Lancaster, PA & Dunkirk, MD

As I have dealt with cancer, I have not been one to give up doing everything I was doing before I got side-tracked.  Some things I have temporarily given up (like work).  Some things I have taken a more limited role in (like some church ministries). 

Dennis and I are on the Social Committee.  Someone else had thought it would be nice if we planned a church outing to Lancaster, PA, to see Jonah at Sight & Sound and dine at one of the area smorgasbords.  Somehow the job fell to me to organize.  Val had always done it before.

When we first talked about it, I was already doing chemo.  I really wanted to maybe be able to do Jonah and to eat out.  I said to Dennis that for me to be able to do this, we needed to head down to Lancaster the day before because I was not sure I could handle a four-hour drive down to be at Shady Maple at 1:00 for lunch so we could catch the 4:00 show.  So, we decided that was what we would do, and I made reservations at the motel we like to stay at, Best Western Revere in Paradise.  Then, I found out that my high school classmates in Maryland were thinking of having a gathering to celebrate our 40th  anniversary of graduating from Capitol Christian Academy, then in Washington, DC.  I asked them if they would consider having it July 28, since we'd be already down to Lancaster.  I knew that I would not be much help with things, but I thought that I would be able to manage that as well.  My classmates were more than willing to work with that date for my sake.
this; but it needed to be in July, as that was the time more church people were apt to go.  So, I got out the calendar and checked the date of what was to be my final infusion, if I stayed on schedule.  Since at the time I was on AC, not sure what the effects of taxol would be, I decided it would be wise to schedule the trip no sooner than July 27.  That would be the day for the group to see

As the date grew closer, I sometimes wondered if I was going to finish chemo on time. Having a reaction earlier this month added uncertainty,  Having those gut-wrenching coughing episodes made me wonder how I would be after that final chemo.  If I followed the pattern of the month, then I was due for trouble the dates we were to be in Lancaster.

Yeah -- finished chemo on time.  So, all the remained was how I would be later the following week.  I decided to be pro-active.  Since my gut-wrenching coughing had been controlled by allergy meds and musinex, I decided to start taking that the day before we were to leave for Lancaster.

So, how did God answer prayers?

• We got to Lancaster on Thursday, and met up with friends of ours for supper at Diennar's.  (I did not get the smorgasbord because I had not been doing all that much eating for weeks and wasn't sure it would be worth it to splurge on the buffet.)
• At the motel, I took it easy; Dennis met up with Brian for swimming.  Dennis went golfing at Willow Valley two mornings.
• Whenever I headed up to the main building, such as for breakfast, I took my time.
• We did our usual sneakers shopping in the morning.  I looked some, but I sat a lot. 
• Met up with our group at Shady Maple.  Dennis dropped me off at the front of the building so that I would not have to walk far.  I still had those issues with taking deep breaths and with the pesky cough.
• I actually ate the most that I have in months at the Shady Maple.  I did all right standing in line at some of the stations.  I was excited about how well I seemed to be doing.
• At Sight and Sound, we arrived early enough that we were able to park fairly close to the entrance, which was great since the parking attendants would not let Dennis drive up to the front to drop me off.  I sauntered into the building and found a spot where I could kind of sit.
• Our seating was in the balcony, and so I took the elevator.  I really believed that if I took my time, I would not have coughing and breathing issues.
• After the show, Dennis and I joined family for light fare at Friendly's -- not our idea of a great place to go, but we were out-voted.  All in all, I thought I did very well.  What was exciting to me was that I was not having the problems I had had throughout the month.  I could deal with a pesky cough but not that other stuff.
• Saturday later morning we left for southern Maryland.  I still was doing very well.  I really think that no one would have guessed that just the week before I had finished by 8th round of chemo that had spread over 16 weeks.
• We had a great time at the picnic.  We needed lessons in how to get the meat out of those Maryland Blue Crabs, for one thing.  I forget when the last time was that I had had that.  It wasn't something we had at home, but friends would have it and invite us over.  Good stuff.  Although I had traveled from Lancaster to Dunkirk, enjoyed time with old friends, and had not taken my usual break time, I did very well.
• Our trip back to NYS was well over 300 miles, but I did all right again.

I have to say that my being able to do all of this without being too worn out from it all can't be explained any other way than God's answering the prayers of many on my behalf.  Here it is just a few days later, and I am not feeling too bad.  Sure, I lack ambition to do anything much; but I am doing amazingly.

