2 Years

Cancer is not the happiest of topics I guess, but since I originally resurrected this blog as a way to keep family and friends up to date on my cancer, I figured I should probably post an update.

The 19th marked 2 years since I found out that I had breast cancer.  While I didn't get the actual "official" diagnosis until they called me with the results of the biopsy on the 23rd, I knew at that appointment.

Cancer is a big, scary word and it opens the door to a big, scary world, but it is also a world filled with silver linings.

Having cancer deepened my faith.  I learned to truly rely on God for strength and peace.  Cancer showed me just how much J cared for me and loved me.  While I had never doubted his love for me, it was a true comfort knowing that he was there taking care care of me throughout the treatments and surgeries.  My family and friends were amazing as well.  The prayers and the card and the visits meant the world to me.

Cancer also taught me about me.  Because of it, I found a determination to live the life that brings me joy, and not the one that seeks to match people's expectations.  Cancer gave me a better ability to see which things matter, and which things don't, and to be okay with pursuing the things that matter to me.

Cancer treatments gave me plenty of time to think and to contemplate what I like and what I don't like, whether food, or fashion, or a personality trait in myself.  I took the time to develop a better sense of style and learned how I like to spend my time.

Cancer isn't a journey that I would wish on anyone, but for me at least, it has been a journey that also brought hope and joy and learning.

Cancer Update: Closing a Chapter

This part of my breast cancer journey is winding down and coming to a close.  I had the second stage of my reconstruction on June 17^th and everything is healing nicely.  I have three more Herceptin treatments and then that’s done as well. 

The past 13 months have been a journey and a half.  At times terrifying, at times incredible, it has mostly been a time of learning – learning about myself, and learning to rely on God.  I’ve seen God work so magnificently through this, providing me with a peace and a joy that only He can provide. 

Jim has been my rock through all of this.  He has taken care of me when the chemo wiped me out and when I’ve been recovering from surgery.  He has also been my researcher, filtering through information so that I could be informed without being overwhelmed.

The support of family and friends has been amazing.  From cards, to meals, to people taking me to appointments, I have felt so loved and cared for throughout this time.  And knowing that I was being prayed for has brought such a peace.

I’ve learned a lot about myself through this.  I’ve learned that sometimes being stubborn is what allows you to recover quicker and that sometimes even the most stubborn person has to give in and rest.  I’m also learning to approach life and others with grace.  And I’m learning that showing love is more important than being right.

As I move forward, I am also learning to embrace my passions and I am beginning the journey of bringing a dream into the light of reality.  It has long been a dream of mine to blog.  I’ve tried a few times, but have never found my voice.  The breast cancer has helped me with that.  So, now this space will transition from a place where I keep people updated on my health to a place where I write about things that I am passionate about.  I hope that you will join me on my next blogging adventure.

Pathology Results and Recovery

The surgery went well on Wednesday.  I have always been super comfortable with my choice of surgeons and the rest of the staff was great as well.  There were some issue with communication, but those were minor and there were also some issues with my hospital stay that were more infrastructure issues.  This makes three times now that I've had to deal with infrastructure issues that really shouldn't have happened (at least in my mind) and if I can ever figure out who to address my concerns with, once everything is said and done, I will send a letter.   I am hoping that my next surgery occurs at a different hospital.

Recovery has been pretty uneventful.  I've bounced back quickly, except for the fact that I have a drain coming out of me.  That has hampered me quite a bit, and has kept me stuck at home.  I will get to go out tomorrow - but only to go to the hospital for my Herceptin treatment.  I do have my follow-up on Wednesday, so I am hoping that it comes out then.  Most of my limitations involve the upper body, I am limited in lifting and I am not allowed to raise my arm above my shoulder.  I am, however, still able to walk.  Yesterday I did 4 miles with a DVD and managed to crack 10,000 steps for the day.  Today I have already done 4 miles, and I hope to do another 2 this evening.  That will put me well above 10,000 steps for today and closer to my pre-surgery goal of 12,000.

I did receive the pathology results.  They did find cancer, but it was DCIS (ductile carcinoma in situ), not invasive cancer, which was what we were praying for.  The DCIS did show changes from the chemo too.  With this result it is now a definite that I won't need radiation and can move on with finishing up the Herceptin and reconstruction.

I am very humbled by the outpouring of support that I've received, both on FB and the blog, and in my regular life.  I have received so many positive notes and cards, and I know so many people are praying for me.

