Taking a Trip: Togetherness for young, Late Stage Cancer Families

On Sunday, I saw the CBS Sunday Morning Show which highlighted the Jack and Jill Foundation for Late Stage Cancer.  This foundation offers trips for young families who have children between the ages of 3 and 18, have late stage limited life expectancy cancer, have a life expectancy of at least 2 months and have not participated in any adult dream, wish or similar program.  The applications must be made by their oncologists.

This is a great program, although the amount of trips and locations are limited (donations are always welcome to help make this come through).  When I was first diagnosed with Stage IV (late stage) cancer, my daughter was 4 1/2 years old.  The second time, she was 17.  Literally, my daughter doesn't remember a mother who wasn't either fighting for her life, or limited because of damage to my pelvis.  My hiking with her wasn't as long as it used to be because the radiation tightened the muscles in the right hip and it was often painful.  I have talked to her about her childhood and she remembers me sometimes not going on hikes and trips, but sending her with her father as I couldn't do the physical part of the trips.

With the vacations together through the Jack and Jill Program, it creates times and memories which are pleasant and not always with the angel of death hovering over all.  Cancer takes a toll on the whole family.  In all my married life, we only took one vacation which was NOT to see family.  Funds are often not there for "fun" trips because of all the medications and co-pays we must pay.

I wish I had known about this when my daughter was still under 18.  But, it is there for others.

Take a look at the program.  You can find out more here.

Livers and Liver Biopsies

Tuesday, I had a biopsy of my liver.  When I finally got to see my oncologist and find out what "it's complicated" meant, it turned out that there was radioactive tracer uptake in three lesions in my liver which showed on my P.E.T. scan.

You see, when you have a P.E.T. (Positron Emission Tomography), you are injected with radioactive isotopes of glucose (called a radiotracer).  To prepare for the test, you must refrain from physical activity (even walking the dog) the day before and fast prior to showing up.  I think drinking lots of water the day before helps, at least it helps with your blood vessels being plump and easily accessed.  You receive the shot of the radiotracer, then rest for an hour.  Areas which metabolize, or consumer the sugar, more quickly than others will take up more of the radioactive material.  When you are put through a cyclotron, the clyclotron is able to make a 3-D computerized image of what is in your body and the areas which are metabolizing the radioactivity will show up hotter.  Since cancer cells are usually sucking up as much energy (sugar) as possible, those spots are hotter--they are metabolizing at a different rate so the diagnostic imaging specialists can see what is going on.  P.E.T. scans are used for other diseases such as Alzheimer's, Epilepsy and heart disease.

P.E.T. scans are great for showing early signs of cancer in the brain, lungs, bone, as well as indicating whether or not chemotherapy is effective.  Usually, it is used along with other tests such as MRIs to get a better idea of what is going on.

I had a P.E.T. scan a week and a half ago.  My oncologist called and said that the results were "complicated."  When I went to see him, he said that there was uptake in my liver, but that he didn't trust it.  Why? The P.E.T. indicated that there was no further uptake in my bone mets which had been diagnosed earlier--they were stable.  My tumor markers were still moving down which indicated that there wasn't growth in the tumor but that the cancer was being killed and my liver function was normal.

It was possible that it was cancer and that the tumor markers we were following were no longer effective in predicting my status because the cancer may have changed its characteristics and was producing different proteins that we weren't following.  The only way to know for sure what was going on was to have a liver biopsy .  In a liver biopsy, you are given an i.v. with saline solution which also contained some pain killers and light sedatives.  You would then be given a C.T. with contrast while a needle would go in and take tissue from the suspected areas. For two weeks prior to the biopsy, you should refrain from taking Ibuprofen as it has blood thinning capabilities which can cause  you to bleed when the biopsy is done.  Novocaine or another numbing agent was injected at a couple of  levels, the muscle on the exterior, and the "sack" which is on the outside of the liver which has nerve endings.  The liver itself doesn't have any nerve endings, so once you get past those other areas, you won't feel pain.

In my case, two of the lesions were at the back and one was in the center front, just below the sternum and to one side.  Since the easier one to get to was in front, a needle was inserted, I felt some pricks--the shot of the numbing agent...much like it used to feel when you got Novocaine prior to filling a cavity when I was a kid (they seem to numb the surface now before you get the shot so it doesn't hurt so much).  While it isn't pleasant, it isn't horrific either and the pricks are over quickly.  I was correct in thinking it would be as uncomfortable as when they have to dig to find my veins, but bearable.  Then, hollow needles are inserted and tissue cores of the area are taken to be analyzed.

Before doing the needle biopsy, the Radiologist took a look at the CT scan to make sure that it was clear and that he could see where he was going.   I was talking to the nurse and the technician....the nurse said "Boy, they're taking a long time.  What are they doing back there."  The technician looked back "hmm....they're hovered over the computer looking at the image."  I laughed...and told them it was because they couldn't find anything.

You see, the liver metabolizes glucose...and a P.E.T. is often a poor diagnostic tool for livers as it has a lot of  background "noise" --in other words, uptake of the radiation where there isn't any cancer.  When the radiologist returned, he had a perplexed look on his face.  I said, "You couldn't find it, could you?"  He said no, and I laughed and told him I thought that was going to be the case.  He said I could either go home, or he could take a sample from the area as indicated on the P.E.T. scan, but that he would be going blind.  I told him to go ahead because if there were areas of cancer in that area, then we had better do as best we could to determine whether or not it was or wasn't there....He said he would take the samples and analyze them quickly to see if he could see cancer cells...that it would tell us if we needed to look more.  This isn't the final say as a more thorough check would be made of the liver samples.  He only saw liver cells in the quick analysis.

After the procedure, I was to lay quietly, not moving or getting up in order to prevent the biopsy sites from bleeding for two hours. The nurse said that if I had had it on my side, that I should be laying on my side to add pressure, but since it was right in the middle and my port was accessed (thus being on my stomach would prevent the flow of the saline into my port in my chest), I just stayed on my back.

When I came home, I was pretty tired, primarily because I had accidentally read longer than I intended when I went to bed, and I had to be up before 5:00 a. m. to make it to the appointment.  In addition, I don't clear pain killers and sedatives from my system very well.  I wasn't to lift, do anything strenuous, avoid taking Ibuprofen for about a week.  I wasn't to drive the day I had the procedure either.  So...I slept for a couple of hours at  home, went to a quilting gathering with some friends picking me up...came home and went to bed.

There really isn't much to it....however, it does sound scary and most of my friends cringed when I told them I had to have a liver biopsy.  Of course, when you think liver biopsy, you think surgery where you actually have to open the chest wall. In reality, this was much less to worry about than you would think.  I arrived at the hospital at 6:00 a.m, had the procedure and left the hospital at about 12:30 p.m.

So...you're wondering why the lilies at top? Well, it was the only photo I could think of that I had which might illustrate this without grossing anyone out....and of course...I'm sure you are not too lily-livered to have a biopsy should you need one.

Disconnects

For quite a while, I have been feeling like the medical field seems to have a disconnect with their patients.  Somehow, it seems like the patients are driving the bus....but not really.  Since moving to Ohio, I have had a hard time getting medical people to listen to me or to actually treat me with the respect that they should have for themselves.

