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~

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 yes....it's a flippin' tumor!

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

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. Anyway...it 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 fine...you'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~

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 ice...so 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~

Living With Cancer & Chemo

Thought I'd better jump in here and post something. The more time slips by (and oh!...it'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!..how 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

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.

Chemotherapy:
Oxaliplatin:
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.

Xeloda:
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

Back To Business

. . . Because I Can
. . . . Because I Want To

As most of you know, I had to shut down my little candle and soap business due undergoing cancer surgery, recuperation and treatments this past year. I've been blessed with much better health and, while I feel terrific and am consumed with the need to be productive, I've reopened my online business locations. I'm excited to be back to making great smelling, all natural products and, while I'm at it, my home smells fabulous!

You can now find me at Aroma Fields Candles & Bath and Aroma Fields Candles & Bath at Etsy where I offer my handmade, clean burning, highly scented soy container candles, wickless candles, tarts and tealights ...beautiful, ambient, scented palm wax pillars ...handmade, skin-loving, all natural goat milk soaps (scented and unscented) in bars, guest and gift soaps ...and lip-a-liscious, all natural, handmade lipbalms. I carry tart burners, candle warmers and gift sets at Aroma Fields Candles & Bath

For those who come to my blog to read only about my cancer realted health updates, I will continue to post them as ongoing tests are performed and/or any new health issues are discovered. I realize that the information can benefit some who are going through (or have a loved one going through) the same thing. Please, feel free to side-step the posts that are relative to my online boutiques as it is not my intention to peddle my products to you.

May we all enjoy a blessed holiday season!

Aroma Fields Candles & Bath

Follow Up

. . . ending on a positive note!

After my surgery and throughout the past 10 months, I would regularly meet with my Oncologist and, although he would always tell me that I looked great [considering what I'd been through], he would consistently relate the depressing statistics of this horrible disease. I would long for some hope; something to let me know that there just might be a chance that I could end up in the 20% group who survive this cancer. I understood that he could never obligate himself to predicting a positive outcome...but how hard would it have been to say that "yes, there is always a chance you could beat it."?! During one visit, he even went so far as to tell me that, in the end, I'll readily accept death. Eeeeeekkk!! At the end of each visit, I'd head home with a heavy cloud over my head. It was difficult to thwart the desire to just curl up on my bed in morbid depression, gazing out my bedroom window at the breeze blowing the graceful trees....thinking that there was no doubt I'd be leaving this beautiful life soon. My family was wonderful in helping me to gain back my positive attitude. It normally took about 3 days. But there was always that lingering death sentence echoing in the halls of my mind.

With the completion of my treatments, I was due to see my Oncologist for a follow up this week. Knowing that this would be the last time I'd see him (or any other doctor) for quite some time, I didn't want to leave with that heavy, dark cloud again. I didn't want to go home in depression and live the rest of my remaining life never able to plan ahead, always hurried to finish a project for fear it would never get done, looking at my son and knowing I'd never meet his bride or see his children...and trying to accept the idea of death......I just didn't want to live like that! I was determined to tell my Oncologist that I wanted (desperately!) to end this visit on a positive note....and I would tell him why it was so necessary. Sometimes, doctors (brilliant as they may be) don't realize that their bedside manner just plain sucks!

On Tuesday, this week, I visited with my Oncologist and it was very different than anything I'd experienced. He read the results of my blood work and told me he was delighted at how good they were. He shared with me that I'd done extremely well through the treatments over the past several months. He gave me the impression that most pancreatic cancer patients don't make it through the treatments without having the cancer come back. I was already an exception. For that, he said, he held more hope for me than normal. He shared with me about an 80 year old patient who was also at a Stage 3, had been through the same surgery and treatments as I and who is already 3 years in remission. All of this...every bit of it!...was fabulous to hear! I left there with wings on my feet, ready to take flight and LIVE!
I can now feel that if I spend money on some new clothes, it won't be money wasted. I can get a cute hair cut to make the short re-growth (from the loss of hair due to chemo) match up more to the long strands that I didn't lose. (Yes, there truly IS a strong resemblence to Bill the Cat!). I can now buy new prescription glasses so I can SEE!! The medications over the past year have caused my vision to weaken horribly. I have hope that I will be able to see my son get married and to be the wonderful Dad I've always known he'd be. And I'm so very pleased that my family has this wonderful news so that they no longer have this stress in their lives.