Moving from one stage to the next

I finished my chemo in mid-January, and over the past five weeks the side-effects have slowly left. At this point, I still get the odd, metal taste in my mouth, but it isn’t as strong and it isn’t constant.  I am also still battling swelling in my legs from water retention, and, while the majority of the muscle cramps have gone away, I still have a lot of hip pain.  Now, please don’t think that I’m complaining, I’m not.  I feel very blessed that the side-effects weren’t as bad as some people get.  All and all, I am feeling a lot better and, after a blood transfusion, a lot more energetic.  One funny thing – my eyebrows and eyelashes did great, at least until my last chemo and then they both decided to noticeably thin.  I’m not sure why, but I do find the timing funny.

So that’s the update as to where I am in my treatment.  I’m grateful to God that He provided me with so much strength to get through it.  I’m glad that I entered chemo much more physically fit then I’ve been for probably 20 years.  Other than taking off for doctor appointments and actual treatment, I haven’t had to miss any work.

One thing about my chemo, I didn’t receive it because the cancer had spread.  I received it to help keep it from spreading.  My lymph nodes were clear when I had my first surgery.  However, my tumor came back with the protein HER2, which meant a 1 in 4 chance of a distal recurrence.  To treat for that I am receiving the drug Herceptin which is started with a round of chemo.  While the chemo is done, I still go every three weeks for the infusion of Herceptin and that will continue through September.  It, thankfully, does not have the side-effects of chemo.  Doing this takes my odds of a distal recurrence to 1 in 10.

Next up I surgery, which is scheduled for this Wednesday.  I am having a left-side mastectomy with immediate, two-stage, reconstruction.  The surgery is expected to last 3 hours, 1 for the mastectomy and 2 for the reconstruction and it will involve 2 surgeons, a surgical oncologist and a plastic surgeon.  I have no clue what to expect.  I’m a little nervous, except when I’m really nervous.  Jim has had to deal with a few breakdowns.  The Lord has been gracious though and the verse that I keep focusing on his Psalm 23:4:

Yea, though I walk through the valley of the shadow of death,

I will fear no evil: for though art with my; thy rod and thy staff

they comfort me.

First Chemo

I had my first chemo on September 30th.  It was a very long day as the first time you get chemo they administer it very slowly.  We started at 9:30 (8:30 if you count my seeing the PA first) and we weren't done until around 3.  The facility is quite nice though.  The chairs recline and have both a heat and massage function.  Each little area also has it's on TV and they have heated blankets.

They started me off with two IV anti-nausea drugs, one that latest 3 days, one that lasted 5 days.  Next was IV steroids and then IV Benedryl.  I had also started taking a low dose steroid the day before, and also took it the day of and the day after.

The chemo made me tired, very cold, and very, very achy.  Most of the pain centered in my hips, and a week and a half later, steps still bug them a bit.  I didn't end up with too much nausea, and what little I had, my breakthrough pills took care of.  I did manage to work the next two days, though by Friday afternoon, I was wiped out and pretty much gave up thinking.

Unfortunately, I ended up with a colitis flare that weekend.  I'm not sure if it was something I ate, and I would have had the flare anyways, or if the chemo contributed to it in some way.  I have a feeling that the chemo made me more susceptible to something that I ate triggering a flare up.  I ended up on predisone this week to treat it (just took my last pill in fact), and I'm doing a better.  Unfortunately, it has left me really tired as I'm not sleeping through the night.

My next chemo is scheduled for October 21st.  It shouldn't take as long and I don't have to be there until noon.  We'll see how this one goes, and I'm praying to not have another flare up of the colitis with it.

The Beginning of a New Stage in Treatment

Let's see, it's been a couple of weeks since I posted an update as there really hasn't been much to post about.  On September 13th, Jim and I flew out to Phoenix for a much needed vacation.  It was planned about a year ago, but the timing couldn't have been more perfect.  We had a wonderful time.  It was nice and hot, we saw great scenery, had prickly pear ice cream, and just relaxed.  The best part was that there were no doctor appointments and we could almost forget about the cancer for the week.

Last week, I had my colonoscopy to make sure that the issues that I have been having with my colitis weren't anything major.  Thankfully they aren't and it is really seeming like the addition of a new med is helping.  I've only been on it since Saturday and I am seeing major improvement.  Most importantly, the searing pain that I've been in has lessened considerably.

So that brings us to today and the start of chemo.  I'm not feeling stressed about it per se, but my emotions are a bit off, if that makes any sense.  I have to be at the hospital at 8:30 for blood work and then I meet with the Physicians Assistant.  I'm a little concerned about meeting with her.  I've only dealt with PAs twice, and the first time was a really bad experience filled with some not quite accurate information, so I'm still a bit apprehensive about their abilities.  I guess, that just like there are doctors that aren't good, you'll have the same with PAs and I need to quit judging them all by the one.