Take, for instance, what has been happening with me since last Friday.  On Wednesday of last week I had a P.E.T. scan, the first one I have had since April....and then only because I kept on questioning my oncologist how did he know that the drugs were really working and what if I had two different things going on? Why, for instance, couldn't I have two different types of cancer happening, breast cancer which was responsive to the drugs and another which had mutated and become resistant?  I was curious as I have been having pain in the Sacro-iliac joint for quite some time.  It feels and acts very much like my hip did before the acetabulum broke and told us what was really going on...but my doctor kept on dismissing it as being arthritis...or inflammation of some sort.

So, on Friday, while I was at the ophthamologists getting my eyes checked because I was diagnosed by the optometrist as having an epi-retinal membrane possibly caused by the chemo...my oncologist called and left a message on my answering machine at home.  He called at 5:15 pm. and said that he got the results back from the PET scan and that they were "complicated" and that he would call me back on Monday to talk to me about it. I knew that he wasn't in the office on Monday, or at least wasn't seeing patients and the last 5 times I have called the office and left a message on the medical assistant's voice mail, I haven't heard back.  No one bothers to return my calls.  So, I waited.  He never called.  He didn't call me today either.  I will see him tomorrow at 2:00 pm.  I am pretty sure I know what "complicated" means.  The last time he told me the PET was complicated, I had the progression in my pelvis.  So, I expect that I have more mets.  I suspect, given the amount of coughing I have been doing that it might be in my lungs, or at least more in my ribs.  I don't know.  I'm not really winged out about this as I know I can't do anything about it whatever it is...but I am terribly disappointed in my doctor and his office. If I am told that I am going to get a return call, then I should get a return call.  If he wasn't going to call me, or if he thought it could wait until my appointment on Wednesday, then don't bother to leave a message at all.  Hang up the phone.  Instead, I've been left to stew from Friday afternoon, until Wednesday.

If I were somewhere else, and I were talking to someone who was telling me this story, I would suggest finding a new oncologist.  However, I like this guy personally, he has a good track record with my husband's cousin and I don't know who else I would go to.  After all, I had started out at the James Cancer Center in Dublin Ohio when I first came down here.  My first appointment, I waited in a room for more than three hours....and over heard the nurses talking in the hallway discussing where I might be...(perhaps in the room they put me in initially, especially since I was still wearing a drape????).  The second time, I had a series of tests at the OSU hospital and I carried all of my mammograms, bone scans and other records (as at this time they had not been digitized) dating from 1999 until 2005.  They were late at the hospital and they took my files from me at the registration desk.  When I went in, I told the tech to get my films from the desk.  When I finally left...again after being almost two hours late, I flew to my appointment back in Dublin.  I got there 5 minutes before I was to be seen.  I asked if he was running late as I knew what my previous experience was,  and I hadn't eaten since 6:00 pm the night before and had driven myself the hour and a half from Troy. Oh no, he was on time.  My appointment was for 1:30 pm.  I finally saw him at 6:00 pm.  I then drove home.  Hungry and tired.  Two weeks later, I discovered that OSU had lost all my films.  Never to be seen again.  No, they were not returned to the hospital in Connecticut where they originated.

Needless to say, I switched doctors and even though when I told the guy at the James I wouldn't be seeing him, and why, he said "Well, if you have a recurrence in the future, you really need to give me a call because I am the best in the field for stage IV breast cancer." I'm sorry, but I can't entertain the thought of going back to this guy.

So I'm stuck.

I'm not as stuck as someone on the Inspire forum I just met today.  She lives in New England and is on Medicaid because her husband left her and her son.  She can't work because of health issues.  She has had extreme pain in her breast since May, but a mammogram shows nothing, nor does an MRI.  She thinks it might be inflammatory breast cancer because of how it is presenting.  She is now having bone pain, swelling in her legs, and the skin on her breast is orange peeling....all symptoms of advanced IBC.  However, when she went to the one surgeon who takes Medicaid in her area, she was told "It can't be IBC, you'd be dead by now."  She finally agreed that maybe she would do a single punch biopsy in a small area, but that would be the only shot she had.  Meanwhile, this person is still in pain and no one is listening to her.

Why do I feel like we have to paste $1,000 bills to our chests and stick burning sparklers in our hair to make people listen? Don't we deserve more respect than this?  Just maybe, just maybe we actually know our bodies and can tell when there is something wrong.  Listen up, docs, we are human, and we need people to understand and walk in our shoes.  It seems to me that there is a huge disconnect between healthcare and the patients....and something is likely to short circuit and burn the barn down.  

The Bucket List

Ever since the movie "The Bucket List" came out, it seems that the concept of having a list of things to do before you die is quite popular. In fact, it has become sort of a parlor game for milestone birthdays.

This week, when I was at the eye doctor's, I was chatting with a man and his wife while waiting for my eyes to dilate.  He said his wife recently had surgery for breast cancer and I said that I too had had breast cancer several times and eventually I told him that I was stage IV.  "Oh," he said "have you started on your bucket list?"  Uh...no.  Frankly, I'm too busy trying to stay alive.

And I'm too busy trying to get things done and taken care of so that when I do die, my family isn't burdened with stuff.  Literally and figuratively.  Besides, a lot of "bucket list" fodder either costs too much money, or are reliant on time.  I mean, my bucket list includes seeing my daughter graduate from college and settled in her own life.  Yes, even a grandchild would be cool...but none of these things do I have control over.

Yes, I would like to travel...to go back to Europe as I have only been to England and Scotland.  Ireland would be nice and seeing Scandinavia and Spain would be very neat indeed.  Friends who have gone have sworn that I MUST go see Florence and Venice....But, all of this takes time and money both of which are in short supply.

It's funny....why is it now imperative that people who are staring death in the face have a bucket list? and how in heaven's name are those of us who are fighting supposed to be able to do those things? How absurd!

In addition, it can be hurtful.  Take, for instance, what happened to a friend of mine.  She has been fighting ovarian cancer for several years, and has had quite a bit of surgery because of it.  She too is stage IV and was told that probably it would be back within a matter of a couple of years.  She recently went to a friend's 60th birthday party.  At the party, the honoree said "Ok, lets everyone make out our bucket list and read them to each other."  My friend was extremely uncomfortable with this and took the honoree aside and indicated her discomfort.  Then she went out and talked to another friend on the phone as she struggled to contain her feelings.  When she went back in, she was asked once again to make her bucket list and tell everyone.  My friend decided that this was not a good place for her to be at that time and she left.

Obviously, no one took into consideration what this might mean for my friend and it was all together too obvious that it WAS all about the honoree...which I suppose it was...but it was at a great cost to my friend and it was entirely unnecessary. I doubt that prior to the advent of this movie that many people would have this as a fun thing to do at a birthday party.

We all have hopes and dreams and for those of us fighting cancer, it is all too often that we realize that we have no control over whether or not we can fulfill them.  Then again, some dreams are best left as dreams, and unfulfilled 

My bucket list? Well..it is far too much like the smashed bucket hanging in the old barn at my parent's place. I can't figure out how it got there, and I don't know how long it will be there....but it hangs in the balance...

Denial or Hedging my bets?

