than 15 would be nice. This means that the cancer is not a fast grower which translates to a smaller chance of having cancer cells spread and also means that the cells are such slow growers that chemo really does not give much of a benefit in destroying any cells that might have spread. I was kind of hoping my score would be low enough to have my oncologist not recommend chemo but alas it was not to be. At the last appointment while he said he was fine with waiting for the test results before starting chemo he thinks I will get an intermediate score and even if by chance it does come back low with the other characteristics of my tumor he is still going to recommend chemo. I should have the scores back on the 13th in time for my appointment on the 14th. I have decided to go with whatever my oncologist (and every other doctor I have talked to seems to agree with him) recommends. Maybe though his decision will change when he finds out my cancer cells are the slowest growers ever and my tumor took 30 years to get to that size! Yep I've had cancer since I was 10! Let that be a lesson to you youngins out there - don't be like me - eat you veggies~!

One thing I just thought of - the request for this test was made close to two weeks after my surgery - they needed tumor tissue to analyze. Yuck - where the heck are they keeping my tumor tissue!?>!?!>! Wonder if I can get some to keep in a jar! Remember last month when I was showing everyone my wisdom tooth I had taken out - this would be way more fun to show people. "Guess what this is?"

Have I mentioned that I named my tumor "smacky duck"? I thought "smacky" was no more but she's still out there somewhere or at least some of her.

I am still lousy at telling people about this. I've just started to blurt it out - no warning - "I've got cancer". Sorry to all those whom I traumatized with my blunt announcement. Anyone have any hints on how to tell people? I'd prefer that I'd not be known as cancer girl but I figure it will be easier on all if I give folks a head's up before I show up bald. It's going to be hard enough from my end but just think about it from my unsuspecting co-worker's point of view. Someone you see everyday all of a sudden has no hair - what do you say? How do you not swallow you tongue and how do you not stare? I'm all about watching people's reactions in funny uncomfortable situations but this one is too mean even for me.

Why the heck with all of this (by this I'm thinking pain, chance of death, the sending away of lots of $, putting my life on hold for seven months, the hours of driving, watching of my loved one with tears in their eyes, etc.) does baldness have to be one of the symptoms of chemo? Sigh. I keep thinking I'll just go au natural but to avoid scaring young children I might have to invest in a wig. Actually, the cancer society here has a used wig depot -which seems a little creepy but it makes sense. If I do get a wig when I'm done with it I will never want to see it again and would like to think it will help someone else out. So, I don't know maybe a kicky red haired bob. Then today I saw a girl with a really cool bandanna but then she had hair so it might not look as good on me. I do have some great ball caps though. I said that when I moved here I was going to start wearing hats - here's my chance. I am going to do something way awesome for Halloween though! Give me some ideas - pirate is always good but over done. I could draw a pirate on the back of my head and walk around backwards - now that's a good one!

Sad pathetic note - can't believe I'm admitting this. I took some great pics of my hair last night so I can remember us like we were - while we are still together and happy. New theme song India.Arie's "I Am Not My Hair".

You know though - it's not so much the losing of my hair - I actually think it will be kind of interesting to be bald (plus I've always hated my straight hair and it might come back curly) and reading the other side affects of chemo it will be the least of my worries once we get to that point. It's what others are going to think of me that I am freaking out about. No way will I be able to hide what I'm going through. I've had some friends seriously offer to shave their heads with me - I think that is awesome but one of the absolutetly dumbest things I have ever heard. You know who you are and trust me I would never in a million years do the same for you! So, keep your beautiful locks and tear off a fingernail or two for me instead! Yep - another fun chemo side affect, your nails crack and fall off....

OK - I know I said I'd post reasons why life it good. I'm still working on my list. I had a dear friend ask me to finish my earlier post "these cancer cells are messing with the wrong lady". She writes I encourage you to keep going... TELL ME WHY... WHY do those cancer cells not know what kind of woman they are messing with????? What kind of woman are ya, huh? Why do you want to live? Why do you want to survive? Do you deserve that? Huh? Why?????????? Because, believe me, that is exactly what those cells are screaming out inside of you for you to answer.... so let me have it... I want to know, in bleeding, screaming, shining vivacious color for all the world to hear.... WHY ARE YOU GOING TO CHOOSE LIFE????? She sent those questions on July 29th. I still don't have any answers for her. I'm working on this list too...............

Cancer Cancer Everywhere

I swear since I was diagnosed it seems like cancer is everywhere. Signed onto Eddie Bauer online to buy shoes last night and there are "pink ribbon" shoes - $2.00 for each sold to fight cancer! I open People magazine and there's a full page ad for a Fight Cancer TV show in September. In the local paper is an article about a Climb for the Cure event in Flagstaff in two weeks and the GC Association has a team - I signed up with a friend. And of course there are the famous people with cancer - Christina Applegate diagnosed with breast cancer just this week, Tony Snow dies of cancer not that long ago, one of our Olympic athletes diagnosed but waiting until after the games for treatment. But the one that hit me the hardest this past month was one I knew was coming. Randy Pausch died of pancreatic cancer on July 25th. He was a professor at Carnegie Mellon when he was diagnosed and given six months to live. I first heard about him this winter when a friend encouraged me to watch his "Last Lecture" on YouTube. When he gave the lecture he knew that he only had a few months left (he made it a bit longer) but he was so full of life and humor that you would never guess it. It's not that he doesn't mention it - he does. The lecture is about never giving up on your dreams, finding the best in others, and having fun. It's over an hour but I suggest that if you have a chance you should watch Randy's "Last Lecture". Or I heard there's a book out there too but it's watching him show off the stuffed animals he's won at carnivals and how he made each of his childhood dreams come true that's priceless. He was so full of life. He was 47.

