Wednesday, October 20, 2010

The Makers of Abraxane - My Hero!

. . . I Received My Treatment!

While waiting for my insurance company to "review and approve" the new Abraxane chemo treatment I was suppose to have, the tumors were growing and the pain was getting much worse. I would cry at night when the pain seemed relentless and the pain meds didn't even seem to help. But the most wonderful news of all was that my Oncologist and his staff solicited the drug company who makes Abaxane and the drug company decided to cover the cost of my treatments while we wait for the insurance company to get off their duff.

When I met with my Oncologist yesterday, he couldn't praise the drug company enough for this compassionate and giving gesture. They will benefit from my treatment results which could benefit future pancreatic cancer patients.

Yesterday, I received my first treatment of Abaxane and it went SO much better than the prior chemo I'd been on for 8 months. I didn't have to have a lot of intravenous drugs pumped into me prior to the infusion... the infusion time was shorter... no pain the the arm where the chemo went in... and so far, I don't feel any horrid side effects. I'll have this particular chemo treatment every week for three weeks and then get the forth week off.

It is my Oncologists hope that this chemo will begin shrinking the tumors and I can feel some relief within the first two weeks. He also hopes that I can stay on it with positive results for even up to a year. But, he says, even a month of relief would be good. I pray for longer than a month!

I am very thankful to my Oncologist, his staff and the Abraxane drug company for allowing the opportunity for me to begin this treatment. Together, they are my hero's! I have so much more I want to do in my life and cannot imagine laying around lethargic and in pain for the rest of it.

Thank you to all who continue to send prayers. I am so grateful to have them!

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Monday, October 11, 2010

FDA and Insurance Companies Play 'God'

. . . "no, you can't have it until way say so!"

Expecting to start my new chemo treatment (of Abraxane) on September 28th, my husband and I were stunned to hear that I am now subject to waiting for all the red tape. While Abraxane is FDA approved for breast and lung cancer, it has not yet been approved by the FDA for pancreatic cancer. Google it for pancreatic cancer and you'll find studies have shown it has had good results. Thus, the testing has been done. But...FDA, dragging their feet, hasn't put it out there for use by doctors on their patients, yet. SO, our insurance company has to go through a review process whereby they are the decision makers on whether or not I get my much needed, grabbing-at-straws-now treatment! To top it off, they want to take their sweet time and have stated that a decision may be reached in about 3 weeks. If something works, why would they not let someone have it? Why let the person suffer in more pain...allow more damage to be done...or let the person die? Do they know that cancer doesn't stop growing to appease their schedules?

So, the pain progresses and I'm on a steady regimine of Advil. It doesn't quite stop the pain entirely, but anything stronger makes me tired, thus, all I want to do is sleep. I'm suppose to go back to my Oncologist on October 19th for the Abraxane infusion IF the treatment has been approved by then. I hope I don't end up in some insurance beaurocratic limbo, unable to get any treatment done while in the meantime insidious little mutinies are allowed to progress unchecked. Meantime, I feel like I have something stuck in my throat. Oh's a flippin' tumor!

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Sunday, October 3, 2010

New Tumors . . . New Chemo

New CT Scan Results

I went in to see my Oncologist this past Tuesday, September 28th to get the results of my CT scan and for another Oxaliplatin chemo infusion. As I had been experiencing unusual pain in my neck and felt a bit more fatigued than usual, I expected that the results would not be good. They weren't. The tumors that existed in my lungs are still there, some have grown larger AND I have 3 additional tumors . . . one in my neck, two in my abdomen.

My Oncologist took me off of the Oxaliplatin infusion treatments (which I've been having once a month for the past 9 months) as, apparently, they are no longer working. I'm tickled pink to be off that nasty stuff as the side effects were horrid. Beginning this coming Tuesday, I'm to go on another type of chemo called Abraxane. Doc says it's normally used for breast cancer but recent studies have proven it to be effective in the fight against pancreatic cancer as well. I sure hope so! Because of the fact that I've been on three different chemos now and this disease is still rearing it's ugly, demonic head...I'm losing hope. I'm glad, however, that my Oncologist hasn't given up!