Chemo Done -- On Time and with Another Reaction

The question, I know, is whether or not I finished chemo on time.  God is gracious and I was able to finish on time -- but not without more of the unexpected.....

Last time I had an infusion, I had a reaction.  With taxol, reactions tend to happen within the first ten minutes that the infusion of it starts.  Because of how things went last time for me -- a reaction -- the medical people had jotted down some things they would do differently this time to try to avoid a problem.  Patty and I both knew the plan, as Patty had been my driver last time as well.  (She has always stayed with me the entire time the days she was my driver.) 

So, I had my cup of "starter pills" to gulp down first.  This time that was followed by a bag drip of Benadryl.  The purpose of the larger dose was to offset a possible reaction like I had last time.   So far, so good -- although Patty and I had already had one of our usual chuckles because my port was again a nuisance, giving the nurse grief who was trying to get that little bit of blood return she needs to see to know the port is open to the vein.  Rarely has my port been cooperative through all of this, and at times I thought they were going to make me stand on my head . . . not really.  It sometimes took a few tries to get that blood return.

Next came the taxol.  As usual, Patty and I were watching HGTV in the little room and chatting.  All of a sudden I felt very warm.  I asked Patty about it.  She said that my face was starting to turn red.  Well, we knew what was happening, and so she went out to get help for me.  The nurse comes running in (not Nergiz, as she was visiting her family in Turkey for a few weeks) and shuts off the taxol.  Because I had already had an extra dose of Benadryl, a different drug was brought in.  I think I heard them say demoral.  Like last time, I would have a drip of this medicine.  Then the taxol would be tried.  If things went well, we would continue.  If I reacted again, we would be done for the day and I would have to come back the following week.

Once again I had Patty hold off on going to get our lunch and bringing it back.  If I was going to have yet another reaction, then we'd be on our way home. 

The demoral was done, and the taxol was re-started.  The drip was slowed considerably for the first ten minutes.  Since that went without a problem, the drip rate was increased a little more -- but not what it was (not that it was all that fast).  I sent Patty off to get our lunch and bring it back.  As before, I ordered something that would hold all right, if I were to fall asleep before she got back.  I had been told that my having a bag of Benadryl and then one of demoral was sure to put me to sleep.

The rest of the infusion went on without any problems.  I amazed the staff with the fact that I was not in the least bit drowsy from those drugs they had given me to offset the reaction.  Patty and I had arrived at the office for a 10:00 am start; we did not leave until after 4:00 pm.  That did not matter to me because I WAS DONE WITH CHEMO!!!!  My medical people congratulated me and sent me on my way. 

Because my white blood count had been good throughout my weeks of chemo, I did not have to return Tuesday for a neulasta shot.  I thought that this would be an interesting test, seeing if that was what was causing my bone and joint pain the weekend after the shot.

My next visit there will be a follow-up appointment.  Before that one, I will have another CT scan to check on the small spots that caused my chemo start to be delayed a week.  Probably that is when I will be put on hormonal therapy, something I will be doing for the next five years.

God is amazing!  I stayed on schedule all the way through, after that initial one-week delay.  I think Dennis and I will be set for our trip next week (Thursday-Sunday) to Lancaster and then on to southern Maryland for my 40th Reunion, CCA Class of 1972.  WOW!!!

That Awful Cough

This month I have had a few difficult days due to the side effects that accompany my taking taxol.  I developed a pesky, but manageable cough.  Taking deep breaths was a problem for me.  Initially I thought I was in trouble and would have my infusions postponed because of that.  BUT, there were no signs of pneumonia, and I did not have a temperature.  It just was the taxol because it can increase mucus production, my oncologist said.

My first really difficult run of days occurred the end of last month, the week after one of my infusions.  It was VBS week at church, and I am the chairperson of the Christian Education Committee.  I wanted to have a sense of how things were going.  I would go down to the church for the closing part of the morning and sit in the back to watch (and stay away from germy people!).  By Friday, I was dragging, but I went down for the closing program and stayed for the picnic.  To walk out to the gray building, where the food was being served, I knew to take my time.  I did not want to get winded or else I would start coughing -- not just the pesky cough.  I found a chair out there, behind the serving table, and I sat.  I did manage to eat a hot dog and that was about it.  After things died down, I took my time walking back to my car.  I did not realize that I did not look all that good that day until someone told me afterwards.

