Follow Up

Well, it’s been almost a year since my last post and my last chemo infusion. During that time I’ve continued on herceptin, with the first break away from infusions in March for 6 weeks, the second in August for 8 weeks, and again now in January for 8 weeks. Herceptin can attack the heart (it did for me), lowering the left ventricle ejection fraction (Left ventricular ejection fraction is the percent of BLOOD a full left ventricle pumps into the AORTA with each CARDIAC CYCLE. LVEF provides an assessment of cardiovascular limitations resulting from damage to the HEART such as by MYOCARDIAL INFARCTION or HEART FAILURE. Normal LVEF is 55 percent; LVEF below 35 percent indicates severe heart failure. ). My baseline is 56, went as low as 45 and as high as 59. The latest test puts me @ 47, hence this final break.

After the last break which ended in October, we determined that my heart was strong again and scheduled the second mastectomy, which is my version of “reconstruction”. Having lived the previous year lop-sided, wearing a prosthetic daily, and never feeling “balanced”, I made the decision to remove the other breast for symmetry and prevention. Surgery was November 3rd and everything went fine. I’ve never looked back on that decision & am very peaceful with “flat & fabulous”!

Nineteen days after surgery, we resumed herceptin and I made it through 3 infusions (9 treatments). Once I’m cleared to resume, I only have 2 more infusions (6 treatments)! My year on herceptin will be complete!

Bittersweet … during the time since I was diagnosed, I’ve been actively fighting breast cancer. I’ve had a safety net with all of my doctors and nurses as they travel with me, watching me every step of the way. Once finished with the infusions, it’s wait and see … monitoring & praying that it doesn’t come back.

Breast cancer is tricky; it’s never really cured, a survivor is considered in remission. Her2+ cancer is particularly aggressive and has a tendency to come back. In my favor, is my early stage, the chemotherapy and the miracle drug herceptin. So even though there was micro cancer in one node, we’re hoping we knocked it out!

Learning to live without constantly actively thinking or worrying about breast cancer will be the challenge ~ here’s praying that this journey will be easier that the past one!

Advertisements

A Great Week … and other random thoughts …

This week two fantastic events:  my last big chemo and no radiation treatments required!

On February 13th, my last big chemo took place – along with a celebration of this milestone.  After the  next few weeks, hopefully no more of the major side effects:  nausea, total hair loss, muscle weakness, extreme tiredness.  Still to complete are the remaining 36 weeks of the small chemo, the targeted treatment of Herceptin (the miracle drug for my cancer).  Side effects are tiredness (sometimes extreme) and possible impact on heart function.  Regular tests will be performed on heart function and infusions will be delayed to allow recovery (yes, the heart will recover, isn’t the body amazing?) and then treatment restarted.

On Valentine’s Day I met with Dr. Hatch, the radiation oncologist.  A few months ago, our direction was very clear based on the symptoms of my cancer, radiation was required.  What a difference a few months can make!  Current research is ambiguous regarding the need for radiation with the symptoms … in fact, the side effects (some significant, particularly on the left chest side) outweigh the benefits and after extensive discussions about the new information, we (all the doctors on my case included) agreed to bypass radiation!  This eliminates possible long term heart damage, skin damage, muscle damage, and emphydema, and reopens the possibility of simple reconstruction!  Dr. Hatch left me with a big hug, wished me a Happy Valentine’s Day, and told me to take her off my list – I didn’t need to see her anymore.  While she’s a great doctor, I can’t say I’m sorry!  She even brought Dr. Powel into the room to begin reconstruction discussions again.  My initial goal of bypassing radiation have been realized!  Praise the Lord!

The next couple of weeks will continue with Herceptin infusions, then another MUGA test to measure heart functions.  Dr. Washington (medical oncologist) will give me a couple of weeks off to allow my body to recover somewhat from the chemo, then we’re back on target for the remaining infusions.  l’ll also meet with all of my doctors in March to determine remaining treatment dates and reconstruction options, including remaining surgery.  The rest of 2014 will still be a major journey, but the toughest part is now done, YAY!

Random Thoughts …

Once you are diagnosed with cancer, once those words are said, your whole world shifts and changes.  Those words can never be taken away.  You are suddenly thrust into learning and making decisions in a world you are not familiar with.  The medical team (doctors, nurses, advocates) all work with you, plying you with information, but it’s an evolving, learn as you go deal.  You have to listen to your heart and learn your body and then go with what appears to be the best options.  Remaining knowledgeable and involved in your treatment helps you during this journey.  Having a strong support system also helps – family, friends, co-workers, and especially others on this same journey.  No one understands what you are going through better than those who have been or are on this same path.

