December 5, 2012

Today marks a year since I received a call at work that my mammogram and ultrasound taken three days earlier showed suspicious areas.  The medical people wanted me to have an MRI to see what that would show.  This was the start of what would be a very challenging year for me.  Now that I am at "anniversaries," I can't help but stop and reflect on this past year.

I will say that at the outset, I did not like to say the word cancer.  Not sure why that was, because I was not in denial.  I think it was more of not liking to think about the seriousness of my situation.  Other people get cancer, not me.

Now, I have a rightful pride in saying that I have indeed battled cancer the past year.  It is an accomplishment to get through major surgery (mine about 7-8 hours), chemotherapy, and radiation therapy.  It is by God's grace that I got through those things as well as I did.  It seems that what I heard most from my colleagues and friends was that I still was able to smile in spite of things.  I attributed my calmness, my peace, to God.

I have commented to more than one person that I think it is wrong to give cancer survivors the idea that if they survive five years after their diagnosis, they are set.  They have won the battle.  Why do I think this is wrong?

1)  Cancer survivors will always be checked to see if cancer has returned.
2)  Cancer does return, even after a cancer survivor passes that five-year mark.

I read entries on the discussion boards the American Cancer Society has.  I see individuals devastated that the disease has returned.  I think these individuals are not Christians, whose trust is in God.  Reading what they share is sad.  They have no hope in what lies ahead for them, should they die; their hope was in medicine, and it has let them down.

I hope that lessons I have learned this past year I will be able to share with others in the future who find themselves in my situation.  God is faithful and He is good.

Yes! A Good Report

I remember the day I was to start chemo and didn't because of spots that had appeared on a CT scan done the end of March.  For a good part of that day, what the oncologist was going to do was not settled.  Should I go up to Syracuse for a PET scan?  Will chemo be a different mix of drugs?

Dr. Benjamin and the radiology doctor decided that the spots were too small for a PET scan to do any good in determining whether or not those spots were cancerous.  (If they were, then my stage would be dropped to IV, which is the first stage of the incurables.)  The radiologist believed that the spots were nothing unusual.  These things sometimes show up in a body after surgery. 

So, the decision was that I go ahead with chemo the following week.  In July, after I finished chemo, I would have a CT scan to see if those spots were still there.

When I went to Dr. Benjamin's office for my first follow-up appointment, he had the results from the newer CT scan.  He said that the spots were no larger.  There were no additional ones.  The fact that they had not disappeared as a result of the chemo was also positive.  He was not yet ready then to say that we are in the clear; I could get my port out.  I would have one more CT scan before my December appointment.  If the spots had not grown, then he would no longer consider them a problem.  I could get my port out.

Today was that appointment.  The spots were gone!  I can get my port out next month -- something that has been a part of me since the end of March.  I am seeing another milestone about to be reached, and I am excited.

God is good.  The spots are gone!

Hm-m-m!

One thing I have found amusing throughout my ordeal in dealing with cancer is how often I have heard this:  "You look really good"

I heard that from people when I was recovering from my surgery.  I heard that when I was undergoing chemo and lost all of my hair.  I heard that while I was going through radiation therapy.  I still hear it from time to time.

This always makes me wonder how it is I am supposed to look.  What are the people's ideas of what people like me who are dealing with cancer should look like, whether it's surgery, chemo, or rads? 

I remember sharing this with a group of people, and I did put it out there to them, "What am I supposed to look like?"

Thinking of My Pal Val

Today marks the second anniversary of the death of one of my best friends, Valerie. We first met in 1984 after she and her husband moved back to the area from Michigan. I had moved here in 1983, and so I had not grown up with her. We got acquainted through our church and Christian school

Because her husband needed to take some classes to get his permanent NYS teacher certification, he went to classes two evenings a week.  At the time Val and I worked at our church’s Christian school – I was still single.  It was not uncommon for us to decide that we’d like to go out for supper occasionally.  Val was one to rarely want to choose.  It seemed that whenever we’d head out, I would ask where she wanted to and she usually would say, “Doesn’t matter to me.”  One time, for something a little different, we decided to go to the gym at church and shoot baskets from different spots.  What we would do is take turns calling out the name of a restaurant in Cortland, and then we would take our shots.  Missed.  Missed.  Missed.  It seemed like we’d run out of options before we got a basket made – not quite sure why we did not try a lay-up or foul shot . . .  I do not remember the final choice from that evening, but I remember the fun we had figuring out where we would go.