By Sunday, I was coughing terribly.  If I wanted to move anywhere in the house, I had to do it very slowly.  To go from the living room to the kitchen was difficult.  I went out in the late afternoon, after Dennis had gone to evening church, to make me a grilled cheese sandwich in the kitchen.  Once I got to the kitchen, I had to stop and catch my breath.  When I did that, it triggered some gut-wrenching coughing.  Because it did that, it made me have to catch my breath, which resulted in that coughing continuing.  I had to force myself to not cough deeply and just regain control.  Once I did, I was set for making my sandwich and then very slowly making my way to the recliner.  I did not want to find myself needing to catch my breath.

This was a fine way to spend our anniversary -- #17.  I remember writing on my card for Dennis that we had vowed to remain faithful to each other "in sickness and in health."  He has been so good to me (although we did startle the pastor's wife a few weeks ago at prayer meeting when he said to me, in front of her, that he was going to have to trade me in since I was now defective).  I can't begin to imagine what has run through Dennis's mind through all of this.  I am thankful that one of his best friends, Brian, understands.  I don't doubt they have talked.

That night was also the annual fireworks show in town, the night we tend to have lots and lots of people come up to watch them from our backyard.  We decided we would still have people come up to watch the fireworks.  I just would stay inside.  (Julie and Debbie came up to help with some of the preliminaries, like grilling the hot dogs.)  I don't think as many people came as usual -- probably out of deference to me, as they knew I had not been at church that day.  When the fireworks began, I did slowly walk out to the deck and sat out there to watch them.

The next day was chemo day.  I still was not doing all that well.  I figured that once I got to the oncologist, he could help me.  Sure enough, everything was good to go for chemo.  I did not have pneumonia or anything.  My oncologist had me get an OTC one-a-day allergy pill.  By Monday evening, I was doing much better.  I took the allergy meds for a few days just to be sure.

I went through chemo week well.  I did still have the pesky cough.  I did have the usual aching bones and joints for a few days; but nothing out of the ordinary until the following Friday morning, the day I was to go for a blood draw in order to see if I was good to  go for chemo on Monday.  I woke up with that gut-wrenching cough.  This time I really did not feel well.  After Dennis left for work, I ended up puking up mucus in the hallway -- easy to clean up.  I wondered if I should call the oncologist, although I was to be there about 9:30.  This was a day in which I was exceedingly glad that I had a driver.  Carol picked me up on schedule.  I tossed in a plastic container in case my coughing triggered that same response as earlier. 

We got to the office, and they checked me in, doing all the usual things.  This time I did have a temperature.  I told them about my difficulties that morning.  If I moved slowly, I was ok.  So, the oncologist had be get a different allergy pill as well as mucinex.  He also decided to put me on a five-day regimen of an antibiotic.  He did not think I was showing signs of pneumonia, but he just wanted to keep it that way.  So, after I gave my blood, Carol and I headed out.

We stopped at Rite Aid so I could pick up my antibiotic plus the other two things.  In that store I really did not feel well.  Carol had come in with me to  help me find the allergy meds and mucinex.  My prescription was not yet ready as the pharmacist had not yet gotten the call from my doctor.  I had waited in line and thought for sure I was going to black out.  The walls looked pixilated.  What was holding me up was the small cart Carol had given to me while she went back to get another one for herself.  Knowing I was going to need to wait -- and not trusting myself to be on my feet, I went over to the seating at the pharmacy and waited.  The line at the pharmacy had died down and the pharmacy people knew where to find me.  Finally I got the prescription, paid my bill, and slowly went out to the car where Carol was.  Once in the car, I yanked off my hat to cool down.  It did not matter to me that I was bald everywhere and that Carol had not seen me that way at church because I'd wear either a hat or wig.  I did not feel all that great.

I got home, took my meds, and then stretched out in the recliner.  Anything happening that day was going to be left up to Dennis.  I was not ready to do a thing.  As last time, by evening, I was feeling much better.  My goal was to be able to do chemo on Monday.  That was to be my final infusion.  I wanted this to be over.  Dennis and I had plans for the end of the month and their working would hinge on how all of this played out.

Questions to be answered:
1)  Will I finish chemo on time?
2)  Will that final infusion go smoothly?
3)  Will I have a problem with that gut-wrenching coughing again, the week after chemo?
4)  Did the plans for the end of the month go on without a problem?

Check back later.

Some Side Effects of Chemo

Side effects are always something anyone battling cancer has to deal with.  In my reading of blogs and discussion boards, I have discovered that not every person in my situation has the exact same challenges.  In thinking about that, it does make sense.  No one’s body and make up is exactly the same as another’s.  I did find, though, that the information I gleaned helped me know what I could expect.