What's Next:

I'm looking forward to this horrible head-to-toe itching to go away! It's an allergic reaction to the Xeloda chemo pills I had to take. The medication they gave me to eliminate the itching (Lord, I hate medications with a passion!) makes me very sleepy but gets rid of the itching for about 4 days..then it comes back. The doctor said that eventually, the itching will stop. I hope so!

Also, I'll be meeting with my Oncology Surgeon on November 5th to discuss fixing the incisional hernia that developed after the surgical site healed. It's uncomfortable. Sometimes, it feels like I'm carrying my stomach outside of my abdomen. Ugh!

And then...I'll get a CT scan in January to see how things are going.

It's all good :-) I appreciate all the emails, support and prayers so much! Please keep them coming...they are obviously working!

Aroma Fields Candles & Bath

Chemoradiation - One More Day

. . . Removing My Last Training Wheel

Though I have one more day of radiation treatment to go, I thought I'd post this update today since 1) I have more time on my hands today ...and 2) because tomorrow will be no different than any other treatment day except that it's my very last.

I've spent the past 5 weeks taking two Xeloda chemo pills each morning after breakfast...(and I'd put off breakfast as long as I could because I did NOT relish the side effects of these nasty pills!). In the afternoon, I'd drive 30 minutes to the hospital for my radiation therapy. After dinner, I'd have to take 3 more Xeloda chemo pills. I did this regimin 5 days a week...and got to recuperate each weekend.

How was the radiation? Laying on the hard table with my arms over my head (holding onto two cold, steal handles), the table automatically slides into
a small tube that encircles the area to be treated. Then the radiation starts. I can hear the machine churning as it goes around my body throwing it's piercing rays through my abdomen and back. There's no feeling to this, however. As I lay there in the tube for the 5 minute treatment, I pray that this will be the very last treatment I'll ever need to have. I pray that this cancer never returns. The side effect from the radiation are minimal but enough to keep me homebound as it affected the intestinal tract and stomach. In the evening, my stomach would feel like it had been tied in a knot and the build up of gas was enough to blow the paint off the walls. (Okay...I didn't want to go that far...but if someone going through this is looking for info, they may want to know that their side effects are a normal part of this treatment).

How was the Xeloda chemo? The side effects from these pills are cumulative. In the beginning, I experienced headaches, nauseousness, moodiness, a tired/sleepy feeling and I felt withdrawn. It was doable but with an effort to stay cheerful. As each day progressed, the tired/sleepy feeling became more intense.
Eventually, I even had to give up doing my crochet as I couldn't concentrate on the pattern. I wasn't able to keep up with responding to emails I had recieved from caring friends or phone calls from loving relatives. At the beginning of the 5th week (last week), I was extremely tired, very moody, not much of an appetite and an overall feeling of "I just don't freakin' feel good!".... my hands and feet began to burn, tingle and itch...and the horrible itching spread over my entire body. The more I scratched, the deeper the itch dove causing it to itch even more. I called the doctor who told me to go off the pills. It's been 4 days since I've been pill-free and I'm still itching, though it doesn't seem to be quite as bad today. The great news is that I no longer feel tired, nauseous, moody or withdrawn. I'm nearly back to normal and I can't begin to tell you how good that feels!

I will have a CT scan in one month to see how things look.

Yes, tomorrow is my last day and, although it will be no different from the past 5 weeks, I already feel a sense of freedom, renewal...and anxiety. I have to learn to live my life without the fear of this cancer returning. That's going to be tough. Maybe without the therapies in my face each day, I can focus much more on other things. Your prayers are still so very appreciated!

Aroma Fields Candles & Bath

Over My Dead Pancreas!

... Give Me More Health Problems...NOT!