After the two appointments (and they are scheduled back to back), I start my chemo.  It seems that they do the first chemo very slowly, so I will be there all day.  Thankfully Jim will be with me.  We'll also need to be kept separate from the rest of the patients.  For some reason, people think that bringing animals in to hospitals is a good thing.  Unfortunately, for someone that is majorly allergic to dogs, this can be very dangerous.  But, I'm beginning to think that people don't think logically anymore when it comes to animals.  Okay, rant over about that :)

So that's all that is going on.  I'll post about how chemo went in the next couple of days.  I'm a bit curious as to how my body will react.

Oh and for those of you following Bloom County, I am one of those neanderthals that put two spaces after a period when I type.

Appointments, Appointments, Appointments

Well, I finally have almost all of my pre-chemo appointments made, and one after chemo one as well.

On top of the cancer, I also deal with ulcerative colitis, and I've been having some issues lately with that, so a colonoscopy has been scheduled before my chemo.  If they need to do anything additional it will have to be coordinated for a time when my white blood cell counts are up.  Radiation Oncology will now happen after my first chemo, just by a day, but that's fine as any radiation would be after I'm done with chemo.  All that's left to do is schedule my echo and get blood drawn.  I also need to make an appointment for a wig.  We went last night, but I didn't like the place.  They didn't seem to listen to me, never asked my preference, and completely ignored Jim.

Chemo will start on September 30th.  The first treatment is 7 hours long.  We will need to have plenty of books to read :)

Plastic Surgery and Oncology

It's taken me a bit to write this post.  First, I just needed time to process both doctor appointments - it's one thing to have an idea of something happening - it's another to be told that it would happen.  And second, I needed to have time to sit and put this all into words.

Jim and I met with the plastic surgeon to discuss my options with regards to plastic surgery.  Basically, the two options that I was considering was something called a DIEP Flap surgery and reconstruction using implants.  The DIEP Flap surgery would have used fat from my abdomen, but, for a number of reasons, we decided that it wasn't the best option.  So at this point we're planning on a two stage reconstruction using implants.  I will have my mastectomy and then a tissue expander will be put in.  The way that it was described to me is that it's almost like a saline filled balloon and I'll go every one to two weeks to have more saline injected into it until it is the size that we want.  Then I will have a second surgery to have the permanent implant put in as well as surgery on the remaining breast so that they look the same.

It was a bit odd, I had a somewhat major meltdown after we left the surgeon's office.  I'm not quite sure why, but I was a wreck.  Yet another reason that I was glad that Jim went with me.

However, none of that will happen now until February. In meeting with the oncologist - who is great - it was decided that I needed to be treated for being HER2 positive.  The treatment is started along with a round of chemo.  I will go every three weeks, for 6 infusions, so about 18 weeks.  After that, I will continue going in every three weeks for a year for the HER2 drug.  It's an antibody, not a chemo drug, and it doesn't have the same side effects of chemo.

While I knew that it was a possibility, it did take some time to process, and an evening of, I guess you could call it, grieving.  We have a few things to get squared away first, like seeing my GI doc, before I start the chemo.  We're shooting for me starting the first of October.  While I'm thankful that I only have to do one round of chemo, it's still chemo, with all of the nastiness that comes with it.  And, that has me pretty freaked out.  I'm good most of the time, but if I let my brain dwell on it, I get freaked.

Today Jim and I serve in the cafe for our second service, so we went to church last night.  The final song that we did is called "Whom Shall I Fear (God of Angel Armies)."  Man, did the Lord really use that song to quiet my soul and fill me with peace - and courage.

Processing

We had the appointment with the plastic surgeon on Tuesday and the oncologist on Wednesday.  I'm still trying to process everything.  I'm also allowing myself to take my time and let the emotions run their course instead of trying to push them down.  Thankfully, I not only have a wonderful support system in Jim, my family and my friends, but I have a wonderful Lord who I can cry out to.  He has proven so faithful to give me the peace and the strength that I need through this, and I know that He will continue to do so.

So for today, I am resting in Him, crying out to Him, and bugging Jim at work as much as I need to.

I'll post an update on the treatment plan at a later date, when I'm more up to it.

Two Doctor Visits and a Twist in the Path

I saw two different doctors yesterday.  The first was just a follow-up with my cardiologist to see how my blood pressure was doing.  It was 136/82 which is amazing for me (I have been known to be as high as 200/110).  So he's not messing with my meds, and I don't have to see him for a year unless someone wants an echo down as part of my cancer treatment.  Then I'll go through him since I'm about due for one anyways, though he's fine for putting that off until after things settle down with the cancer.

My second appointment was with the new surgeon, Dr. Ahrendt, who also happens to be the head of the breast cancer surgery group.  I really liked her, and she was able to clear up a few things for us, and address some of our frustrations.

