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~

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!

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