The Cancer Connection

My first visit to the oncology department wasn't that all that long ago in terms of time but if based on experience it was a lifetime ago.

As I sat in the waiting room waiting to be called in by my oncologist I had no idea just how much my life was about to change. It began with my reaction to my first view of the treatment rooms and the patients lined up in the recliners receiving their chemo treatments (see post).

The experience of my first chemo treatment will never leave my memory, nor will it fade. I looked very much like the obvious new girl with my full head of thick hair. Chemotherapy isn't all that was given or received in these treatment rooms. Equally as potent was the advice and comfort dispensed from so many of the chemo veterans. Then before I knew it, without even realizing it, I too had become one of those veterans, baldly, proudly, strongly and lovingly passing along hope to those who started the process after me and those that needed it.

Although I had never experienced radiation treatments before, I knew that they would in no way compare to chemotherapy and I did not in any way feel frightened as I began the process. I am experienced in cancer, in surviving, in doing what you have to just to get through, whether it be a single treatment or a lifetime.

There is a bond that is shared among cancer patients/survivors. I have heard it referred to as "a club that no one wants membership in" but I think that phrase diminishes the true value of that bond. I have experienced it as a kinship in which you are naturally connected to someone at the deepest levels of their being; their hope, their fears, their mortality.

I have met co-survivors being treated for a multitude of cancers ranging from cervical, tongue, leukemia and of course fellow breast cancer patients. But we all share two things in common - cancer and survival.

I can't adequately capture in words the connection you feel when talking to a fellow patient/survivor and although I truly wish there weren't so many of us I am so grateful to each and every one that I have had the honor of crossing paths with.

"How are you?" Hmm...How am I?

With the completion of my chemo and the start of my radiation there is a lot of reason for celebration and excitement. Heck - I've even threw myself a party! I am thankful for many things. But when it comes to answering the question that has been posed to me countless times over the past several weeks, "How are you?", I'm not quite sure what the right, honest or best answer is. I haven't found a consistent or a complete answer yet.

I appear to be doing ok, or even pretty well. I'm feeling much better than I did while I was undergoing chemo. I feel more like myself every week, hopefully it will soon reach the point where I can say every single day I feel an improvement. But that is how I feel physically from the treatments. How do I feel regarding the disease of cancer? That's an entirely different story.

I feel scared. My prognosis is good but in all honesty, the cure for cancer does not exist. I don't have many fears. I'm not sure if that was me pre-cancer but I am certain that is me post-cancer. I can say without a shadow of a doubt that my greatest fear is recurrence. I try not to dwell on it but I must admit, not a day passes that it doesn't cross my mind. I try to rely on the reassurance that my completed course of chemotherapy would surely have killed any remaining cancer cells but yet can't help but question that thought process while I am currently facing 6 and 1/2 weeks of required radiation.

Each time I stand up my legs and feet ache so much so that I move as if I am a pregnant 85 year old woman. When I lay in bed and night and try to sleep the pain in my joints, particularly my hands, fingers, feet and knees make it difficult to rest. The mornings are by far the worst. After tossing and turning all night and my body temperature fluctuating between the cool air conditioner and the immeasurable hot flashes and night sweats I am so stiff and ache so much that getting out of bed and placing my feet on the floor is a chore I dread. I can deal with that though. But with each of those moments a thought, a worry races through my mind, is this normal? Is this the effects of chemo? Or could this be something more?

I don't believe in living in fear, nor do I think that you should waste your moments worrying about things that have not and may not happen. The fear of my cancer returning though is a reality. My challenge will be to balance the fear with awareness and knowledge and find a sense of peace and comfort. I've learned so much about breast cancer and about myself on this journey and I have done well. I am sure that somehow, with this too I will do well.

Help!

"The radio is burning me and my eyebrashes have fallen out!"

Evidence that chemo brain is still in effect!

Word of the day - Bolus

Bolus, a flabby, rubbery material, is used in certain situations to “fool” the radiation beam so it will deposit the maximum dose on the skin surface instead of a fraction of an inch deeper, as it would otherwise. Therefore, a skin reaction is almost inevitable in this scenario. Bolus is usually incorporated into radiation therapy for skin cancers or when a surgical scar, such as a mastectomy scar, needs to receive a full dose of radiation therapy.

My newest fashion accessory that I get to wear during radiation treatments. I don't get t keep it with me all day though like I do with the tats and the sharpee x's and o's.

