Tuesday, March 29, 2011

Divine Intervention

I know...long time, no write.  It seems the better I feel, the more energy I get, and the more I am catching up at work, home and with family.  But here I am again to talk to you about my journey.

Having this break from any medications and not needing to be at the chemo center (due to my current decreased heart function) has become a good thing.  I didn't know just how much I needed this "little break" in between the next stage of the journey.  I still wish that I could have kept my surgery date of 4/13, but "it is what it is!".  The last entry was just after the stronger Herceptin drip and the last muga scan.  I was really feeling very drained physically and emotionally.  The news about my heart was very disconcerting, but the news of the forced vacation from the chemo center was kinda uplifting.  Not that the break has been "smooth sailing"!  I have experienced severe joint and muscle pain in my legs and my hips after that last Herceptin!  I'm pretty good with pain and discomfort, but I was finding that just going up and down stairs or climbing into bed would have my legs groaning in pain.  I will be telling my oncologist all about this when I see her on 4/15 (that seems like such a long time away!).

As the leg/hip pain is starting to dissipate, I am finding myself feeling almost "normal" again.  I look in the mirror and see my fuzzy head getting a little more fuzzy.  I think it will be coming in all white and I am thinking I may leave it like that.  Remember how I panicked about not having "bangs" since I had them my whole life?  Well now...who cares?  (How perspective changes with cancer!).  I am also thinking that once my hair grows in just enough, the wig is coming off and I may never wear bangs again!

Can you also remember I told you about a friend of mine who has had a double mastectomy and how she was willing to let me see and feel her implants?  Well she did just that.  We were coming back from a church meeting and were talking a bit about ourselves.  She suddenly said, "Well, are you ready to look right now?".  I wasn't sure I really was, but I said "Yes!" and we went to the bathroom at church, locked the door, and she pulled up her top.  I cried.  She thought it was because I was horrified.  I wasn't.  I cried because they looked just fine and I knew now that I would definitely be OK with my implants.  Believe me, they are not like having your own breasts, but they sure are a good substitution.  She even had tattooed nipples that looked almost real!  I was so happy she showed me.  I even felt them and they feel somewhat harder than a real breast, but not bad either!  I can do this now.  What a good friend to know I would need this and be willing to do this!  We stood in the bathroom for a while talking and crying.  She told me that even though it is two years ago for her, she didn't realize how much she needed to talk to someone about what she went through.  And she is feeling more "healed" by talking to me.  I am feeling more "whole" by being with her.

That's when I realized it is all God's Divine Intervention.

I have needed time to breath.  I have needed a break from constant cancer thinking.  I have needed to cry.  I have needed to feel more secure in my decision about having implants.  I have needed my own life back, if just for a little while.  I have needed to stop the fast moving train so I could get my head around all that had happened and all that was to come.  I had prayed about it...and God made sure it happened.  Yup, Divine Intervention alright!

For the next two weeks, I still have this time to myself.  I am not needed to do anything until the next muga scan on 4/13 (to see if the heart function corrected itself), and my appointment with my oncologist on 4/15 (to decide what's next).   I do need to also call my surgeon since she has "penciled me in for the week of 4/17" somewhere and I need to touch base with her.  But for now, there is nothing I need to do but wait and breath and just be "me".

So I thank God today for His Divine Intervention and for this "mid-journey rest".  Decisions ahead, but for now...peace!

Friday, March 18, 2011

A Serious Detour

Things were looking up, comparatively.  Chemo was done, surgery was going to be planned, Herceptin, every 3 week dose, had begun.  I had just had my third muga scan and seen my surgeon to plan the date for my mastectomy.  It seemed that spring was beginning to show its face in warmer days and birds calling each other in the early morning.  Spring was a time I had long been looking forward to as it would herald significant progress in the breast cancer journey.

As someone said today, "Man Plans, God Laughs".  It happens...and I am a planner.  I need to know I have all my "ducks in a row" and that things are going along according to "the plan".  Today, I don't think anyone was laughing...even God.

My cell phone rang and I saw it was my oncologist.  Since I had just had my muga scan the day before, I figured the office was calling to give me my results.  They were...but the results were not what I had anticipated.  The moment I heard my oncologist speak, I knew she was worried.  It seems that the scan showed my heart function was affected by the medication.  I knew this was something that could happen, but I was feeling pretty good and not thinking this could happen to me.  (I need to get over my feeling of "invincibility".)  Again, like the phone call that started the journey all the way back in August, this phone call also would change things.