I bought some fabric this weekend.  Mind you, I have tons of fabric....but I got a little more to work on a traditional quilt for my niece Beth.  Sometimes I wonder if I am a little silly....after all, I didn't really PROMISE her a quilt.  This summer when I visited her in Deer Lodge, I said "about your quilt" meaning the top I made for people to sign at their wedding last October.  She about pinged off the wall "A QUILT! You're making us a QUILT?"  Ooops.... it seems that she and her new hubby are short on bedding...and she is a sweet thing....and I adore both of my nieces.  But I wonder, should I really be spending the time to make her a quilt? Should I spend the time I have to make a quilted wall hanging from fabric my friend Stephanie bought to make her son but died before she could accomplish it?

I mean really, how much time do I have left?

And then I think back...yes, I have been battling this recurrence for far too long this time and I haven't been able to push it back yet.  But...if I stopped doing things when I was diagnosed with stage IV cancer, then I would have wasted a lot of time.  After all, I was living with no evidence of disease from late 1998 until 2010.  Just think...if I kept on living then thinking I would be dead soon....and not taking on projects and tasks...then, well, I would have missed out on a whole lot.

So....I keep forging ahead, knowing that perhaps I won't be able to pull out of this one this time.....but knowing that I will not let it stop me until I can no longer go on.

Nadirs

Nadirs...Whenever I hear the word, I think of the "spell" which Angela Lansbury cants in "Bedknobs and Broomsticks"...only because she also uses the words apogee and perigee--both astronomical terms.  Technically, a nadir is the low point, and directly opposite the Zenith..and is often thought of in reference to the positions of the sun and the moon.     In more common parlance, it often refers to the low point of someone's career or spirits.

In chemotherapy, however, it refers to the low point of blood counts particular to the chemotherapy used.  With Xeloda, the nadir is found on days 10 - 14 of the cycle...For many drugs, the nadir lasts between 7 and 10 days, during which time the patient is more susceptible to infection and illness.  That's when fatigue usually hits the worse.  It is annoying that on the Xeloda (Capecitabine) list, the duration of the nadir is listed as "N/A"  which would be either not available" or "not applicable" I'm not sure which.  This is when my hands start hurting the most and my feet start splitting if they are going to split. The sad part about Xeloda is that I don't really recover from each bout before I have to start the next.

Anyway....make sure that you are careful about your nadirs...take special precaution so that you don't catch something when your counts are low....and always make sure that Nadirs don't also refer to your spirits..or at least I hope that your spirits remain good while you are getting your treatment.

Oh yes...the photo? Well, it is the foot prints of a raccoon which has taken up residence in my backyard and caused a nadir of my spirits as the danged thing ravages my goldfish pond and has made snacks out of most of my beautiful pets.

Lotions for the Cancer Patient Hand Foot Syndrome Lindi Skin

Back in August, when I was whining about how bad my feet and hands were from the Hand-Foot Syndrome, someone on the Inspire.com website gave Lindi Skin my name and email addy.  One of the employees contacted me and sent me a bottle of their Soothing Balm which was developed especially for cancer patients.

I have to say, their website is full of information on different skin issues, some related to cancer (radiation burns, hand/foot syndrome) and some other issues.  Links send you to information areas which are NOT trying to sell you anything, but give you information on what you can do to alleviate the problem.

The Lindi Soothing Balm was the product which they sent me to see if it would help my Hand-foot syndrome.  The soothing balm is light, and not greasy or oily.  I can honestly say that I can put it on when I'm in the bathroom and if I forget to open the door before I put it on....that's ok as I'm still able to turn the knob....not the case with some of the other stuff I've tried...(yes...pretty humiliating when you have to call for your husband to release you from the bathroom!).  It doesn't have any fragrance added, it is free of parabens (the stuff which mimics estrogen and is basically not good for us), and has not been tested on animals.

It seems to work well for my day-time use....I am afraid that my skin reactions to Xeloda are pretty extreme, and I need something heavier on my feet for night use.  Even on the half dose, I have very tender fingertips and toe-tips (is that a word??), cracking feet, and severe redness.  The burning sensation doesn't seem to go away...and it keeps on getting worse.  I am sure, however, that for most people this would do really well, and I like it much better than Udderly Smooth (which contains parabens).  It is made with avocado, olive oil, glycerin  shea butter and a bunch of other stuff.  It does  help with the dryness, but the tenderness is still there, I assume it is just because of the severity of the reaction which I am lucky enough to have.

They have a product which they suggested I try called the Cooler Roll. Unfortunately, the facility which makes the Cooler Roll was affected by Hurricane Sandy and it is temporarily out of stock.

They have an area which you can sign up for emails which gives you a discount for your first order.  In addition, I have received several special promotions since signing up, so it is worth doing that even if you aren't sure you're ready to order anything. I also noticed that they have a money back guarantee, so if you want to try it, but are not sure it is going to do anything for you, you do have the opportunity to return it if you're not happy.

One last thing...if you use the following link, then they will give 10% of the sale to the not-for-profit of my choice...and I am going to designate the Metavivor Research & Support.  You can find them here.

Here's the link you need to use in order to get the 10% credited to Metavivor:

http://www.lindiskin.com/?a_aid=lisaq

Something to embrace

Judy Coates Perez, an extremely talented quilter recently posted this on her facebook page and gave me permission to post it here.

As dark as some days may seem, as cloudy and scary as the future may be, concentrate on the good.  Surely, if you think on the positive, you can think of one thing to be grateful for and if you look deeply enough in your catalog of experiences, I am sure you can find something to think of which brought you joy, made you laugh....or even just brings a smile.

So...Be happy so long as you have breath within you.

Thanks, Judy...for your great photo and your willingness to share.

It's almost over...and yet it has only just begun

Thank goodness....October is almost over.  With it's barrage of pink...buy this....buy that...and we'll help cure cancer.  I know...I've talked about how jaded I've become.  I feel that after more than 20 years, we should be farther along with this....and while the trials for breast cancer drugs are done on advanced cancer cases....very few trials are actually looking at what can defeat cancer which has metastasized.

This time of year...as well as around mother's day, all the television celebrities come out and tell their stories....this year was no different.  I watched Hoda Kotb talk about being saved....and I wrote on the Today Show with Kathy Lee and Hoda Kotb's facebook page asking her to not forget us....the MBC'ers.  I also pointed out that many of those stage I and stage 0 cancer survivors would find that it had returned....many as stage IV, many after that magical date of five years out.  I asked that she would look at us and allow us to have a voice.
   

I doubt it will make a difference.  I doubt many people saw and thought about what I said.

I probably shouldn't have written about this....I know that it makes many survivors and their families sad.  We don't want to remember the rather dire statistics.  For a little while...it would be nice to live in denial.  But, we are surrounded with pink....Just like my daughter and I were in this photo....Fortunately, soon, after the stuff has landed in the clearance bins...we may just not have to have it in our faces anymore.

In the meantime, run over to the Metastatic Breast Cancer site....they are extending their campaign until November 30....for ever click to the website, for every share and tweet, $1 will be donated to MBC. Yah.  Now that's the way to do it!  The Elephant in the Pink Metastatic Breast Cancer

The Possible Impossible

Not too long ago, I got an email from Anne Copeland and as a tag line on the bottom of her email, Annie wrote this:

"The impossible could not have happened, therefore the impossible must be possible in spite of appearances." - Agatha Christie


Wow.  I couldn't agree more.  Anne Copeland is a pretty interesting person and one we all could take a leaf from.  Anne started Fiberarts Connection in 2003 for physically challenged and emerging artists.  In 2005, the organization achieved 501(c)3 status.  Annie started Fiberarts Connection because of her brother who developed a brain tumor after service in Vietnam.  Anne herself is physically challenged having among other things, neuropathy in her hands and feet.  I remember this as I do too.