Radiation Preparation

The following information has been extracted from various locations on the internet:

Treatment Planning
Before radiation treatments begin, you will go through a treatment planning process called "simulation". This is necessary to confirm that the treatment machine will treat the exact area requiring the radiation (called the treatment port). A map of the area on your body where the radiation is to be delivered, referred to as the treatment field(s), is created. A machine called a simulator, which is designed to mimic the movements and settings on the actual treatment machine (called a linear accelerator) that will be used to administer the radiation therapy to you, is used.
Throughout the process, X-ray films will be taken. The entire simulation takes one to two hours, but the actual time may vary slightly. Since you will be lying on a hard table under the simulator for most of this time, you may experience some pain or discomfort. Should this occur, tell the technician. Keep in mind that the time necessary to deliver the actual radiation therapy treatments is only minutes, not nearly as long as the time required for the simulation.
CT Simulation
In some situations, a special computerized tomographic (CT) scanner will be used along with simulation to help plan some radiation therapy treatments. In these instances, the CT scanning process will be performed in the Radiation Oncology Department several days prior to the simulation. Information from the CT scan is used to precisely locate the treatment fields. The CT scanner is specially designed to work with the other equipment in the Department, and is not a replacement for other diagnostic scans you may have received.
Tattoos
At the end of the simulation visit, it is necessary to put marks on you to outline the treatment field(s). These marks are in the form of very small tattoos, which are dots the size of a pinpoint or freckle, made using India ink. The process of tattooing causes some temporary discomfort. Generally, between 4 and 8 tattoo marks are placed, but sometimes more or less are necessary. In some treatment plans, a second set of tattoos may be necessary. While the tattoos are permanent, because of their very small size, they are not very noticeable. By using the tattoos, it will be possible for you to bathe or shower on a daily basis without worrying about removing these important marks that show where the radiation treatments are to be delivered. Also, if any additional radiation therapy is needed in the future, the tattoos serve as a permanent record of previous treatments. In very rare instances, tattoos will not be used.
Technical Planning Process
After simulation, details from the procedure are forwarded to medical radiation dosimetrists and medical physicists. These professionals perform highly technical calculations that will be used to set the treatment machine (linear accelerator).
Large alloy blocks may be placed inside the treatment machine to limit the amount of radiation delivered to your normal tissue in the treatment field. These blocks help decrease the development and/or severity of side effects caused by the treatments. Blocks are customized for each patient, in order to provide the best protection.
Set-Up
Several days after the simulation and after all calculations have been performed and custom blocks made, your treatment can begin.
Treatment machines (linear accelerators) resemble the simulator but are larger. You will be placed on the treatment table in the same position as you were on the simulator. Proper positioning usually takes 10 to 15 minutes. Once in place on the treatment table, a set of X-ray films will be taken. These films will be matched with the simulation films to ensure that the treatment is going to be delivered the same way as it was simulated. Occasionally, the match is not optimal. In these cases, adjustments will be made and will be checked by your attending physician. In rare cases, more adjustments are required and treatment may need to be postponed. Once the films and positioning are confirmed, a treatment will be delivered.
The actual administration of the radiation treatment usually takes only about 5 to 10 minutes. Factors that affect the total length of the treatment include the complexity of your treatment, the particular machine on which you are being treated and how quickly you can be positioned properly for treatment. On average, most patients spend a total of 20 to 30 minutes in the Department per day receiving their treatment.
On-Treatment Examinations
Once a week, repeat X-ray films will be taken to re-confirm proper positioning. These films will also be performed in most cases where there is a change in your treatment field or treatment plan. The X-rays taken during the course of radiation treatment are not used to help measure your progress or response to the radiation. Rather, they are only used to ensure that the position and treatment arrangement is appropriate.
You will also be examined at least once a week by your attending physician and resident. The examination day is generally on Thursday, just before or after your treatment is administered. These examinations are important because they give your physician the opportunity to evaluate your physical condition, answer any questions that you may have, and plan and coordinate future treatments.

Radiation 822 (more 411 than you ever wanted!)