As the pain in my neck gets worse each day; feeling like a knife stabbing into my neck with pain radiating up into my jaw and down into my lungs, I'm eager to begin this new chemo treatment. I'm also having problems with my larnyx as I sound very hoarse when I speak and it hurts in that area as well. At the time of my visit, my Oncologist didn't know what was causing that problem. I'm wondering if the neck tumor is pressing on my larnyx. hurts.

My Oncologist says that if the chemo doesn't work in shrinking the tumors, I'll have to have the one on my neck radiated. So...does that mean the other tumors will be left to grow? I have a feeling the answer is "yes". I don't want to reach this point! Dammit!

So, as I come to terms with the fact that this disease is progressing quicker now, I worry that I won't be around in a year's time. No fair! I have a lot I want to do! My children are taking this very hard. It is more difficult to watch my children suffer emotionally than it is for me to endure the physical pain from this disease. My brother and sister are worried sick, as well. I've always been the "hub" of my family since our Mother passed away in 1970. If my husband is stressed, he is not showing it. I continue to hear him say, "You're going to be just're going to live another 20 years". He's either in denial or he's hiding his concern in order to give me hope and support . . . but he's ALWAYS by my side with all I go through. Everyone handles their stress differently. I love my family SO much!

On a positive note . . . I'm hoping the new chemo does a great job and gets rid of the tumors! I have so many wonderful people praying for me and I appreciate every one. I'm working on a new afghan for Berlyn (my middle grand daughter) and still filling candle and soap orders. I'll be doing things as long as I possibly can!

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Friday, September 10, 2010

Polka Dots!

. . . My Newest Crochet Project!

I love to crochet! It's very therapeutic.

Awhile back, my daughter decorated my oldest grand daughters' room with pretty, bright colors and large polka dots on her closet door. I just finished crocheting this afghan this past week and I'm amazed at how well it goes with her room. All the colors and the pattern match perfectly! Done in granny squares, whip stitched together and several single crochet rows of colors for the edging, this is how it turned out:

I'm anxious to start another afghan. The next one will be for my middle sized grand daughter. She's very "girlie" so I'll do hers in a large shell pattern in shades of peach. I ordered the yarn last week and eagerly await it's arrival! Too bad the local stores don't carry a nice variety anymore. I'd have it in my grubbly little paws right now!

Have a lovely weekend, everyone! I've got some candle orders to fill . . .

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Saturday, September 4, 2010

Chemo Accumulation

. . . I'll Have Some Cheese With My Whine, Please!

Let me first say that while I realize that I could feel a whole lot worse, and likely will feel worse later on down the road, I'm still going to complain. Experiencing the deterioration of my body, loss of the ability to do things and losing the person I use to be is frustrating. Damn this cancer! Damn this chemo!...though, without it, I probably wouldn't be here today.

For the past 8 months, I've been on a regimen of monthly Oxaliplatin chemo infusions along with twice-daily doses of Xeloda chemo pills. Since my Oncologist reduced the dose back in March...and then spread the infusion regimen to every 4 weeks rather than every 3 (back in July), some of the side effects have become less of a problem. But, as the chemo continues to accumulate in my body, there are other side effects that have reared their ugly heads and become a problem. Before I get into those two issues, let me just say that . . .

My hair started thinning again back in June! I hate that!! (Okay...not a major deal but certainly makes me feel less of the person I use to be).

Onward . . .

Most annoying. . .

1) High Blood Pressure: I have never in my life had high blood pressure! In fact, I always ran a bit on the low side (117/74). I'm hitting numbers like 148/98 and 151/101 now. My nurse told me it was the chemo causing it. It makes my ears ring, my heart pounds, I get the jitters and bad headaches (that Advil won't even help). I find that if I stay away from salts and sugars, it's a wee bit less of a problem...but still a problem. So far, my Oncologist hasn't said how or if he's going to treat it. I have a CT scan this month. Perhaps he's waiting to see the results from that before he makes any decisions.

