Side Effects 101

When Jimmie was first prescribed this new chemo pill it was accompanied by a small book of things to learn.  Do's like "use an electric razor" and Don'ts like "grapefruit juice" are good to know, but the important list is always the Side Effects.  This drug had 4 lists and none of them were very pleasant.

The very first page had a flashing neon sign that read:

• Can cause liver damage leading to death
• Can cause heart damage leading to death

A great way to say hello.  Then Jimmie turned the page and kept on reading . . .

Common Side Effects:  (in more than 30% of patients)

1. Fatigue
2. Diarrhea
3. Constipation
4. Mouth sores
5. Nausea and vomiting
6. Abdominal pain
7. Upset stomach
8. Heartburn
9. Swelling
10. Taste changes
11. Loss of appetite
12. High blood pressure
13. Low blood counts
14. Skin turning yellow
15. Bleeding

Less Common Side Effects:  (in 10 - 29% of patients)

1. Headache
2. Fever
3. Dry skin
4. Dizziness
5. Shortness of breath
6. Rash
7. Flatulence
8. Hair color changes
9. Cough
10. Hair loss
11. and then a whole slew of things that can show up in your blood work

There's also the less than 10% list, but they don't print that.  They do include:

Rare:  (Life-threatening events in 2-3% of patients)

1. Blood clots leading to pulmonary embolus or stroke
2. A hole in stomach or bowel wall

By the time you are finished reading you have to wonder if you should have left the pills at the drug store.  Seeing such predictions can be a tad disconcerting.  Then a couple of nights ago when Jimmie was back up in the middle of the night he decided there really should be a better list of side effects.  Something better to look forward to.  So, we brainstormed a few he would like to see on the next prescription.

Flashing Neon Greeting:

• Guaranteed to kill cancer!

Common Side Effects:

1. Frequent bursts of energy
2. Whitens teeth
3. Cures snoring

Less Common Side Effects:

1. Curls hair
2. Induces uncontrollable laughter
3. Makes everything taste like strawberries and cream 

Rare:

• Promotes World Peace             

I agree.  Those side effects would definitely be better.

- Linda

P. S.  Jimmie's hemoglobin was 10.3 this week - the first time it has been double digits since last summer.  Fantastic!                                                                                                                             

Small Stuff

An American author, Richard Carlson, once wrote "Don't sweat the small stuff."  Very true.  When you truly have something major in your life you begin to prioritize differently.  For instance, sweeping the kitchen floor falls way under driving 12 miles for a jelly doughnut because Jimmie said he wanted one.  Of course, sometimes the small stuff starts piling up and you have to do something about them . . . like the Christmas decorations I finally got out of the house this week.  I had ignored those boxes just as long as I could stand.
Of course, my sister coming for a visit had absolutely nothing to do with it.

4/17/2012

There is also small stuff with this new chemo treatment that Jimmie is forced to deal with.  The low-grade headache that came with the first pill has now cranked up a notch or two.  It has been joined by occasional nausea and the taste of metal with everything he eats.  And this is just day #17 of the pills.  He takes 11 more and then gets a 2 week break.

There were new worries that started last week because Bronson, Julie and Cole (our son-in-law, daughter and grandson) all got pharyngitis with high fevers.  Bronson and Cole were both able to bounce back quickly, but not Julie.  At 7 months pregnant the doctor said there was no reason to even bring her to him since he couldn't give her anything.  So, I am very glad that she is finally beginning to improve.


But during the 7 days she had us all very worried Cole give me an authoritative but excited rundown on the phone about their rush trip to the ER  ". . . because if her fever gets too high she will cook the baby!"  

I'm certainly glad that didn't happen!  I'm also glad to have an addition to my computer file of Coleisms. Small stuff to cherish and enjoy later.

- Linda

Nine Point Liver

Finally, a smidgen of good news!

Jimmie's hemoglobin has been a problem for months.  Normal range is 12 - 18, but his slid under the 10 mark last September and has not seen double digits since.  It hung out in the 9s (excluding the scary days following surgery) until the end of February when the 8s arrived.   It has been sliding so much for so long that most weeks I was just relieved if the number stayed stable.  But 2 weeks ago it had slipped again, this time so low that the nurse offered a blood transfusion.  Jimmie declined, but by the next day was rethinking that one and accepting that maybe he should have taken the blood.