You just want to be treated normally.  People tend to treat you differently.  Too frequently the first thing out of someone’s mouth is “I’m praying for you”.  Don’t get me wrong … I love prayer, I crave prayers, I need prayers … but I don’t want to be reminded all the time that I have cancer.  I’m still the me I was before the diagnosis.

Halfway through this journey … it’s tough, but you can make it through.  It’s life-altering, but not life-defining.  You have to look @ the end-point, the light at the end of the tunnel.  You are stronger … I am stronger … than you think.  Three surgeries, multiple infections, pain, sickness, medications, weakness – all has made me stronger, helped me to realize what’s really important.  Faith, family, friends.

This is not a journey you make alone.  I do want to especially thank my sister Terry.  While family has gathered around me and supported me, many are out of town and cannot be here.  Terry is always there for every appointment, every chemo treatment, every infusion.  A major commitment of time and energy, I can never truly let her know how much this means to me.  While @ the infusion center, we often see patients there alone, week after week.  This is not a journey you want to travel alone.  There’s enough stuff you have to experience all on your own, but having someone right by your side makes it a little easier.  Thank you and I love you so much, Terry!

This week has been a roller-coaster ride … but a great one!  Major milestones met and conquered.  I’m ready to move forward into the next stage, a little closer to that end goal.  It may be some time before I can declare I am a “survivor” rather than a “fighter”, but I’ll take it!

❤  Happy Valentine’s Day, everyone!  ❤

Continuing down the path …

The second chemo treatment started just like the first, not much the first day.  I wasn’t worried about that … I dreaded the immune system boosting shot given on Friday.  But I had done some research.  Others were saying that Zyrtec helped with the pain.  An antihistamine?  I’m willing to try anything.  Dr.  Washington said it couldn’t hurt, so Zyrtec became part of my daily vitamin/supplement routine.  Amazingly, it seems to work … or after the first shot, the others aren’t as severe.  I don’t know, but I continue to take Zyrtec – I’m not taking any chances!

Side effects after the 2nd chemo kicked in on day 4 … and this time they were severe.  In bed for 4 days, vomiting & diarrhea.  I couldn’t keep anything down – not even the nausea pills.  The only time I left the bed was to go to the bathroom – resorting to children’s pedialyte pops and ice chips to avoid dehydration.   Before I’m ready, it’s time for my weekly herceptin infusion.  I’m so weak I have to traverse the long hall in a wheel chair.  I’ve never felt more like an invalid.  During the infusion I was given fluids – that helped.  Although tired, within a day or so I felt stronger again.

I dreaded preparing for the 3rd chemo, although I kept telling myself halfway there!  Talking with Dr. Washington about the effects of the last one — she was not encouraging … she said it would just get worse the further we go into this.  But she was glad that I was learning to cope with the effects.  Cope?  I think it’s called survival.

The 3rd chemo … the wait … I started taking nausea pills before the chemo nausea meds had worn off and continued for the next week.  No vomiting, no diarrhea … yay!  But the pills made me sleep for 4 days.  This time, instead of getting sick, I developed intense muscle pain in my thighs and my arms.  Perhaps dehydration?  Maybe not flushing the chemicals out?  Whatever … but even water tastes bad.

It’s now 2 weeks out from the 3rd chemo and time for the weekly herceptin infusion.  Muscles still hurt but not as severe.  I keep moving, thinking about others that have it much worse.  I can see the light at the end of this tunnel – yes, I’ll have weekly herceptin treatments into next October and there’s the radiation plan and more surgery … but there’s only 3 more chemo treatments.  I’ve always said I can tolerate anything in the short term.  And, I’ve been given an amazing Christmas present, actually two … my daughter is getting married on the 27th and I get to skip treatment Christmas week!

This Christmas I pray that someday a different solution will be found … that we don’t have to poison our bodies to get rid of cancer.  I pray for those that have to deal with chemo on a weekly basis or are looking at chemo for the rest of their lives.  I pray for those whose treatments aren’t working … and I pray for our doctors and researchers … that the cure for all cancers may be found soon.   Oh, and of course, for world peace!

