Tuesday, February 22, 2011

Taking the Good with the Bad

There was good news at chemo today!  My port was able to be accessed and my counts are pretty good!  In fact, my oncologist said that they were so good, she felt they would be good for next week also!  So, I don't have to come in again to get another shot (I hadn't realized she was thinking this...but glad I don't have  to!).

I have set next to people at chemo lately that have had stories and journeys that are more complex than mine.  In a room like ours, people don't feel they need to hold back in letting you know about their story.  We can all "skip to the punchline" since we are all in the same boat and we are truly interested in each other.   I have always realized that some of the other stories can  be more serious than my own; but hearing some of the others speak, I just marvel at the human spirit and our ability to endure.  Spirituality is always a part of the conversation since all of us need and rely on a relationship with someone more powerful than ourselves.  When your life is brought into question, you have that need and form or nurture that close relationship with God rather quickly.

Don't think that all conversations are so serious because we do our share of laughing in the chemo ballroom also.  We rejoice with each other as we are "counting down" our sessions.  We ask after each other when we don't see a "regular" in the room.  We joke with our chemo nurses about asking the "bartender" (chemo drug mixologist) for another "round" or other jokes I am sure they have heard many times before.  But they politely laugh along with us.  It is a community within the confines of a room.  It is, unexpectedly, a place of safety, comfort, and encouragement.

The woman sitting next to me today told me that she is so happy she is coming to this chemo center.  It seems she started at another center and they just did not give her any hope (she is Stage IV) and had just seemed to treat her like she was a "number" already on her way to dying.  She wasn't ready to give up yet, so switched to this center and said she was so glad to have found a place where they were honest about her disease, but would not give up on her.  They treat her like she is ready to live; not ready to die.  This is the attitude of most cancer patients...they are ready to fight as long as they can and want their oncology team to fight alongside them.  Each knows their own limits and wants to make decisions about care as they are able and ready to do so.

We are all dealing with crazy side effects and we laugh about some of them and commiserate about others.  This morning, I realized that not only has most of the stubbly hair I had disappeared, but I also lost the rest of my top eyelashes and my eyebrows are just about gone (the chemo nurses said this would happen with the Taxol).  My watery eyes are even worse due to the loss of eyelashes.  My runny nose is still going strong, but since it is "cold season", I am hoping others just think my constant need for tissues is because of the season.  My legs are definitely weary and achy from the drugs and stairs are still a little harder to go up now.  I have some tingly "pins and needles" in my hands and feet, but fortunately, not so bad that it is difficult to walk or use my hands (as it is with some others).  I do find that my finger grip isn't as good as usual, but not too bad yet.  I am tired by night, but able to function all day.  My mind doesn't work quite as well as before, but I have a great staff at work to help...and a lot of support at home (although my forgetfulness is laughable sometimes).  The worst are the "chills" that come and go.  These chills are more a "chemical chill" that come from deep within and you just can't seem to get warm!  I need to pile on clothes and/or blankets until it passes and/or the hot flashes come and take them away.  This could be the only time I do indeed pray for a "hot flash" (LOL)!

Only TWO more chemo's to go!  This is the good news.  However, the bad news...Today, I asked my oncologist, "What happens after that?".  And I heard the discouraging news that I will still need to come back to the chemo ballroom for the next YEAR for the Herceptin every three weeks!  I somehow thought there would be a pill for this after chemo (right now, I get Herceptin via IV along with my chemo).  Evidently, it is not a pill but needs to come through an IV bag.  (In case you want more information:  Herceptin is a drug that targets the HER2 receptor on cancer cells.  This receptor signals cell growth and if you test positive for HER2 (as I did) the dividing and multiplying can happen more quickly.  This drug prevents that growth from happening.)  So even though I was discouraged by this news, the woman next to me changed my thoughts when she said, "Isn't it great that they have this drug to further ensure that you will have a good outcome?  It sure beats the alternative!"  And she is right.  It's all in how you look at it.