Another thing that Val and I did for a few years was to host what we called the "Almost Annual Almost Spring Thing."  The weekend our husbands were off to watch the NYS basketball finals, we'd invite our lady friends over for food and fellowship.  To not have to worry about having enough to eat, each guest was asked to bring a food item to share.  Val and I would take care of the paper products and beverages.  Initially, we thought the time would be spent in eating, playing games, and maybe watching a DVD (probably video back then); but all we ever did was eat and visit.

Val was a friend who, with Patty (now my sister-in-law), would often be a help to me when I was ailing big time.  I lived by myself here in town for twelve years, and there were times that I needed their help.  One time was the period of time in which I was recovering from major surgery that kept me house-bound for a number of weeks.  Another time was after I had “majorly” dislocated my shoulder playing volleyball at church – I was literally HEADED to a wall and put my arms up to protect my head.  Occasional meals as well as helpful rides for appointments she – and Patty – helped with.

When I began to spend time with Dennis, then Val and I would sometimes be joined by the guys, usually going out to eat somewhere.  We’d have the guys sit up front, as about all they would do is talk sports.  Val and I would do some chatting, but we also would poke a little fun at the guys.  Over time, Dennis and Brian became very good friends – and still are.

The Hulls and we two also worked together at church on different committees.  To us, we weren’t just friends, we were Christian friends.  We attended the same church, and we were involved in various ministries of the church.

Eventually Val left teaching and took a part-time job at the local library.  That was a job she enjoyed, as she loved to read.  It was a job that worked well – no pun intended – for what she was about to encounter.

In early 2002, Val was diagnosed with breast cancer.  I do not know all of the specifics because I never asked.  I remember her impending surgery in which the DRs were not sure how extensive it would be, as they would not be able to confirm their suspicions until then.  My father happened to be at the same hospital for hernia surgery in the same out-patient area where Val was that day.  Brian came by to see Dad while Dad was waiting to be discharged.  (Val was sleeping.)  I went over to where Val was, as I knew that she and Brian did not get the news they were hoping.  She had had a single mastectomy and would be staying overnight.

I remember Val’s going through chemo.  It made her nauseous, from the day of her infusion on into a few more days each time.  She dropped out of sight during that time.  Because she and Brian lived way out in the country, Val often would come into town and stay at her parents’ while Brian was at school.  She and Brian preferred no visitors, and so we stayed away, sending cards and notes from time to time to stay in touch.  Eventually she got through her chemo and settled into getting herself built back up.  Her doctor did not recommend radiation therapy, something her family now questions from time to time, especially Brian.  Hindsight is always 100%, but he is not convinced that the doctors did all they could at the start for Val.  Val did hormonal therapy – had a hysterectomy to do away with what could pose a risk to her with taking hormonal therapy.

Val also became very picky about what she ate.  She would go as far as she needed to to be able to purchase food that did not have hormones that would feed her problems.

Her energy returned.  She got involved in the church.  She resumed work at the library.

I remember when I heard, a few years after that, that Val’s cancer was back.   This time it was in her bones.  She had been struggling with being comfortable and sitting comfortable.  Finally, it was determined that she had cancer again.  This time the doctors again used chemo, but that was it.  I remember Val’s saying that in some ways, the chemo was easier; yet I recall the problems she had with her feet and the cracks on the bottoms of them, which were painful.  She’d wear soft, wide sandal shoes when she needed to wear shoes.  Again, she lost her hair.  She said to me, though, that this time she was not as paranoid about things as she had been the first time.  One, she knew more what to expect; two, progress had been made in the field of medicine.

The cancer got back into remission for awhile, but it was not too long before it returned.  It had spread into other areas of Val’s body.  She did what she could for treatment, but then she gave up when it seemed that nothing was going to work any more.

