One step forward… two steps back, part II

Patty and Mia on the 4th of July, 2010

Those of you who know me know that my glass is always half full!  Always!  So I’m trying to put perspective on the outcome of Patty’s appointment today.  The ultrasound didn’t go as well as we hoped.  It turns out that the entire implant has rolled to the point where the mysterious valve is now on the back side against her chest wall.  So… the “procedure” the doctor spoke about yesterday has turned into surgery.  No quick procedure in her office… a little longer procedure at the hospital.  Surgery date is September 8th.

I guess one good thing is that it’s an outpatient surgery.  Another good thing is that the doctor said she couldn’t make any promises, however once in surgery, she’d see if she could fill the implant to the exact size as the other breast.  If so, there would be no future surgeries…. at least that would be the plan.  She emphasized that she wouldn’t know if it was possible until she got a good look at everything.

As I said in the previous post, Patty’s pretty frustrated.  We have so much going on right now.  1)  I’m going to be changing jobs in the next few weeks which means I’ll be changing employer insurance.  Obviously insurance needs to be in place for any future health related things for Patty so timing on this surgery is important.  2)  Our granddaughter, Mia, who is six and lives in Phoenix asked “Grandma Patty” if she could go to Phoenix to be with her on grandparents day.  Hmmmm… Grandparents Day just happens to be September 8th!  That trip is canceled.  3)  Having surgery next week is a pretty big setback on Patty’s recovery.  She was hoping to be ready to go back to watching Avery by the end of September.  Now it looks like it’ll be more like the middle of October.

Needless to say, Patty’s going through a lot right now.  “One more surgery”  is the last thing she wanted to hear.  But she’s realized that this is not under her control.  It’s just another hurdle in the road to recovery.

So, here I am… Mr. Optimistic who’s glass is always half-full grasping for something  positive out of all this…  Patty is alive and doing well!!!

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The frustration of recovery!

 

Patty and friends at the American Cancer Society Relay for Life a couple weeks ago.

Patty’s recovery from the reconstruction surgery is going well.  She still has a long way to go, but overall she’s doing really well.  They started adding saline to her implant last week and she’s pretty excited to have a cleavage again!   

The initial recovery period from the surgery was pretty painful.  She hid it pretty well from me at first, but as I’ve said in many previous posts, her eyes tell the story.  She fooled me and was on the go pretty quickly.  Too quickly!  I should have known better.  Those of you who know Patty, know that she’s hard to keep down.  She wants to exercise and get back into her routine.  She can’t do it!  Not yet.  I could see she was tiring easy and “hitting the wall” by early afternoons.  So, I’ve had to put my foot down and limit her activities.  She’s begrudgingly cooperating… 

Up until surgery her “job” was watching our granddaughter, Avery.  The doctor told us that she wouldn’t be able to watch her full time again until at least 8 weeks after surgery.  She thinks it’ll take her 6 weeks, but I’m going to win this battle.  She needs to take as long as she needs.  Avery kept Patty pretty busy during the days, but now that Patty’s on her own, she gets pretty bored!  She’s been devouring a lot of books, which she loves, but she gets frustrated that she can’t do it all right now.  She’s doing so well, I just don’t want her to overdo it and, in turn, take longer for her recovery.

She has a doctor’s appointment next Monday to add more saline… a little at a time.  Right now it’s all about adding the saline which in turn stretches the skin until it’s the same size etc as the other breast. 

Patty’s been walking as often as possible… a couple miles at a time.  She’s impatiently wanting to push the walking farther to start training for the Komen walk in November!   

She needs to heal first… she has plenty of time!

Hope…

Wow!  Can you believe it’s already June!  Where did this year go?

We’ve been pretty busy.  Looking back to Memorial weekend, we did the usual barbecue’s with friends.   We stayed up way too late two nights of the weekend which really made me realize that we’re not in our 20’s anymore.  It takes days for us to recover after being up past midnight!   Doing that two out of three nights is painful!  That’s just wrong!  How did I get old?