Prior to beginning the radiation/chemo, which is the next phase of treatment, I met with the Radiologist Oncologist for a consultation.
When he shared with me that he was going to radiate my entire (remaining) pancreas which offers a guarantee that I would become a moderate to severe diabetic, I froze in my chair. Hell no! I put the treatment on hold while I took the time to talk with other doctors. Truly, in all the research I've done, I've never found any incident where the outcome was as drastic as what he was about to bestow upon me. Further, I was consistently finding information stating that radiation therapy was controversial; that it's benefits are so minimal that Great Britain had discontinued it's use for pancreatic cancer treatment.

I realize there are others in worse condition than I...those who would allow their pancreas to be fried and fed to the neighbors dog for a chance to live a few extra years. But what I'm discussing here is specific to my situation...someone who has been given the gift of life of a few more years OR, by the grace of God, may end up in the low percentage of survivors who live well beyond 5 years.

In meeting with my Oncology Surgeon, he shared that radiation therapy, in fact, not only offers minimal benefit but in some cases, can make things worse. He talked with the Radiation Oncologist and insisted that he did not want me to become diabetic, given the very high risk that this cancer will return and quality of life is a factor. He does believe that we should do all we can as it is a standard therapy for pancreatic cancer in the United States (which is much lacking in current research!!). So now the radiation will be isolated to the surgical sight of the pancreas only. This will offer a much, much lower risk of becoming diabetic.

I'll now take this therapy and it begins August 17th. Even though the statistics dictate that this cancer will return, thus, my prognosis isn't very good, there's a 20% chance that I could survive this and live a long life. The 20% group of survivors had radiation therapy...I'll follow the herd. I wouldn't want to end up with the cancer coming back and wondering "what if...". You know, that 20% group is there for a reason. I plan to be part of it!

Aroma Fields Candles & Bath

Over One Hurdle

CT Scan Results

After finishing the 6 month Gemzar chemo treatment, I had a CT scan yesterday to learn how well (or not) I'm doing. Today, I met with my Oncologist to get the results.
He explained to me that if the cancer were to return, it would return in the liver or the lungs. The CT scan showed that all was clear, I'm cancer free. While a small (1 cm) lesion showed on the body of the pancreas, my Oncologist doesn't think it's anything to worry about. He shared with me that it's rare that pancreatic cancer would return in the pancreas.

Anyway, I had a feeling I would get a thumbs up on the test results as I've been feeling great and gaining weight quite readily the past month. So, today I'm cancer free and I'll take each and every day, one by one, as a special gift.

WHAT'S NEXT: As another precaution to keep the cancer from returning, I'm suppose to start radiation/chemo (combo) treatment within the next couple of weeks.

Now...back to the sewing machine!

Aroma Fields Candles & Bath

Final Chemo Infusion Today

...One Training Wheel Removed!

It surely goes without saying that I am absolutely thrilled that today I recieved my very LAST Gemzar chemo infusion! To a point, it's bittersweet. While I'm glad to no longer have the weekly, painful iv, burning chemo infusion and icky side effects...I feel vulnerable. It's as if I've lost one training wheel that was keeping me upright and stable and now thrust into being more on my own to accept whatever will happen. But I'm still very excited and thankful to have it behind me!

The nurse I had today told me I'd already been blessed. She shared that she rarely sees pancreatic cancer patients in the chemo infusion room because, normally, pancreatic cancer patients are diagnosed too late for any treatment to be helpful. She said that I'd already been given a miracle. I sort of felt that way early on....as if my deceased younger brother (who passed from duodenal cancer just 15 months prior to my diagnosis) had a chat with God to insure that I'd receive the chance he never got.


After my infusion came to an end today and to my surprise, all the nurses that were on duty (and in the past 6 months, I got to know all of them) came into my room playing tambourines, singing and congratulating me as one placed a "Distinguished Patient Award" (pictured) around my neck....something I'm sure all patients receieve upon completion of a cancer treatment. It was a sweet moment and one I'll never forget. I recieved lots of hugs from them and thanked them for their warm care...they were SO awesome!

