More Radiation Weirdness: Scar Boost

As I completed last Wednesday’s radiation treatment the technicians asked me if I “minded staying around a few minutes more.”

Oh, sure. Why not.

Since it was Wednesday, the day I see Dr. Ross, and I’d already planned on being there longer than normal, why not? What else could I have to do? Cancer treatment is my new job, isn’t it?

They informed me that they needed to do another simulation, of sorts, in preparation for the next phase: the Scar Boost.

They promised it would only take about 15 minutes. From what I can tell, their clock runs much slower than mine.

Considering the only other simulation I’d undergone had seemed a mild form of torture, I wasn’t jumping up and down with excitement. But knowing that I had been lying on that table and stretching my body into radiation formation for weeks now, I figured I could handle it. This would be the test to see if my flexibility and endurance had improved since that first simulation.

Plus, I didn’t have a choice. Where cancer fighting is concerned, you do what has to be done. Doesn’t pay to grumble. Although, I did wonder what they would have said if I’d replied, “No thank you.”

So, I found myself back in the simulation room with the two sweet simulation ladies, with their Sharpie markers, and fancy tape, to prep for my SCAR BOOST. Sounds pretty cool, huh?

They even called in Dr. Ross to mark on me this time. With green Sharpie, no less...something to accent the red and black marks already there.

Once the body art was finished and Dr. Ross left, they added a few finishing touches with green paint pen. Yes, paint pen…as in the kind they sell at Hobby Lobby. In prep for high tech radiation treatment I am marked with Sharpies and paint pens from the local hobby store. As an art teacher I appreciated that. 

Once marked I was then scanned and photographed so Dr. Ross could prepare whatever high tech scientific things needed to be prepared for my scar boost.

Unless you have already been there done that, you are, like I was, probably asking: "What is this so called 'scar boost' of which you speak?”

Short answer via sweet simulation ladies:
It’s where they will irradiate the scar area during the final few days of treatment.

More concise answer via Dr. Ross:
The overall breast area radiation is about to end and for the last few days of treatment only the area around the scar will be irradiated. If breast cancer is going to return for a regional recurrence (in the chest/breast area) it is most likely to return to the area around the mastectomy scar. Why? (It has nothing to do with the location of the previous tumor.) This is why: Since the scarred tissue receives less oxygen, the radiation that has already been given does not work as well there. So, the scar boost will help insure that any bad cells hanging around the scar area are damaged for good. Simple as that.

Made sense to me, and was pretty darn interesting, in my humble opinion.

I’ve read that cancer does not like oxygen, which is one (of MANY) reasons to get aerobic exercise and meditate using deep breathing everyday. Get that oxygen flowing…really flowing…throughout your body as often as possible. (Have you ever noticed how shallowly we breathe when at rest?)

Did you just take a deep breath? If not, do it now. And again...and again.

But I digress.

The simulation was nothing like the last one. My arm muscle or tendon or whatever gave me such grief the last time cooperated much better this round, plus, I didn’t have to lay there for an hour. (Although that may still come…I haven’t been worked over by the other team yet.)

As I headed to the dressing room following my visit with Dr. Ross, I was curious to see the artwork on my chest. I was not disappointed. It was just as impressive as the previous map of Arkansas, for sure. This time they’d drawn a green NASCAR track around my mastectomy scar. Awesome. I am one tatted up gal.


Note to self: Being instructed to not wash away green paint marker does not work when included with 3 mile walks, 10 mile bike rides, and hot, humid two-shower days. Oops. Tomorrow is Monday; we'll see what they say.

Chia Patti

Losing my hair back in the fall was an interesting experience, to say the least. The unfortunate side of it was that this hair loss was due to the chemotherapy regimen I was on at the time (TAC) that, it turned out, did absolutely nothing for my cancer. Nada. Zip. Zilch. Lost my hair, sick as a dog, missed work, all for naught. That chemo came to a screeching halt in October when it was determined that my tumor had grown considerably.

We quickly decided to move from neoadjuvant to adjuvant chemotherapy and had the tumor removed the old fashioned way – via sharp knife and talented doctor. A section of the tumor was sent for profiling, which came back with discouraging results, showing it to be resistant to the majority of chemotherapy choices. One of the chemo regimens that showed the least resistance was the one I just completed 6 weeks ago, the previously blogged about and frequently whined about Cisplatin and Gemcitabine.

In most minds, breast cancer treatment equals hair loss, but not with this regimen of chemo. That’s the one and only good thing about the Cis/Gem combo.

Once TAC ended, within about 6-8 weeks I began to notice a baby fine haze of darkness on my head and eyebrows. At one point I actually thought I had a smudge of something on my eyebrow area and tried to wipe it off, then realized it was new hair! By Christmas the baby fine haze had morphed into a sort of Euro-funky-skinhead sort of chic.

December 2010

So, here I am. It’s been over 7 months since the hair cell eating chemo ended and my hair has been allowed to grow. Right now it's only about an inch and a half long...shorter than I'd hoped after 7 months growth. I'm convinced that the chemo I just completed arrested the growth somehow. But I'm thankful to have this little bit...truly I am. Only, odd thing is, it seems someone else’s hair has taken the place of my old hair. Instead of my usual thick, somewhat wavy locks, my new do consists of a much finer and very curly crop of hair.

I knew this was a possibility, having read about something affectionately called “chemo curls”…and now those curls have come to live on my head. Like I said, I have someone else’s hair.



March 2011



Good start on a mullet. March 2011

 The hair color, at least, is the same. I did not lose the pigment that sometimes occurs following chemo, leading to a head full of white hair, though it does seem I have quite a few more grey hairs than before.

As far as style goes, I've gone from a nice Jewish boy look (think Adam Sandler), to my current, slightly longer locked, Will Ferrell style. Next stop, Mr. Kotter…or maybe Chia Patti.