The last time that she and Brian went out with Dennis and me was about two months before she died.  Our tradition was to go to an ice cream stand that serves soft ice cream and get whatever we felt like getting.  We would do this Labor Day weekend.  We could tell that Val was not feeling all that great.  Tiredness seemed to be her constant companion, but she was game to go.

When Val decided that enough was enough, after one more trip to the hospital, hospice was set up and she came home.  It was not many days after she came home that she passed away.

Why do I think of Val?  It goes beyond all this that I have already shared.  Just a little more than 14 months after Val’s death from breast cancer, I was told I had breast cancer – it was not just in one breast, but it was showing signs of starting in the other.  I had noticed a lump in the fall and thought of putting off getting it checked out until spring, but I could hear Val’s voice in my head telling me that was foolish.  Don’t wait.  I didn’t.

Val’s parents have been faithful in their prayers for me.  They often sent notes, dropped by with cookies, or called me to see how I was doing.  Val’s mother said to me early in all of this not to second-guess my decisions.  It would be easy to do, but don’t.  Val’s sister-in-law, who helped often with Val during her illness, was a resource for me.  She also was one of my drivers from time to time.  She was the one who gave me my buzz cut when I knew my hair was starting to fall out.  Brian has also shared some things with me about Val that I did not know, to help me to know more what to expect.  He also was a great help to Dennis, since they were – still are – best buds.

I sometimes wonder when Val’s parents see me what runs through their minds.  Our treatments were different.  My situation, at least initially, was more widespread.  It seems that God’s people prayed me through surgery, chemo, and rads to the extent that I did not have as difficult of a time as Val did.  I think this is what has caused Brian to say to us that he, and the rest of the family, do not believe the doctors did as much as they could have at the start for Val.  I think that this also is what prompted Val’s mother to say to me, “Don’t second-guess yourself.”

It is a weird feeling to have the same disease a best friend had that ended her life.  It makes me think . . . Will my treatments make a difference in my outcome compared to hers?  If not, how soon will I know?  I think that our being best friends and our having this dreaded disease in common will keep Val forever in my mind.  That was a good thing in late 2011, as it motivated me then to get to the doctor.

I sometimes wonder if I did enough to know and understand Val's health issues as she was going through them; but then I remember how it seemed the family kept a lot of it to themselves.  That was how they were.  Sometimes I ask things now, and I think they more readily give me answers than they would have then -- why?  Because I have the same disease.

Quite a Spiritual Challenge

A few months ago, a long-time friend of mine who has also battled cancer (as is her toddler-aged grandson) asked me if I had ever read the pamplet Don't Waste Your Cancer by John Piper.  She suggested that I get my hands on a copy and read it.  I did purchase it, but since then I have discovered a free download online.

My sister, who has MS, is also familiar with the pamphlet and said she has used some of the points in it when she has been asked to speak at functions at her church.

Here are the topics, along with some of my own notations:

We waste our cancer . . .

• if we don’t hear in our own groanings the hope-filled labor pains of a fallen world. 
• if we do not believe it is designed for us by God.  That is a radical thought, really.
• if we believe it is a curse and not a gift.  Wow!
• if we seek comfort from our odds rather than from God.  Where is my focus if this is what I am doing?
• if we refuse to think about death.  I have found my experience to be rather sobering in this area, not that I dwell on it; but I have thought more about my own mortality.  Whether or not we have a "killer" disease, we really have no guarantee of living a long life. 
• if we think that “beating” cancer means staying alive rather than cherishing Christ.  I need to think about who has brought me through this and live each moment to His glory.
• if we spend too much time reading about cancer and not enough time reading about God.  Reading too much about cancer (or even survivor discussion boards) can be depressing.  Where is my comfort and strength found?  In God.
• if we let it drive us into solitude instead of deepen our relationships with manifest affection.  I found that not holing myself up was a good choice for me.  It apparently also was good for those who volunteered to do so many things for me over the months.
• if we grieve as those who have no hope.  For sure

Those writings sure offer a challenge to me.  I would recommend this pamphlet to any true Christian who is dealing with a "killer" or debilitating disease.  It does put to us some real challenges.
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www.desiringgod.org/resource-library/books/dont-waste-your-cancer

Not Quite Done

I did finish radiation therapy according to Dr. Pohar's plans.  There were a few days near the end when I was not sure if I'd finish on time because I developed a large nasty burn just as I finished the initial treatments (28) and was to start the boosts (5).  It wasn't as sore as it could have been because a lot of that area is still numb from my surgery -- but it was sore. 