We received some bad news the other day about a friend of ours who was recently diagnosed with pancreatic cancer and cancer of the liver.  For Patty and me, learning this news hit way too close to home.  Everything we went through over this past year came back to us.  I just had this sickening feeling in my stomach when I heard the news, similar to the one I felt when I learned the news about Patty. Patty felt the same.

Our friend and her sister are very close… they live just blocks from each other and do pretty much everything together.  This will be a difficult road for her, but she is a very strong woman.  I’m confident that the support system between her and her sister, her husband, family and friends will help her on her journey.

I talked with a man I know about six months ago who was asking about Patty.  This was back when Patty was in the throes of chemo.  I told him she was doing as well as could be expected at the time.  He shared a story with me that he said he hasn’t told many people.  Two years ago this coming August, he was diagnosed with liver cancer.  He said it was bad and the doctors told him since it had spread pretty much throughout his liver, that there wasn’t anything they could do for him other than make him as comfortable as possible.  The prognosis was not good at all as they predicted he’d live for another six months at most.  He said it took a while but he finally accepted their prognosis.  Even though he accepted it, he didn’t give up researching any possible treatments to buy him some time.  He told me his research revealed a doctor at UCSD Medical Center who was trying a new technique for people with liver cancer.  He met with the doctor as soon as he could.  The doctor told him that people could survive with only 27% of their liver.  The liver regenerates itself and, in time, can re-grow back to its original size.  He told me he had nothing to lose so they scheduled his surgery.  The doctor removed 70% of his liver, taking the cancer with it.  Long story short, here he is, 22 months out of surgery, his liver has grown back to 100% of its original size and he’s cancer free!  Amazing story!

Cancer has been in the backseat of our lives for a couple of months now.  It’s not the first topic of discussion for us.  Don’t get me wrong, it’s brought up pretty much every day, but it’s not the main topic, until we learned of our friend.  Learning of her diagnosis brought cancer back into the forefront.  Like I said, it hit too close to home.  Patty told me the other night that if there was one thing she learned through her battle, it’s that life can be unexpectedly taken away from you in a second.  It can be taken away by cancer… taken away by a tornado like the poor people in Joplin,Missouri… taken away on your daily drive to work. You never know.  This may sound a bit cliché but it’s so easy to take life for granted.  Most of us have our health other than a few new aches and pains we feel when we hit our 50’s.  We have our family and friends who are all doing well. It’s just the way it is… day in and day out.  As a result, we get complacent about life and take it for granted.  Patty said once you face a life threatening disease, it all changes.  You appreciate everything!

I guess what I’m saying is that there is always hope.  Never lose sight of that!  Hope is the trust that circumstances in the future will be better.  It’s not a wish that things will get better, but an actual belief and trust in God from deep within your heart, even when there may be no evidence that anything will change.  Only God knows the outcome of each and every one of our lives.  We just need to believe in Him and have hope and faith for a positive outcome.  It all comes down to God’s will.

“With man this is impossible, but with God all things are possible.”  Matthew 19:26

Cancer has taken a back seat to life!

Patty and I have so much going on!  Our biggest focus right now is getting the condo packed up and prepare for the move next Thursday into out new house.  We had a pretty big concern thrown at us with the possibility of a Governmental shut down.  There was news about FHA loans being put on hold until the Government decides what they’re going to do with the federal budget.  (by the way, we have a FHA loan which is supposed to fund next Wednesday!!!)  I spoke to our mortgage broker this morning and she assured me that this will not affect our loan and it will be funded on Wednesday as scheduled!  Phew!

As Patty and I talked last night I realized that our life is really  moving forward after the past year.  There were times last year when both of us felt there was really no end in sight.  But you know what, there was and there is!