I actually went to my hairdresser, Amanda, at Enve last week…first one in about 10 months! Not sure what she could do with these short little curls, but I was anxious to at least get rid of the weird mullet that was beginning to form on the back of my neck. She actually managed to blow dry and flat iron my hair, leaving it somewhat straight and a half inch longer. A miracle, for sure! Being this short, though, I don't think I'll trust myself with a flat iron for a while. I don't care for blisters on my fingers or head.

I would have loved to come out looking like Halle Berry, but it’s going to take a lot more than a haircut to make that happen.

I try not to complain about these curls (very often) since it definitely beats no hair at all (as David sweetly reminds me). I do get compliments, but am always suspicious. I haven’t decided if they’re genuine or sympathy induced. I seem to have lots of friends who are pretty bad liars.

And when all is said and done, a good baseball hat still comes in handy now and then.

At my birthday celebration last month.




Today...
The mullet is gone.
I'm thinking I could get used to this.




Eh...I don't think so.

 

One Year Ago Today...

 

Mark one off the bucket list.

No, it wasn't the date I found out I had cancer. It was one year ago today that I boarded an airplane in Little Rock with 15 other Arkansas teachers and embarked on a trip of a lifetime. We were headed for a fantastic three week tour of China, as part of the Bringing China to Arkansas Program (thanks to UALR and The Freeman Foundation).

Those three weeks in June were some of the most amazing and memorable of my life. Not only did I learn a great deal about a fantastic country, but I was able to see and do things of which I had only dreamed, and do these things with people who would soon become my very dear friends.

I have fantastic and lovely memories of that time in my life.

It's a little scary how much can happen in a year.

We returned from this trip at the end of June and a couple of weeks later I heard the words, "That doesn't look good." (I really don't think anyone ever said, "You have cancer.") The lump about which this was spoken was actually found while in Beijing, near the end of our stay in China.

The point of all this is not to review the many ups and downs of my crazy year, but to point out how quickly life can change. There is no doubt that I had cancer while in China, yet was clueless. I felt great, was going at full tilt, and loving every minute of the trip. Even after finding the lump I was not worried. I'd had lumps before. No biggy. It wasn't until I had it checked out that things changed...and changed fast.

Not to be morbid, but I'm sure someone reading this is in the same boat I was in at the time. Not a sinking boat, but a boat with some serious cracks in the hull. And like me, you just don't know.

So, all you healthy people out there, consider this and live each day like it could be one of your last. Be thankful for the good things in your life...family, friends, pets, home, blue skies, sunshine, birdsong, trees, flowers, laughter, tears, hugs, waking up each day. The list goes on and on.

Be kind to strangers and family, complain less, encourage more.

Be diligent in taking care of yourself...you only get one body. Get up and move; spend less time online.

I can no longer frivolously say things like, "I'll be glad when this week is over" or "I can't wait for next year!" My mom used to tell me I was wishing my life away, and she was right. She passed away at the young age of 71. She was not ready to leave.

Life moves quicker than you think, and this is not Walmart. There are no guarantees.

“Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think.”  Horace


 

Clueless at the Temple of Heaven - Beijing

Clueless at the Terracotta Warriors - Xian

 

My favorite town, Lijiang,
and the best travel companions ever!



The Bund - Shanghai,
and me without a care in the world.



The Radiation Ride

Fourteen down, sixteen to go. Almost half way there.

I began radiation treatments almost 3 weeks ago, on May 17, to be exact. I have a standing 9:30 appointment everyday from now through the end of June, or when I begin to glow...whichever comes first. It's my new part-time job.

Radiation is not quite what I imagined. Not really sure what that was, but this isn't it.

Chemo finally came to a long awaited stop at the end of April, just in time for my birthday. Best gift ever! Right after this I went for what is called a "simulation". This is done a couple of weeks before radiation begins. A simulation is basically their time to get all your rad ducks in a row.

During the simulation you get to disrobe and sprawl out on a narrow table as they position you on a sort of dense bean bag sort of body pillow. My radiation covers my (missing) breast area, as well as left armpit, clavicle, and neck, so to accomplish this involves some serious overhead stretching. At least serious for me.

I knew I was in trouble when they had me lay back and raise my arms above my head, grasping wrist in hand, and then "relax" my arms down. Oh really? There is no "relaxing" my left arm when in that position. It would have been more realistic if they had said, "Now pull your left arm back until you feel the muscles scream." But, being kindly technicians they asked me to "relax".

For most people this would be a simple task. While laying back, place your arms above your head, grasp the opposite wrist, and relax. For me, not. My right arm was very obedient, but my left arm now has a mind of its own...a somewhat closed mind. As my left elbow continued to stick up in the air, they continued to insist I "relax". I quickly explained that I WAS relaxed. ...Oh.

...Helllooww! Had a mastectomy, followed by axillary dissection! Things are not what they should be. You'd think they'd be used to this sort of thing. Or maybe I fit in a new category of super-wimp.

So with some quick readjusting and finagling they managed to get my arm into an acceptable position. At least enough to run me back and forth through the CT scanner a couple of times without whacking my elbow. CT is another part of the simulation. Doc needs scans to plan for the rads.

During this time they also spent a few minutes marking and taping me. When I was back in the dressing room I expected to look in the mirror and see all sorts of cool and technical looking marks on my chest, but from what I could tell they had drawn a crude map of Arkansas in black Sharpie, then added a few red X's for dramatic effect. Some of the marks were taped over with a clear, thin sort of tape. I was told I could shower and continue life as normal, so no probs. Distance swimming was discouraged, though.

I was back for actual radiation two weeks later. The first day was by far the hardest. On this day I met the technicians who have been treating me daily. Again, they laid me out on a table, this time in the "cradle". Sounds comfortable, doesn't it? Don't be fooled. The cradle is the form created from the imprint of my body in the bean bag thing during the simulation...painful arm position and all.

This whole first treatment ordeal takes about an hour. Lying on a table for an hour seems like no big deal, except when you have my left arm. It was an hour of torture. As they adjusted me, removed old tape, re-marked, re-taped, said things like "slide her up a few centimeters, 85, 97, that's good, what do you have?, 95, scoot her over a bit, hold still, be right back,... *silence*...*silence*...*silence*..."