None of what occurred was a surprise, as all along, the therapists were checking my skin in the areas being radiated, making sure that there were no breaks in the skin.  Over the time of treatments, the skin becomes redder and redder, a lot like a very nasty sunburn.  As long as the skin does not break, radiation can continue.  If there is a break in the skin, evident by weeping, radiation has to stop because it creates problems with the healing process. 

The skin under my left arm was looking more and more like it was about to break.  This was two days after I finished my initial treatments.  Cary took a look at the area after my therapy that Thursday, as she was not wanting me to develop a real problem over the weekend.  She started me out with having to dab the area with very diluted hydrogen peroxide twice a day.  I was to see her Friday morning before my treatment.  She would decide then if more needed to be done.

By Friday, it was worse. I was dealing with some burns due to radiation therapy.  It looked bad, and the moist dead skin smelled.  I also was sore, although not as sore as I could have been due to my still being rather numb in that area from my surgery.  Cary took a look at it and decided we needed to do more.  She cleaned the area and then told me to return after I had my treatment. 

Matt and Karen, the therapists, had been keeping an eye on things.  When I showed up and was laid out on the table for the treatment, Matt said something about seeing Cary about the burn, as he described it as looking "rugged," while Karen told me that it was a good thing I could not feel most of that area.  I said to Matt that I had already seen Cary, and I was going back to her after the treatment.
The other big concern Matt and Karen had was about the location, making sure that the radiation from the boosts was not hitting the area where the skin was broken.

Cary decided that in addition to the peroxide, I needed to cover the burn area with Silvadene.  The cream would help prevent infection as well as soothe the area.  What I was to do was about mid-afternoon, I would dab off the Silvadene she was about to put on and cover lightly with gauze to keep it off my clothes.  The burn area then could "breathe" for about six hours or so.  (The best thing was for me to sit in my recliner so I could prop my arm up on the armrest and minimize the friction to the area.)  Then about bedtime, I would clean the area again and cover the area with Silvadene and gauze.  When I got up, I would clean the area and let it breathe.  Then late morning I would again clean the area and cover it with Silvadene.  The process I repeated over the weekend.

I definitely was sore.  Minimizing the movement of my arm was helpful.  I did not go to school Friday.  I was not too comfortable Saturday evening when we drove over some rough back roads to our grandniece's wedding reception.  Sunday I stayed home from church. 

Monday I returned.  Cary took a look at the area, as did Dr. Fallon.  No infection, which was a good sign.  Already there were signs of healing going on.  I did continue with the boosts -- although to put my left arm up where it needed to be was even more painful than it had been because of stretching the burn area.  The doctor asked me if I was all right with the pain level.  I said I was fine.  I was taking some Tylenol, but I didn't expect it to completely alleviate the discomfort.  After treatment, I went back to Cary, and she again cleaned the area and covered it with Silvadene and sent me on my way.  I continued the process here at home.

Tuesday was the same pattern at the office and at home with more evidence of healing.  Wednesday, my final day of boosts, there was more evidence of healing.  Because I was done with therapy, I was not going to be coming in every day as I had been.  So, Cary had me return on Friday so she could check on  how things were going.

By Friday, the area was looking like it had new skin beginning to cover it.  The area was sensitive, but there was not much oozing.  There were no more areas of moist dead skin clinging anywhere.  No odor.  Cary asked me whether I wanted to come in Monday or Tuesday.  I chose Monday, as I was hoping to return to school Tuesday.

Over the weekend, two new spots appeared.  These seemed to be related to the boosts.  These were more in the front.  (Odd that with radiation burns like these, they do not appear over the whole area.  They just seem to hit areas.)  They were smaller and less nasty.  So, I went ahead and started to treat them the same way I was doing the other area.