It was then that he uttered words I NEVER expected to hear from my husband of 38 years.  "If you want to cook some liver, I will eat it."  Jimmie's anti-liver sentiments go way back, so such a statement from him actually bordered on shocking.  But I didn't waste any time discussing it and managed to get liver into him 3 times that week.  Last Monday his hemoglobin had rocketed up 8/10s of a point, the biggest jump he has ever taken.  Naturally, I took credit for it on liver's behalf, but his oncologist disagreed.  He was absolutely sure liver had nothing to do with the improvement.  (Obviously, I was dealing with another member of the Anti-Liver League.  They seem to be everywhere.)  When I asked for the blood count again to be sure I had it right Dr. Montero quipped, "It was 8 point liver."  Lovely.

Despite the doctor's recommendation last week that Jimmie only eat liver if he actually liked it, I kept cooking it.  And today Jimmie's hemoglobin jumped up another 9/10s of a point.  When I excitedly pointed out to Jimmie that it was now at 9.7 he quickly corrected me.  "No, it's 9 point liver ."

Of course, this dramatic upswing also coincides with the infusion chemo being discontinued . . . and it is known to cause anemia in a small percentage of patients.  But so does the new chemo.  In fact, destroying red blood cells is even more common with this new chemo.

Jimmie had better start liking liver.

- Linda

The Great Physician

Jimmie has now been on the new chemo pill for 10 days, and he has had a headache since he took the first one - a typical side effect.  But so far that is the only side affect to arrive, thankfully.

Friends and loved ones ask daily how we are doing, but that is a more difficult question to answer than it used to be.  I can't seem to think of a word to cover this limbo coherently.  We try to concentrate on the good stuff happening - the amazing way the IBTM online Bible study is growing and yielding results, Cole's 6th birthday coming in May, a new grandchild arriving in June, and the love expressed by so many.  Still, this has not been a good week.

Sitting with the oncologist on Monday he asked Jimmie how he felt right now compared to 6 months ago, 3 months ago, 1 month ago.  Jimmie answered consistently that he definitely felt better now.  Jimmie has improved dramatically since the surgery . . . yet the doctor was giving him the long face.  I heard that expression in a John Wayne movie once and did not fully appreciate it until Monday.  For the first time the doctor admitted something I had already suspected - that Jimmie has an aggressive, fast-growing variety of renal cancer.  The IV infusion chemo the doctor started with had been his big gun, his best hope to stop the cancer.  These pills are actually a step down in the line of treatments he has available.  The only plus is that they are a totally different medicine with a different way of blocking the cancer than the infusions, so they may work for a time.  Then fail.  There are more pills after that with harsher side effects and similar results.  The doctor has refused from the beginning to give us any time projections because he does not know how the medicines will work on Jimmie.  And he did not this week either.  The long face was soon contagious Monday.

But after we left the doctor's office Jimmie reminded me that it is the Great Physician who is still in control.  And he's right.  Our Heavenly Father has seen us through some incredibly difficult times in the past.  He will see us through this one as well.  And while renal cancer is a difficult cancer to halt and almost impossible to kill (the classic chemos and radiation treatments don't work), it is also unique in another way.  Renal cancer has one of the highest occurrences of spontaneous remission of any cancer.  Sometimes is just goes away on its own with no known reason.  The oncologist mentioned that the day he told Jimmie he had cancer; our son-in-law, Bronson, found statistics about that soon after; and I just read that online myself.

So we will continue to trust God.  We will continue to hope, and to look forward to good stuff, and to laugh.  Jimmie said this week that there isn't much point to living if you can't laugh, so he plans to keep right on finding the humor in life.  With a grandson like Cole you don't have to look far.

Please continue to pray for Jimmie and all of our family.

- Linda

Telemarketers Beware

Whatever happened to the "Do Not Call" List?  I had two phone calls this morning within seconds of each other that had me highly annoyed.  The first was a man who was determined not to take my "no" to his offer of a new security system.  (We have a security system.  We don't need another security system.)  He didn't accept my "no" the last time he called either so I had to hang up on him . . . again.  And the second "unavailable" call was a recorded voice asking me if I was prepared for my final expenses.  Wow, really?  A recorded sales pitch for a life insurance policy?  That was at least a first.  The Hill home phone has been on the  Do Not Call list to telemarketers since its creation so such calls are actually illegal in addition to being bothersome.

But then I thought about those two calls.  Obviously the telemarketers who use such tactics keep using them because they work on someone (other than me) so there might be something to learn there. Their goal is to make money so they are very motivated.  They offer a product that at least sounds beneficial.  And the head of their organization provides them with the tools they need - either the recording or a script to read.