I had to stop in her office to pick up a letter excusing me from Jury Duty (doesn't this always come at the wrong time?), so she asked me to stop in.  The heart function change is slight, but thankfully, my oncologist is very proactive.  She told me there was no damage to my heart, but that the functionality of the heart had been compromised slightly.  Therefore, she was suspending any further Herceptin, wanted me to have another muga scan in four weeks, and then meet with her the next day.  For some people, the function can "bounce" right back with this longer span of time between a treatment.  For others, it may not.  If that is the case, then she would need to determine if I could continue on the Herceptin and if not, what options were open. There are medications that can aide heart function while on this therapy; and/or other accommodations can take place (longer span of time in between treatments, lower dosage, etc.).  All of these decisions would be made after the next scan.  The worst of all was that I had to cancel my surgery date which had just been confirmed, since quite naturally, having this result would not be an optimal time for surgery.

Once again, I am disappointed beyond words.  I so dislike "untied ends" and the wait of four weeks to find out where I go from here.  Not to mention the worry of this heart function problem.

So I am at the mercy of this serious detour and just need to wait out the future.  

On a brighter note, my hair is starting to sprout and my husband now calls me, "Fuzzy".  One of his favorite things is to run his hand back and forth across my head.  While it is annoying, it is also endearing, so I endure it!

If you have a moment, say a prayer for me that my heart returns to its normal functioning and I can leave this detour and continue on my journey toward wellness and being cancer-free.   

Tuesday, March 15, 2011

On the Herceptin Train

Today I began the first of the "every 3 weeks for one year" regimen of Herceptin, which is a drug used for women who are HER2 positive to prevent cancer cells from multiplying and growing.  I remember this was one of the first pieces of "good news" I received after the diagnosis.  My surgeon called specifically to say, "I have good news...you are HER2 positive so down the line you will be able to receive a medication that will help you."  I told her she was speaking Greek and I would need more information before believing that!  But now, today, here I am done with the chemo cocktails (while I still think of this drug as a chemo extension) and onto this new turn in the journey to help prevente any recurrence while strengthening my body's ability to come through this and say "goodbye" to cancer for good.  Having had time to do some research, all the surgeon said six months back was true.  Herceptin has proven to be a "wonder drug" for women with early stage breast cancer like my own.  And best of all, my hair can still grow back while on this drug!

When my oncologist asked if I had any questions last week, my first question was about my hair!  She told me that about three months from now, my hair should be about and inch or two long and as long as I am comfortable with that, I can take off my wig and/or hat and let the wind blow freely over my head!  I am looking forward to that.  I understand that it will take longer for the eyelashes and eyebrows, which is disappointing, but no choice on the waiting.  Thank God, again, for cosmetics! 

Last Thursday night, I came down with a vomiting and diaherra virus that was just stampeding through our preschool and our church--adults and children alike.  It was the first time in a long, long time I was sick like that!  Having been with the preschool for over 30 years, I have a pretty good immune system.  But, going through chemo and having low counts, that is pretty much shot!  So it was only a matter of time actually before the "bug" decided to "bite me"!

It was pretty intimidating, though, once I developed a fever.  It had been drummed in my head that any fever over 100.5, I needed to call "chemo central" right away.  My fever became 100.8, and it was time to call!  I was asked if I had any antibiotics at home.  I did not.  They told me if the temperature got to 101, I was to call immediately for a prescription and with the number of a 24 hour pharmacy and start the medication right away.  If the fever went higher, I needed to go to the hospital emergency room as soon as possible for an IV antibiotic.  I knew in the back of my mind that any sign of infection could be serious, but this really brought it home.  Thankfully, the fever never went any higher.  But I was sooooo weak for a few days that it was all I could do to get off the couch or the bed!

Today finally feeling better, thankfully, since I knew I had to go to the chemo castle once again.  It was kinda disappointing to be going there because it felt like chemo had never ended.  In fact, some of the "regulars" I saw said, "I thought you were done!"  But once you mention you needed another medication for a while, they all understand since they have been there or heard this might happen in their own future.