2) Cold Sensitivity: Oxaliplatin chemo causes neuropathy, whereby I cannot touch anything cold or eat and drink anything cold without experiencing pain, tingling and numbness. The pain is as if touching dry cold, it hurts. Eating/drinking cold things causes a shocking pain in the mouth and my esophagus feels as if I've swallowed two huge ice cubes whole. And when I say cold things, I mean anything below body fluid temperature. This side effect lasts for 2 to 3 weeks before tapering off. I've been dealing with this for 8 months but it's now progressing into another area of my body. My lungs hurt! What's happening now is that I get pain in my lungs whenever I'm in temperatures that go below 80. The weather here has been in the 90's and 100's so I turn on the air conditioning . . . and here it comes! The pain beats me down. I get short of breath and lose energy. I find myself laying down and burying my nose under the blanket (so I can breath my own warm breath to help the pain subside somewhat). Going to the grocery store, I come out of there with painful lungs. When it zaps my energy, I can't do much of anything. I went to my grand daughter's high school football game last night. The weather was gorgeous! A perfect summer evening (78°), no need to wear a jacket...and yet my lungs began to hurt. They still hurt today. Advil is the only thing that makes it completely go away...until I'm in another cold area. Truthfully, I'm not sure if it's the chemo causing this problem or...maybe the lung tumors have grown. I can't imagine it to be tumors, though, as the pain is not always there. I'll find out on Sept 28th when I see my Oncologist.

Thank you for letting me rant, whine and complain. I do realize things could be a whole lot worse. But, I'll tell you...the lung pain and lack of energy sucks!

What's next:
I'll have a CT scan on September 9th and see my Oncologist on September 28th to get the results. At best and with hope, prayers (and luck?), maybe the tiny tumors that were in my lungs have gone away and I can finally go off chemo.

Meantime:I'm still doing as much as I can...going places, cooking, enjoying my crafting (crochet, candle and soap making). Life is still good :-)

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Thursday, July 15, 2010

~Marilyn's Silly Website~

. . . IS BACK!

In 1998, I began working on some personal web pages simply for the fun of it. I love being creative and making people smile. My best friend, Fayezie (a talented cartoonist, poet and English teacher!) would encourage and inspire me. Sometimes, as I would draw and/or write, I'd sit here laughing out loud and couldn't wait to share my creation with her.

After creating several pages, I put them together into a website, called it "~Marilyn's Silly Website~", sent the link off to some friends, submitted it to search engines...and within a month, it had taken off around the world! I was astonished at the number of visitors I was getting and the amount of email I recieved complimenting my site. It went on and on for 10 years!

In late 2008, the hosting company went out of business and ~Marilyn's Silly Website~ was no longer on the Internet. Since then, I've had several requests to reinstate the site. I've finally found the desire, energy, time (and a good hosting company) in order to do that.

Please come and view it! You won't be sorry . . . you'll leave with a smile on your face. In my Frivolous Frolics Cartoons section, you'll find my original cartoon artwork and humorous poetry that I love to write. In my Java Applets section, you'll find serenity in the lovely java applets I enjoyed coordinating with poetry and music. In my Holiday Pages section, you'll find delightful holiday pages displaying adorable graphics, some of my cartoon drawings and humorous story line poetry. Visit my Seasons Pages for a cheery, captivating mood of each of the 4 seasons.

We all have an inner child. Let yours come out for some fun today! I hope to see you at ~Marilyn's Silly Website~.

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Thursday, July 8, 2010

Living With Cancer & Chemo

Thought I'd better jump in here and post something. The more time slips by (and oh!'s flying so fast!), the harder it is to post since it feels as though there is so much to catch up on. Actually, not really. Here's an update:

The radiation therapy combined with chemo has helped my hip immensely! I have no pain and I'm walking normal. A CT scan in May revealed that the tumor in my hip had shrunk.

As mentioned in my prior (February) post, I was to undergo a series of Oxaliplatin chemo infusions combined with Xeloda chemo pills in this manner: Infusion of Oxaliplatin every 3 weeks and a twice-daily dose of Xeloda pills (3 in the morning; 2 at night). Then, a glorious week break from all chemo before starting over. (Oh! I love those weeks off!).