How Radiation Works
Radiation therapy — also called radiotherapy — is a highly targeted, highly effective local treatment recommended in conjunction with a lumpectomy to destroy cancer cells in the breast that may stick around after surgery. Radiation therapy may be externally or internally delivered, both on an outpatient basis. The most common radiation treatment for breast cancer is external radiation therapy. It uses a large machine to direct a beam of radiation at the cancer site from outside the body and focuses high-energy rays to the entire breast from a machine called a linear accelerator to damage cancer cells. These high-energy beams, which are invisible to the human eye, damage a cell’s DNA, the material that cells use to divide. After the first course of treatment, a “boost” dose of radiation is given in the same area of the breast where the tumor was removed. The most common type is given externally (as in the first course), and may last from 1 to 2 weeks.

Over time, the radiation damages cells that are in the path of its beam — normal cells as well as cancer cells. But radiation affects cancer cells more than normal cells. Cancer cells are very busy growing and multiplying — 2 activities that can be slowed or stopped by radiation damage. And because cancer cells are less organized than healthy cells, it's harder for them to repair the damage done by radiation. So cancer cells are more easily destroyed by radiation, while healthy, normal cells are better able to repair themselves and survive the treatment.
A typical course of treatment is 5 days a week for 5 to 7 weeks. The treatment takes a few minutes each day.

Why Radiation is Necessary
Radiation is an important and often necessary form of anti-cancer therapy because it is able to reduce the risk of recurrence after surgery. Although it's quite possible that all the cancer was removed through surgery, breast cancer surgery cannot guarantee that every last cancer cell has been removed from your body. Individual cancer cells are too small to be felt or seen during surgery or detected by testing. Any cells that remain after surgery can grow and eventually form a new lump or show up as an abnormality on a test such as a mammogram.

Research has shown that people who are treated with radiation after lumpectomy are more likely to live longer, and remain cancer-free longer, than those who don't get radiation. In one large study, women who didn't get radiation after lumpectomy were shown to have a 60% greater risk of the cancer coming back in the same breast. Other research has shown that even women with very small cancers (1 centimeter or smaller) benefit from radiation after lumpectomy.

Radiation Oncology Team
Women having radiation therapy do not go through it alone. They have a whole team of people working with them to make sure they get the best treatment. This team may include:

• a radiation oncologist — to plan the treatment using radiation therapy;
• a radiation physicist — to make sure the machine delivers the right amount of radiation;
• a radiation therapist — to run the radiation therapy machine;
• a dosimetrist — to figure out how much radiation and how many treatments are needed;
• a radiation therapy nurse — to help manage side effects and provide information about the treatment;
• other team members may include a dietitian, physical therapist or social worker.

Hip-Hip-Hooray!!!

It's Sunday night, 1 day shy of 3 weeks after my last chemo treatment. If I were facing chemo yet again tomorrow I would have already had the first of 2 required doses of steroids in preparation for tomorrow. Instead, I'm preparing for what I hope to be a restful night's sleep so that I can go back to work tomorrow!!! This may be my favorite blog posting yet! :0)

I am a Survivor AND a Warrior

I am a SURVIVOR, but I am more than that. I am a WARRIOR. My battle with breast cancer isn't over, nor will it ever be. Because this cancer has invaded my body once I now have to remain ever vigilant, even hyper-vigilant of it's recurrence or the invasion of a new cancer.

I'll be quite honest, my fear of recurrence is FAR greater than any fears I had with my initial breast cancer diagnosis. I always knew that I would be ok. I will in many ways always remain touched by this dreaded disease (scars, medications, evaluations) and I have accepted that. I just wish there were some magical way of feeling, of knowing, that this dreaded disease will never touch me again.

May this be the only way you have to learn about chemo...

"During chemo, you're more tired than you've ever been.  It's like a cloud passing over the sun, and suddenly you're out.  You don't know how you'll answer the door when your groceries are delivered.  But you also find that you're stronger than you've ever been.  You're clear.  Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception.  Previously, it has taken you weeks, months, or years to discover the meaning of an experience.  Now it's instantaneous."   ~Melissa Bank

My chemo is done! I am so thankful and so excited. Keeping up with my chemo schedule and even being able to somewhat predict what I would be experiencing and when throughout the cycles almost became 'old hat'.
Now that I am quickly approaching the next episode in this b/c saga, I'd like to share a few things with you.

CHEMO SUCKED! CANCER SUCKS!!

Seriously, chemo was a bit more difficult than I admitted while I was going through it. I also realized very soon after starting it that I wasn't quite the "super girl" that I thought I would be. I truly believed that while undergoing chemo I would be able to maintain my quality of life as it had been.

