Tuesday, June 28, 2011

Warrior Princess!

Sometimes, I secretly revel in my alter-ego:  Warrior Princess!

She is always just below the surface, ready to come out and "save the day"; but sometimes to do that she has to fight through some large dark clouds that hide her way.  But she is always ready to make an appearance. 

When the Warrior Princess is around, I feel stronger than anyone around me.  I hear someone complain about some incident that now seems so trivial in my eyes and Warrior Princess wants to say, "If you think that's difficult, what about a diagnosis of cancer?"  When a friend gets so angry at waiting in a doctor's office; Warrior Princess suggests saying, "You are lucky that your doctor cares about you and wants to help you.  Maybe someone needed more of your doctor's time today.  Get over it!"  When someone complains about having to go somewhere, Warrior Princess offers, "How about staying home for a few weeks in pain, uncomfortable, and depressed!  Kinda makes being able to go somewhere less of a burden, huh?"  And Warrior Princess even goes so far as to give her opinion on what to say when someone tells Sharon that they had a lumpectomy and that's all they had to go through...but what a time they had!"  Warrior Princess wants to say "WHAHHHHHH!!  Try chemo and three surgeries.  Then get back to me!"  Warrior Princess has little time for sympathy; she's too busy fighting her way ahead and watching for danger.  She just can't deal with "the small stuff" like when someone complains about their fingernails breaking off because Warrior Princess really wants to say, "Try having a body part removed, and then give me a call!"

Yes, Warrior Princess is one tough cookie and probably eats glass or something for dinner.  And while she is needed sometimes just so Sharon can get through the day; sometimes she must also be "calmed down."  Sharon will be smiling and nodding as someone tells her yet again about a friend or relative who died of breast cancer (note to all:  don't do this to someone who is still fighting the battle!) and the Warrior Princess will keep asking, "Now?...do you need me now??? And since Sharon is the compassionate one of the two, she will tell her, "No, it's OK.  This person doesn't understand that their words are not helpful."  When someone asks Sharon how she is doing, and then doesn't wait for an answer, but proceeds to tell her a long, involved story of their own medical history, Warrior Princess is bursting to appear.  But Sharon tells her, "This person must feel that they have found someone who can understand just how hard a time they had.  Let them talk."

They are both halves of me lately; and I need them both.  Warrior Princess gives me strength and allows me to rant and rave and sometimes even get obnoxious.  But my truer self is also needed because I do understand that everyone around me just wants to help; that people need people; that it's sometimes hard to know just what to say; that God is not going to let me down; and that Warrior Princess is a gift to carry me through.

Today I went back to the plastic surgeon for another follow-up.  He said all is fine and said, "I bet it's good to hear that after all you've been through."  And I didn't need Warrior Princess to say, "Yes, you got that right!"  He is going away for a week, so I see one of his other colleagues next week...in fact, the one that assisted in my last surgery.  For the next couple weeks, we just wait for swelling to go down and for the dust to settle.  And be thankful that things are good.

Sunday I get to spend the day with my "old-same"...someone who never has to see Warrior Princess directly; although we do compare our "Warrior Princesses" and the times they have swept through our week.

Warrior Princess wants to end this by saying, "If you haven't had your mammogram, just what are you waiting for?"  And you better listen to her...she's can be quite forceful! 

Thursday, June 23, 2011

Drain, Drain, Go Away

I am finally "drain-free"!  

As my surgeon took the last one out today, I said to him, "That wasn't so bad."  And he answered dead-pan, "Well, unfortunately, you have had enough experience with them."  He's right....I feel like a sieve.  I have more "holes" in my torso than a slice of swiss cheese!  Just kidding, but there are quite a few of them; eight to be exact.  Four from the first surgery and four from the last surgery.  Getting comfortable is still a feat of endurance!  All around my chest area is so much swelling plus the swelling on my sides, that I kinda feel like the Michelin Man...not such a good look.

My surgeon has always called the need for skin grafts the "Plan B" (for when your breast skin fails you as mine did).  He was so proud that he had not had to go to "Plan B" with any of his patients.  Well, he will remember me, for sure, as you never forget your "first".  I did tell him that I could have done without being the first of his to have to go this far, but I am so glad the option was there. 