Tomorrow I go for the "after chemo" MugaScan to check for any possible heart damage (something that needs to be checked periodically).  And Thursday, I go to see the breast surgeon to get the plans organized for the surgery.  For now, I am on the Herceptin train ride for the next year...next stop...mastectomy!

Tuesday, March 8, 2011

"Better to Be Seen..."

The last few weeks my blogs have had some time in between them.  That is because the "middle ground" I was on seemed without change for the time being.  The treatments were winding down, surgery was coming near, and I was feeling the same...tired, same side effects, and anxious for chemo to be over.

And now...here I am!  TODAY WAS MY LAST CHEMO!  (Cue the falling balloons and the confetti.)  This announcement is, of course, tempered by the fact that I have to continue going to Chemo Castle every three weeks for Herceptin, which is still a cancer drug that has to be fed to me through the IV tube.  However, I am done with the Taxol and maybe now my body can slowly begin to recover from some of its side effects.  I am most anxious to get rid of these "pins and needles" in my hands and feet and for my hair to begin to grow.

I woke up this morning so wanting and praying that my counts would be good.  I was all too aware that the longer I was on this drug, the more I could expect bad counts to happen.  And just two weeks ago I needed the shot to boost the white blood cells.  So it was with some trepidation that I walked into the chemo ballroom also hoping the port could be accessed again.  This time my chemo nurse was the older one with the loud laugh and wicked sense of humor.  She came up to me and said, "Sharon, I'm your nurse today."  As she began to get the tools together to access the port, I reminded her how I have had some issues getting the blood return lately.  Her answer was (and know she said this half joking), "Today we have no time for that, so it is just going to work."  Oddly, that was comforting.  And yes, the room was quite full today.  She put the needle through my port, hooked me up, and drew that blood like there was no doubt it would be there.  I could have kissed her--cause there it was so rich and red in the syringe.  My blood was sent off to be tested and I sat and waited.

My oncologist has a very revealing face.  I knew the minute she entered that there were some concerns.  As she asked me questions, I could tell she was weighing something in her mind.  Finally, she told me.  My white blood cells were once again lower than she wanted and she usually doesn't give chemo at that point. BUT (and thank you, God, for that BUT), it was my last chemo and she knew how I was looking forward to it.  AND I responded well to the shot last time to boost the counts.  AND in general, I tolerated most things very well....even the tiredness and need to be watchful during the times my count was down.  So, she granted the permission for the chemo!  Along with this permission she reminded me that I do need to go in on Thursday for the shot to boost the count and I also need to have another MugaScan (for any potential heart damage...yes, another side effect) before surgery can happen.  But hey, those are little things now (comparatively...I can remember when they were BIG things).

So this week will be very busy.  And it is coming off of a very busy time for me personally.  My preschool just celebrated its 35th Anniversary during last Sunday's worship (we are directly connected with the church).  It was the most wonderful day and I will carry the memory of this day always.  There were so many families and congregation members that came to celebrate.  The service itself had some "testimonies" from past, present and future family members that were so inspiring and uplifting.  There were many other moments that filled my heart and made all we do at the school seem so appreciated and fulfilling.  But it had been enormous work getting it all together and the last couple weeks were jammed with all the details needed to make it all happen.  I was exhausted!   And now I know it was not only all the work, but low counts.  Sometimes it's easy to forget that there are issues I need to remember as I live my life outside chemo.

Before I left today, some of my chemo friends came over to give a hug and congratulate me on finally finishing.  And when my husband and I left, they all wished me well with smiles and hope in their own eyes.

Just before I left, someone came in that I hadn't seen before.  He was greeted by another patient who said,  "I haven't seen you in a while.  Good to see you!"  His answer was "Better to be seen than not seen at all."  And he is so right...right in that it is better to be here and alive than not; and better that chemo patients like us are seen for WHO we are and not WHAT we are.

Someone wrote me a little while ago that my blogs have helped her to see that there is more to an individual going through chemo than most people know.  That is exactly why I am writing this...both for the individuals who are going through this and can empathize with my experience; and for those who have no idea what goes on behind the words "I am going through chemo right now."

Next steps:  shot, MugaScan, appointment with Surgeon and Plastic Surgeon and then the surgery itself!  Things are going to be happening fast now.  And I keep in mind that all these things make it easy to say the words, "Better to be seen than not seen."  Have a good day/night!

