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 :-)

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~Marilyn's Silly Website~

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

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!

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