He also officially declared me "cleared for reconstruction".  The skin has taken well and after a couple weeks of letting the swelling go down and letting it "sit"; my body will be ready for him to get back to the job of reconstruction.  What a relief to now be at this point!

Tomorrow I go back to the "chemo ballroom".  I am so glad that the nausea from the anesthesia is gone.  I don't know how I could have walked INTO the ballroom feeling nauseous.  I am still not looking forward to it, though.  My oncologist told me that this initial dose of Herceptin (the three week dose) will be a little longer the first time; and then shorter after that.  Although I would love not to have to have more chemo medication, this is another layer of protection.  After coming this far, there is no quitting allowed now!  I just have to "put on my big girl pants" and get on with it!

A  good friend recently told me to envision this as climbing a mountain.  But not a "straight-up climb"...rather a circular climb slowly to the top.  This has really helped me in envisioning my recovery from here on.  And I can do the circular climb rather well.  It was the straight-up arduous climb I was trying to do that was getting too difficult.

It will take a couple weeks, but I should be feeling much better soon.  And my husband and I have planned a vacation for the middle of August, which we are looking forward to enjoying with a group of our friends.  OK, things are looking up.  I'll just keep climbing up that circular pathway. 

Tuesday, June 21, 2011

On The Road Again

I will be the first to say that this weekend was a tough one.  For me, that is saying something!  I mentioned in the last blog about the nausea from the latest anesthesia, and boy, it stayed with me until Monday!  I was also experiencing a lot of "brain fog" and my body just wanted to lay around and not move.  The two drains on each of my sides were so achy; and the swelling and bandaging made me feel like a sausage ready to break out of its skin.  I was glad, however, that it was so nice and cool this weekend that it made being in the house more bearable.  With all that I was carrying around on my body, it was hard to find something to wear, so I ended up wearing some t-shirts of my husband's since they were big, loose and comfy.

Today I went back to my surgeon for him to look at everything.  Before I tell you what happened, I have to let you know what a wonderful person he is.  First of all, he did just about everything he could do before he needed to stick me back in that operating room again; and I appreciate that very much.  But what I will tell you next will show his character even more.  

I get updates on line from my insurance company on each and every claim.  The day of surgery I was looking around the site and found the claim for the mastectomy was posted which said I would owe $38,000!!!!  I almost dropped on the floor!  I knew that logically, this would might not be true in the end, but I had no time to investigate further.  When I went to the office today I asked to speak to the person in charge of billing to create some type of payment plan and find out where we stood.  She told me not to worry...that my doctor accepts (for his breast cancer patients) what insurance will pay.  He figures other patients come looking for cosmetic changes; but breast cancer patients have no choice in their procedures and he likes helping his breast cancer patients this way.  Now tell me....how often do you hear that today with everyone just interested in money, money, money?  Not often.  So, he is a keeper and my husband and I both love him and his sense of humor.

Getting back to today....the surgeon removed all bandages and dressings and pronounced everything "looking good" and then proceeded to take out three of the drains.  The best news was that I could take a shower when I got home (oh, the bliss!).  All I have now is one drain and a few large band aids.  This is quite an improvement!  I am still very swollen all around the upper half of my body and it feels a little uncomfortable, but it should start easing up soon.  After the appointment, we went to breakfast, and then proceeded home where I had to nap (exhausted from it all!) before I could finally get into that shower.

I've told you before how God is in this with me and I still feel that strongly.  I've had people mention that "God must have something special in mind for you when this is done."  And I disagree.  The truth is that He has "something special" in mind for all of us since the day we are born.  I am just glad that I was open to his call and that I could be so aware of His walk beside me and His care for me.

Blessings along the journey have been many, surprising, and fulfilling.  I am so glad to be reconnected with people from my past once more (especially my first Pastor and his wife....you never forget your "first") and to know just how many people I can count on for support and encouragement.  That is a large part of the "healing process" so never think that anything you do for someone goes unnoticed.  Each act of kindness matters....a lot.

On Thursday I go back to the surgeon to possibly get this last drain out.  On Friday, I go back to the "chemo ballroom" for the first of the "every three week cycle" of Herceptin (for the next 7 months).  It is hard to think that we will be going back, but it has to be done.  They have shortened the time I will be on it, though, so that is good.  And on next Tuesday I see my "primary care" doc to see how this blood pressure is behaving.  (So far, so good....we are taking it at home.)