In this “new normal” phase were going through we notice is that cancer is NO LONGER the main topic of discussion.  Do you realize how good that feels?  Going through Patty’s treatment, cancer was all we could talk about.  It totally consumed all phases of our lives!    Cancer is still a topic of our discussions, and it comes up in our discussions at least once a day, but it’s just not the main topic anymore.

Patty told me last night that she still gets frightened.  If you know Patty, she’s a very strong woman.  Very strong.  She relayed to me that just the other night after we went to bed, she lay there in the dark and found her mind wandering.  She started worrying about the “what if’s?”  “What if the cancer comes back?”  “What if the ache in my back is cancer?”  She said this was not the first time she has been frightened over the past couple of months.  She said it happens often.  Ironic, but when Patty was first diagnosed and receiving her initial treatments, her worst time was at night… in the dark.

I’ve read that it’s not uncommon for women who have gone through the battle of a life threatening disease, such as cancer, to have reoccurring fears, thoughts and even dreams/nightmares about the disease coming back.  The whole experience is still relatively new for Patty.  It’s something that will take time.  Quiet honestly, I don’t think the fear factor will ever go away, for either of us.  This is the reality of dealing with cancer.  It never goes away.  Sure, some days are easier than others.  Patty is going forward with her life.  As great as she’s doing, those darned thoughts are still able to creep into the back of her mind.  I’m very proud of how strong she is.    Cancer is very scary!!!

Overall, Patty is doing great!  Her hair is getting thicker and thicker by the day.  It’s actually grown to the point where it’s touching her ears!  She said she thinks that she’ll stop wearing the wig next week and start going out in public “au natural!”  I’m excited for her!  She’s on the prowl for a “sassy” hairstyle for really short hair.

Patty is still suffering the side effects of chemo… neuropathy.  In a nutshell, neuropathy is nerve damage that can be caused by the chemo that causes numbness and tingling in the hands and feet.  It’s like your feet and hands going to sleep 24/7!  Patty says it’s painful at times.  I can only imagine!  The neuropathy started sometime after her 3rd infusion.  Patty’s oncologist said the neuropathy goes away with time, but Patty’s not seeing any improvement.  She has an appointment with a neurologist next Wednesday.   We’re hoping he can help.

We like the “new normal” of cancer not being the focus of our conversations or lives.  It never completely disappears.  It’s always there as the footnote to each and every day.  Some days the topic is more in the forefront than others.  Patty still has many future appointments with her oncologist and future tests to take.  She still has the reconstruction to go through.  I’m sure when we experience those days or weeks, cancer will temporarily take charge of our lives again.  But only temporarily.

Right now, we’ll take cancer being in 2nd place in our life!

Sometime emotions catch you when you least expect it!

I know… I know… it’s been a couple of weeks since I’ve blogged.  I know I said I’d keep this up, so I’ll try to do better. I promise!

 Last Thursday, Patty and I had the privilege of being the guest speakers for the National City American Cancer Society Relay for Life Kickoff!  The plan was that Patty would speak first about her experience then I would follow with speaking about the “husband’s perspective.”   

 I have about a half hour drive to and from work each way.  This is my “thinking” time.  So about a week before this event I gave a lot of thought about what I would say and ran it though my head until I felt comfortable.  Patty, on the other hand, is busy with Avery during the day and is pretty exhausted by the end of the day.  She had somewhat of an idea what she would talk about and the morning of the event she took some time to put her thoughts on paper.  

 Patty is so funny.  She is a great public speaker and you’d think it just came naturally to her.  That is anything but the truth.  She’s a nervous wreck!  I got home from work that Thursday afternoon around 3 p.m.  Patty was sitting on the couch holding Avery.  I can read her like a book!  I could just feel the tension in anticipation of speaking radiating from her.  She said she had written her talk down and would most likely end up reading it at the event.  (Again… I know her, she’ll start by reading but end up freelancing without notes.)  

