From Lemons, Make Lemonade

Now that the surgery date for the mystectomies is set, and the doctor appointments with cardiologist, my internist, and plastic surgeon also made, it is time to make "lemonade out of lemons".

I have spent some quality time doing my own inner complaining and ranting and raving and even wrote a poem of sorts last week about those inner feelings.  I have gotten mad at my body for betraying me with cells that became abnormal and tests that proved positive.  I have even taken a day or two to have a real "pity party" and take myself shopping to buy some shoes I didn't need and other assorted items that filled that hurting place.

I've completely used up my lemons so it is now time to make the lemonade.

I remember thinking at the end of last summer that I was feeling the need for a break from some things in my life since it was all getting just too mundane and predictable.  I was looking at changing some things; taking time from some other things I had been doing on a regular basis; and generally "clearing house" to figure out what I wanted to do "now that I grew up".  As I've said, be careful what you wish for...cause sometimes it comes to you in ways you don't expect.  I got the break, just not exactly how I pictured it!

Instead, a "break" turned into this long journey through the world of Breast Cancer and its subsequent treatments and surgeries.  It began last August and is still continuing now in April.  I have been through the initial surgery (lumpectomy/quadrantectomy), and the "red devil" combo chemo, and the taxol chemo, and started the Herceptin.  A mastectomy is the next part of the plan, and I have decided to have the bilateral version.  However, because of the toxicity of the chemo's and the Herceptin....my heart function declined somewhat.  It is right at the low point/but still OK point right now (which is why I need to see the cardiologist).  I am waiting on the "Okey-Dokey" from the three doctors listed at top, and then I am all ready for the May 11 surgery.  It has definitely been a long, involved process.

I still am lifted up, however, by those around me.  And I am so glad they won't let go, no matter how long this ordeal seems to be.  I get tired of talking about myself and know it must also be  tiring to hear; but still good friends and loving family members continue to ask the questions and listen to the answers.  They also still send cards, still phone, still e-mail, still send flowers (and I just got the most beautiful Easter Lily from some very dear friends), and still care and still offer to help with anything I need or will need. 

So, THIS must be...My Lemonade! 

It is mixed with the strength God gives me and the strength He will continue to feed me even when I don't feel very strong at all.  It contains the sweetness of my granddaughter's smile, the concerned eyes of my husband, and the knowledge that there will be people to count on when "the going gets tough".  It is stirred with the personal touch of my "old-same" and nephew, my niece, and my son.  And it is served with the warmth of family and friends who are always there and are just waiting to be called upon to help.  

Yup, the lemonade is ready and waiting!  And to that I sincerely say, 
"Thanks be to God!"   

Once Upon A Time

Once upon a time
words were spoken
that brought disturbing images
and worrisome thoughts
and all peace was disturbed.

I heard the words as if from afar,
seeing them in front of me,
hanging with great heaviness,
and refusing to float away.

It seems time stood still and yet kept racing on.
I think back to what has been,
and can't quite believe all that was,
and where I am 
and where I will be.

I am tired of "being sick".
I am so very tired of doctors and chemo ballrooms.
I am completely tired of my bald head 
with its white fuzzy hair poking through.
And I am crazy tired of making uneven eyebrow patterns
on my empty forehead.

Each month has seemed the same,
with its tests and the searching for good veins;
and the slow discovery of chemo side effects,
that are a reminder of the invasion of toxic drugs.

Into this small world that I have been travelling
now comes more unfamiliar territory.
There will be a rush of more tests 
and more doctors in more rooms.
I then prepare to meet my future 
as one who will be transformed.

On May 11th surgery comes
and meets me full-on.
What was...will be no more,
but what will be will remain a reminder 
of "once upon a time".

Time With My "Home Girls"

Things have been pretty much the same.  I continue to be on a "holding pattern" waiting to see what the news from my Muga Scan (coming this week on Wednesday) will say about my heart function and if it did indeed manage to go back to normal.  My hopes are that it did and all else can proceed from here.  If it does not, then I am sure my oncologist will have a plan for me.  I'm just concerned that the plan will entail more waiting or a whole new pathway.

My legs are pretty good.  Not much pain at all although they are still not my strong dependable legs.  I still have the neuropathy in my fingers and toes.  (I went out the other night with friends and if I didn't look at the wine glass in front of me, my fingers weren't quite sure of where it was.  Even though I nursed one glass all night, I am sure if someone was watching me, they must have thought I was drunk when I would miss my glass or almost tip it over!)  All in all, it has been a good resting period.  People keep telling me how good I look.  I am not sure if they expected me to look devastatingly sick and wasted...or if they are in shock that people with cancer can actually look OK even in the midst of it.  A good wig and knowledge of make up really helps.  However, people do then think that you feel as good as you look!  That's the pitfall!

This weekend will be an even better time during this "divine intervention period".  I am going with my "home girls" from my church to a retreat weekend with lots of talk, prayer, crafts, massages, walks, reading, time to be alone and time to be with others, etc.  I am looking forward to it and especially with the friends that will be there.  It is a good way to get through this weekend before I learn the news of next week.

Just heard today that another person from our church (who moved away a year ago) was just diagnosed with breast cancer herself.  I don't know whether it is that I am more conscious of hearing this...or if there is just more of it, but it is just overwhelming how many of us are out there.  I have already made plans to talk with her on Monday and I know she will be glad to talk it out with someone as I was when I began.

So that's all for now.  I am going to finish packing and I will write next after the Muga Scan.  In the meantime, if you would pray for a good result, it would be appreciated. 

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!

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.   

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!

"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!