So....take Anne as your inspiration and do something impossible....because it is by definition, possible...it just might be a little challenge.   You can find more about Fiberarts Connection here. 

Coming unhinged

Earlier this week, I got an email from someone who had just been diagnosed with metastatic Breast cancer.  She was asking me what I did, how I handled it.  

I think I have actually posted on this before, but it is worth repeating here.  Although I responded to her about finding out about MBC, it could just as easily be something else...or even the stress and anxiety we feel when we get ready for a scan.  Here's what I told her:

Take a deep breath.  I cried.  a lot.  I had a 4 year old daughter for heaven sakes.  I was terrified....then I decided that most people who got this news were probably not as healthy as I was , and most were not as young.....and if I were a betting person, I would bet on me.  10% survived, and that was an average, so I decided I would do what I had to and that I would beat it.  

Be with friends,  pray of you are a praying sort, and do what you can to help your body defeat it....get sleep, eat well and exercise as you are able.   Get with a support group and certainly keep on calling out to your other stage 4 peeps.....we know what it is like....most people don't.  

Remember, this is a process, and you will work through it.  Let yourself grieve.  Let yourself get 

angry....and take care of yourself.

That is the best I can offer.  It does get easier, and sometime you are doing well and then the feelings and fear smack you....but, take one day at a time, don't look down the road as all you will be doing is making a fantasy of fear ( unless of course, you are seeing yourself as very healthy, but stay away from the accepted prognosis), and doing what my mom always called borrowing trouble.  

I still stand by this advice.....We do go through this as a process....we grow, even in the face of death.  We come to new realizations and understandings.  We have an unwelcome companion by our side, but it is possible to learn to walk with him and accept, maybe begrudgingly, that he is there.  Sometimes it can even produce some interesting conversations. 

An Answer to Pinktober

A couple of weeks ago, I took my husband to the airport at 5:00 am.  I was stunned to see this pink lighted control tower....done in recognition of Breast Cancer Awareness Month.  My response? YOU HAVE TO BE FRIGGING KIDDING ME!  Does this pink phallic symbol have ANYTHING to do to HELP those of us who have been stricken? Does it really do anything to help "breast cancer awareness?"

I have to admit, some of us are getting a little bit militant about this.  Me included.  After 20 years of "breast cancer awareness" don't you think we ARE aware?  While strides have been made, those of us who have metastatic breast cancer (MBC or stage IV breast cancer where it has attacked a site outside of the breast of the lymph nodes) are largely ignored by the pink tide.  For most people, they have no clue.

Yes, catching breast cancer early does help...but 25-30% of those diagnosed with breast cancer will have a recurrence, quite a few of those early breast cancer diagnoses will have it return as a stage IV cancer.  In all the funds raised for breast cancer awareness only 5% of the funds go to study MBC.  Over 40,000 people (MEN and women) die of breast cancer each year...Yet....it often seems like in the pink hoop-de-la, we're forgotten.  I am aware...and I have a second recurrence of mets to the bone...this time in many areas.

For a lot of people who were diagnosed with MBC, talking about it is scary.  Those of us putting out the numbers are putting out a lot of scary information.  Yes, it IS scary.  But we have to talk about it.  It was only through the promotion of various organizations, the Pink Ribbon project and Susan G. Komen that we have brought the fight to the stage we have....it is rare these days for a woman to go in for a biopsy and come out without a breast like Nancy Reagan did, and that's a good thing.   But we need to do more.

Nancy's Point did a really good post on why it is important to talk about it and to remind people that there are those of us who are literally fighting for our lives.  Take a look at her blog post here  In addition, there is a great website for those of us who have it, Metavivor.org.  Their website has a lot of information, but their blog is very useful.

And here is a simple thing....sort of a silly thing....but oh so needed. MBCaware.org has put out a call..if you go to their site, $1 is donated to MBC research; if you share it on Face Book, another $1 is donated...if you tweet or share through other social media, then more money is donated.  So...go here and read more.  I will be very glad you did...and if you share? Well, I'll be happier yet again!

Reconstruction or Not...

Ok...so this is a restoration of an 1887 building, not a reconstruction (Birdseye Mercantile in Avon, Montana, see my other blog for more info).

Breast reconstruction is a highly personal choice.  One which needs to be considered carefully.  Recently, a friend of mine who had a bi-lateral mastectomy told me that after several years, she's decided to have reconstruction in the spring.  I chose not to have reconstruction.  My sister-in-law had reconstruction but confided in me several years ago that if she had it to do over again, she wouldn't.

I chose not to have reconstruction because in 1998, my choices were limited to one which took abdominal muscles, and another which took muscles from the back.  I couldn't face another surgery, and it seemed to me that these two muscle groups were pretty important.  While I once had nice breasts, I decided to just use a prosthesis, and not worry about it.

My sister-in-law told me that it never really felt like a breast (reconstruction doesn't replace the nerves, so you don't have the sensation that you would normally have with a breast).  Another person I knew in Connecticut had horrible results, even though she went to a very good surgeon.  Yet another friend here went to New Orleans to have surgery which at the time was only offered there which used muscles from your derriere.  She was very happy with that surgery.

Melanie Testa, who had a bi-lateral mastectomy has chosen to not use prosthesis at all....Something I wouldn't do because I have one breast and I found while waiting for the surgery site to heal and to be fitted for the mastectomy prosthesis, my remaining breast (being a 34C) was large enough that it threw my alignment out and gave me a back ache. By wearing the prosthesis, the weight of the silicone once again balances me and I don't have back issues because of it.

Melanie calls herself a "flattie."  I would be a "con-cavey" as I suspect I had more tissue taken than she did, and I definitely have a divot where the breast once was.  She is of normal weight...and I know that some of my friends who have had bilaterals and are larger women sometimes have a little roll...which shows if they don't have the breasts....

Melanie has experienced some interesting things since she has chosen not to wear the prosthesis or have reconstruction.  While she says that prosthesis can contribute to lymphedema, I am not sure that that is the case.  I haven't known women who have it who can attribute it to that, it is more often a result of the scar tissue tightening, an injury, or a muscle pull or other damage to the area.  She also mentions that the prosthesis rubs against the scars....and I can attest that that has never happened to me.  I have never had irritated tissue from wearing the prosthesis.  However, I do agree that reconstruction is not a given, and that people should be well informed as to their choices.

To that end, she is hosting a Pocket challenge.  She is collecting pockets made in recognition of people who have chosen NOT to have reconstruction.  You are to make a pocket per her instructions on her blog, and send it to her during the week of October 22.  You need to sign up on her blog, and she will send you the information to return the pieces to her.  She wants to collect 1,000 in order to submit it for an article to bring it to the awareness of people during this deluge of pink month...Please pass the word on.

Fais do-do!

Sunset with Rocky Mountains, east face of Glacier NP from my parents.

So...if you don't speak French, perhaps that heading is a big question mark.  It is a phrase I learned in college French and heard the lullaby which uses it in Nova Scotia many years ago. It is the French equivalent of "go beddy bye."  The "do-do" is a corruption (? not really the correct word) for the verb "dormir" which is "to sleep".  It has always made me smile.