Maybe we should get together a group of christianmarketers.  As Christians our goal is to save souls from hell so we should be very motivated.  We offer the best security system ever conceived - a home in heaven when we die.  And our heavenly Father provides the only tool we need - the Bible.   Since the church is a non-profit organization the Do Not Call list would not apply so we could call the world to ask, "Are you ready for Eternity?"

And maybe I should ask the next live telemarketer that question.

- Linda

Faith and Infirmities

I have written nothing on the blog about the cancer I have and have written very little on Facebook. Linda has done most of that and I am thankful to her for doing so. I am also thankful for the concern over my health and the accompanying prayers from my friends and brethren. 

However, several folks have asked me about my state of mind during this illness knowing that this is incurable. So let me answer in this short note.

Well, I am not happy about it. Just as I am sure that Paul and Silas were not happy about being in the inner prison with their feet fastened in stocks. But, although not happy, they were joyous praying and singing hymns to God (Acts 16:24, 25). An illness, such as incurable cancer, can torture and hamper the body. However, it cannot affect one’s spirit unless one allows it to do so. Illnesses such as this should set up a greater praise to God who always hears the prayers of the righteous. Remember Paul also prayed that his “thorn in the flesh” might be removed three times but God told him, “My grace is sufficient for you, for My strength is made perfect in weakness” (2 Corinthians 12:8, 9). While God did not remove the thorn, He did assure Paul that he would not be overcome by it. Like Paul, we should take pleasure in our infirmities because of the effect they have on our morale. The greater our trials, the more we should realize the value of the Lord’s help. That is why Paul could say, “For when I am weak, then I am strong” (2 Corinthians 12:10). So, I will continue to work for the Lord doing what I can when I can, teaching, preaching, and presenting the work of IBTM.

So folks, my faith is not shaken nor depleted in any way.

As I continue to pray (and hope that you will also – prayer does change things), that the cancer be removed from my body I also continue to pray “Your will be done” (Matthew 6:10) because God knows what it best for all. 

Thank you once again and remember, whatever happens, happens – God knows best!

- Jimmie

Scan Report

Monday was not a good day.  Our first inkling of that was when Jimmie's oncologist called him personally on the telephone two hours before Jimmie's scheduled appointment.  That is never a good sign.

After the wonderful results of Jimmie's scan in January and the fact that he has been feeling so much better since, we had fully expected this new scan to show that his cancer had shrunk even more.  The absolute worst I feared was that the cancer would have stayed the same, indicating that the essential oils we have been using were not effective on this type of cancer.  Unfortunately, neither of these scenarios happened.   Instead the scan revealed 3 disturbing bits of news:

1. the nodules in Jimmie's lungs were "slightly larger" (exactly how much was hard to decipher by me)
2. the remaining piece of tumor attached to his vena cava is spreading cancer in his abdomen.  
3. the pleurisy is gone, replaced by blood clots in his lungs instead

The doctor immediately cancelled Jimmie's chemo infusion for Monday and changed the protocol for his treatment.  Yesterday Jimmie began a series of injections into his stomach with a drug that is supposed to dissolve the clots.  Ouch!  And today I picked up the new chemo, a pill.  This pill is the one that Jimmie was going to switch to this summer so that he could travel to Africa, so this is just a bit sooner and not as pleasant a reason.  Still, this new medication reads like it is a bit more aggressive (at least the side effect list is scarier).  Yet picking it up at the pharmacy was startling for a very different reason.  Our patient co-pay was $30 which was a relief since yesterday's med ran us more than $200, but that just made me curious.  So I asked how much the insurance was picking up.  The pharmacy tech started reading numbers from her computer screen that started with "12", but when she said "thousand" my brain froze.  I know she said more numbers after that but I really could not tell you for sure what they were.  These are now officially THE most expensive pills I have ever seen - more than $430 each!  It was a bit unnerving to walk through the store with a parcel that fit in the palm of my hand knowing that it cost over $12,000.  My first thought was fear I would drop it.

Please pray that both of these new treatments will work for Jimmie without the scary side effects.

And please pray for our grandson, Cole, too.  Monday got worse just as we returned home from the oncologist when our daughter called us from the ER.  Cole had been playing with a neighbor's Husky and things got too rough.  Somehow the dog's teeth ripped Cole's lip and the split required 5 stitches.  The injury could have easily been worse so Cole was actually lucky.  Now he is just sore and bruised so the only concern is preventing infection.  A scar is a given, but he is a tough little kid.  I had to chuckle when I heard that while the doctor was stitching his lip Cole closed his eyes and hummed the whole time.  Now I'm curious what song he hummed.  It must have been a good one to keep him distracted through that and I may need to borrow it.

- Linda