We are "on the road again" and not looking for any more detours along the way!  And I am glad to be there and at the very point I thought about often during those winter months.  A time of sunshine, healing, butterflies, and a new beginning. 

Saturday, June 18, 2011

Home Again, Home Again, Jiggety Jig!

OK, I guess once you are an early childhood person, you are always an early childhood person.  And if you are also one, then you and I are the only ones who will "get" the title today.  But that's not the point....the point is that, I am, indeed home!

Got up early Tuesday morning and it was hard to wait until 2:00 pm to get to the hospital to await my surgery.  Once we got there we had a larger surprise!  My surgeon came out and told us that the person who was supposed to be operated on before me had some complications, so I was "on-deck".  There was no time to think, thankfully, and they whisked me through registration and right into the pre-pre-op room.  Everyone came in to have their peak and/or ask the same questions, and then before I knew it, I was wheeled into the actual pre-op room.  There I met my anesthesiologist and assorted other surgery people, and before I knew it, I was "out like a light".

This time after surgery I spent a little time in the post-op room since my blood pressure was quite low.  They finally brought me upstairs around 8:30 pm.  I vaguely remember saying "good-bye" to my husband and my niece and then nothing until morning.  That night I had a nurse who was very funny and she kept my spirits up in spite of my feeling nauseous and anxious.  I did fall back to sleep often and really don't remember much of this night.  The next day, I had a nurse who was brand new at the hospital and apparently she gave me my blood pressure medicine BEFORE taking my blood pressure.  So, my pressure started going low once again.  They gave me a lot of liquids, got me up and walking and it slowly got up to an OK range by that evening.  During the day, I was still nauseous and not sure if it was the blood pressure or the anesthesia.  Food has not really been my friend since, but I am trying.  Although the nurse was new, after this initial  mistake, she turned out to be the most thorough nurse I had.  And the hospital had her "shadowed" by another nurse.  She did come in often to check on me and change my dressings, and empty my drains and just to ask how I was.  She was very gentle and very young, and very caring.  She will eventually make a great nurse.  That night and next day were much the same with my blood pressure staying low, and then leveling out.  I was not feeling great, but still wanting to get home.  Even the pain meds this time had me feeling nauseous.  I was glad when Friday morningcame and my surgeon told me that I could indeed leave the hospital.  (My blood pressure OK once more). 

So with drains all around my waist like a "six-shooter" gun belt, and numerous bandages and gauze pads and dressings on my body, I squeezed it all into my clothing and we rode home.  It felt so good to be home I couldn't help crying.  Last night I had a great night's sleep in my own bed and today I am just trying to get over the nausea and hoping to feel better.  My husband keeps presenting food like it will help but the sight of most of it makes me want to run.  But it is sweet that he is trying.  

I admit to not feeling as "chipper" as I did last time.  Although the pain is different (not as pressing and severe), I just don't feel like me at all yet.  I go to see my surgeon on Tuesday and hopefully he will be able to remove some drains and I should feel more comfortable.  And perhaps by then, I will be feeling better all around.

Thanks, everyone, for your support and prayers and know because of your prayers, God sent plenty of angels to carry me through once again.  Peace out! 

Monday, June 13, 2011

The Day Before Surgery #2

I am really feeling OK about tomorrow.  Hoping all goes well, and not looking forward to the pain and uncomfortableness...but actually feeling OK about it.  I guess resigned to it is more accurate.  Had some additional problems this weekend with the one breast (won't go into it but it involved mucho leaking) which only makes me want to get this done all the more.

I had asked the surgeon how I would be feeling after the surgery; especially since the cutting would be on my back and the grafts on my front.  He told me "you won't like me for a couple days, but then it will get much better".  Hey, it's not his fault that my skin is so thin.  But he did also say that the recovery with the back will not be as painful as I am expecting.  So, a bag half-full perhaps.

Last week on Wednesday I had gone for my muga scan again; on Thursday to see my internist for pre-op; and Friday to oncologist.  My internist said "Pre-op, again?  What happened?"  I explained my predicament, and he told me that actually this happens more often than people think.  And he told me that it will ensure the area is safe for expansion.  And he's right.  We went through the same information we discussed just before the last surgery, and then I was off to get bloods done.  That never used to bother me, but now that the veins have been a problem, I'm not a fan of blood tests.  However, perhaps because I have been away from chemo longer, there was no problem and that was an utter gift!  