It's an old expression, "take the good with the bad" but it still works.  We all do this to some extent in our lives.  I think putting a smile on your face, though, is all in how you handle the balance of these two things.  One blessing of this journey is that I now look at others differently and even when they are smiling, I wonder how they are doing with their own "balance".  It causes me to ask quite often, "So, how are YOU doing?"  Sometimes a person really needs that question and really needs to answer.  I have that patience now and I thank God for it.

"How are YOU doing...?"            

Friday, February 18, 2011

Blood, Sweat, and Health Insurance

Chemo Day was Tuesday once again.  I was now looking at just four chemo's left and getting so close to the end is both exhilarating and a little scary all at the same time.  It's funny how you can get so used to something...even something like chemo...that it becomes such a part of you that you are once again a little unsettled by the change to come.

Numbers, Numbers...it is all about the counts.  It is the first thing everyone wonders about once they enter the chemo ballroom.  "Will I get my chemo today?",  "Are my counts up?", "I think I'm feeling OK.".  There is much that goes through your mind as you wait for the blood tests to reveal your fate that week.  My oncologist wears heels every week that click heavily as she walks into the room.  I always feel my heart beat along with her footsteps.

This day, already two others had heard that their counts were too low.  I knew that my counts had already been low the week before and I had just "made the grade" to be able to get chemo.  I was hoping this week would be OK also.

I stated to get anxious when, once again, the chemo nurse couldn't access blood from my port.  This had happened two weeks ago, but since there was a small return, I could get chemo through my port; although the blood test had to be drawn from my arm.  And I do have lousy veins on my left side.  It is always so difficult for the nurses to find a vein to draw from.  I have had blood drawn from places on my arm that I did not think would be a possible spot.  They are good at their job.

This time, though, there was absolutely no return at all!  And she tried her best!  She flushed it several times and gave me a shot of heparin to see if that would help.  She had me turn to my side and cough...breathe deep...all kinds of tricks.  But there was nothing in the syringe.  This began a long wait on "what would be done".   It was decided that I needed this certain drug that would dissolve the "film" that my body seemed to have produced within the port which was preventing the return of blood (the drug is kinda like roto-rooter of the port).  It seems this happens in "some people"...and I guess I happen to be one of them.  There was about an hour where the office was fighting with the insurance company for the approval for the drug I needed.  When the dust settled, I was told that to get the drug that day would be very costly and our health insurance was fighting it...however, to order it to be delivered later in the week would be OK and not as costly (you figure...it's just insane!).   It was also decided that they didn't want to risk giving me chemo through the port even though the flow IN was OK, so the nurse had to try to find a vein in my arm that would be sustainable for the blood test AND the chemo.  Thank goodness...she did!  In the middle of the inside of my forearm, she found...somehow...a vein to do both.  Then I wait for those clicking heels.

Finally, I hear them!  My oncologist sat down and told me my blood counts were low once again but good enough to get the chemo (YEA!).  However, they were low enough that I would need to come in on Friday to get a shot to boost my counts (YUCK!).  And since I had to come in on Friday, I might as well also get the "film-dissolving drug" at the same time.   I was glad for this since they said the drug had to sit for about 1/2 hour to work  (plus the wait that always happens in the chemo room) and being able to get it on Friday, I wouldn't have to add the 1/2 hour plus to my chemo time next Tuesday.   After all the waiting, chemo was hooked up, benedryl dream begun, chemo done, and home again in a daze.  

Today, I went back to have the drug and shot as planned.  The roto-rooter drug worked and now the blood is flowing free once again.  Hopefully, the shot will work and my counts will stay up enough to continue to get chemo next week.  THREE MORE LEFT!

Then...the next turn in the journey...the surgery and reconstruction.  It's been a long time waiting and I am, as I said, both happy and a little anxious.   