Merry Christmas and Happy New Year … may all your dreams & wishes come true this holiday season ❤

And so it begins …

The second surgery – to remove the expander and clean the infection – worked.   Dr. Powers told me 10 days or so and I would be healed enough to begin the next stage … chemotherapy.  Eleven days later I was in the infusion room.

Surgery on the 9th, back to work on the 21st, with many doctor appointments in between.  A new doctor  – @ least to me, she’s been a doctor for awhile – radiation oncology Dr. Hatch is consulted.  Although still somewhat of a grey area, multiple research efforts recommend radiation if there is more than 3 lymph nodes involved or significant lymphatic involvement in the breast tissue removed around the tumor.  The pathology report showed significant lymphatic involvement – which essentially means the cancer was trying – not yet successfully! – but trying to find a way out.  So, add to the calendar radiation treatments (6 weeks) after chemo (the six sessions) is complete.  This further complicates reconstruction issues – but the goal is to be cured, not look good right?  We’ll worry about reconstruction options later.

First day back @ work started good, although I was tired.  I pushed too hard, stayed all day, was totally exhausted by 5pm.  Got home and medicated – next day was doctor appointments, labs – another exhausting day, did not make it back into work.  Wednesday I was back in the office, but left a trifle early, still very tired.  Thursday was the big day.

When you’re facing chemotherapy, you really don’t know what to expect.  We’ve all heard the horror stories, and everyone fears it.  I know I did.  My only real experience with chemo was with my mom 20 years ago and that was bad.  I kept telling myself 20 years, 20 years …  it has to be better, right?

We – as most often recently, the we includes my sister Terry by my side – arrived @ the infusion center … loaded down with blankets, socks, tasty snacks provided by my sister <3.  The friendly infusion nurse greets us, we move to the chair and get settled in.  Vitals are taken and then it’s time.  The nurse explains that this time will probably be the longest – steroids, fluids, chemo #1 drug, chemo #2 drug, and then herceptin along with Benadryl and Tylenol – it’s going to be a long day.  She asks if I want a numbing shot … get a shot so a shot won’t hurt???  No, I say, let’s just do this.  So I pull my big girl panties up and it begins.

The needle did hurt going into my port – alot – but once in was painless.  Next time I do have a lidocaine prescription to apply over the site about 45 mins before the infusion.  During the meds, there was no pain, I even managed to sleep a little right toward the end.  No side effects that day, just tired.  Went home and slept.  Scheduled for the next day was a shot to boost immunity in my white cell counts.  Shot in the tummy, no pain … not until later that evening.

Pain … some of the most intense pain I’ve ever felt … deep bone deep pain.  That went on for 4 days.  Finally back @ work on Tuesday.  Nausea starts … I go into the restroom at work and someone is just heaving away … great, that’s what I need.  I can only stay until 10:30 … my bosses are great … I’m weak, I go home & take meds and sleep … seems like that’s all I do.  This lasts for two days … nausea, vomiting, diarrhea.   I’ve never felt so weak.

Tomorrow is the herceptin infusion.  Another new experience – I can’t wait.  Supposedly little/no side effects, maybe I’ll have time to recover before the next chemo trip in two weeks.

Some days are good (not for the last week), some days are okay (most), and some days are weepy days (Wednesday was one of those).  I continue to ask for your prayers and support and with your support I will make it through this journey.  Fortunately mine has an optimistic end point – not like some of the others making this journey.  This is not a path I would wish on my worst enemy.

Blessings to all …

The herceptin infusion went fine; the lidocaine did its job amazingly well – no pain with needle insertion.  Our only problem was navigating the monsoon which poured down for most of Thursday.  No side effects – unless you count a 4 hour nap afterwards ;).   Went to work Friday and stayed for most of the day – even had some (very) minor accomplishments – or maybe I should just say I actually got a few things done.

One step, one day, at a time … ❤

The Journey Continues …

Surgery on September 20th was not as successful as we had hoped.  Within the week infection was back and got increasingly worse the second week.  By October 1st additional antibiotics were prescribed.  I was weak, exhausted, not eating, losing weight.  It was an effort to even lift my arm, let alone walk for any distance.  I thought the surgery was supposed to be the easy part of this journey – at least comparatively.