 We got to the event early, about an hour early to be exact!  It was at a restaurant so we had time to have some dinner.  Little did we know that they were serving dinner at the event!  It’s ok… it kept Patty busy and her mind somewhat off public speaking.  The event started at approximately 6:30 p.m.  The Chairman of the Relay started things off followed by the Mayor of National City who said a few words.  Then they announced  “Patty Sousek and her husband, Ed, are going to speak about their experience with cancer.”  People clapped as Patty held her speaking notes in a sweaty death grip and we made our way to the podium.  Patty talked first.  She placed her now crumpled notes on the podium and started things off.  She did really well. Her voice never quivered and she was just the Patty we all know and love.   As I knew… she started by reading her notes word for word then shortly thereafter, she used her notes to just trigger talking points.  It was very heartfelt!  I stood behind her with complete pride!  They had told us to keep our talk short and Patty finished easily under 5 minutes.  Then came my turn.  I’ve done a lot of public speaking over the years and I do a lot of public speaking in my current job, so getting in front of a crowd doesn’t intimidate me in the least.  In fact, those of you who know me, know that I just love being the center of attention.  I had a pretty good outline in my head of what I wanted to cover and I was confident I could do this from my heart.  I started my talk.  Things were going well for the first minute or so, then it happened!  I was starting to say: “Then came June 22nd… a day I’ll never forget, the day Patty was officially diagnosed with cancer.”  About three-quarters of the way through that sentence, I was engulfed with emotion like a title wave!  I had to stop because I knew what was to follow!  TEARS!!!  I thought to myself: “Ok Ed… get a grip!”  I stopped speaking and hung on!  You could hear a pin drop at this moment!  Within maybe 10 seconds I could feel the emotions passing!  I thought “Phew… I dodged a bullet on that one!”  At least I got through it and didn’t act like a blubbering fool!  So I continued with that sentence about June 22nd.  Immediately that damned wave of emotions hit me again!  “Ok Ed… What’s going on here?”  I had to stop again… I closed my eyes for a second and did a quick prayer in my head…. “God… help me get a grip!”  I looked up at the silent crowd staring at me… I said: “Wow… I don’t know where this is coming from!” and continued with my talk.  My talk lasted, with those two interruptions, about 10 minutes. 

Those two waves of emotions really caught me by surprise!  I’ve never spoke in public about something so personal as this.  It was almost like reliving the day when Patty got the official word that she had breast cancer.  That was a pretty painful day for both of us. 

We plan on speaking in public about our story whenever asked.  This little bump of mine won’t hold me back.  I think I’ll be a little more mentally prepared, but then again, people knowing I was close to tears, showed just how this impacts your life.  I couldn’t have scripted it any better!

We got home that evening around 8:00 p.m. and got busy packing for our trip up to Placerville and Lake Tahoe for the weekend.  That’ll be my next blog.

Praise God!!!

Patty and Avery were both pretty happy after today’s doctors appointment!

You can tell by the title of this post (and also from this picture)  today’s appointment was good!

Patty woke up this morning frightened to learn the results of Tuesday’s CAT Scan.  She wears her emotions on her face and it was pretty obvious how she was feeling.  Thank God Patty now watches Avery during the day as that precious granddaughter of ours keeps Patty’s mind from spinning!  Still, her 11:00 appointment couldn’t come soon enough!

I took today off to support Patty with whatever the scan results revealed.  Even though I was pretty confident that the results would come back good, I woke up this morning a little scared thinking “what if I was wrong!”  I took Molly for a long walk this morning and thought things out as well as had a comforting discussion with God.  By the time I got home I felt confident that I could deal with and support Patty with whatever the results revealed.

We packed Avery up and were on our way for the appointment around 10:15, arriving at the doctor’s office a little before 11:00.  We had about a 15 minute wait before being called back.  We learned that Avery is a magnet for nearly anyone within eye shot of her as she had the entire waiting room hovering around us saying what a cute and happy baby she is!  Of course, Avery smiled and flirted with everyone!