Then on Friday, it was my first visit to the chemo ballroom and my oncologist since mid-April.  We felt like celebrities, my husband and I!  Everyone was saying, "Where have you been?  Are you OK?  Are you done with chemo?, etc."  It was actually good to see everyone, and they made us feel so welcome and appreciated.  One of the chemo nurses came in the to flush the port and to take blood again (but, thankfully could use blood from the port).  We waited for a bit and then my oncologist came in and we hugged "hello".  She told me that I was looking very good and asked how things were.  I told her all that had been happening and she wrote notes as I spoke.  Then she told me that my bloods looked very good and that my last muga scan showed the heart ejection factor had risen...which was very good news!  This means I should be OK taking the Herceptin, as long as I am closely monitored.  She then set up the Herceptin appointments for the next 12 weeks (I return for the Herceptin IV every 3 weeks for another 7 months), and then I was done.  My next appointment in the chemo room will be next Friday at 8:45 am.

So there is some real good news in the midst of everything.  Once tomorrow is over and I am recovered, I am actually getting near the end of my treatment.  I will have the Herceptin for 7 months, and will be taking the Anastrozole (a new drug for post-menopausal women who are HER2 positive.  If you heard of Tamoxifen, then this is about the same) for 5 years.  But almost done!  My hair is growing back and I am told I look like Annie Lennox from the Eurythmics...only my hair is white/grey!  But this weekend I started going out without a cap, so that is another victory I am claiming!

Tomorrow around 4:30 pm, if you are looking at your clock and think of me...just say a little prayer that all goes well.  I am looking forward to being able to write you about this next detour on the journey.  We'll be back on the main path soon. 

Wednesday, June 8, 2011

The Verdict is In

First, thank you to those who sent e-mails or made phone calls of encouragement.  I did really need them and they really did help.

Today was the next check-up appointment after the news that skin grafts would be needed.  My husband and I were hoping to get a few days away before the skin graft surgery, and my surgeon was hoping that we would be able to do this.  However, today he told us he is just not liking what he is seeing and even called in his associate for a "second opinion".  The verdict today was that the skin grafts are not only needed, but cannot wait.  So, quickly arrangements were made to have the surgery scheduled for next Tuesday.  Today I had my muga scan, and tomorrow will go for the pre-op testing (yes, have to do it again already since once it is over a month, insurance companies require this), and Friday go to oncologist.  WHEW!  I feel like I keep going through revolving doctor/hospital doors!

My initial frustration at needing more surgery is now tempered with the fact that my skin is just not "safe" right now.  I feel like I am "walking on eggshells" and even the surgeon keeps telling me to "lie low" and don't do anything crazy.  For someone who is always on the move and needing to be doing something, this is harder than ever; and a little scary too.  I worry about the incision opening up like it did on Monday.  So even though it is not the best news, I know it needs to be done and it will ensure a good outcome for the reconstruction.  You can't build upon something that has sand for a foundation (hmmm....I remember that VBS song about the "wise man who built his house on rock vs. the foolish man who built his house on sand"...), so we're going for "the rock".

This journey has certainly hit all the highlights and then some!  I just about think I have caught up to all the surprises, and then another pops up in front of me.  But again, how do folks do this without faith?  No matter what surprise appears, I pray for the strength to get through it, and it might take a little while sometimes, but it comes.

My husband asked lots of questions today and even had the surgeon draw on my back where the skin and muscle would come from and how big an area it would be.  It is kinda a "leaf" shape and is really more on the side than the back itself.  I keep thinking, it's gonna be fun then trying to find a comfortable spot to sleep.  I thought it was hard now.....?  But again, no choice and there is the need to strengthen the area.

One thing I have been very lucky with is all the people I have met and all the professionals who have been taking care of me.  From receptionists and office workers, to nurses, to "chemo ballroom" pals, to oncologists, to hospital personnel, to those who give the scans, to those who take the blood, to doctors and surgeons and all other people I have met on this journey....all of them have been caring, gentle, and concerned and kind.  Sometimes the people in the medical profession get a "bad rap", and I want to truly say that they work in a difficult profession, yet can smile and make you feel like everything is going to be OK.  And I thank them for that!