Last Monday I returned.  The area under my arm was doing very well.  No need to do "the procedure" anymore.  BUT, now the attention went to the new spots.  Cary cleaned the new spots and dabbed Silvadene on them.  I was to do with these what I had done with the other burn.  I was to return Thursday.  Thursday would mark the end of a week of dealing with radiation burns.  I still was not going to work because of my having to do some treatments at home.

Thursday I again saw Cary.  She really is good at this.  Like she did Monday, she cleaned up the area, including taking care of the dried dead skin.  (I have not wanted to do that lest I create a problem.)  The spots are healing well, like the larger area did.  She thought that maybe this weekend, the oozing will end, and I can stop doing the Silvadene applications.  Then I can go back to putting Miaderm on the area.   As she was checking things, Cary did spot an area that had a little bit of drainage.  It was not anything we have been working on, but I had also noticed it here at home and was going to say something.  She had Dr. Pohar take a look at it, and he decided to prescribe me an antibiotic for ten days, as we are wanting to avoid any big problems.

While Cary was dabbing the areas and dealing with the dead skin, I asked her if burns (beyond looking like a nasty sunburn) were fairly common.  She said that they are, more than it may seem.  I do know that last week there was a man who was getting burns checked out.  He had had to delay his treatments twice and was hoping to get back on track.  I also know that a few weeks ago there was an older lady who had finished who had come back a few times after -- she said she was there because she had had problems with burns.  So, I was not unusual, which I could tell because Cary seemed so practiced in what she was doing.

Monday is a holiday.  No school.  Cary has a school-aged daughter, and so she is taking the day off.  That said, she can't fit me into her schedule until Wednesday.  I am hoping that that will be my final follow-up appointment.  My goal is to return to school Thursday.

So, although RT is done, I have a little longer to wait before my life can return to normal -- for the first time since late last year.

The Hair Is Back

I remember writing in April that my hair was fleeing.  So, I thought I ought to follow that up with the announcement that my hair has returned.

I had a false idea that my head hair was returning earlier than the norm when I suddenly had bristles that stayed the end of May.  Odd thing was that nothing else happened with them.  They did not grow; they did not fall out.  What happened, though, was that my eye lashes, eye brows, and nose hairs decided to disappear.  As a result, I had a very boring head.  The only thing breaking up its monotomy was my cool plum-colored glasses.

I finished chemo July 16, and I knew that at some point my hair would start to grow.  The reasonable thing was not to expect it to be right away.  I had said to Patty, as we left after my final chemo infusion, that I had to think of the next two weeks in the same way I did those blocks of time from when chemo began.  So, I knew not to start patting or rubbing my head to see if I noticed anything other than those bristles right away.

It was when I saw how fast my eyebrows and eyelashes returned that I knew for sure that my hair was beginning to grow back.  At first, it seemed like it was coming in rather slowly, as it was barely visible in a mirror, unless I got up close to the mirror.  I found myself patting and rubbing my head frequently, not that those motions would help anything; but it seemed like life was going to finally begin to return to normal.

By the end of August, it was very apparent my hair was growing.  It wasn't very long -- hardly enough to even grasp with fingernails, but it was visible without getting up really close to a mirror to see it.  I found myself excited enough that I would sometimes take off my hat or wig to show friends and family.

It seemed that all of a sudden, my hair really began to fill in quickly.  My goal was to give up my wig and hats when I had enough hair to cover my head nicely.  The end of September that happened, after I had an encouraging word from someone else doing rads who thought I looked good -- a woman who was a former hairdresser, I discovered.  That day I quit, practicing my "freedom" by going on my errands around Cortland without wearing my hat.

ANOTHER STEP!!

Encouraging the Eatons

Throughout the seven months or so of my doing battle with cancer, my church family provided Dennis and me an amazing support system.  After my surgery there were meals brought in for us.  Aside from ones who signed up for designated days, there were others who would just stop by and drop off supper for us.  This happened not just after my surgery but also over the weeks that followed.