One of the things I have been struggling with lately is my capacity for sleep.  Granted, it is usually interrupted with a couple of potty breaks, but lately I've been sleeping 9 - 10 hours.  Ouch. That takes a big chunk of your day.

However, it is important that I take the same advice I dole out to my teen-aged daughter.  Sleep is when your body heals itself, therefore for us cancer fighters it is especially important.  Don't beat yourself up about it...don't worry when you feel fatigued...just know that your body is fighting and it is your duty to help it as much as you can. So, make your apologies, bow out early, and fais do-do!

A Voice of Reason, a Voice of Hope

I just read a face book post which Tami Greenfield Boehmer put up...and I had to share.  Tami has been denied a cancer protocol by her insurance, seemingly because of the recent NCCC's suggestion that any more than 4 chemos isn't worth doing as it doesn't prolong life long enough.  For those of us who have had YEARS with no evidence of disease in between bouts, and are stage IV, this is just contrary to what we are.  I am presently on my 4th chemo, yet most people don't realize that I'm fighting cancer at all...and I am many years out from my initial stage IV diagnosis.  We should be looked at individually, yet often the suggestions, guidelines, whatever you want to call them. are taken as the be all and end all and to be applied to each and every cancer patient regardless of our individual stories and situations.

Here's a doctor I wish we all had access to:  Take a look at this article, I think you will be pleased.

https://www.elcaminohospital.org/About_El_Camino_Hospital/Talking_About_Cancer_Treatment_in_2012

Frustrations and Rarities

Lately I have been feeling a frustration of sorts.  It is an odd one....but here it is.  Most, if not many, people who are on the oral chemotherapy Xeloda describe it as an "easy drug."

For me, it has been far from easy...and I sometimes cringe and am saddened when a new person is talking about taking it and I hesitate to say what my experience has been.  I am currently on a month's break because the hand/foot syndrome was so severe that I couldn't walk.  I couldn't wear my shoes.  My fingertips were so sore that I couldn't do the everyday tasks I needed to.  This doesn't count the change in taste, dry mouth, thining hair, dry eyes, dry nose, cramps and joint pain, and other side effects I have been having.  But not being able to walk or use my hands was the worse. While on the 4,000 dose (the above effects are on a reduced dosage of 3,000 mgs. daily), I also had nausea and diarrhea.

Each of us react to chemo-therapies in different ways.  It is useful to know what others have experienced, but it is important to bear in mind that we might not have as hard of a time as others, and that the reverse is also true....we may be saddled with every (or almost every) side effect listed in the manufacturer's list of side effects.  In addition, chemo-therapy tends to be cumulative, meaning that as time goes on, the body is hit harder and harder as the levels of the drug increase in our systems.

With Xeloda, and I suppose other oral chemotherapies, it is easy to think of it as being a benign drug.  It isn't.  By it's nature, it is hard on our systems.  Just because it isn't an IV doesn't mean that it isn't as strong or as dangerous as other chemos.

Just because you found one drug difficult doesn't mean that you will have just as hard a time on the next drug.

And....it's OK to feel sad or a little jealous when others talk about the wonderful results they are getting when you're not, or when an "easy" drug turns out to be hard for you.  We are human. That's the rub as well as the glory.

Old Age isn't for sissies....but neither is Metastatic Cancer

I've been visiting family out west....and with that, means I have been in contact with a lot of octogenarians and nonagenarians.   I have to admit, sometimes I struggle.  Why?  Well, a frequent refrain runs like this:  "These are supposed  to be the golden years? HAH!";  "I never thought growing old would be this way.";  "Old age ain't for sissies."  and more.

Sometimes it is all I can do not to blurt out "But I'd welcome the chance to grow old!"  Or...."At least you have been able to see your children and in some cases your grandchildren grow up and be married."

Instead, I smile sweetly and nod my head.  "Those aches and pains are tough, aren't they?  I know just how you feel because I have the same trouble walking."  Or something.....or not.

Quite often life doesn't turn out like you envision it....in fact, I think it is rather a surprise when anything you envision turns out that way at all.  For a metastatic cancer patient, we don't know what is around the corner, and it can be nerve wracking.

Cancer isn't for sissies.  We're a pretty strong group who faces it down.....or even when it does wiggle around and surprise us and takes away our general good nature...we are still here.  Sometimes I think we often surprise ourselves with how strong we can be, if we let ourselves.  Be strong, and treat yourselves well.  You are stronger than you think.

Los Angeles Area study on Chemobrain

I 

I've written on this before, but here's a chance to get yourself counted....I especially appreciate this as lately, I realize that I'm just not thinking straight....making mistakes or not seeing solutions which would ordinarily be easy for me.

The Army of Women is looking for female breast cancer survivors in the Los Angeles area, ages 21 to 65, who are experiencing memory loss and concentration problems, to participate in a research study evaluating a rehabilitation program designed to improve concentration and memory skills.

Breast cancer and its treatments can affect many aspects of a woman's health and well-being, including her brain (cognitive) functioning. One common problem is persistent difficulty with memory, concentration, multi-tasking, and other similar activities—often referred to as "chemobrain". A research team at the University of California, Los Angeles, wants to help! They have developed a group-based cognitive rehabilitation program for breast cancer survivors who are experiencing these problems and they need YOU and your readers to help test it!

http://blog.armyofwomen.org/2012/03/los-angeles-area-breast-cancer-survivors-needed/

Breaks

Notice, the handle on this pump is broken...in fact it is a "fake" set up. In Montana, stuff is often discarded on the property when it is broken or worn out.  Bits and pieces are harvested and put to other uses, or used to repair another item.  In this case, the water trough covers a hole at the edge of my parent's driveway, and I set the pump to help anchor it in place and to be sort of a decorative element.

Presently, I am taking a month's break from Xeloda.  Like most chemo-therapies, Xeloda's side effects build up over time.  I started Xeloda in April, accidentally taking a half a dose, 2000 mgs a day two weeks on , one week off, when I was supposed to be taking 4000 milligrams daily.  At 2000, I didn't really know I was on it.  For the next series, I took the proper dosage of 4,000 mgs.  That threw me for a loop as I had nausea, diarrhea, hand and foot syndrome, dry mouth, etc.

But it was working.

The next series, I was dropped to 3,000 mg.s a day, two weeks on, one week off.  I have been on that for several series...the hand and foot syndrome got worse...my feet and hands swelled and the pain was so much that I couldn't do much.  Walking hurt. My feet burned as well as cracked and sloughed off pieces of skin which ranged from 2" x 3" to smaller bits.  The week "off" the pain abated somewhat...but then it was time to start again.

This last series, it didn't even lighten up then. Two days before I was to start the treatment again, I could barely walk, and when my husband accidentally kicked my foot in bed it sent me through the ceiling.  My big toe cracked so deeply it was bleeding. I told the oncologist that we had to change something.

His response was to give me a break, and then start back on at a half dose....and we would adjust and see how it went.

Taking a break is scary.  Will the cancer take this opportunity to really grow and multiply, or will the 5FU in my system continue to kill it off.  Will my hands and feet recover enough to really do any good? This is the end of the second week off and I am only now beginning to be able to walk without pain.  My feet are still shedding, and the skin is still thin but I have finally found some stuff to help stop the cracking.  My feet are still swollen and I can't wear shoes yet...