So the next road on this journey has been planned and I am getting myself packed and ready to start taking the steps forward.  And I know there will be another set of steps right beside me.  Yeah, my husband...but also God leading the way.

Monday, June 6, 2011

Round Two

It has taken me a few days to reconcile my emotions with the news I received on Friday.  It was not a pretty appointment.  By the time I got to the plastics surgeon's office, the incision site on the one breast was "oozing" pretty bad (sorry to gross you out!), and the skin looked "black and blue".  He immediately had to cut again on this side just as he did with the other side.  There is no infection, it was just "leaking fluid" since the skin is so thin.  And that is my problem more than anything else right now.  He told me he has not seen skin this thin in a long time and unfortunately, the verdict is that I will have to have the skin grafts.

I am a little discouraged since I was just beginning to feel more myself and now I will be beginning again at "square one".  At this point, I am out of the "emergency status", but it still needs to be done.  He is thinking in a week or two since he wants to give the skin a rest, if it can cooperate and take one!  So life is once again "on hold".  The surgery to come is about 3 hours and they will take some skin and muscle from my back and graft that onto the breast tissue.  Once again, a two day stay in the hospital, the drains for a week, and about three weeks recovery.  I feel like my life is playing a "rerun" of a few weeks ago.  My husband keeps reminding me that the "good news" is that the cancer is gone and I will live a long life...it's just that I have to get over this unexpected hurdle.  And I am trying my best to keep my mind on this positive news.

On a lighter note, and a sweet one...since I was so upset this weekend about the news, my husband asked me if the surgeon could take the skin from his back so I didn't have to have the "double whammy" of all the painful surgery sites.  That was so sweet of him, but of course, this can't happen...and as I told him, I don't really want to have "hairy breasts".

Yes, I can still joke and try to stay positive and I know God will walk me through this one more time.  But I could use your encouragement this time.  Please write some words or prayers to lift my spirits.  I would so appreciate hearing from you.

Thursday, June 2, 2011

Looking for the Comfort Zone

Today the phone rang and it was my oncologist with a reminder that since it is three weeks from surgery, it is time to have another mugascan (to check the heart ejection factor) and come back to see her.  That means I also need to start up the Herceptin once again.  I am not looking forward to the leg and joint pains coming back again.  Besides the pain of the mastectomy surgery, I have not had that pain for a while now and just feel like I would like to get over one thing before adding the other.  But I guess that is not to be.

Since I wrote last, I went back once more to the plastic surgeon on Tuesday.  He saw something else he "didn't like" on the other breast, but said it was only "superficial" and he cut just a small piece out.  He said it should be OK, and I could now go one week before seeing him again.  However, today, I don't like the look of it since it looks infected and I am going to have to call him again tomorrow so he can "give it a look".  However, the other side is looking good.  Maybe once I get this other side under control, then I can get back on the wagon train to reconstruction.  

I am still feeling uncomfortable and sometimes it is still painful (especially at night).  I have very few painkillers left, and I am very selective about when I use them.  Sleep is not easy as I am a stomach sleeper and obviously, cannot do that now.  I can get more on my side now for a while, but my back feels so uncomfortable some nights that I have to go from bed to bed to couch to wherever I can get comfortable enough to get some sleep.  

I have also found it necessary to get some clothing that I feel comfortable in right now.  Most of my summer clothing is a little more form-fitting, and I am just not feeling good about my "form" right now.  So I have gone shopping to get some tops that will be somewhat loose enough so my changing "form" is not so obvious.  I keep wondering what I am going to do for a swimsuit...but I've got time to think about that (and to see what kind of "form" I will have by then).

It is still a little hard to be at home so long.  I am so used to coming and going at will.  And I miss my kids at preschool.  I am going to try to get back there by the end of next week, which is the last week of school before summer.  And I definitely want to be there on Friday night for Graduation.  I haven't missed one yet, and don't want to miss this one.

So this week it's all about trying to find "the comfort zone"...a place, or a position, or a feeling of relief whether I am sitting, standing, or laying down.  At least, it has created a lot more prayin' time since God's up all night anyway!