Monday, February 14, 2011

Spring Remodeling

I wanted to get right back here the night after the plastic surgeon visit, but my husband and I decided last minute to go visit our granddaughter (and her mom and dad) who live about 3 1/2 hours away since I was feeling well and the weather was looking good.  There just didn't seem to be time to write before we left.  It was a great weekend, though, and so good to finally hug my granddaughter again.  Just to hear her say, "I don't want you to go, Me-Ma, I miss you.", both broke my heart and made it fill with love all at the same time.  There was much to be discussed this weekend between family and much to share...which we did inbetween visits to Hershey's Chocolate World.  What better weekend to be there (especially for chocolate) than the weekend before Valentine's Day!

Before we left, my husband and I were supposed to visit two plastic surgeons on the recommendation of my breast surgeon.  I did plan to see both but one of them was not on our insurance plan; and no matter how good he might be, we just can't afford to go "out of network".  Oh the wonders of our Health Care System! We ended up visiting the one that was on our plan and he happened to be right around the corner from the cancer center.  I know quite a few people who have been to him and they all gave him glowing recommendations, so we were feeling good about seeing him.  He did not disappoint us, and in fact, has a sense of humor, is very professional and answered all our questions.  He is well acquainted with my breast surgeon and has worked beside her on other surgeries.  He seemed glad to know that she would be the other surgeon there the day of my next surgery.  

He began by showing us pictures of other women who have had surgery done by him...before and after shots.  I kept thinking that someday, someone would be looking at my photos also...which is a little weird.  But do know that all the photos are from the neck down... there are no faces.  He then let me know "remodeled" breasts will never feel or look the same as my natural breasts.  Also, that there will be a period of adjustment but that eventually, I would be "happy with them".  He talked about the difference of working on radiated breasts and how it was more difficult.  I let him know that I was not having radiation, and was looking to have a double mastectomy.  Before going further, he wanted to know why and all about my journey.  Once I shared it with him, he said..."No one is ever going to try to change your mind about the double, since it is your body and you are the one that has to feel like you did all you wanted to do to ensure a good outcome.  But, if you want to ask me more about having just a single mastectomy, I am here to answer those questions to round out your decision."  Even his answers did not change my mind.  I just can't live with the fear of this happening again.  Although there are no guarantees, I want to "up my ante" for the best possible future.

He then had me undress and stand against a wall to take my photos (OK, I was starting to feel like a porn star!).  He made some lines on my breasts showing what he would do (and boy, I could see my husband squirming in his chair during this!), talked about tissue extenders, drains, the probable 2 day hospital stay, the first two weeks, how total recovery would be 4-6 weeks, and how he and I would be becoming very good friends as I would be seeing him often during that time.  We discussed and decided on the implants since the "flap surgery" is more complex and a longer recovery.  I told him I had a couple close friends who had been to him, and he remembered both of them.  One is from my church and also a part of the support group I met with a couple weeks ago.  She has even offered for me to go to her house to look at and feel the implants for myself.  The surgeon thought that was a great idea; and in fact, was happy to hear I knew her since he said she would be a very good support and informational friend to have during this time.

We talked a little more about the procedure itself and then he took notes and told me he was going to get in touch with my breast surgeon to discuss my case further.  He was glad I had come to see him when I did as he said I have time to get all the information I need and also can schedule my surgery in April for a date that would be convenient for me as well as my surgical team.  I told him I had (hopefully, as long as counts stay OK) 4 more chemo's, and then I would be meeting again with my breast surgeon.  He said to call him also about that time, but to realize that I would need 3-4 weeks of recovery from chemo before he would even do the surgery.  

So, spring is coming around the corner and just as families think about remodeling their homes...my own remodeling will begin then also.  Today was a warm winter day and I heard a few birds chirping this morning.  It was a "teaser" day of springtime and a reminder that this part of the journey is almost over and the next is almost ready to begin.

I'm feeling good about all this.  It is, of course, not what I would have wanted to happen to me...but it is what needs to happen now.  

One definition of "remodeling" is:  "to cause a transformation" and it seems to fit with my life now which has been transformed by this whole journey.  The blueprints are now out and the remodeling is being planned! Stay tuned for the next part of the journey to come.