But...I will keep in mind that even if my markers rise while I'm off, they can't rise that much, and I will work hard at trying to find the right combination of dosage and dosing protocols.  With Xeloda, there are a lot of different things you can try....while Genintech is still gathering information, I hope that one of the methods...one week on, one week off, or daily doses of 1500 mgs with no break will work.

After all....even things which break can be put to use again in a different way.

Foul Mood

OK...so these are fowl, not foul...but it doesn't stop the fact that I am in a foul mood.  My feet hurt.  My hands hurt, and digging out the weeds and three foot high mulberry, and two foot high hickory trees out of my perennials beds is not in the picture.

But more importantly, I'm irritated with Nancy Snyderman....or maybe just the state of health care in general. Why?  She was honest...and in talking about scans and tests, she said that we should do less (and I don't disagree with this as I feel that often a test is required just to cover one's bases...even if there are other means to find out things more easily), and accept the fact that some people will die because of it.  Starr asked if it was all about money...and Snyderman said yes...that we should do what is best for the bottom line....

Hmm.  So this means that the wealthy, who already have access to better health care, better doctors, and more adjuvant treatment than the middle class or poor class, are more valuable to our society than the common folk....and that through some quirk of fate, those of us who do not have silver spoons in our mouths, or had the misfortune to suffer a disease, accident, or say....an I.E.D. are some how lesser beings and not as important to save....

I resent the fact that I have worked. I have paid insurance, and now when the chips are in, I don't have equal  access.....and that people like Snyderman, and the insurance companies and dictate who is valuable and who isn't.  I dislike that fact that I risk bankrupting my family....I resent the fact that it seems like people who have advanced cancer, stage IV like mine, are considered expendable....I resent the fact that things which probably would ultimately REDUCE the cost of health care for me, chemo in particular, are not covered (I'm thinking rational therapeutics here--and perhaps more study to see how effective it is in seeing which drugs are most likely to work).  I didn't ask for this disease.  I do ask, however, that I am not marginalized nor made to feel like my life just isn't worth it when compared to others.

Yes...I know....this is probably because my hands and feet hurt....but I am getting weary of this...I am getting weary of attacks being made on the affordable health care act without offering a solid plan, or one which doesn't allow exclusions for pre-existing conditions....

So, forgive me...and allow me this one little fit of pique...I'm sure I'll have more....but I'm thinking that those of us who have been touched by Stage IV cancers need to make our faces known just a little more...and start roaring....Black-panther style? Probably not.  Pink Panther style? Well....I'm not so much into pink and the pink parade which is beginning to gear up because they seem to forget the MBC patients...and I certainly don't think we are a laughing matter, but we do have to get the message out there.  Our Lives Count!

Hand and Foot Syndrome

OK...so I'm a little wierded out by my feet...and sort of hesitated to share this with you, but I decided it was better that I do.  Yep..this is my right foot.  You can see how the skin is peeling off and the foot is very reddened in areas. On the upper side of my instep you can see the remains of a rash I had.  I'm not sure if the rash is from the Xeloda, or if it is a reaction to something in the salves I have been using.

I do know, however, that this series has resulted in the most painful foot and hand issues for longer than any other session....It got bad once, then the last couple of series were better...but this is the pits. I am finding it very difficult to walk and my fingers are extremely sensitive.

I do laugh when people suggest to start using salves IMMEDIATELY particularly one called Bag Balm.  I did..and I'm still a hurting puppy.  Genentech, the Xeloda manufacturers give you a little tube of Udderly Smooth, the current name for what was once known as Udder Cream.  I know it well. In fact, I have a pot of it--a large canister--as it has long been used by hand-quilters to calm the fingertips on the under-hand.  The medical field bought into it and often hands out samples for a variety of reasons.  I like it, but it is very light and I find that it just isn't heavy duty enough.

I have used Bag Balm and slather it on at night and put on socks to go to bed....and that has resulted in a rash, although it did help some.  One draw back with both Udderly Smooth and Bag Balm is that they contain parabens, the most common being Methyl-paraben and propylparaben.  The parabens are used in cosmetics, food and pharmaceuticals as a preservative (an anti-microbial).  The problem is that they are absorbed through the skin and the gastro-intestinal tract and they mimic estrogen...Not something I should be using (for more on this, please refer to this article, and I am sure that there are more in-depth discussions elsewhere on the web.)  It is extremely difficult to find lotions and deodorants which don't contain parabens...

One salve which DOESN'T contain parabens and does a really good job is Burt's Bees Miracle Salve, but it is often difficult to find.  I found another product which helps with the cracking/deep fissures and the general hurting on my feet is a heel cream which is in a stick form from Kohl's.  It is horribly expensive, doesn't contain a list of ingredients, and doesn't last long, although it works well (it sells for $10 per small stick).  Gold Bond makes an Ultimate Healing Foot Therapy cream, which smells nice and works well....not as great as the Miracle Salve for serious stuff, but for day to day it's nice.  But (there's always a but, isn't there?) it contains both methylparaben and propylparaben, and is a little hard to find. Another Gold Bond Product which is lighter yet again is Gold Bond Ultimate softening foot cream with shea butter....but I think the Ultimate does a better job..and no surprise, it also has the parabens.

Dr. Scholl's "for her" Intensive Heel Repair Cream doesn't appear to have parabens (at least I couldn't find them listed), but I don't think it works as well as the Gold Bond Ultimate Healing Foot Cream.  After hearing that someone was doing a study with Xeloda users to see if using an antiperspirant on the feet would help, I went out to find an antiperspirant....and ended up buying a men's antiperspirant as it was the only one which seemed to fit the description..but it too had parabens in it, and I don't think it did anything.

The only thing I haven't tried...partly because I don't want orange feet and partly because it seems silly is to get some henna and put it on my feet....leaving it on for I think 20 minutes....plus, it's a little difficult to find around here.

What do you use?

Xeloda and its Side Effects

Some signs of hand and foot syndrome.

Toxicity rash the first month. 

Xeloda (capecitabine) is sort of an odd drug.  For most people, it is viewed as an "easy" drug which is quite effective.  For others, including me, it is more problematic.  Usually, side effects start appearing in 7 - 10 days.  For me, they start getting bad on about day 10 and it lasts through day 21, getting slightly better, but never going completely away, depending on the particular side effect.

The most common side effect is what is known as hand and foot syndrome, not to be confused with Hand, Foot and Mouth disease, a virus with which children are often infected.   Of course it also isn't related to "Foot in Mouth disease"  to which I also often succumb. You can see the beginning of the side effect in the photo to the left. Hand and foot syndrome with Xeloda is the redness and tenderness of the hands and feet.  With me, I slough off skin, bit sheets of skin on my hands and feet.  They become tender, and have a burning sensation.  In addition, they swell and feel tight. It is not unusual for the heels, toes and sides of the feet to develop deep fissures or cracks. Up to 60% of the patients taking Xeloda suffer from this, and it varies in severity.

It isn't pleasant.  The "solution" is to slather the feet with lotions and salves.  Avoid soaking in water to prevent a bad situation from getting worse.  Several of us on the Inspire.com website joke that we would be able to do some great jewel heists because we no longer have fingerprints (the sloughing skin and the thinness of our new skin makes fingerprints more or less disappear....much to the consternation of people who are trying to take fingerprints for identification purposes, people who are trying to open those annoying produce bags in the supermarket, and for me...my iPad balks at my touch.).  The lotions are only moderately  helpful.  I liberally coat my hands feet in various salves and wear socks and gloves to bed.