After Dr. Powers saw me on Tuesday and prescribed additional antibiotics, she wanted to see me again on Friday – this time not messing around.  Things got progressively worse and Friday I ended up @ UTMB with IV antibiotics every 6-8 hours.  Infectious Disease specialists were consulted to help with finding the right antibiotics.  By Sunday evening I had had enough – I was done.   As I lay in the hospital bed, hooked up to an IV, I cried, I prayed, I thought.  And I reached a decision.  The reconstruction effort was done – it had to come out AND I now understand why women choose to have bi-lateral mastectomies even when cancer is not present in the other side.   It’s the fear (very real) of the cancer reappearing and having to go through all of this again … and I’m just at the beginning.

On Monday, I told Dr. Powers that I was done.  I wanted the tissue expander out and I wanted a mastectomy on the other breast.  I realize that now is not the time for the 2nd mastectomy – I NEED to get to chemo, but she understood.  Taking out the expander has a recovery time of (hopefully) 10 days, where the mastectomy would take 4 weeks or longer.  No one would do that now.  And, after chemo, we can reassess our options.

Surgery was scheduled for Wednesday morning for about an hour and a half.  Once they got inside, it took much longer, around 4 hours.  Apparently the infection was in deep, but they are confident they got it all.  I could stay in the hospital for another day or so, or I could go home.  The only antibiotics were being given orally and I was tired.  We headed home.

During this last couple of weeks I don’t know how I could have made it without my family surrounding me – my strength when I didn’t have any, taking me to appointments, to the hospital, forcing me to eat, making me laugh.  I keep telling my children “I’m the mom”, but there’s lots of times when I don’t feel like it.

July 30 – Biopsy
Aug  1  – Diagnosis
Aug 29 – Mastectomy / Initial Reconstruction
Sep 20 – Wound Revision #1
Oct  4-9 Hospital Stay
Oct   9 – Wound Revision #2

Hopefully chemo will start in 10 days or so … a whole new adventure.  I’m praying this one won’t be as tough as the first part, but to quote my chemo doctor … “It’s gonna kick your ass”.

I think that’s already been kicked.

Recovery … sort of

The past three weeks since my initial surgery have been eye opening.  I’ve discovered that my body does not like being cut on … not much pain … but the tiredness, oh my Lord … @ times I feel like a baby.  Oh, it gets better day by day, but a 2 hour outing requires at least a two hour nap.

Friends and family have rallied around me, which makes me feel warm and loved.  But being taken care of is something foreign to me after being independent for so long.  Someone cooks, another cleans, still another helps me take a shower and dress the drains.  As a parent, it is extremely hard to be dependent on your children … there are times when it just gets to be too much.  As I’m standing in the bath or laying down for wound care,  I feel exposed … not just physically, but emotionally.  Sometimes the tears just come.  But this is a war for my life and in the big scheme of things, these are just small skirmishes, so you just keep going – you power through.  Prayer helps.

Last Tuesday (Sept 17th) I had multiple doctor appointments scheduled (one of THOSE days!).  I was a little nervous because I thought I would get the schedule for the start of chemo — remember Dr Washington (oncologist) had told me surgery would be a breeze compared to chemo?  Well, the first appointment was with Dr. Powers, the plastic surgeon.  The mastectomy wound is not healing to her satisfaction, so we’re going back to surgery to remove more skin, clean out the entire area and make it a little tighter so my body is not overcompensating in trying to fill the space with fluid (one of my drains is still in place).  Surgery is scheduled for Friday morning @ 7am, two hours.  But it’s day surgery so no hospital stay – yay!  I guess there’s always a silver lining …  strike one.

Dr. Washington is next.  She’s already consulted with Dr. Powers, so chemo is delayed until the wound heals, but with the new surgery they are thinking two – three weeks out.  She says chemo will start immediately, just as soon as it’s healed, 5 or 6 months of TCH, along with 52 weeks of Herceptin.  Since I’m hormone negative, no long term pill taking.  Side effects of TCH:  hair loss, weight loss, nausea and vomiting, risk of infection, tiredness.  With the Herceptin, extreme tiredness, but at least none of the other stuff.  Something to look forward to.  Another bonus, get a flu shot before we start chemo.  ANICO insurance doesn’t cover it (we get them free @ work, but I’m out on leave) so out of pocket cost … strike two.

Next is Dr. Silva (surgeon).  She had also consulted with the other doctors and agrees on the additional surgery to be done by Dr. Powers.  She brought my case before the tumor board (all specialties review current cases and make recommendations) regarding the micrometastases in the sentinel lymph node (detection of very small areas of cancer in the first lymph node in the chain – the rest were clean).  I now have an appointment with the radiation oncologist – yay again!  Radiation was one thing I was hoping to avoid; you can recover from surgery (sometimes very slowly) and you can flush poison/chemo from your body, but burns are mostly permanent.  I’ll know more after speaking with Dr. Hatch, but it seems the radiation would only be to the armpit area where the lymph nodes are which to me is much better than across the chest exposing muscle and tissue and heart.  Oh, well … any of this occurs after chemo, so plenty of time (5-6 months) before this would start.  I meet with Dr. Hatch in mid-October, so should have a better idea @ that time … strike three.