Then I hit a bump in the road. In March, after a chemo infusion, I spent the next few days struggling with intestinal pain (so bad, I could hardly walk or stand), no energy and a high fever. The fever climbed each day...beginning from 101 and up to 103. My daughter took me to Emergency on the 4th day that followed the chemo infusion. I was hospitalized for a week and put on 3 different antibiotics because of an intestinal infection. Apparently, my intestines were extremely swollen and inflamed. My Oncologist thought that chemo had something to do with it so he gave me a month off (with no chemo..yay!) and reduced the dosage for the following treatments. While in the hospital, I had another CT scan which revealed that the chemo wasn't working (yet). Not only were the tiny tumors in my lungs still there...but three of them had increased in size. I didn't really want to panic yet since I'd only had two chemo infusions...but, tired of the chemo, tired of the cancer, tired of feeling awful, tired of making the hospital a part of my life, tired of not being able to make future plans...I wanted to hear good results.

March - April: The reduced dose of chemo included a lesser dosage of Oxaliplatin (I don't remember the percentage in which is was reduced)....and reducing my Xeloda pills to 2 in the morning (rather than 3) and 2 at night. Since March, my intestines are much more comfortable (no pain, no pressure) and I've had no problems with fever. But, I was on a roller coaster of emotions with not knowing if the chemo was going to work at all since the CT scan I had in the hospital was not good news.

May: In May, I had another CT scan. Comparing it to the one that was taken in March (while I was in the hospital), it showed that the tiny tumors were still tiny AND that the 3 larger tumors had shrunk. This news made my husband and I (and my doctor!) ecstatic! The chemo (even at it's reduced state) WAS working! Doc said that even if the tumors remain tiny and don't grow...that's a good thing. Bring it on! I can do this! Of course, I know that I can't be on chemo forever. It builds up in the system and one day, the body will either no longer tolerate it...or the chemo will cease to do good work.

June: Simply went by quickly!

Now July: . . . and speaking of "chemo building up in the system" . . .
In seeing my Oncologist this week for my routine appointment (just prior to my chemo infusion), we discussed the recent additional side effects I've been having. Along with the usual two weeks worth of cold sensitivity whereby I cannot touch, eat or drink anything cold without it causing pain (which is a total pain in the butt!!).. and the 3 days worth of fatigue that follows the infusion....I'm now starting to lose my hair again (it's falling out strand by strand). I also have a numb feeling in the tips of my fingers and electrical buzz jolts to the bottom of my feet. And also, I'm feeling sleepy most of the time (elevated fatigue). These side effects are not going away. This is a result of the chemo building in my system. If left unattended, it could become toxic. So, my Oncologist decided to spread my chemo infusions out. Now, instead of having the infusion every 3 weeks, I'll have them ever 4 weeks. I'll still take the Xeloda pills for two weeks (same reduced dosage). Thus, I get TWO weeks off (free from all chemo!) rather than just one. And, I got this week off, too. I'm so thrilled! I really like not having to be on chemo! And I hope it stops the additional side effects. I'd like to keep my hair (since it grew back in nice and thick) and I surely don't want to end up with permanent neuropathy in my hands and feet.

I still take things day by day, trying to live as though my life is normal. But it's certainly not like it use to be. I know my energy limitations so I don't get to do as much as I use to. I know my intestines now (due to the whipple surgery combined with the effects of chemo)...I just try not to go places until after 11am. I find joy in small things and I appreciate and thank God for each day that I wake up with no pain and enough energy to do the things I need to do.

What's Next? I will have a CT scan in September to see how things are doing. Hopefully, I'll be told that I'm in remission. Doc said, "It could happen." I pray for this!

Thank you all for your continued prayers! I know they're working as I have many, many good days. I hope you all are having a wonderful Summer!