I lay there with a shoulder beginning to cramp, looking at the images of spring trees in the plastic coverings over the fluorescent lighting above, and feeling a bit surreal. Am I really doing this? Am I really about to let them irradiate me? It's amazing what the desire for remission will allow.

The shoulder cramping got worse and when I pitifully and childishly asked "how much longer?" and was told "about 20 minutes" I almost had a panic attack. Yep, I'm a wimp. I tried to imagine I was lying in a grassy meadow, as the images of spring foliage above insinuated, but that was a joke. During the middle of everything it dawned on me that I'd given birth twice, without epidural, so surely I could do this. A little Lamaze breathing helped, too.

Finally, they got everything just the way they wanted, had finished the final drawing project on my topless chest, and it was time for my first treatment. This only lasted a few minutes and included something called a "bolus". A bolus, in this instance, is a warm wet towel spread over my chest during treatment. As it was explained to me, this "tricks" the radiation into thinking my skin is thicker than it is and will make my skin pinker so the doctor can actually see the effect on my skin. I get the wet towel treatment every third day.

The radiation itself comes from a rather large, robotic cyclops sort of machine with a long neck and large flat and round sort of eye with a large square pupil. As my table is automatically raised and moved toward the cyclops, the cyclops comes to meet me. It hovers around and over me, zapping me from above and both sides, and at intervals that I now have memorized. I know when the eye is right above me and I hear the long rhythmic whirring and tinking sound that it's almost over.

I see Dr. Ross once a week so he can make sure all is as it should be. Right now side effects are beginning to become more pronounced. Skin on my left chest area, shoulder, and neck is changing, both in color and texture. I also have a continual sore throat due to one section of my esophagus being hit with the rads. Not really feeling the fatigue yet, and I'm not planning to.

Compared to chemo, this is a cakewalk.

Daily treatments have become routine. I stay longer on Wednesdays to see the doctor, but otherwise I'm in and out without much ado. Enough time to grab the gown from my own personal cubby, disrobe, wrap up in the extra large gown, lock clothing in cabinet, and park myself in the waiting area. They usually call me back right away and off we go to Rad Land.

I have sixteen treatments to go, with weekends and holidays off, so I should be finished by the end of June. After that, the only treatment I will be receiving is prayer...a definite group effort. Thanks to all of you who are helping with that one!

Possible New Drug Combo for Triple Negative - Via Harvard Gazette

From The Harvard Gazette/Harvard University:

New Hope for the Cure
Drug combination targets aggressive triple-negative breast cancer

With currently available early-detection methods for breast cancer, many people can be treated successfully. But for the 20 percent of patients with so-called triple-negative breast cancer, the outcome is bleak. Now, however, researchers from Harvard Medical School (HMS) and Baylor College of Medicine have identified a critical molecular component to the disease, one that suggests potential therapies involving combinations of FDA-approved, readily available drugs.

“Whereas many basic discoveries have the potential to impact patients’ lives within 10, 20 or 30 years, this has the potential to impact patients’ lives within one year,” says Thomas Westbrook, formerly a postdoctoral fellow at Harvard Medical School and an assistant professor of biochemistry and molecular biology at Baylor College of Medicine since 2007.

The research was published on March 4 in the journal Cell.

Triple-negative breast cancer is an aggressive disease with few therapeutic options. Patients with such tumors can be treated only with chemotherapy. If the cancer spreads, the median survival rate is one year.

The complexity of triple-negative breast cancer renders it so difficult to treat. The disease is extremely heterogeneous, characterized by hundreds of genetic mutations. Without knowing the critical molecular switches that power this type of breast cancer, researchers have no way to develop targeted therapies.

The HMS-Baylor College of Medicine team reports that an enzyme called tyrosine phosphatase PTPN12 is knocked out in 60 percent of nearly 200 triple-negative breast cancers tested. This phosphatase belongs to a class of enzymes that keeps cell-growth pathways in check and cancer at bay.

The team identified the critical enzyme by looking in petri dishes for proteins whose absence caused normal breast cells to become cancerous.

“We were looking for genes that pushed the cells over the edge,” explains Steve Elledge, the Gregor Mendel Professor of Genetics and a professor of medicine at HMS.

One of tyrosine phosphatases’ primary jobs is to turn off another group of enzymes critical for growth called receptor tyrosine kinases. The researchers reasoned that, if they could identify the enzymes that were switched on in the absence of PTPN12, they could pinpoint critical drug targets that might be used to develop therapies for patients with triple-negative breast cancer.

To identify these proteins, the team turned to HMS Associate Professor of Cell Biology Steve Gygi. By taking a look at all proteins activated in cells lacking PTPN12, the researchers found two enzymes crucial for breast cancer’s progression, or metastasis, EGFR and HER2.

In addition, the team used biochemical methods to identify a third receptor enzyme, called PDGFR-b , that was also regulated by PTPN12.

These results collectively suggest that the improper activation of these three tyrosine kinases could be the major cause of triple-negative breast cancer.

“We’ve grabbed a molecular foothold in triple-negative breast cancer,” says Westbrook, who discovered PTPN12 as a postdoctoral fellow in Elledge’s laboratory. “We are now starting to understand the disease better. Even more important, we have a rationale for a combined drug therapy for the disease.”

Their idea: to treat the disease, turn off the trio of enzymes with drugs.

To test their strategy, the team took advantage of two drugs already being used to battle other types of cancer: laptanib (Tykerb), which turns off EGFR and HER2, and sunitinib (Sutent), which turns off PDGFR-b.

The team treated mice with triple-negative breast cancers with either sunitinib or laptanib, or both. In mice treated with sunitinib alone, tumors shrank by nearly 80 percent. But in mice treated with both drugs, tumors shrank by more than 90 percent — and life expectancy more than doubled.

These results suggest that sunitinib and laptanib (or similar drugs) together may be a promising therapy for people with triple-negative breast cancer. And because both drugs are already FDA-approved and sitting on pharmacy shelves, they can be tested immediately in these patients.