Tuesday, February 8, 2011

On Middle Ground

This is the part of the journey that is "Middle Ground".  For many people, they think I am done with chemo since it has been a while.  I don't look "sick", so they assume I am feeling as good as I look.  (Hey, ladies, we all know make-up does wonders as long as you know what you are doing.)  I also wear either of two wigs during work or church or some social events...one an everday one and another that is a little different if I feel like being someone else. (Once home I go bald; elsewhere, I wear my "newsboy hat".)  I am sure some people are now thinking it is my hair since they have seen it often enough.

I have nothing to complain about right now.  I am so thankful for these last treatments to be going well.  I have some tiredness; especially after dinner, but I am OK during the day.  Some things like stairs can still give me pause, and though I love to walk, I was never an avid exercise person.  My "chemo brain" comes and goes, but I have been able to function fine (or at least I think I have?).  About the third/fourth day after the chemo, I do get the "pins and needles" in my fingers and toes and that chemical chill that just penetrates right though your body.  But other than those things, I am coasting along.  

I had my 8th treatment today and have still 4 more of these to go.  It feels like it has been a long time but now I am on the "other side of that mountain" with the end of chemo in sight.  I have an appointment this Thursday with the plastic surgeon and I guess I will get to see all those pictures and hear all the facts for different future decisions I need to make for my body.  Important decisions that will impact the rest of my life.

In the chemo ballroom today, there were four people who were told they could not get their chemo because of low counts.  I am beginning to see just how common this is for all of us.  In fact, one patient said, "What did I do wrong?"  The nurse answered, "Not a thing...it is just the chemo doing its job and your body's response to the chemo at this time.  There is nothing you did or can do to change it...your body just needs to "catch up" with a week's rest."  But I could see the disappointment on their faces and knew just how they felt.  I was lucky that my counts were still OK this week.  I am still anemic, but not yet at the "danger zone".  One of the patients who could not get chemo this week had needed two blood transfusions during this past week.  Believe it or not, she comes with her mother, who is also receiving chemo at the same time.  Life can be full of surprises!

There was also a conversation between two other chemo buddies.  One was a "guest" for a chemo patient and the other a patient.  The "guest" was telling the patient that he needed to be there for his wife, even though he misses a day's pay (and wouldn't you like to have a few words with that employer?).  The other patient said to him, "But what a gift that you want to be here.  That is your strength and your blessing for your wife."  WOW...kinda puts it all in perspective.  I feel that way about my husband, also...and even more after hearing that conversation.

People are starting to talk about plans for the spring.  I find I am also looking forward to this, but it is becoming such a "grey area" for me right now.  I don't know when exactly I will be having the surgery and how I will be afterward and how long I will need to recuperate.  It is my "middle ground" time between just trying to function week to week through chemo and now seeing more clearly that there is indeed so much more to come.

Many think when I am done with chemo, I am done.  Then I have to tell the story of the next part of the journey again.  They always look confused since I had surgery at the beginning of this journey.  So I have to explain again the reason for all this and why each cancer treatment plan for each patient can be so different.

I also hear a lot of people talking about "God's WIll" in regard to my cancer and this always gets me going.  Again, I have to reiterate that it was not "God's Will" for me to get cancer.  But He is right in the midst of it with me and will be there to the end....and beyond.  A friend sent a quote this week from Henri Nouwen, an internationally known Dutch-born Catholic priest and author of 40 books about spirituality that says it very well:

We are often tempted to "explain" suffering in terms of "the will of God."  Not only can this evoke anger and frustration, but also it is false.  "God's will" is not a label that can be put on unhappy situations.  God wants to bring joy not pain, peace not war, healing not suffering.  Therefore, instead of declaring anything and everything to be the will of God, we must be willing to ask ourselves where in the midst of our pains and sufferings we can discern the loving presence of God."  You go, Henri!