So, as far as days go, Tuesday kinda sucked … but I have to remember it’s all short term … I have to look to the future when I get past all of this “two steps forward, one step back” kinda stuff.  I need to humble myself and accept help graciously, no matter how hard it is to do so – and it is really hard, trust me!

There are some positives … I’m HER2+ and Herceptin is the miracle drug for that.  I’m early stage, so that’s good also.  And, I’ve met so many survivors, so many women who have already traveled this path and they have survived many years – you would be amazed @ the number of women – young women – who have had breast cancer … statistics are 1 in 8.  Most of the time, most days, I am very positive and when I do start feeling sorry for myself (yes, I know I’m allowed) prayer definitely helps.

Oh, another bonus … my vocabulary has definitely increased … not sure how I’ll fit some of my new words in to day-to-day conversation, but hey, one of my former mentors had this posted on the inside of his office door and recommended it to me … “learn something new every day”.

Surgery is Friday, September 20th, @ 7am.  Prayers are always welcome – may Our Lord guide the surgeons and assistants and watch over me tomorrow.

See you on the other side!

ps:  This morning’s surgery was successful and much less stressful than the last one.  Surgery finished @ 9:30 and I was home by 11am.  Slept most of the day … but not nearly the side effects from the anesthesia or narcotics from the mastectomy & reconstruction.  Was able to retain the expander … so hopefully no more surgeries for awhile.  Some pain, but meds help with that … time for bed again … rest & laughter are the best medicines!  Thanks for everyone’s prayers and support – ❤

Surgery

It’s now been almost two weeks since my surgery … left mastectomy, sentinel lymph node biopsy, insertion of the chemo port and initial reconstruction with a tissue expander.  The day began fairly quietly, arriving @ the hospital, gentle conversation with my son, the nursing staff friendly and helpful.  Vitals were taken, but no pre-op work — we had expected some, but the next thing we knew I was on a stretcher and we were traversing the maze that is UTMB to the 2nd floor Radiology department.  After a series of 4 shots in my left breast (only 2 were painful), I moved to pre-op.  There I waited on the preceding op to finish and the OR to be cleaned and readied.  While there, the anesthesiologist asked me about my surgery (which side, what, name, birth date, etc.) and then inserted the IV into my left arm.  I watched and when he was just about through, I casually mentioned that I thought it was unusual that he was using that arm, since surgery was on that side.  I saw him freeze, then shake his head.  At that point I knew we were in trouble.  Ten minutes later, the IV was in my other hand and the left hand had the IV removed and an enormous bruise already developing.  Moral of this — question … always question …

Pre-op was full.  I saw people coming and going.  Still I remained.  I decided it was a good time to pray, and so began the Rosary … praying for the surgeons & team, for family & friends, for myself and for the cancer to be successfully removed.  Amazingly, I finished the Rosary before they came to move me into the operating room … God is good!

I remember being placed on the operating table and my arms laid out flat … my doctor lightly stroking my hand … one of the techs telling me to breathe deeply of the oxygen mask … given through the IV the light relaxer (and the Rosary) had done its job … I was calm and relaxed.  The last thought I had was that I was stretched out like on a cross …

The next thing I remember is opening my eyes to a flurry of activity, nurses, noise, Shawn, lights … but not for long … back to sleep for another while.  The next time I opened my eyes it was quiet, just 2 nurses nearby.  I asked if I was the last one, they laughed, but I sure didn’t see anyone.  I asked about the time … 8pm … finally going to a room.  I’d been out for awhile.

As we head to the room I still have trouble keeping my eyes open, but the nurse is talking so I respond.  I learn she also had breast cancer and is a 6 year survivor.  It’s amazing to me that everywhere I turn, I meet women who have endured this horrible disease but have conquered it.  I want to be part of that team!

Most of the rest of the time in the hospital is spent taking pills, pain meds and sleeping.  Lots and lots of sleeping.  Friday late afternoon I finally get home – it feels good.

First milestone complete – surgery done.  Next step recovery.