“This research underscores the relation of basic bench science to human health,” says Elledge. “If you know what’s driving the cancer, you can think about targeting that for therapy.”

The team hopes to launch a phase II trial for triple-negative breast cancer by the beginning of 2012.


http://news.harvard.edu/gazette/story/2011/03/new-hope-for-the-cure/?utm_source=alumniaffairs&utm_medium=harvardmonthlyemail&utm_campaign=april11&sms_ss=email&at_xt=4daf0fdaa1c99c77%2C0

Maybe I Need a Little Cheese With This Whine

I should be celebrating today, but I just don’t have it in me. This has been one long nightmare of a week, but I think I am beginning to emerge…very slowly. After the last blog post, it seems, I just went straight downhill…and stayed there. Too long for this impatient patient.

I have been a shadow of myself this past week. And I don’t mean like Peter Pan’s crazy mischievous shadow, I mean like the gloomy, wet, dark shadows we’ve been seeing around Northwest Arkansas these past few days. The kind everyone and their dog wants gone. The weather and my health have been a perfect pairing. And, believe me, I’ve been just about as pleasant to be around…just ask David.

Truly, I don’t think my body could endure another big chemo infusion. My final infusion of Gemzar is this afternoon, but the Cis/Gem combo is history. THANK GOD!! I think it just about did me in, and this past week was proof of that.

I have spent more hours in bed than I ever imagined possible. More hours sleeping, whining, and crying, too. My poor family. When my sweet mom-in-law called to check on me, I think she was pretty sure I was near death…and I might have agreed with her. Bless them all for witnessing my complete and total loss of dignity and not running for the hills. Families are good like that, though, aren’t they? I can’t imagine going through this without them, both near and far.

So, as I gradually emerge and begin to remember what being upright is like, I return to the infusion room this afternoon and get plugged in for the last time. I will not be celebrating, but I will be praying (hard) to never darken their door again (other than the random port flush). I will remember those who have been in that room before me and who will not be returning, through no choice of their own. I won’t be kicking up my heels as I leave that place, but I will be ever so thankful for living.

Now let’s just keep it that way.

And I promise…
…more cheese next time, and much less whine.

Cisplatin, Gemzar and Me

There is a slight possibility that you landed at this blog, not because you know me and are being a faithful friend or family member, but because you googled something cancer related…like maybe Cisplatin and/or Gemcitabine (Gemzar). Before I first began this regimen of chemo, I did the exact same thing...and a few times afterward.

So, I thought it would be appropriate to give a rundown of how the Cis/Gem combo has affected me, now that I am seeing the light at the end of this long, difficult tunnel.

As of today I've undergone 11 infusions since January. I've received these in 2 infusions every three weeks. Week 1 was the wicked infusion of Cisplatin and Gemzar (a full day), week 2 was the much easier Gemzar alone (about 3-4 hours), week 3 was recovery week...multiply that by 6. I have one final infusion of Gemzar, which will occur next week.

This chemo regimen is not typically given to fight breast cancer, but there is good reason for mine. Perhaps that will be a future blog post.

My first infusion and its aftermath has already been documented, so I’ll not go into that, other than to reiterate what I’ve said before…Cisplatin is sometimes jokingly called Sickplatin (if it's possible to joke about such a thing). There is a very good reason for this. I had one chemo nurse tell me she thought it was one of the top 2 or 3 drugs that was known for bad side effects. 

Right now I am feeling those side effects, both the residual and ongoing effects that come from months of treatment, and the short term nausea and fatigue that will go away in a few days (although I have read that fatique can sometimes take months to overcome). Since my final (God willing) Cisplatin infusion was the day before yesterday, I am chipping away at this post, one paragraph at a time. Hopefully I won’t say anything too confusing, but if I do I blame it on the Zophran and Compazine, my anti-nausea meds. Not only do they dissipate the nausea, but they also tend to dissipate the thinking. And then there's chemo brain...

As far as long term side effects, I’ve had a few...

Fatigue and Red Cells –
This, I expected. Doesn’t all chemo have fatique as a side effect? When I underwent my three (unsuccessful) treatments of TAC last fall, fatique was a biggie. So I expected the same for this regimen. In my case, this fatigue thing has gotten worse each time as my red blood count has gradually dropped. This has nothing to do with my changed diet and the fact that I am no longer eating red meat. I could be eating a side of beef a week and the red blood cells would still be killed off. Thank you Cisplatin and Gemzar.

This lower RBC count led to my first injection of Aranesp several weeks ago. After going home and googling this drug, I was shocked at its possible side effects and immediately put a nix on any further injections. To put it lightly, I was unhappy and frankly, shocked. (Look for a future blog/rant on Aranesp.) My boycott of Aranesp is what led to my first blood transfusion following my last Cis/Gem infusion. Blood transfusion I can do, Aranesp no.

The fatigue, however, was unbelievable. I learn best from actually experiencing something and my lesson from this experience is that our red blood cells are REALLY, really, reeeaaly important. Diminished RBCs leads to extreme weakness, dizziness, and shortness of breath, among other things. Standing in one place for more than 2 minutes (like brushing teeth or washing face) was extraordinarily exhausting. At my lowest point I remember asking David to check on me during the night and make sure I was still breathing. I just wasn’t sure.

White Cells -
On the other hand, my white blood cells (those important little things that battle bacteria and other invading nastys in our bodies) were kept up through a shot of a drug that I do approve of, Neulasta. I called this my golden shot after I got a look at the first bill. One little injection cost $3900! Thank goodness for decent medical insurance. I guess this crazy expensive shot is still cheaper than an infection leading to a hospital stay.

Swollen Ankles -
This has progressively gotten more pronounced throughout treatment. It typically appears toward the end of a cycle and stays for about a week. Watching salt intake, drinking plenty of water, and keeping feet elevated seems to help. Since Cisplatin could possibly cause kidney damage, they watch for swelling. Mine has not been terribly severe and they have done blood work regularly to check kidney function and everything seems okay, so I’m not worried. Also, Dr. Beck said that Cis/Gem (particularly Cisplatin) has a very high salt content (it is a platinum salt) so that doesn’t help.

