De-ported!

Got my port out after having it implanted under my skin, up near my clavicle, 9½ months ago.

The purpose of the port was to make things easier for me and my veins during the period in which I had to do chemotherapy.  Infusions, as well as blood draws, were done through this port.

I remember the day I had it put in -- March 23, 2012.  I had been told the Monday before this by my oncologist that I was going to have to do chemotherapy after all.  We would start that the first week in April.  In the meantime, his office would contact my surgeon to make arrangements to have the port inserted.  As it so  happened, I had an appointment that Monday afternoon with the surgeon.  By the time of my appointment, he knew about my need for a port.  He had on hand a sample of one to show me and to tell me what he was going to be doing -- that Friday morning.

I showed up at the hospital early on March 23.  Although the insertion was to be an out-patient procedure, I was put under for the process.  When I came to, I initially wanted to sleep more, until I realized that if I wanted to leave the hospital, I needed to wake up.

I was patched.  The surgeon had a portable x-ray machine come to my room to get some images to be sure that everything looked good as far as the port was concerned.

My port had its first use the first week in April, when I went for blood work that was preceding my starting chemo.  The nurse had a gadget that was a needle made for use with ports.  She would insert that nasty needle into the "target" that was my port, a raised area that could easily be seen and felt.  The needle had some small tubes attached to it.  These were used to feed things into the port.  Always we would begin with a saline solution.  We knew things were good to go IF when we got a blood return.

Almost always, getting that blood return was not easy.  I would then have to stretch out flatter than I was.  If that did not work, I had to raise my arm.  If that did not work, then I had to turn to my side.  If that did not work, then I had to cough.  It seemed I just might have to stand on my head . . .  Eventually, though, we'd get it.

After I completed chemo, I still had my port.  One reason was that I was needing to have two more CT scans, one the end of July and another the end of November, to be sure some spots seen on an earlier CT scan were not a possible problem.  From the middle of July until the first part of December, I had to go get my port flushed every six weeks.  That would be the usual pattern until the time came when I could get it taken out.

I was excited when the oncologist told me that I could get my port out.  Arrangements were made with my surgeon, and the procedure was taken care of last Tuesday.  Again, it was at the hospital, early.  This time, though, I just had a local anesthetic.  I knew what was happening the entire time.

The gross part was when Dr. Bang was tugging at the port to free it.  He would also cut away the tissue that had grown around the port.  I heard him scraping it, also.  UGH!  Finally, it was free and out.  Pressure was put on my vein, up by my clavicle, to stop the bleeding where the tube from the port had been inserted in March.  I was patched up.  DONE!

I have said to several of my friends that I look at this past year as a time when I have been engaged in a battle.  I am battling a disease.  Getting my port out was an indication to me that for now, I am winning that battle.

To God be the glory.

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.