The moment of truth finally came!  We walked back to the exam room and were met by the Pulmonary Specialist within minutes.  He is the nicest man!  His presence makes you feel comfortable the moment he walks in the room!  We chatted for a few minutes, he looked at the scan and said: “Well Patricia.  My radiologist is very comfortable with the results.  He doesn’t see anything.  I don’t see anything.  Everything looks clear!!!”  Praise God!

Today was just huge in the big picture of our journey!  The clear CAT Scan means we’re now done with the treatment phase!  Looking forward, Patty will see her oncologist every three months for the next year.  She’ll see the pulmonary specialist in six months and at that time all he’ll want to do is a chest x-ray as opposed to another CAT Scan.  If things are still looking good she won’t need another scan or chest x-ray for another year! 

Thanks again for all your support and prayers!  We’re firm believers in the power of prayer.  We’re even more confident that God has been with us this entire journey!

Patty said she wants to toast today with some champagne!  We’ll see if her taster is up for it!

21 days since Patty’s last chemo!

Today marks a very special day for Patty.  If you recall, Patty was having her chemo every 21 days on Tuesdays.  She had her last chemo on December 14th, 21 days ago. And you know what?  She doesn’t have to go today!  We talked about it last night and I can’t tell you how happy she is to have the chemo completed!  Chemo really did a number on her, physically as well as mentally.  But, she’s done.  We had our little “No-Mo-Chemo” celebration three weeks ago.  It meant a lot to her, but today really brings it home!  It makes it real.  She’s done!

Patty is physically doing really well!  While going through chemo, she’d get to this point where she’s getting stronger, then “wham!”  Back to chemo and loose whatever strength she had.  But now, she’s just going to get stronger and stronger each day.  She’s been feeling so good that she actually went to a Jazzercise class last week.  She’s hoping to go to a couple this week.  The other thing is that she’s getting her three-week fuzz on her head.  This “three-week” fuzz will actually start turning into hair over the next few weeks.  It’s kind of funny because Patty is getting a little impatient with the lingering chemo side effects.  She wants to feel 100% right now!  She’s wants her hair to grow back right now!  I try telling her that it’s going to take some time, but do you think she’ll listen to me!  Not a chance! 

Patty has some doctors appointments coming up.  Next week she meets with the reconstruction doctor who will give us a game plan for the upcoming months.  She also has an appointment with our chemo Oncologist next week.  She’ll also give us a game plan for the upcoming months.  Then she has a very important appointment the following week… she has her first follow-up CT Scan.  This is to see if there is any cancer lingering that may have traveled to other parts of her body.  She is very worried and anxious about this test.   She has shared her anxiety with me.  Right now there’s a lot of “what if’s?”  She explained that over the past six months, every treatment, test, consultation was done with a purpose.  She knew what was going on every step of the way.  Now that she’s completed her chemo, she’s back in limbo, not knowing what’s in store for her today, tomorrow, next week or in the distant future.  I told her that early on in her treatment, metastasis was a big concern of mine.  Since she had her last CT Scan in July which showed the cancer to be localized in her left breast, and after having the mastectomy, this is no longer a concern in the forefront of my mine.  Maybe I’m wearing rose-colored glasses, but I have faith that the doctors have given her the best treatment possible and I’ve prayed that this scan is clear.  Even hearing my thoughts, she’s still very anxious about this tests.  I do understand!  Having this anxiety, she decided to go to her cancer support group meeting yesterday over at Sharp Hospital. The support group meets every Monday.  Patty goes when she feels she needs some support from others whom have experienced what she’s going through.  She said that this group can sometimes be pretty depressing.  But, she went.  She said that going helped.  I guess what will really help is getting through this scan with great results!  Say your prayers for her!  

So, as before, we’re just taking life one day at a time.  It’s easier said than done, but we’re going to try not to worry about yesterday,  try not to worry about tomorrow and let’s make the most of today.  And today is all about no longer having chemo!