Chemo was bearable, but it wasn't easy. I suffered physically, sometimes so much so that I couldn't hide it if I tried. Bust most times I tried my best to somewhat hide what I was experiencing. I did so for several reasons. First and foremost, I didn't want those around me to suffer or worry any more than they already were. Sharing my physical pain wasn't going to take any of it away from me, but it would surely would have added to their emotional pain. Of course there were lots of emotional and psychological aspects of it to deal with also. Again, for the most part I chose not to share much of that. I believe now in retrospect that I chose not to in order to maintain my personal strength and positive attitude. Chemo is so big and bad and powerful that you can only take it in small doses - in more ways than just the medical administration of it. Had I truly thought about what I was going through or had I been quite candid about how it made me feel I don't know that I could have sustained my strength or my spirit.

Once I completed my last cycle my mind began to overflow with thoughts. I literally had insomnia towards the end of week 1, cycle 4. I wrote incessantly and began at least 2 dozen blog postings, several which I posted on the 10th of July and several still sit here on my desktop waiting to be finished or posted. I found that I wanted to talk about and share everything that I had experienced over the past few months. I thought that it was because I was simply excited that my chemo was over and that I had a burst of energy, which of course to some extent was true. I realize more than anything though that I share now because I can. I can finally let my defenses down and am able to safe rather than vulnerable from the negative affects of the chemo. I couldn't allow myself to admit how bad it was while I was going through it. Admitting it made it more real and may have caused me to let it have power over over me, rather than me over it.

Anyway, I'm done with it. Now I'm looking forward to it be done with me and ridding my body of all the remaining side affects. I am grateful though for what I have learned through this process and hope to always keep those lessons close to my heart.

I Wanted to Write about Chemo Brain, But I Kept Forgetting

Funny title, but no kidding about the chemo brain (mild cognitive impairment). It really is the oddest thing to be in the middle of a conversation and all of a sudden you find that you are desperately and unsuccesfully searching for the next word which should be rolling off your tongue. Instead the conversation goes something like this, "you know, the stuff that you put on the thing with the bristles to clean your teeth (toothpaste). Up to this point it has actually been quite humorous. I imagine at some point it may become frustrating, especially after just learning that it can actually last for 1 - 2 years after completion of chemo!

Research shows that about 20-30 percent of people undergoing chemo therapy will experience mild cognitive impairment — word finding, memory, multitasking, learning and processing speed. Doctors don't know what causes the cognitive changes associated with chemotherapy, nor is it clear how often it happens or what may trigger it. It was previously thought that chemotherapy drugs were blocked from your brain by the blood-brain barrier, which separates chemicals that should be in your brain from those that shouldn't. Researchers now suspect some chemotherapy drugs may be able to slip past the barrier causing this chemo fog.

I'm no doctor, but from this chemo patients perspective, it's a no brainer!!!

Celebrate Life Party!!!

What: Celebrate Life!
When: August 2nd
Where: Our House
Who: Everyone!!! Friends, Family, Friends & their family :0)
Why: Life is Good - Let’s celebrate it !
(AKA chemo is over and socail life can begin again !!!)
Time(s): 5:00 - Open House/BBQ
This is a time to come visit and not worry about what to do with the kids -
bring them with you. I’ve missed seeing lots of my little friends too!
8:00 - House transforms into Margaritaville . Our infamous machines
will be serving “that frozen concoction” that helps us hang on ;0)
We hope you can come join us. We’ve missed everyone so much. Come for one or both parts of the party. Hang in for entire celebration, no matter, please come by and say hello.

RSVP via email or phone though so that we can be sure to have plenty of food and drink!

The (Not So) Great Communicator

Yes, I know my voice mail is often full and I realize that I have not been very good at returning calls, especially in a timely manner. (Mind you, this wasn't necessarily one of my most endearing qualities BEFORE the cancer!) ;0) I haven't kept up with my blog as I had envisioned or as some of you have wished. Although grateful for the invites, I have had to pass up far too many opportunities to get out and see friends and family. I have felt as if my social life has been put on hold, and (as Will may put it) my network has been temporarily disrupted due to technical difficulties (although I'm sure he would say it much more technically!)