When I first started taking the correct dosage of 4,000 mg a day (2,000 in morning (4 500 mg tablets) and 2,000 at night--remember I accidentally took a half dose for the first treatment) two weeks on one week off, I had massive issues.  I had diarrhea, gas, nausea, and constipation (yes, even while I had the diarrhea), dehydration, dry eyes, dry mouth (cotton mouth), cramping, stomach pain, loss of appetite.  It was severe enough that the oncologist backed it off to 3,000 mg. a day .  That took care of the most severe problems--the nausea, and diarrhea and stomach pain.

With 3,000 mg. a day, I still have: periodic constipation, hand and foot syndrome, vision changes (dry eyes which makes things sort of hard to focus on), dry mouth/cotton mouth, lack of taste, toxicity rash (the rash you see in the bottom picture which can also blister and tear easily...I call them my toxicity evening gloves), thinning hair (boy is this one annoying! I just got hair back and then I started to loose it again!), sensitivity to the sun, higher blood pressure than I usually do, discoloration of my nails and the worsening of a nail fungus, fatigue, anemia, heart burn (for which I take Prilosec--well actually it's generic form omeprazole).  My feet also often get little blood blisters, which my onc says is probably because my skin is so thin...you bump it, and then you get a blister.  Fortunately, I only had mouth sores (stomatitis) once--and that oddly was when I used a mouth wash to help with the cotton mouth (dry mouth).  For a full list of side effects, look here.

Fortunately, these are annoying, but I am able to deal with them.  Many people don't have much of a problem at all.  Often, people are put on a regimen of one week on, one week off.  My doctor chooses not to do this as he feels there hasn't been enough long term study of the effect of the chemo even though the lesser dose has been proven to be beneficial in managing the side effects.  He did offer to back it down to 2,500 mgs...but to be honest, I am chicken to do this while my tumor markers (which have always been pretty reliable for me, and since my insurance won't let me have any more than 2 PET scans a year...if that) are still fairly high.  (Currently they are at 150 and the high end of normal is 38....I started at 318).  Once my markers drop down into an area I am comfortable with, then maybe I'll reduce the dosage.

The good news is that for many people, this is an effective and fairly long lasting drug.  But like all chemo-therapies, the cancer can mutate and the particular regimen be ineffective.  This is do-able.  Is it something I would do for fun? No. But I can handle it....although yesterday when I was walking around the AQS Quilt Show in Grand Rapids, I really regretted it...my feet took a major beating....and I'm exhausted.  It is going to take several days to recover.   If I had been able to do this maybe next week, or the week after it wouldn't have been so bad.

We tend to think that this is a "mild" drug....but it is still chemo and because it doesn't cause as many serious side effects, it doesn't mean that it is any less toxic.  It is an arrow in our arsenal...and an arrow is still a weapon which may hurt us as well as kill the enemy.

Participate!

Yesterday, I spent two and a half hours at the University of Dayton working with Mary Fisher, a Phd. candidate in Physical Therapy.  Mary's a pretty interesting person, and she's doing a study on Breast Cancer patients and muscular strength and endurance.  I did part of the study with her last fall....this time was a bit more honed.

It was non-invasive...except for the fact that Mary now knows my weight and blood pressure (the weight thing is definitely not something I share, although I am 25 pounds lighter than I was 2 years ago).  I got nothing in return except for sore trapezius muscles (hey, I don't usually lift 15 pounds over my head multiple times) and the knowledge that the information Mary gathered, might someday help some other person or doctors to understand what we really go through....

Just think....if we do participate, then doctors might learn that something works....or doesn't.  Or....like the CRS study, it just might validate what patients have been saying for years....only to be dismissed.

The Army of Women frequently puts out calls for women (and men) in certain categories and looks for people who have or have had cancer and those who haven't in order to study the effects.  I have participated in a couple of studies with them, and some of them have even meant me having blood drawn and shipped off to the facility which is doing the study...once to St. Louis.

In Mary's case, she put out a call to various cancer support groups.  In my case she contacted the Noble Circle, to which I belong.  However, she said she has been having a hard time filling the study.  So....if you're in the Dayton area and can give up a couple of hours of your time, contact me, and I'll put you in touch with her and send you the flyer on the study.

What ever you can do...just might change a life or change the way of looking at the disease.

CRS

CRS.....if you've been on chemo...or if you are a woman of a certain age, you'll probably recognize this.....for others, a polite way of putting it is "Can't Remember Stuff."  For most people, when you have occasions where you can't remember a person's name, a noun, or whatever, you just chalk it up to forgetfulness.  For a breast cancer survivor(and I'd warrant other cancers as well), particularly a Stage IV survivor, that forgetfulness makes you fearful that maybe you now have brain mets.

Take a deep breath, and let it out slowly.  Fortunately, this isn't really the case...and for most people, it won't turn out to be cancer in the brain.  "Chemo brain" used to be laughed at, and doctors didn't really believe in it...but talk to any cancer patient who has gone through chemo and they'll tell you that they are foggy and that things they used to be able to remember don't come as easily to them.  I rejoice that not too long ago, someone actually did a study on it and discovered chemo brain is real. You can read up on it here.

If you say "But I've been off chemo for months!"  In actuality, I usually found that it took at least six months for side effects to go away (some go more quickly than others) and it will take up to about 18 months for most of the side effects to abate...at least that has been my personal experience each time I have gone through chemo (and stopped for any length of time).

In addition to chemo causing the fogginess, a lack of estrogen, particularly in women who have gone through either chemical induced menopause, surgical menopause or regular menopause, can cause the synapses to go a bit off.  Fortunately, that condition usually rights itself and you don't continue to have the problem.

Another reason for forgetfulness, or chemo brain, may just be out and out stress.  Being in stressful situations also makes you forgetful.  Also, if your diet has been poor, or you're not eating enough or eating things which are primarily highly refined carbohydrates, you may not be giving your brain good fuel.

So cut yourself some slack, and go eat some good brain food...cold water fish, nuts, things low on the glycemic index.  Fruit is also good...particularly bananas.  And when you're really in trouble and can't remember someone's name, just shout out "I'd like to buy a noun!"

A Funerval!

Tea at the Willard

Not too long ago, on the Inspire message board for Metastatic breast cancer, someone posted that they recently had a "Funerval."  She dubbed the term, and said that as most people would really love to attend their own wakes, why not have a "funerval" to appreciate them while they were still alive? What a great idea!

The guest of honor gave the list to someone who organized it, and it was a big party for everyone to enjoy and appreciate the honored one...in this case, someone who was diagnosed with Stage IV breast cancer.  The cancer patient didn't do anything, the friends all pitched in and they just had a big party.

What a great idea...and you could even hold anniversaries...although, I think doing it for 15 years is a little long....I DO love a party.  This photograph is the closest to a party I have...it's Maggie, me and Lourdes having tea at the Willard Hotel.  Maggie is a breast cancer survivor of 8 years, and Lourdes so far is cancer free, although her husband had breast cancer and her mother died of advanced breast cancer....and Lourdes is Maggie's sister. 