Tired, Sore, and Cranky

Seems like nothing went right today. We are even more short staffed at work after losing another employee today, I'm still sore from surgery (shouldn't I feel fine by now), everything I tried to do at work I screwed up the first time around, hospital bills are starting to show up (I'm paying them for what exactly!!?? shouldn't I at least get an "I spent thousands of dollars at this hospital and all I got was cured and this lousy T-Shirt" T-Shirt?), my home is busting at the seams because it is chock full of breast cancer pamphlets (I am so going to have a great big bonfire when this is all over), I should have called today to make an appointment to have a port put in before I start chemo (but I didn't want to call today - so there), I've looked and looked but I can't find a funny quote to start this post with (except "cancer sucks" but tonight I don't find that funny), I really really want a diet coke, I'm scared, I've killed all my plants, I can't find half the things I am looking for, I don't feel like I have any control over anything, I miss my friends, I've started five different books and don't like any of them, there is nothing on TV tonight except The Mole and it doesn't start for hours, it was cloudy all day but hardly rained at all, I'm having trouble sleeping, I can see a picture hanging crooked across the room but I'm too tired to go fix it, commercials are stupid, and I was wrong to wait before starting chemo. I could have started this week and would have one session done with and now the waiting is going to kill me.

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OK - take a deep breath. Tomorrow will be better. It is kind of funny reading through the list how maudlin and silly I sound. Geesh - if those are the only complaints for the day that I can come up with then I have a pretty darn good life! Tomorrow I'll list all the reasons life is good!

A Day Spent on the Interwebs

Wow - lots of info on breast cancer but there sure aren't any answers are there? I've been asked to participate in a trial study (IRB# 06-090; TAC vs. TC for Adjuvant Breast Cancer Treatment). TAC and TC are types of chemo. Adjuvant Treatment is a form of treatment added to the primary treatment to keep the cancer from returning. The primary treatment for breast cancer is the surgery to remove the tumor. Cancer is sneaky though and can return even though the tumor has been removed. There are two types of adjuvant treatments - local and systemic. Local treatments are geared towards the area where the tumor was initially found - in my case since I chose a lumpectomy rather than a mastectomy I will have six weeks of radiation. Unfortunately (it's interesting how often that word is used when reading about cancer treatments) surgery and radiation do not guarantee that the cancer cells were completely removed. Some cells could have been left behind in the surgery area (which hopefully - another word I've seen a bunch - radiation will take care of ) or some may have broken off and traveled to other parts of the body though the blood stream or lymphatic system. These cells can lay dormant for awhile and then start growing again. Systemic treatments will hopefully (there I go again) take care of these. The oncologists looked at all of the results of the tests done on my tumor. I think it was mostly because of the size of the tumor (2.9 cms) that systemic adjuvant therapy was recommended to destroy any cancer cells that may be lurking throughout my body - in this case chemotherapy and hormone medications. Cancer cells are fast growing cells and the chemo drugs find these cells and kill them. Unfortunately (see there it is again) there are also other fast growing cells that are "good" cells in the body. Chemo does not distinguish between the "good" and "bad" cells and will also destroy both of them - such as hair cells and the cells that are found in your mouth. Fortunately (hey we like that word!) the "good" cells don't die off forever and will grow back while hopefully (!) the cancer cells will all be killed for good.

My oncologist asked me on Tuesday if I would be willing to participate in a clinical study of two different types of chemo drugs. TC has been used for awhile now and has been shown to be effective in case such as mine - low grade (II), early stage (II), estrogen/progesterone receptor positive, Her2 negative, etc. etc. etc. TAC is a newer drug that they are testing that has shown much promise. My medical oncologist pointed out that the treatments that are available today for me were tested by the ladies who have come before me. I initially thought that maybe one of the good things that might come out of this is that I could help those that come after me. (Never ending cycle it seems). But, he pointed out that the patients in the study are very regimented. For instance during chemo a shot is given afterwards to help keep the number of white blood cells up to healthy levels. This shot has to be given to a clinical study participant the day after chemo - while if I'm not in the study he would be able to give me the shot the same day of chemo. This would save me another half day missed from work and a three hour round trip drive. It was later pointed out to me that patients on TAC also have an increased risk of heart problems. It's been a tough decision (almost harder than the decision to have chemo) but I've decided not to participate in the trial study. My thanks go out to the ladies who have gone before me and I would love to help those coming after but I really need/enjoy my job and worry I will miss too much work as it is. Also, with the heart disease that runs in my family I worry about that side affect also. sigh.... nothing is easy about this.

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I'm getting to learn all sorts of new words. None of them are much fun - febrile neutropenia (fever and drop in white blood cells), alopecia (hair loss), stomatitis (inflammation of the mucous lining of any of the structures of the mouth), leukocytopenia (low white blood cell counts), skin toxicities (just like it sounds), invasive ductal carcinomas (what I had), dosimetrist (runs the radiation equipment and helps calculate dosages with the oncologists), and I won't even start listing all of the drugs out there. Not really enjoying the new words - none of them sound like fun.

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On another note - watched "Resident Evil: Apocalypse" today. Nothing like a good zombie movie to put things into perspective!