I have a CT scan scheduled for the 27th that will show how well the chemo has done. Then, I'll be starting a chemo/radiation therapy treatment within the next month that will last 5-1/2 weeks (daily). This is my other training wheel. One day, I'll be riding through life, stable, sturdy and free.

Thank you for all the prayers, positive thoughts and caring emails!

Aroma Fields Candles & Bath

A Week In The Life Of Chemo

...AND RECUPERATIVE STUFF

With five months of Gemzar chemo behind me and only one more month to go (horray!), I thought I should log my experience with this phase of treatment.

Each Tuesday, I go down to City of Hope (cancer hospital). Hubby is always with me and is my biggest cheer leader. While I'm there, my blood is always drawn and analyzed prior to being hooked up to an iv. Doctors want to make sure that my body is continually strong enough to endure another round of a poison (chemo) invasion. An hour usually goes by (or more, if they are running behind) while my blood work is being analyzed and sent to the chemo infusion staff.

In the chemo infusion room, having the iv put into my arm is stressful as I never know if the nurse I'll get has the knack for finding a vein. So far, I've been hurt twice to the point that the pain brings me to tears and wish this was all just a bad dream. It's those times that make me think that with all that cancer patients have to go through, one would think that the hospital would make sure to place nurses who are efficient with iv placement into the chemo infusion area so that patients don't have to endure more pain than necessary. And it's those times that I ask to have someone else step in to do the work...and they're usually pretty understanding about it. Once hooked up to an iv, I receive a 20 minute infusion of Zofran...a medication that reduces nausea; a side effect caused by the chemo. And finally, I'm hooked up to the bag of chemo. Mine is Gemzar, a milder form of chemo than most and a 30 minute infusion. I look at the clock to mark the time (...by now, I just want to go home!) ...and then I try everything possible to stay distracted. I feel the Gemzar going into my body. It's so cold, it burns. Even though the nurse puts a warm pack on my arm, I ask for an additional warm blanket. The warmth sooths the painful, burning Gemazar. Once finished, removing the iv is quick and painless. I feel physically drained from the stress of the whole process and can't wait to get home.

Through it all, I'm friendly and pleasant with the nursing staff. After all, I can only imagine how their days go having to deal with sick, (even dying), depressed patients (bless them all!). I have made friends with several people on the nursing staff and I can see it makes a difference to do so. They are glad to see me and some greet me with a hug. Some pass by my infusion room (where I'm hooked up to an iv) and stop in to chat.

For the following two days (after my chemo treatment), I have to go to City of Hope for a shot called neupogen. It's to raise my white blood cell count so my immune system isn't compromised from the chemo. Thus, I'm devoting 3 days a week to hospital visits.

SIDE EFFECTS:
Wednesday (the day after my chemo treatment), I have red flushing across my nose and cheeks and my face feels hot. By that night, I'm running a low grade fever. But my energy level is good on that day so I'm still smiling, energetic and able to do many things. But the neuritis (caused by the chemo) sets in to both arms and hands making it painful for me to do much. Even drying my hands after doing dishes or washing my hands is painful. Being out in a chilly breeze makes the neuritis even more painful. Advil doesn't help. As time has passed, this side effect is less intense.

Thursday and Friday are my 'sick' days as I feel like I have the flu. My nose gets stuffy, I have a nagging headache, my eyes are weak and I'm so fatigued on those days that I forget what feeling good feels like. My concentration is very poor. Each week, these effect vary in their intensity. As time has passed, the intensity of the flu like symptoms is not as severe.

By Saturday, the side effects are lifting except for the neuritis in my hands and arms. I'm usually feeling good enough to do most things I enjoy despite the neuritis. Sunday is even better...except for the neuritis which is still a problem.

By Sunday, I'm feeling completely normal and try to pack as much activity into that day and Monday as I can. Tuesday...it starts all over again.

EVERYDAY, I'm losing more hair. By now, I think I've probably lost half of what I had. I'm fortunate that I'm not bald but not sure that ending up looking like Bill The Cat would be any better. It saddens me as I use to have beautiful, thick, shiny hair. I had to have it cut short a couple of months ago so that the long length wouldn't clog the drain and choke the vacuum. One friend (whom I sure meant well) said, "To hell with your hair!". Frankly, I'm not willing to wish any part of me to hell...and I believe I have a right to feel sad about losing the person I use to be (hair and all).