Aroma Fields Candles & Bath

Tuesday, February 9, 2010

The Cancer Returns

. . . Shattered Dreams

I was looking forward to getting my scheduled, routine CT scan out of the way so I could continue to go on and enjoy good health and glorious life. It was scheduled for January 13th. Since I felt pretty darn good, I had no reason to believe that it would be anything but great news.

About mid-November, my left hip began to hurt. This was nothing unusual as each winter season, a wee bit of arthritis in my joints (whether shoulder or hip) would temporarily ache. Normally, I could increase my movement (exercise, stretching, walking) and the pain and mobility would improve . . . but not this time. Maybe I was just getting older and it wasn't going to go away this time (so, I thought).

After having my CT scan on January 13th, I went in for my scheduled visit with my Oncologist on the 14th to get the results. He shared with me that, in reading the results of the CT scan, he was pretty positive the cancer had returned/metastasized and scheduled me for more tests. I returned on January 18th for a bone scan and a CT scan of the chest. . . and returned the next day to get the results.
Confirmed: I had tiny tumors throughout my lungs and a 2cm tumor in my hip bone. Hubby and I were devestated. Hope for being in the 20% group of pancreatic cancer survivors was gone. The barbaric whipple surgery and grueling follow up chemo and radiation treatments I had previously undergone were not my cure. I would now battle this disease until it took my life . . .

Radiation Thereapy:
The radiation therapy started on January 25th, just about the time I could no longer bare the hip pain. I couldn't sit longer than 10 minutes without the pain bringing tears to my eyes...and walking was very painful. I underwent 2 weeks (10 days) of radiation therapy to my left hip. By the 2nd treatment, the pain was better. The hardest part of this treatment was going up to the hospital each day as I was once again feeling like City of Hope has become my 2nd home again. The treatment ended February 5th and, though I still have some pain and walking is still a problem, the Radioly Oncologist told me that it will continue to improve.

My first infusion of Oxaliplatin was on February 2nd. I'm given a 30 minute infusion of Zofran prior to this chemo to help with nausia. The infusion of the Oxaliplatin was painful. It lasts for two hours and about half way through, my arm felt like tiny cactus thorns were piercing the skin all the way up to the bend in my elbow. The pain from that is better but hasn't completely gone away. Because the most significant side effect of this chemo is sensitivity to cold, the nurses gave me heavy gloves to wear and a blanket when I left that night. I was to wrap the blanket around myself, brining it up to cover my mouth so I wouldn't breath cold air. Anyway, I looked like Darth Vader. For the following 5 days, it was a learning experience for hubby and I as to what things are cold and would cause pain to the touch. Touching the toothpate tube, walking on cold floors, touching tap water, pouring shampoo into the palm of the hand, grabbing the tub of butter out of the refrigerator (oh so much more!) . . . it's all like an electrical shock. One takes a lot for granted!! I had to heat my water to just above room temperature in order to drink it without pain. Warm water tastes gross! Another side effect I experienced was shock to my jaw every time I would eat or drink anything with flavor. OUCH!!!! After a week now, these side effects are beginning to diminish (thank goodness!). But, of course, I get the usual gut pain and diarrhea. I will go to City of Hope every three weeks for an infusion of Oxaliplatin and have to do this 4 times. My Oncologist said he would slow down the infusion (making it a 3 hour infusion rather than a two hour) so that it would be less painful and the side effects not so severe.

Along with the Oxaliplatin infusion, I have to take 3 tablets of Xeloda chemo pills each morning and 2 at night. This I do for two weeks and I get the third week off. Prior to taking these pills, I have to take Zofran to ease the nauseousness.

Day By Day . . .
As the side effects wear off, this is doable. I can still perform normal, daily activites (though my hip still gives me problems). I'm certainly NOT at all pleased about having to take so many pills and that my body is, once again, being invaded with a poisonous chemical. Best case scenerio is that, when finished with this treatment, years will go by before the cancer returns. I take each day as it comes . . . and my hubby and children give me the ability to have the strength and courage I need to move forward with hope!

Aroma Fields Candles & Bath

Thursday, December 31, 2009

Ringing Out The Old

. . . and what a great Christmas season it was!