With the Adriamycin/Cytoxan and neulasta shot, the side effects were these:

•      Feeling a bit queasy toward the end of the week that I had an infusion – no nausea or vomiting, as my pills worked well
•      Hair loss the week I had my second infusion
•      Not too energetic those days I felt a bit queasy

I never was “out of commission” for more than just a few days in the two-week rotation.

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• With Taxol, the side effects were these (and may have been the culmination of the AC and neulasta)      

• A bit of neuropathy in the smaller toes of my right foot

• Scaly skin on the edges of my heels and around my toes as well as up to and round my right ankle (outer) 

• A pesky cough

• A gut-wretching cough for a day or two

• Aching bones in the upper legs and hips for a few days, usually the weekend after an infusion

I have struggled more with the taxol than the other chemo, but compared to what I have heard and read, I have not had it too badly.

God is gracious.

Whoa! I've Had a Reaction

Well, I had no reaction to the first two infusions of taxol.  This time, though, I began to have an ache in my lower back.  My face felt like it was getting hot.  I said something to Patty (my sister-in-law who was my driver/companion for the day) who told me my face was rapidly turning red.  I told her to go get help.  She and Nergiz came back, with Nergiz immediately stopping the infusion.  Another nurse came in with a bag of Benadryl, which would help bring things under control so that they could re-start the infusion. 

I didn't want to send Patty out to get our lunch until I knew we were set with things, as if I had a second reaction, then I was done for the day.  I would have to come back next week, and they would be using another drug, other than taxol.  Nergiz re-started the Taxol after the Benadryl bag emptied.  She kept a close eye on me for the first 10 minutes to be sure things were going to go better.  They did. 

I sent Patty on to get our lunch, since it appeared I would be able to stick this out to the end.  Because Benadryl could make me a bit sleepy, I had Patty get me items that would keep all right if I were dozing when she returned.

Patty and I did, as usual, end up laughing about this -- probably my room where I have my infusions is the only place where nurses hear the sound of laughter in that part of the building.  It seems that I have often not followed the "norm" on things.  A reaction to taxol tends to occur within the first ten minutes of the first infusion.  For me, it was the third.

Because I have one more round of taxol on July 16, the  nurses jotted down a few things in their notes that they planned to do to prevent a recurrence of something like this.  One thing they plan to do is up the initial Benadryl, giving me a small bag of it at the outset.   Their thought is that since the Benadryl did calm things down for me to continue, that the extra Benadryl at the start would keep a reaction from happening.

Next time is my last infusion.  I really do not want anything to delay my finishing chemo on time.  Dennis and I have plans for the end of the month to be out of town.  That planning hinged on my being past the chemo (and getting through the effects of it all right).

Anniversary Sunday

Over the weekend, I just did not feel well.  I was especially having problems with the coughing.  It was difficult for me to move from the living room just to the kitchen without having to stop and catch my breath.  When I did that, I would start coughing.  Coughing can entail deep breaths, and so I would continue to cough, trying to catch my breath.  Finally, I could wrestle the cough in such a way that I was not taking those deeper breaths.

Sunday I did not even go to morning church, since I was in no condition to go.

Our town has its July 4^th celebrations the weekend before or after July 4, depending on when it falls during the week.  The last night is fireworks night.  Over the years, all sorts of family, friends, and acquaintances come up to view them from our back yard.  Those who come bring a snack to share.  We usually provide hot dogs.  We have had times when over 100 show up.  This year the crowd was small, probably their being considerate of my current health issues.  Dennis and I did not tell people not to come, as between him and his sisters, they could do the work.  So, I did not even go out and mingle with those who came.  I stayed in my recliner.  When the time came to view the fireworks, I slowly moved out the door to the deck and sat on one of our chairs out there.  That worked well for me.  Clean up was, as usual, easy.  What remained behind Dennis and his sisters took care of.

Today also was Dennis and my 17^th wedding anniversary.  I was reminded of the portion of our vows we recited to each other that day, “in sickness and in health.”  Dennis has been right there to help me and encourage me.  I am thankful for him – and thankful that he is able to take care of the things I just am not up to some days:  laundry, cooking, doing dishes, etc.  He can come home from work and know how my day seems to be going and just take over from there.  He is a wonderful husband.  We will go out to eat to celebrate our anniversary in a few days, as I should be feeling up to it.

My cough was helped by taking an allergy pill.  Taxol can affect production of mucous.  So, my oncologist recommended I do that.  I had relief from the awful, gut-wretching coughing rather quickly Monday evening.