She was actually surprised that I hadn't seen any of the other doctors, and that my first appointment wasn't a group appointment.  Before I left, I not only had the appointment with the oncologist that I had made, but two other appointments were scheduled for me.

She also cleared up some confusion with our understanding of the pathology report.  While my first surgeon went over it briefly with us on the phone, it wasn't until my post-op appointment that it was gone over in any detail. The problem was that appointment wasn't with a doctor, but rather a Physicians Assistant, and things weren't presented correctly.  Jim and I were very honest with my Dr. Ahrendt about our concerns with how things have gone so far, and she seemed genuinely concerned that we had faced these frustrations.

So that part of the appointment went well.  Unfortunately, we did learn a bit more about why they were recommending a second surgery.  Where the PA had led us to believe that it was because UPMC wasn't following the new guidelines for margins, Dr. Ahrendt explained why those new guidelines didn't necessarily apply to my case.  We also discussed the fact that they had already taken a large amount of tissue in the first surgery, which makes a re-excision a poor option.  So we have decided to proceed with a mastectomy with immediate reconstruction.  We meet with the plastic surgeon next week and will be able to start to figure out exactly what reconstruction I will have.

At this point, I am very happy with the team of doctors that is being "assembled" for my treatment, and I am coming to terms with the fact that I have to have the more drastic surgery.

The other thing that we learned yesterday, was that even though the auxiliary lymph nodes were clear, the fact that I had an intra-mammary node with cancer isn't a good thing.  I have a feeling that between that and the fact that my HER 2 is equivocal,  I will need chemo.  We'll find out when we meet with the oncologist on Wednesday whether or not that will be before or after surgery.

With the mastectomy, it is unclear whether or not I'll still need radiation.  I will see the radiologist on the 23rd of September.

So lots going on, lots to digest, and lots still unknown.

Taking Control

Just like a parent of a child with special needs has to be an advocate for them, we need to be an advocate for our health and our health-care.  I'm not afraid to question a doctor or the necessity of a procedure.  Maybe it's because my husband and I work in medical research and deal with MDs day in and day out, but I long ago realized that they aren't perfect and don't have all of the answers.  I never assume that just because a doctor says something that it is right, and I will speak up if necessary, and we do our research.

Up until now I have been content to follow the way of doing things at Magee in treating my breast cancer.  Not any more.  The problem that I have is that the cancer treatment is done almost piecemeal.  I have had this diagnosis for two months and have yet to see an oncologist because you don't see them until all of your surgery is done.  That has never sat well with me, and I know, from talking with others, that it's not how places like Cleveland Clinic do things.  At any rate, I finally have had enough, especially since I'm looking at the possibility of having a second surgery.  Yesterday I made the appointment with the oncologist on my own. Granted, I confused the scheduler and it will be interesting to see what his reaction is, but I need to take charge of my treatment.  There are too many outstanding questions concerning other aspects of my health that I need his input on, and I am tired of waiting.

Also, while I am scheduled to meet with the new surgeon on Thursday morning, a second surgery is by no means a definite.  We will listen to what she has to say, but we may also seek a second opinion from John Hopkins.

Post-Op and MRI

This morning was my post-op appointment followed by my MRI this afternoon.  The post-op went well.  I am healing nicely and have been released from restrictions.  That means that I can finally get back to exercising.  Now I still need to take it a little easy and not do anything that is going to pull on the under arm incision, but things like crunches and some weight lifting will be fine.   I will probably hold off on any yoga or aerobics for another week until I get more of a range of motion back.

We did learn that the tumor was much larger than we originally thought.  We also learned that I had both invasive cancer (which we knew) as well as cancer that is in situ, which basically means contained in the duct.  However, at this time there is no indication that the cancer has spread from the breast and the sentinel lymph nodes were clear.

We still do not know whether or not I am HER2 positive or negative, it is still coming up as equivocal.   More than likely the medical oncologist will need to send the tumor out for further testing to determine.  Here’s a link to an article on HER2.  If I am HER2 positive, I will more than likely need to do a round of chemo at the start of treatment for it.

The MRI actually wasn’t as bad as I thought it was going to be, and I could have probably managed it without taking anything ahead of time.  For a breast MRI, you actually lie face down with your arms above your head.  Your head rests in a headrest that reminds me of what they have at spas for massages.  So really, as long as you don’t think about being in the tube, even if you open your eyes you can’t really tell.  It was very noisy and the occasional movement made me a bit motion sick.  All in all though, it wasn’t bad at all and took less than a half an hour.

At this point, we are still in a holding pattern.  There are still a lot of unknowns, and it will take a few days to get the results of the MRI in.  I also need to switch surgeons, as my doctor is now a few days past her due date.   I have two picked out, and am comfortable with either of them.  They are both very experienced.