Appetite –
Oddly, for about 10 days following the infusion, this teeters between nausea and the need to eat every two hours (even throughout the night). If I don’t get food in my stomach regularly, the nausea and overall bad feeling increases. I think a lot of this ravenousness is related to the steroid that I get during my chemo infusion (which has also been responsible for my flushed and rosy complexion for a couple of days following the infusion). Favorite foods during my worst days have been oatmeal and Ezekiel toast, vegetable soup, beans and cornbread, organic granola, omega 3 eggs (any form), sautéed spinach, sautéed broccoli, pad thai, tacos de pollo, and watermelon.

Bad Taste –
Something that almost all chemo brings is a bad taste in the mouth. I have always read that it is a metallic taste, but I have never experienced that. Instead, I get one horrible sourish, yuck taste in my mouth for a good 10 days following the Gem/Cis infusion. It’s sour, but not like I just ate a lemon pie sour. Not a good sour. More like I’ve been licking the floor of some hoarders kitchen. Really nasty.

Eating helps (until I stop), brushing teeth helps (for about 5 minutes), peppermint gum helps (until it starts tasting sour).

Way back when, I remember thinking…"A bad taste in the mouth? How bad can that be?” Well, it can be bad. I get tired of the just plain grossness of it. Gets old in a big fat hurry.

Ototoxicity –
Somewhere between the second and third round of chemo I noticed a nonstop ringing in my ears. You know, like when there’s a tea kettle going off somewhere way back in your head. For most people this usually lasts only a few seconds, only mine suddenly wasn’t. Then I started noticing certain noises irritating and almost hurting my ears...paper crumpling, pots and pans banging in the kitchen, dogs barking. When I was listening to NPR in the car one day I thought something was wrong with their signal, or maybe my speakers, and then realized it was my hearing! That’s when it hit me that the somewhat rare Cisplatin side effect of ototoxicity was not just knocking on my door, but had let itself in!

From what I’ve read, there is a good chance that this is irreversible, but not always, so I am praying that my hearing will improve over time. Or at the very least not get any worse.

Bruising –
Less than a week ago I noticed some serious looking bruising on the back of my right leg. Really serious…black and blue and about the size of my hand. Within that bruise were several lumps. Yikes! I am not comfortable with lumps. Then I noticed other bruises on my legs, almost all with a small lump involved. The blood vessels in my leg were leaking! What the heck? I’ve had this same thing on my fingers at times over the past few years and have been told by my family doc that it’s not uncommon and nothing to worry about. Lately, I’ve had a couple of ruptures on my thumbs. The legs, however, are something entirely new and unexpected…no where have I read of such a side effect.

Of course I asked Dr. Beck about this when I saw him this week. He checked these bruises and now diminishing lumps, then shrugged, said everyone was different and chemo affected each person in its own way. Apparently small outer blood vessels that happen to be leaking are okay, the opposite of blood clots…which would be much more concerning. My platelet level has been down, which does lead to bruising, so maybe that’s the reason.

Slow Motion Hair Growth –
One of the last side effects listed for my chemo regimen is hair loss, but I was told I would not lose hair. Been there, done that…don’t want to do it again.

I was happy to know my hair would return during this treatment. However, I know the growth has still been affected. How can I tell? I only need to shave my legs every other week, as opposed to my norm of once a day. So my hair is growing, but very slowly (and very curly…future blog post coming). This is a minor side effect, but still a side effect. I’m certainly not complaining about the minimal leg shaving, that’s for sure.

Chemo Brain –
This is one side effect that has been receiving a lot of discussion and study lately. I have become a firm believer in its existence. Now, whether it is a physical or more of a psychological problem, your guess is as good as mine. I can’t help but think that it is a combination of both. Being washed throughout with toxic chemicals multiple times cannot be good for brain cells. Also, the constant stress of medical appointments, missed work, financial issues, loss of control, fear of recurrence, chemo side effects, surgery side effects, and more can really do a number on one's thought processes.

I misplace things (sometimes very important things) much more frequently than I ever have, I find myself unable to think of specific (simple) words at the oddest times, I forget the names of people I’ve known for years, and I’ve found myself placing items in the fridge that belonged in a cabinet and vice versa. Oh, and if I tell you I'm going to do something, be ready to remind me a couple of times...don't believe anything I promise.

I pray this leaves as soon as all of this poison makes its way out of my body. I want my brain back!

So, that’s a rundown of the side effects I’ve experienced over the past 4 months. I'm sure I've left out something big, thanks to chemo brain. I know these side effects are different for each person, and I know there are people who will undergo treatment with Cisplatin and Gemzar who have almost no side effects. If you are one of the lucky ones, that’s great, congratulations, and praise God! If not, just know it’s temporary and take one day and one week at a time. Allow others to help you and if they don’t volunteer, then speak up and ask!

And above all else, may God bless you and be with you through it all.

Spring Fever Infected...or Affected?

Blogging is not for the easily distracted. Shame on me for being absent for so long! Spring and sunshine and warm weather have caught my attention and my head has been turned from this computer and regular updates. For that, I apologize. I didn’t really think it was a big deal until I started getting emails from blog readers and total strangers who were concerned about me! I guess disappearing from a cancer blog can look pretty bad.

So, to these lovely readers, I apologize. I am fine and chugging along with treatments. No surprises (unless you count that one blood transfusion), no bad news (really), just a very irresponsible and spring fever infected writer.

At this very moment I am sitting in a vinyl recliner upstairs at Highland's Oncology and receiving my final round of Cisplatin and Gemcitabine (Gemzar). Hallelujah! If I’m lucky I can at least get one blog post written before the pre-meds knock me loopy.