Worrying about the Future

Yesterday, someone was talking to me about waiting  to have a scan...she was terrified..."What if it shows something is there?  What if it is back?"  So many people who have had cancer or other life threatening experiences continue to live looking over their shoulder....fearful that something is going to happen.

Generally, I don't do this...Don't get me wrong, there were times in this journey when I did...it is only human nature, but I have never let that fear run (or ruin) my life.

 The way I look at it is like this....This is a daylily...each flower lasts just one day....but oh, during that one day, it is just glorious....Does it worry about the fact that tomorrow it won't be? That it will be an ugly husk of  a flower? No.  In fact, it is as it should be....the flower served to pollinate another flower and the plant will make seeds.

We have the ability to continue to look over our shoulders at something which might happen....something we have very little control over...or we have the ability to look forward.  I suggest looking forward...you're less likely to fall on your bum.

Some things to consider.  If you are really having difficulty dealing with fear of recurrence or fear of scans/tests, then I suggest that you talk to your oncologist or general practitioner. Perhaps some counseling will help, either through a therapist or perhaps a trusted clergy person.  Some people do find that they need anti-depressants or anti-anxiety drugs.  In fact, one person I know has to take a sedative before getting a PET scan because she is so wound up about it.

I would also highly recommend yoga, qi gong, and meditation.  All three practices focus on the here and now...not yesterday, not tomorrow, but the now.  Concentration on breathing helps when you have an anxiety attack, and meditation can also help in how you approach your fears or anxiety attacks...and indeed they have proven to improve your general health.  

Courage, Heroism and Cancer

A couple of years ago, a cyber-friend asked me to make a comfort quilt for her neighbor who was going through cancer treatments.  She sent some sayings, one of which I had never heard before, but loved it as I could relate.

It's attributed to John Wayne...and whether or not he really said it I suppose is beside the point.  "Courage is being scared to death and saddling up anyway."

Many people have said to me that I am their hero.  Mostly friends and relatives who have watched me as I go through these treatments.  First, I think "hero" is an overused word.  For one thing, I find it difficult to believe that football players and basketball stars are "heros."  Ok..so here is what Merriam Webster has to say about the definition:

1. a : a mythological or legendary figure often of divine descent endowed with great strength or abilityb : an illustrious warriorc : a man admired for his achievements and noble qualitiesd : one who shows great courage2a : the principal male character in a literary or dramatic workb : the central figure in an event, period, or movement3plural usually he·ros : submarine 24: an object of extreme admiration and devotion : idolI'm not mythical, I'm not an illustrious warrior, noble qualities? Hmm...there's one for thought, although I don't particularly feel noble.  I'll accept one who shows great courage I suppose, although truth be told, I don't feel courageous...I just do what I have to do.  No, I'm not in any literature, nor am I the central figure in anything...and 3, no, I've been called "cookie", "Sweetie" but never a sandwich (i.e. grinder, hero, submarine or sub).  I guess I can also accept that some people admire me...although once again, I don't quite get it....I do what I must....and yes, sometimes it means steeling myself to do it.  For example, I am currently on a chemotherapy called Xeloda which rather than being taken intervenously, it is administered as a pill.  The original dosage was four tablets in the morning and four tablets at night, taken for two weeks then one week off.  Unfortunately, it gave me hand-foot syndrome (swelling, peeling skin, burning sensation, pain of the hands and feet), severe gastric distress, and some other side effects which were none too pleasant.  The day before I was to start again was the first day I felt relatively human.  Not fun.  Two weeks of yuck.  So...when Tuesday morning rolled around and I had to start taking it again...I looked long and hard at those tablets.  I didn't WANT to take them.  Although the doctor reduced my dosage to 3,000 mgs rather than 4000 mgs....I really didn't want to have the same problem.  But, I gritted my teeth and took the tablets.  

That I can relate to was courage...yet, it isn't the courage I associate with heroism.  Now if I had charged into a burning house to save some people knowing full well I could be killed, that might be heroism...and yes, I understand that that example verges on stupidity...but you get the drift.

For most of us who are undergoing treatment, every day we are in treatment requires us to screw up our courage...and saddle up.  


For now, the drugs are working.  The reduced dosage may be working...I'll find out in a couple of days when my tumor markers come back.  I do know that I have low red blood cells, low hematocrit and some really whopping sized red blood cells who are trying to carry on for the reduced numbers....and yes, I still have hand-foot syndrome, and the nasty rash which burns and blisters on the back of my hands (a sign of toxicity), but at least my stomach was less upset...

Being at Peace

This last weekend I had the privilege of meeting a fellow breast cancer survivor who had some pretty big burdens. She struggled with the question of whether she had done things differently, if there would have been different outcomes in an area of her life.  This question is one which burns in the minds of some cancer patients....Would I have avoided cancer if I had done this?  Would I have been in a better position if I had gone to my doctor earlier?  Lots of "What ifs."

Of course, one of the other things that cancer patients have to deal with are the people who accuse you of causing your own cancer, and indicate that cancer is a "wake up call."  That maybe "Now you will take better care of yourself, stop eating so much, get more exercise, stop smoking..." fill in the blank...as if we need MORE life altering things to deal with at the time of diagnosis and we certainly don't need  more guilt.

I feel strongly that for most of us, we do the best that we can at the time. In retrospect, sometimes we think we could have done better.  However, with where we were at the time, with the information we had, with the personalities and resources  we have...usually the answer is we did the best that we could at that time.

The hard part is looking at that..acknowledging it, and then letting it go.  I think that most of the meditative practices, such as Yoga generally believe that.. Often, we go through the motions or even actually are able to get most of it....but letting it go, and allowing ourselves to have peace in that is difficult.

One of my constant expressions throughout life is "What is done is done" and "no use crying over spilled milk."  I am also taken by a line from the Book of Common Prayer...and if any Episcopalians can help me out, I'd appreciate it.  I remember a prayer which was said at the end of the day....only I can't remember WHICH office it is, but one of the lines is "what has been done, is done.  What has been left undone is undone," then it goes on to say to put it aside, and be at peace....go to sleep...tomorrow is another day.  All of us need to remember this and try to practice it.  I think it will lead to better inner peace and probably a healthier body...if not a healthier mind.

But there's another element to this.  I admit, I was a bit nonplussed this weekend when I heard from my college Freshman daughter who was preparing for her final exams this week.  Being "mom" I asked her if she had been studying hard.  She waffled...which indicated to me she had been umm.....enjoying life? rather than really hitting the books.  She started in on "I only have to get a 71 in order to get a 90 in the class and I only need a 3.75.. in that class and in another...."  This isn't new.  I'm not sure how I feel about it.

My daughter and I are two different people.  Maybe it is my having cancer is why she often snorts at me and says "there's more to life than studying."  Don't get me wrong.  She does well, and she's smart.  But in my book you work as hard as you can to do as well as you possibly can..and figuring out the minimum you need to do isn't doing the best you can.

I suppose it goes back to the first part of this essay.  If you do the BEST that you can, and work as hard as you can, then you can rest assured that no matter what the outcome, you did what you could in that moment.  I'm not sure that figuring out the minimum you can do is doing that...although it might just be a stress reliever for her and she is verbalizing this....but not really slacking off....but studying smartly and effectively.

A mom can only hope.

On the other hand, my husband's cousins say that she is great at time and project management and this is a useful skill once she gets out in the business world.

Time will only tell, and, of course...her grades.