This "Middle Ground" feels like a time to just "coast" for a while.  I find there are not as many phone calls or cards or people asking "how are you doing?"...but God is doing all that for me, so it's OK.  Please know, also, that there are still those who understand and know it is still a journey and will ask the questions and give the support and I am grateful to them for remembering just as I am grateful to you for continuing to check in and read this blog.   Thank you for meeting with me on "Middle Ground" and hanging in for the next chapter in this journey.  

Friday, February 4, 2011


First, I am glad to be back on-line!  The recent winter ice and freezing rain storm did some major damage to some wires around our home, and many of us were without our home phones and computers for most of this week.  In fact, repairs had to be made to a large underground pipe carrying those wires.  And...my work computer was too busy with work!

It keeps amazing me at the connections that I keep making with others through this journey.  It sometimes feels like a dance where you grab someone with your right hand, then pass them and grab another person with your left hand and just keep repeating the "connection walk".

Last week at the chemo center, I met again the daughter-in-law with her mother-in-law who I had sat next to a few weeks ago.  The mother-in-law was just beginning her treatments and it had been the first time for her port to be accessed.  I was able to talk to her and let her know it would be OK.  It was good to see them again and we talked for a little while in the waiting room before treatments.  I didn't see them afterward, so they must have found a chair in one of the smaller chemo ballrooms, but this type of bond is quickly formed at the center.   

I did make it to chemo last week, in spite of the weather.  It was good, because it was not as crowded, and thus, we were out early this time.  But, speaking of connections, I did have a problem with my port!  I really haven't given my port too much thought as I never thought I'd have a problem with it.  The chemo nurse was able to access the port, it's just that she couldn't draw blood from it....and that is a most necessary first step for my counts and permission to proceed with the chemo cocktail.  She gave it a "flush" several times, and asked me to take deep breaths (and I did...almost hyperventilating with wanting it to work)...but still no blood.  She finally had to take it from my hand, but my veins right now are not good, so it just dripped, dripped, dripped into the tube.  But thankfully, she was patient and it was enough.  She told me to make sure I drink plenty of fluid a couple days before I come next week.  And I certainly will because that kinda freaked me out!

A couple days after chemo, I needed to make a connection with someone at our local public school regarding the placement of some children in need at our preschool.  While trying to schedule times to meet each other, I happened to mention what was going on in my life so she would understand why I was not available on certain days.  Right away, she asked if I would talk to a friend of hers.  It seems her friend had a very similar story to mine; only she was just beginning her journey.  I know how much it means to talk to someone who "has been there", so I gave her my cell phone number and I talked to her friend that very afternoon.  It was a good conversation, a meaningful connection, and someone I will definitely be reaching out to again.  These are the connections that mean the most...where I can help others as I have been helped by others.  

I no longer think twice about mentioning my journey to others.   First of all, I am not ashamed of breast cancer and its treatment.  I am glad that it can be diagnosed so early and survivors are all around us.  Second, there is always that "8 degrees of separation" between me and another future breast cancer survivor and I know God is reaching out to that person through me.  Third, I take back my own power the more I can voice the words and tell the story.  

Tonight, as I hear my sister-in-law talk about her daughter, who has been diagnosed with colon cancer...I can also connect with the concerns and love she has for her daughter...and the fear of the unknown of the pathology reports to come and the decisions about treatment.  There is just a much different reality in my life now and I am more open to really hearing other stories and sharing my feelings and my heart.  These connections with family are becoming very important to me and I am going to keep them important in my life and not let life overtake these relationships.

Now, before I disconnect from this blog, here are a few quotes to keep you thinking about connections:

"Life just seems so full of connections.  Most of the time we don't even pay attention to the depth of life. We only see flat surfaces."
-  Colin Neenan  

"We cannot live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects."
Herman Melville 

"When we get too caught up in the busyness of the world, we lose connection with one another-and ourselves.  -- Jack Kornfield

"It really boils down to this: that all life is interrelated. We are all caught in an inescapable network of mutuality, tied into a single garment of destiny. Whatever affects one destiny, affects all indirectly."
Martin Luther King Jr. 

Look for your own connections this coming week!