I will have my last official treatment of Gemzar next Tuesday, then see Dr. Beck two weeks after that and be set free! As he said, he’ll “sign me off”…whatever that means. I guess they won’t be renewing my contract. (and I am praying to God that they never do!)

But then I get to learn a whole new game called radiation. I’ll be changing coaches and teams and playing a whole new sport. This sport will have a much shorter season, but I’ll get to play it daily. Good thing is, the injury list is much shorter. Other than some possible serious sunburn, peeling, and itching, I’m thinking it’ll be a breeze. Plus, the fact that I have virtually no feeling in the area that will be irradiated will make any possible tenderness irrelevant. I consider that a mastectomy perk…the first one I’ve been able to think of. When life gives you lemons...

If all stays on schedule, I should be finishing up treatment by the end of June. Sometime after that I will be scheduled for removal of the other breast and reconstruction. I look forward to reconstruction, because to me, that means hope for the future and for a mostly normal existence.

Removal of my port will be a huge milestone, too. As thin as I am, it really shows up and changes scoop necked shirts from cute to just plain creepy, so the sooner this thing is gone the better! The nurses have loved it, though. (I really should post a pic.) Sadly, the port will probably stay until my next round of scans in about three months…just in case.

Thanks for the queries and concern at my blogging absence. I will try and stay focused and keep up a bit better. I do have a lot to say…all in my head. In fact, it's been piling up in there and I'm running out of storage space! If I could just dictate a blog, that might work.

More Scan Results

The weather today was cold, cloudy and damp, which perfectly fit how my body felt following yesterday's chemo marathon. It was a perfect day for laying on the sofa and attempting to watch movies (concentrating is more difficult than normal right now) or migrating to the bedroom for a long nap. Nausea is kept at bay with the help of Zophran and Compazine, along with eating as many small meals as possible. If I could just lose that continual bad taste in my mouth. As soon as I stop brushing my teeth...it's baaack.

While my outside wasn't looking or feeling too pretty, inside I was feeling pretty darn great. I received results from my MRI scans of last Thursday and was told "no evidence of malignancy". This has markedly increased my inner peace. Doctor Beck did mention things like excess water and "pockets" and what-not that weren't supposed to be in my hip area. Also something about a possible bony cyst. His hypothesis is that I had some kind of underlying condition that has been exacerbated  by the chemo...which was pretty much what I was hoping it would be. Arthritis I can live with. Bone cancer I can't. I do have the reports from the CT and MRI scans and, when I'm feeling like thinking a little harder, I will have to consult with Dr. Google about all that bony cyst and watery pocket business. Seeing how my deductible's been met, I may need to visit an orthopedic doc.

So, aside from feeling like a pathetic couch potato who just finished licking some hoarders floor, I'm a happy camper. I know that if the scan results had been bad, I wouldn't be feeling this sick. They would not have continued with the chemo, so, I'm actually glad to be sick. And I've got a happy dance just waiting to happen...just give me a few days.

Quick Update on Scans

CT scans on Tuesday went just fine, and, due to me nagging them yesterday about my mysterious hip pain, I found out the scans came out great! No evidence of malignancy. So yippee to that one! That means lungs, liver, and all my girl parts look fine! Hot diggity!

However, the CTs don't give enough bone info, and thus do not explain my hip pain, so they scheduled me to come in for MRIs today. I will have one of my pelvis and one of my lower back...each takes "about an hour". Looks like I'll be immobile and horizontal for a good portion of this beautiful pre-spring day.

Not sure when I'll get results, but will let ya'll know asap.

Scans Tomorrow, Prayers Today (and tomorrow, and the next day, and the next...)

I go for CT scans tomorrow morning. I already have my big bottle of barium sulfate waiting for me in the fridge, Mochacchino Smoothie (I am not making that up). Jealous much?

I think I'll drink it in a cute little mug and sprinkle a little cinnamon on top, just like the picture on the side. Or maybe not.

There will be three different scans, including chest, abdomen, and pelvic area. I hope this is enough. I'd also like a bone scan (not that I enjoy the idea of being irradiated), especially with this right hip, lower back, and now left knee pain I keep dealing with. Maybe the CT scans will show enough. Let's hope....but I still will ask.

Anyway, please pray for everything to be clear, that these scans look normal, and that whoever reads the scans does not miss something. I've had too many mistakenly hopeful readings, so my trust level for anyone who reads medical tests is pretty low (granted, it's been my pathology reports that have been unreliable - as in wrong...radiology reports have all been right on the money). Pray they read these scans as if they were their own.

If you want specifics, I drink my smoothie at 8:15 and scans are at 9:15.

I'll update as soon as I get results, which should take several days. Knowing me, happy results will mean a quicker update. Bad results will take some processing, as you can imagine.

Thanks to so many of you who keep telling me that you are continuing to remember me in your prayers, many daily! Wow! I am humbled by your steadfastness and diligence. Love and blessings to you all.

Walking it Off

Things are looking up as I begin to find myself again. The residual effects of the marathon chemo treatment from nearly two weeks ago are finally fading. I'm pretty sure they're getting worse, though, since it has taken longer to get to this point. This past week's "easy" chemo (gemcitabine only) made me sick, which it hasn't really done yet. Not sure what the difference was, other than I've become more of a wimp than I used to be. (One side effect of chemo: markedly increased wimpiness)

So I am catching up on all those things I've neglected...fun things like laundry, scrubbing tubs, dusting, vacuuming, mopping, and clutter control, not to mention cooking, shopping (grocery - not the fun kind), visiting my dad and taking more substantial walks with Cleo. She appreciates that, and so do I.

Walking is one of those things I have tried to keep consistent, even when I am at my wimpiest. I feel like it is one of the best things I can do to help eliminate these chemicals from my body. No matter how horrible I feel when I first begin a walk, I always feel so much better upon my return, both mentally and physically. David has been good to encourage me, or at least accompany me when I am at my weakest. He goes along to make sure I don't collapse...kinda like walking with a 90 year old woman.