I thoroughly enjoyed this Christmas season! Hubby and I got an early start on our Christmas shopping but, even at that, there was the usual last minute rush of Christmas shopping, wrapping, baking, shipping that each year brings. I guess it wouldn't be Christmas without it.

Just prior to the holidays, I reopened my Aroma Fields Etsy shop and also updated and reopened my boutique website at Aroma Fields Candles & Bath at I had missed making my products and shipping them to customers and figured that if I could fill a few orders now and then throughout the holiday season, it would really make my holiday shine. To my surprise (and delight!), the orders poured in throughout December and there were certainly more than I ever expected. What a wonderful way to end the year!

My hubby also had a total knee replacement on December 1st. He's been home recuperating since and is making terrific progress. I'm eager for him to completely heal so I can see him walk normal again and without pain. It's been a long time. He's certainly feeling productive now and wanting things to do. Today, he went out to the garage and made a 2 pound soap loaf mold out of wood for me. So sweet! I can't wait to use it!

I'll be getting a routine CT Scan on January 13th to find out how I'm doing...and, of course, I'll be praying that the cancer is still gone. Every day of good health is a gift I've been given.

And, as this day draws to it's close, my wish for everyone for the new year is to have good health, much happiness and that every day brings a new cherished memory. We'll be sitting in front of the television tonight watching the ball drop in Times Square in New York City. And as the clock strikes the midnight hour, we'll ring out the old year with a kiss and welcome the present year with open arms, with eyes filled with new dreams and hearts replete with new expectations.

Happy New Year!

Aroma Fields Candles & Bath

Tuesday, November 17, 2009

One Year Ago Today

. . . Reflect And Rejoice

I cannot let this day go by without acknowledging that one year ago, on this date, I was undergoing an 8 hour surgery known as the whipple. My husband, children, grand children, older brother and sister were there. We all caravaned up to the hospital that morning. Upon being called into the pre-op room, I gave each one of them hugs. Prior to the surgery, we were told that, upon opening me up, the surgeon will see the extent of the cancer and determine if the surgery could even be performed. Thus, we were all on pins and needles as to whether my life could be saved. The passing of my younger brother just 15 months prior weighed heavy on my mind. He had passed from stage 4 duodenal cancer. He was to undergo the whipple surgery but, upon opening him up, the doctor discovered that his cancer was too advanced. His was stage 4 and he was given 6 months to live. I watched him die. Was it my turn?

When I opened my eyes, I saw the loving, smiling faces of my family as they leaned over me. The first thing I asked was, "Did I get the whipple surgery?". They told me I had. The cancer was caught in time.

I woke up early this morning reflecting on that day and the two months that followed. Complications such as infection and leakage (of organs that were surgically re-plumbed) caused my stay in the hospital to exceed the 8 days we were orginally quoted. I was there for 32 days. Fortunately, I was able to go home in time for Christmas, though not able to really enjoy it. I ended up back in the hospital only after having 5 days at home. My digestive system wasn't cooperating. It didn't know which direction things were suppose to go. I felt so horrible, I remember telling my husband that "no one should have to feel like this..ever!". So, after another week in the hospital, I came out more able to adapt.

It's been a year now and, after going through the follow up chemo treatment and it's icky side effects, doctors visits, tests, chemoradiation and more side effects (I'm still itching all over and have to take medication every 4 days to make it stop) . . . I'm very thankful to the doctor who saved my life. Or, at the very least, gave me a longer life to live than what would have been. I'm certain that my guardian angel (my younger brother), had a hand in it, too. Pancreatic cancer is usually caught too late and, I believe, my guardian angel allowed me to feel the pain at an early stage so that I would see a doctor and could be given the chance he never had. I love you, Art.

I'm truly blessed.

This holiday season, I'll be cooking Thanksgiving dinner, shopping for Christmas gifts, wrapping, decorating, baking goodies, making some handmade (crocheted) gifts, working on my little candle/soap business . . . and enjoying the full festivities in good health. I hope your holiday season is wonderful, too!

Aroma Fields Candles & Bath