Tuesday, March 1, 2011

It's Not You...It's Me

If I seem cranky lately, it's because I am at the point where all of this is just taking too long.  I have only two more chemo's to go, and I am impatient for it to end.  So please know "it's not you, it's me!"  Today was the 19th chemo day and after today there is only ONE more left!  I am feeling very impatient and tired of all this.  Getting ready for these mornings anymore is getting very automatic.  I take out my "chemo bag" and stuff all my necessary chemo toys and games in it.  I need reading material; crossword books for my husband; pens; a pad of paper (for note taking); my small make-up bag that actually has gum, extra pens, tissues, anti-bacterial hand soap, lipstick, and tums; a small calendar; a check for the co-pay (yes, there is a co-pay every time!); a bottle of water; and a granola bar in case the treatment goes longer than usual.  I then check e-mails from preschool, shower, slap some make-up on my face, and get dressed.  

Make up takes a little longer right now because I have lost my eyebrows. To help me make some eyebrows, I have one of those crazy plastic stencil eyebrow pieces that I apply to my head, brush eyebrow powder over it and VOILA!...an eyebrow!.  Sometimes I have to do it a few times before I get the eyebrows to look like they match in height and width so I don't look like "The Riddler" or a circus clown.  Make up is a good thing, however, when you have no hair as it enables you to make yourself feel more feminine at a time when you are feeling anything but!

When it is time to get dressed, I need to pick something that is comfy, warm, and with a v-neck or an opening so the chemo nurses can get to the port.  Since most of us tend to sleep (because of meds) through chemo, wearing something that feels comfortable is key.  That means something loose and soft like sweats.  It also needs to be warm because the chemo room can be on the cold side for the sake of killing floating germs and because it has some great big windows that the cold air slips right through.  But I love the windows (as do most of the people there) since they bring the outside in and there is always something to watch if you are tired of reading or talking.

When it's time to go, I feel my body already saying "NO....I don't want to do this again!", but I just keep putting one foot in front of the other and make myself get in the car and begin the ride to the "chemo castle".  Once there, it is sign-in time, wait for your name to be called, get weighed (I always feel like it's weight watchers all over again), and then find a chair.  Finding a chair is the most important part of the day.  You need to make sure it is a comfy one since you will be in it for 4, 5 or more hours.  You also need to make sure the "recline apparatus" is working (they are in the process of getting new chairs).  Finally, we look for a chair that has a "guest chair" beside it opposite the windows.  When we find a place that satisfies us, we settle in.

Today I am anxious about my port.  Now that it has proven to be temperamental, I worry about it working.  As all of the preparations were done to access the port, I just kept praying it would work.  Finally, the moment came and the fluid went in, and blood was returned....wait, no it wasn't...yes, there it is...no, it disappeared again.  The nurse told me to turn my head to the side and cough and VOILA again...It worked!  So now I wait for the report on the counts, I hear the clicking heels of my oncologist and find out the counts are fine!  Thankfully, I can get today's chemo and then there is only ONE more!

I am also cranky because I am feeling more tired that I did a few weeks ago.  By afternoon some days, I just need to go home and rest.  By night time, I just want to be home in PJ's as it is an effort to go out.  The "pins and needles" in my fingertips and toes is always present now and I have also developed the sorest legs that ache when I go upstairs or do a lot of walking or stay in one place too long (either sitting or standing).  So if I am not smiling as much as usual...."it's not you, it's me!"

I still place a smile on my face when I go out in the morning and for the most part, the days are good.  It's just that all I have mentioned is playing in the background while I that smile is showing.  Cancer is never far from my mind and it is a part of every day.

Now that there is only one more chemo left, I can make the appointment with the surgeon and then begin the plans for that part of this journey.  It has been a long time coming and we are headed into the curve before the home stretch.  However, if I seem anxious...."it's not you, it's me!"   Because I am....anxious about it.

I received this verse from a friend:  "God gives me power when I am worn out; and strength when I am weak. (Isaiah 40:29)  And this lets me know..."it's not me, it's GOD!"  And He will see me through and calm my anxious spirit, and help me to smile and give me strength and bring me peace.  And for that I thank God...literally!