After my surgery, I could not drive for quite a few weeks.  Because of post-surgical draining, I had to go to the surgeon’s office initially twice a week – Monday and Thursday afternoons.  Gradually that dropped to once a week, then quickly down to no more times for that.  I had friends and in-laws offer to drive me to appointments.    

The few days in which I had preliminary testing before I began chemo, my friends Becky and/or Patty were my drivers.  Of course, after the tests were over, we’d head over to Perkins Restaurant to eat at least a muffin and drink coffee.  While sitting there, we would get caught up in talking and laughing, as well as kind of singing along with the “oldies” that were the restaurant music.  We did this the mornings I had a CT scan, the EKG, the bone density test, and the bone scan.  It was good for me to be able to be with friends and to have some good laughs.

When I got my chemo schedule, the Hospitality Committee at church once again came along side to be a help.  People could sign up for meals that would come the Wednesday after chemo.  I had drivers for my infusion appointments every other week over sixteen weeks.  Those who did that did not need to stay the hours I’d be there; but most chose to.  So, although I had my Kindle with me, as well as puzzle books, I rarely did much with those.  Instead, my companion for the day and I would chat and watch HGTV on the little tv in the infusion room where I was.  My most frequent driver was my friend and sister-in-law Patty.  We had some fun times in spite of the situation.  Probably mine was the only room there from which the med people could hear some laughing going on.  Two of my drivers were very curious about the needles and the tubes and the bags of drip that I would get hooked up to.  They would be right up on their feet, checking the process out – which was ok with me.  Others just sat and chatted.

When I first started chemo, I was still seeing the surgeon at least once a week.  So, there were ladies who signed up to drive me to these appointments as well.  These appointments did not take too much of a time commitment.

Tuesdays after chemo I would have to go back to the facility to get a neulasta shot.  I had drivers to take me there.  The Fridays of the following week I had blood draws.  I had drivers to take me for that as well.  Most times I felt fine, but my fear was that the time I would decide to cancel a driver, that might be the time I needed the driver.  Near the end of chemo, I had a time when I really needed that driver.  When my driver was my friend Wendy, we’d always go for coffee at some coffee shop, if I was feeling good.  I was.  That was a great way to break up the monotony of these trips.

Because chemo infusions can get thrown off because of low white blood cell counts and because I knew I would soon not have to make frequent visits to the surgeon, the Hospitality Committee ladies and I decided that the sign-up sheets would be done in increments.  The first one would cover the first four infusions (eight weeks).  The second would then replace that with the final four.

After chemo I had radiation therapy.  Radiation therapy is quick, but it goes on every weekday for about 33 times or so.  To me, that seemed like a lot to ask of the church people – rides every day.  So, this is what happened.  My sister-in-law Patty always took me on Mondays.  That is her day off work, and for several reasons, she liked the chance to get out of town for a bit.  (When she drove for these appointments, we tended to stop at Dunkin’ Donuts on the way home because I knew she liked the iced coffees.)  Ladies signed up for Wednesdays and Fridays.  I thought I could handle the other two days, although I had some of the ladies at church say to me that if I needed a ride to let them know.  I finally did that near the end of my radiation therapy because of the burns I was dealing with.  I could have driven myself, but having drivers was a BIG help. 

My final day of radiation therapy, my driver, Wendy, and I went on up to Homer to a coffee house and celebrated.

Why did I like the idea of the sign-up sheet?  In a crisis, people will offer to help.  They want to help.  I did not have to make the decision very often of asking someone myself if she could assist me.  Ladies had volunteered.  I did not have to wonder who would not mind spending hours on a Monday with me for chemo.  Ladies volunteered.  How easy is that?  Also with the sign-up sheets, people knew what could be done, rather than guessing.  It really was great.

I often commented to some of my drivers of how blessed I felt by this support the church was providing.  Do we make a mistake in not sharing our needs with our church family?  I know there are those who take advantage of the goodness of people; but why do we hold back?  We give Christian brothers and sisters the opportunity to help us out and be blessed by doing so. 