I have not cooked any wonderful dinners in far too long but have on rare occasions microwaved a few not so wonderful ones. Take my wise advice and DO NOT try microwave Hamburger Helper. I should have suspected something when it was so simple that the meat was already included in the box . I get chills just remembering it. YUCK!!! Martha and Betty haven't had any competition from me in so long rumor has it they think it's safe to begin to rest comfortably. Between you and I, I too am beginning to wonder if I will still be able to give them a run for their reputation. (Well, there was the time no too long ago I did manage to bake the "Chocolate Chunk, Butterscotch, Toffee Chip, Marshmallow Disappearing Brownies for my treatment nurses and my Oncology Ward nurses (and me too) but hey - they have literally been my life savers! Although my oncologist did repectfully decline indulging due to the combination of his waistline and an upcoming beach trip.

Thank God for visiting "Mom(s)"! Had it not been for them I would be wearing extremely dirty clothes by now, if any at all due to the amount of laundry I have had to neglect. I have yet to figure out how pajamas can pile up so quickly. Furthermore, our carpet would no longer need to be replaced because, again, had it not been for mom's housekeeping, it would most certainly appear to have been replaced by the ever trendy "yellow lab-long hair black house cat" combination.

The dad's on the other hand proved to be just that, very "handy". We've had tons of house project done thanks to them.

I have forgotten how to type and am convinced of that more so each time I actually do attempt to blog. I hope that my co-workes continue to be as patient with me upon my return as they have been in my absence. I am truly blessed to work with some amazing people and although I can't give it it to them, I am sure they deserve a vacation for having worked so doubly diligently while I have been out.

Quite honestly, over the past couple of months I have seen my chemo nurses more than any of my friends and I see my oncologist almost as often as I see Will and our families.
I have missed so many things. OK, so maybe I don't missing having bad hair days but that's a posting in itself!

I began my blog by saying that this cancer is but a part of me and that I did not want it to consume me and although the cancer (thank GOD) hasn't, the treatment in a sense has in so many ways. My list of what has changed, how I've changed, what I miss, and basically what sucks could go on and on but I pray that I have finally reached the point in my treatment where I can start erasing the list rather than adding to it.

I have had so much to be thankful for through my treatment, which I'm sure I will never forget. Other things, such as the neutropenia, the hives, the rapid heart rate, and yes, EVEN the hair loss, and so much more are what I hope to soon be quickly fading memories.

Anyway, for not having kept in touch more often, communicated better, posted more, please understand that it wasn't personal. It wasn't that I didn't want to hear your well wishes, your voices or your laughter. It's not that I didn't want to see your smiling face and receive your hugs in person. Although I ask for your understanding, truly, unless you have physically walked this journey with me, it is difficult to fathom just how often I was either visiting either the doctor, the treatment nurses, and even the ER. Apparently the most popular form of treament for chemo related illnesses or complications is prescription upon prescription to make you sleepy.

I very appreciate all the prayers, well wishes and kind acts so please understand what you can from I have shared with you and forgive me for the lack of communication......

It's just that I've been battling this cancer as hard as I can with all that I am and I must admit, it has worn me out.

Name That Caption Contest

What was I thinking???

Motivating Cancer Quotes

"People should be afraid of the cancer, not the mammogram." ~ Nancy Reagan

"An individual doesn’t get cancer, a family does." ~ Terry Tempest Williams

"Cancer is not for sissies." ~ Suzanne Somers

"Cancer got me over unimportant fears, like getting old." ~ Olivia Newton-John

"As a cancer survivor, I am very aware of how many wasted minutes I don't have. The surest way to waste what is left of your life is to worry about what might happen or what might have been. "~ Shelley Hamlin

"Heroes take journeys, confront dragons, and discover the treasure of their true selves." ~ Carol Pearson

"We "need" cancer because, by the very fact of its incurability, it makes all other diseases, however virulent, not cancer. " ~Gilbert Adair, "Under the Sign of Cancer," Myths and Memories, 1986


The following quotes are from Lance Armstrong ~

"To be afraid is a priceless education."

"Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight."

"Chemotherapy is war."

"If you ever get a second chance in life for something, you've got to go all the way."

"So if there is a purpose to the suffering that is cancer, I think it must be this: it’s meant to improve us."

My Best Treatment

WILL.

Simply, honestly and completely put, Will.

His humor.
His positive attitude.
His support.
His caretaking.
And last but certainly by immeasurable amount, not least, his patience with me.