For some reason my preferred walking time seems to be around 9:00 in the evening. I have discovered the fun of walking in the dark. It seems to be the perfect time to, almost literally, air out my head. The darkness and cold do wonders for a brain and body recovering from chemical poisoning.

Plus, and best of all, it's the perfect opportunity to talk (out loud) with God. With His stars and moon shining above and darkness covering my route, I can chat, praise, gripe, exalt, and even plead and beg without looking like I've totally lost my mind. I get some excellent devotional time in when it's cold and dark.

Cleo is the perfect partner for these outings. She has no problem with me chatting up God and never says a word about it. For years she has been my canine accountability partner, always encouraging me to get out and walk, and making me feel guilty if I didn't.

Now, even on my cruddiest days, she has proven to be excellent at following me around the house each evening and pleading for a walk (she knows how to give me "the look"). I cannot resist her; she seems to know what I need more than yours truly (although, I'll not kid myself - I do realize she does not do this for me).

She's a great dog to walk...very low maintenance. Requiring no leash, she follows my verbal commands well enough to make Cesar Millan proud. She's a Border Collie - that's what they do. She typically has a grand old time investigating the smells along the way. (The night before trash day is her favorite time. Apparently our neighborhood has some very fragrant recycling.)

So if you live in my neighborhood and have noticed a late night wanderer bundled in a big white parka, accompanied by a large black and white dog, do not be alarmed. It's just me, doing what I can to keep from falling completely apart. And if things are falling apart for you, or you've just had one of those days, I highly recommend it...physical and mental therapy at an unbeatable price. Get out that door and walk; I promise you'll feel better.




Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
Isaiah 40:28-31

Happy Sunny Thoughts and the Cancer Shadow

I know I seem to keep dropping off the face of Blogland, but I am still here, ticking along. It's much like how I've dealt with that infinite number of unsent thank you notes; I find that I have so very much going through my mind and so very much to say that I end up writing nothing at all. That is definitely the easiest way to deal with my myriad of crazy thoughts...just ignore them. Sadly, that doesn't make them go away, and so here I am, back at the ol' blog, typing them out for the world to see.

Currently I am recovering from my third round of Cisplatin and Gemcitabine. Nasty, nasty, nasty stuff, especially the Cisplatin. How do I know the Cisplatin is the worst? Because I have one week with only the Gemcitabine and that week is actually tolerable. The week following the Cis/Gem infusion, however, is one long, queasy, foul tasting, weak week. It's not called Sickplatin for nothing.

Of course, if it does its job, then bring it on...if not, then I've seriously wasted some precious time in the worst possible way. And that, of course, is the double edged sword of chemotherapy.

I'm still struggling with the emotional side of all of this. There are days when I feel fabulous and hopeful and those days are beautiful.

For example, about a week and a half ago a small miracle occurred here in Northwest Arkansas. Within about a six hour time span we received 2 feet of the most perfect snow I think I've ever seen. I felt like I'd gone back in time, and thus proceeded to wallow in some wonderful flashbacks of my days in Colorado, when I was young and vibrant and my life was in front of me. Endless possibilities (which did NOT include cancer, or any other debilitating illness, for that matter).

I LOVED that snow. I inhaled it, touched it, walked in it, listened to it, gazed at it, photographed it, and shoveled it as often as I could. I felt like it was a gift from God sent just for me. All those others who complained about it...so sorry.  It was MY gift. One last big snow! (Not meaning to be morbid here - cancer or not, the chances of me seeing another snow like that are pretty slim.) I even enjoyed the 15 below morning temp and managed a (very brief) walk during that early hour. (I don't know which was the bigger miracle - the snow and flash freeze temps, or the fact that it reached the 70s the following week.)  

Our pool in the midst of the storm.
Notice the dog's potty path to the right? That came in handy in this deep stuff.


Day 1: The snow stopped so we headed out. My girl's always game for a w-a-l-k.

Day 2:  7:00 am and 15 below. And no, I don't live in Wisconsin.

 

Sunrise and still 15 below.



Cold and early on Carley Road



For some reason she thought she should walk on the sidewalk.

I found another walking buddy.

Obviously, some kiddos in my neighborhood
could use more practice at this. 

I was immensely grateful that the miracle snow occurred during one of my good weeks. If it had come this week, I may not have noticed.

This past week is night compared to the prior week's day. That happy snow seems ages ago. As I type this, I must say I am sick and tired of being sick and tired. This week I have had two big choices in my life: the sofa or the bed. At the moment, I'm upright on the sofa. Whoop to that.

Now, I know that this will come to an end. If all goes as the last two rounds, in a couple of days I should be up and around and feeling more like myself.  So, yes, this will come to another end and I will have an all too brief reprieve when I can play catch-up on life.

But, as bad as all that seems, there is something that is concerning me even more.

As is the case with many women who have been diagnosed with triple negative breast cancer (at least according to the TNBC forums I've been reading), we tend to be Queens of False Alarm and somewhat hypochondriatic. Since TNBC, more often than hormone positive breast cancers, tends to quickly metastasize to other areas of the body, this is understandable. If you knew that your chances of developing bone, liver, lung, or brain cancer in the next few months were extremely high, wouldn't you be a bit nervous about those odd everyday aches and pains?

Well that's been me for the past few days. On top of feeling like I've had the life sucked out of me, I've been fighting one heckuva pain in my right hip. Since I have scoliosis, back pain is not an uncommon occurrence for me, but this is something new and different and, yes, painful. I am praying it's nothing...brought on by too much sitting or something equally dull. I'd happily take arthritis or bursitis or something that won't kill me, please. But each time I sit or stand or roll over in bed and feel that shooting pain, I am frightened.

So please pray that this pain is nothing. Pray that I am slightly crazy and am overreacting.

I will visit the oncologist this Tuesday and, of course, will mention this to him. I am already scheduled for chest, abdominal, and pelvic CT scans on March 1, so I guess we will find out after that. It would make me happier than 2 feet of snow to know I have been the Queen of False Alarms.