“Encouraging the Eatons” was a blessed experience for Dennis and me.  I think that it was a blessed experience for all of those who volunteered.  This was a long time to be doing this, and yet we never lacked for a volunteer.

Galatians tells us that we are to do good to those who are in the household of faith.  I know that I will be even better about volunteering as opportunities arise in the future.

Radiation Therapy Completed

Almost Done

Here it is, two days from finishing cancer treatments.  Radiation therapy ends Wednesday, 218 days after I had my surgery for breast cancer.  Wow! 

To not have to be going to Cortland for some type of treatment will be odd, as I spent a good part of last December going for tests and appointments; I spent much of January and all of February going to the doctor's once to twice a week; I spent March the same way.  By April the schedule changed, but I still was going to Cortland once or twice a week for appointments (aka chemo).  That continued to be my lot all the way through mid-July.  I had about a two-week reprieve and then began daily trips to Cortland, Monday through Friday, thirty-three times.  So, if I count back to November 30, when this all began, I have spent 10 months dealing with this disease.

I can count the difficult moments.  I can count the blessed moments.  I can count the disappointments.  I can count the joys.

Am I now in the clear, once I finish radiation therapy?  No.  Regardless of what future tests and exams show, cancer will always be a part of me.  It may be gone now, but there will always remain the question of whether or not it will return some day -- even after I pass that five-year mark so many aim for to be classified as cancer-free.

Still, this is a time of celebration!

God is good.

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.

VBS Was This Week

This week has been VBS at church.  It has been odd to have to not be involved, but I just am not up to it.  I have been going down for the closing portion of the morning just to see who all is there and get a sense of how things are going.

I really have not been feeling as perky as usual, this being the week after chemo.  I really can’t take deep breaths without coughing, and so I have to be careful about how quickly I move from here to there so that I do not have to “catch my breath.”  When I have to do that, I have to take a deeper breath than normal, and I get coughing, which makes me have to take deep breaths, which makes me still cough . . .  I have to work at not letting the coughing trigger my having to take deep breaths.  

I must admit that I am getting weary of all of this.  I am seven months into all of this, from my initial appointment to the mammogram to the ultrasound to the MRI.  Then came the meeting with the surgeon, two biopsies, diagnosis of cancer (two types), the glitch of the infested cyst on my back, the surgery, the pathology report results, putting in the port, and now chemo.

I just want to be done.  I remind myself that this is how is it – just deal with it!  I realize that the end will happen.  Two more chemo Mondays and that is done.

I remain thankful that God has kept me from having too difficult of a time with the chemo. 

A Song in My Mind

About a month more of chemo . . .

This song I hear from time to time on the radio.  The second verse and the chorus especially speak to me:

"He loves to hear our praise

On our cheerful days

When the pleasant times out weigh the bad, by far;

But when suffering comes along,

And we still sing His song,

That is when we bless the Father's heart.

"God wants to hear you sing

When the waves are crashing round you,

When the firey darts surround you,

When despair is all you see.

God wants to hear your voice

When the wisest man has spoken

And says your circumstance is as hopeless as can be:

That's when God wants to hear you sing!"

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What is my heart's response as I am engaged in this cancer battle?  Do I feel sorry for myself?  Do I ask "Why me?"  Am I unhappy with God for allowing this in my life?  Can I still exhibit joy in spite of my current circumstances?  Some things to think about, for sure.

www.youtube.com/watch?v=mKnh4LeNOww 

Today Is My Birthday

Today is my birthday.  Usually this is not a big deal because I am not at any significant age:

• I am way past being old enough to drive.
• I am way past being old enough to vote.
• I am way past being old enough to be considered a mature adult -- at least most of the time.
• I have passed the age where I can initially join AARP.
• I have reached the first two levels of qualifying for senior discounts (50, 55)

But, this year I have learned that when a person has cancer, celebrating every birthday is a big deal.  The American Cancer society calls itself the "Official Sponsor of Birthdays."  This may explain why, when I returned to the oncologist's office for the blood draw today, I got a big hug from Nergiz.

I have learned that I need to think of my birthday a little differently now.  It's not the age I am; it's the fact that I am here to celebrate it once more.