The fourth week of every month is my 'week off'. The doctor gives me a break from chemo and the white blood cell shots so my body can recuperate from the effects. And it does! By Friday (of my week off), the neuritis is gone...and it feels SO good to be free from pain and have a descent energy level again. During this week, I can almost forget that this has ever happened, I feel so good! One side effect remains...I continue to lose hair... (drat!)

Recuperation from the surgery itself is still ongoing but going extremely well. I feel LEAPS and BOUNDS better each month and moving about is near normal now. It's still difficult to go from a sitting position to a standing one without feeling a tug and some soreness within my midriff. Thus, I stand up very slowly. My intestines are returning to normal and, thank God, I can eat most all things again without much abdominal/intestinal pain. I've learned (the hard way!) which foods to avoid and, frankly, the list isn't that long. I eat all day long (3 meals plus snacks) and have been able to gain two pounds since I had the surgery. My body doesn't metabolize foods the way it use to since it's been 're-plumbed', therefore, gaining weight is a problem. I take enzymes to help with digestion. Fortunately, though...I haven't lost any more weight. It's odd to go from counting calories so as not to gain....to the extreme of eating all I can to try and keep the weight on. I feel like 'Pac Man' most days!...chomp!...chomp! I love making fruit smoothies and I add protein powder to aid in maintaining muscle mass (which I lost during my 32 days in the hospital). The fanny I lost while in the hospital has returned (horray!) and I'm not looking too sickly any more. In fact, you can't even tell I've been sick.

I've always been a happy person and this ordeal hasn't changed that. I still like to make light of a bad situation. My loving, supportive family makes it easier to have a bright attitude. But inside, I do have fear that one day the cancer will return and that my life will be over. My doctors go by statistics and this is what they believe. I hate that they beat the 'statistics' drum! I look forward to the day when the chemo and radiation treatments are finally over...but then I fear that the cancer will return. Even though I talk with my hubby about these fears and, bless him, he quickly lifts my mood with his positive (near denial) logic....I hand my fears over to God because this monster disease and the fear of what it can do is WAY too big for me to handle.

I'm in need of feeling productive as I refuse to just sit around each day wasting time away. I received a candle order last month, filled the order and realized how much I've missed doing this. I'm working on a website for a special client, I'm also making soaps, candles, crocheting and planning to sew some pretty summer dresses with my grand daughters. Life goes on ... :-)

Aroma Fields Candles & Bath

The Short of It

What the doctors thought was "bile duct" cancer turned out to be stage III pancreatic cancer, afterall. I had a major surgery in November (the whipple surgery) and spent 32 days in the hospital recovering.

I'm currently undergoing weekly chemo treatments which should be finished by the end of July. Then I have to have 5 weeks of daily radiation therapy combined with chemo. The chemo treatments I'm currently having aren't so bad as I only feel ill two days out of the week. But, I just don't have the stamina and concentration I use to.

Prognosis for this kind of cancer isn't usually very good but I plan to beat the odds :-) Only 20% make it past 5 years. Since, I've always been active and healthy, don't smoke or drink and always wake up each morning in a happy mood....I see no rhyme or reason why God needs to take me away from my family any time soon.


Aroma Fields Candles & Bath

Going Into Battle

Out, Damn Spot!
On Wednesday, October 30th, after an ERCP procedure, I was diagnosed with pancreatic cancer. The GOOD news is that doc says it is operable with a surgery called the whipple. I'm meeting with an Oncologist on Thursday, November 6th to discuss surgery and begin the battle for my life. This will be a hard road...it already is. But, I look forward to feeling better and to know that this beast is no longer growing inside me. I have a wonderful support group of loving family and friends and will be in great hands at the cancer institute we've chosen. Thank you for all your prayers. I could sure use more as I hope to win this battle and live a long time. I've got more I want to do in this world.

www.aromafields.ecrater.com
www.aromafields.etsy.com