Jinx

After several upsetting, stess-filled, and sometimes nightmarish weeks, I feel like I'm back.  
...and I find myself almost afraid to say anything, lest I jinx things. 

I've been pretty verbal about everything going on over the past few months, and each time I get too happy or encouraged, that happy rug just gets yanked right out from under me.  I really hate when that happens...sick of it.  So that whole "jinx" concept keeps creeping into my thinking. 

I've always said that I don't believe in luck and am not superstitious, but maybe I'm wrong.  I think I do have superstition issues.  What is it about humans that we tend to do things like knock on wood, cross our fingers, wear our lucky underpants, or avoid things that might "jinx" us?  What the heck is a jinx, anyway?  I'm a Christian, for goodness sake.  I believe in God, in prayer (not the "Dear Santa"  kind, either), and in how Jesus Christ taught us to live.  Yet I still find myself afraid to say or do certain things in relation to what has happened in the past when I've said or done certain things.

Got that? 

This is how I'm thinking...
I've celebrated a variety of things concerning the treatment of this cancer in earlier blogs...and almost every time I celebrated the "good news", things later went south.  Pride goeth before the fall and all that, I guess.  Over and over that rug has been yanked, so, oddly, I've reached the point of being afraid to say anything.  Now that is superstition, if it's anything.

I've had so many twists and turns along this journey over these past 6 months, and almost all of them have been negative.  I am more comfortable being positive and optimistic, so in light of these past twists and turns, I find myself feeling more comfortable in silence.  I am not comfortable with the negative, to put it lightly.

It brings to mind the days when my boys were babies and I would, ever so carefully, put them to bed and then tiptoe out of the room, trying to be as silent and stealthy as possible.  Or maybe a better analogy is that of waking a sleeping giant.  Shhh...do NOT wake up this giant.

Right now, I feel great (until chemo next week), have been healing nicely from surgery, am eating healthier than I've ever eaten, am enjoying daily walking and talking with God (and Cleo), am sleeping well, and am educating myself on every possible thing I can do to beat triple negative breast cancer.  That's a lot of positive and, I admit, I feel slightly uneasy in putting those good things in print.  Please let this rug stay right where it is.  No more falling down.

Thank you for your prayers, encouragement, kind words, and unlimited love.  That is one thing that has always been positive.  You all are the best and there is nothing that can change that!  Praise God!

Oh, and...

Knock on wood.

This New Chemo is NO FUN (not that that's possible)

It's funny how this time last week seems like a decade ago.  Years.  Ages.

I am a different person than I was then.  Sickly and weak and dizzy and sometimes queasy.  I don't like this version of Patti, in fact, I'm sick of her.

I had my first round of my newest chemotherapy regimen on Tuesday at Highland's Oncology.  That evening I felt pretty normal and was so happy that I had not been given that bag of Benadryl that came with my three previous (and failed) rounds of TAC.  This round meant I spent 8.5 hours at the clinic with my precious son, Sean, my chemo buddy.  This was his first experience and his first observation was something to the effect of, "This makes me think of 'Breaking Bad'".  He was a great companion and didn't grumble once as our day lasted much longer than we thought it would.  He waited on me when needed and was all around great company.  I love that boy.

During this round I was given what seemed like endless bags of fluid, including Zometa (for bones), Emend (for nausea), Gemcitabine (for cancer), Cisplatin (for cancer), and plenty of saline before and after to flush things out (since Cisplatin can possibly damage kidneys).  I think there were other things thrown in there, but I can't recall what.

This was similar to the regimen recommended by Dr. Nagourney with Rational Therapeutics, following my tumor profiling back in November, only, apparently, quite a bit stronger.  I went in eager for the big guns and did not hesitate when I learned this would be considerably stronger. 

I held my own until about 10:30 the next day...when the train wreck happened.  Seriously, I was expecting a slow decline into feeling crappy, kinda like I did with the TAC, but no such luck.  Mid morning Wednesday - WHAM!  I went from cleaning the kitchen to, five minutes later, heading for bed and calling for help.  I was rocked with severe chills (as in entire body trembling), major nausea, and complete weakness.  I crawled in bed under my down comforter, fleece blanket, and anything else I could find, and remained there for the day, barf bucket at the ready (which I never had to use - I guess that was the extent of the anti-nausea meds...I kept my food down.) 

Thankfully, between my two sons, someone was here all day.  They were good to check on me frequently and make sure I didn't need anything.  JC later told me he was pretty frightened by the whole thing.  I guess it looked like mom might not make it.  But, of course, I did.  I was taking the Zofran that had been prescribed and later added another anti-nausea med.  By that evening I was running a decent fever and David called my oncology nurse, Shannon (we kept her phone busy that day).  I took some Tylenol and managed to sleep most of the night.

Since then I have not reached the same heights of sickness, but have been consistently weak, feeble, and dizzy (yes, dizzy).  I am counting this as day 4 following chemo and have read that Cisplatin can cause nausea for 5 days or more (Dr. Beck informed me that Cisplatin has been known as Sickplatin...an excellent nickname for a hideous drug).  Each day I hope will be the last day of this sick feeling and it just seems to be consistently bad...though nothing like Wednesday.  This has to end sometime, right?

Next Thursday I go back for more, though fewer, drugs. Gemcitabine only...should take about 2-3 hours.  I am praying I will be stronger by then and it will affect me much more gently.  I am also praying that my bloodwork comes back decent so they CAN continue this regimen.  As rough as this has been, I'm a bit worried about that.  I want to keep going.

So, this first week of 2011 has not been the greatest.  Maybe it helps that I barely know what day it is.  Obviously, I have not started back to work and I do not know when that will happen.  That's an entirely different category of concern.  I just keep imagining the future when I am healthy, hearty, and strong again...back at work...back to normal...and able to relate to those who are suffering through hell on earth.  It's a gift I never wanted, but one I expect to someday be thankful for.  I can do this.

"I can do all things through Him who strengthens me." Philippians 4:13

(Yep, that's the plan...I CAN, and will, do this, but not alone.  Never alone.)