Not the Consolation Prize I Hoped For

I wasn’t in the best place after my last blog post. I was very down; my counselor said I wasn’t depressed, but what I was experiencing was grief and anger. That sounded about right to me. A week ago, I hit a breaking point, but after a ton of crying for a few days and a one hour massage, I felt a lot better. It’s hard trying to stay positive about getting to the finish line when the finish line keeps constantly shifting.

Cancelling the trip to Yellowstone was a huge disappointment, but on a positive note, Delta reimbursed me my miles with no penalty (should have been $150 per ticket) and Priceline refunded all but $40 of our non-refundable rental. Both companies got doctor’s notes, so I’m extremely thankful that they both were so understanding and compassionate. So I’m only out $92 for the trip instead of the over $600 I was expecting.

That’s good news because the $1,300 I had planned for Yellowstone is now going towards a new air conditioning unit and heat pump as when I got home from the All-Star race yesterday, the A/C was not working. I had wanted to buy myself a consolation prize for not being able to go on the trip, but this was not what I had planned. I’m going to be out $4,230 total, but at least they can fix it tomorrow. I’m staying with my next door neighbor (thanks Anne for putting me up last night and tonight), but I feel so bad for my kitties as all I can do for them is leave fans on in this 90 degree weather. I guess God works in mysterious ways – he must have known I’d need that Yellowstone money for this, or at least that’s what I’m believing to make me feel better about not being in Yellowstone as I type this.

Medically, things are looking up. I’m feeling better now I’m off that anti-biotic for almost a week now. I saw the infectious disease doctor this morning and he says everything looks good. He said the most critical time for an infection to recur is the first two weeks and tomorrow will be one week clear. He said they can flare back up months down the road; but we just won’t know. Only time will tell.

I start the expansion process on June 3. I’m not looking forward to it as this will be the third time I’ve gone through this and it is painful, usually having me in a pain for a couple of days following the procedure. I will expand every Friday in June and early July. At that point, we can set the next surgery date. I’m not looking forward to spending all my upcoming weekends in pain on the couch, but it is what it is. I’m just soldiering on the best I can.

As best I can tell, I’ve got at least two surgeries left, this next one in late July/early August and then one more three months after that. I know we’ll have some final touches, but I’m not sure how long I have to wait for those.

All I can hope for is in 2012 (I guess not 2011) that I can use all my vacation days for vacation!!!

Love to you all!
Marcy

Down

I saw both of my doctors on Friday. The reconstructive surgeon said everything looks great. He took my drain out (yeah!) and then said my stitches will come out on Tuesday.

The infectious disease doctor said the blood cultures came back negative, so they have no idea what caused this infection. Not good. He said it looks like the antibiotics are doing their job, but we are still not out of the woodwork yet. If I stop taking the antibiotics and the infection flares back up, then we still may have to do surgery to take out the expander. They will be drawing blood on me weekly to check my white blood cell count to make sure the antibiotic does not make me anemic. I also got him to change my anti-nauseas medication from Phenergan to Zofran, as the Phenergan was making me incredibly sleepy. He also cleared me to go back to work on Monday. He didn’t agree with it, but said he wouldn’t keep me from going into work. He said he doubted I’d be able to put in full days for a while, but he was willing to let me go to work as long as I listened to my body and go home when I’m dragging. He also gave me a pneumonia vaccine. I was overdue for a Tetanus shot, so I got him to give me that too. Needless to say, my right arm feels like a punching bag right now. Painful!

I’ve got only four more Hyperbaric Oxygen treatments next week. I’m thankful that’s coming to an end. Six weeks of 3 hours being eaten out of every day Monday through Friday has been more taxing than anyone could imagine. That’s at least one bright point on the horizon.

What was the most disappointing news was that I am going to have to cancel my trip to Yellowstone at the end of the May. Since I’ve gotten sick in June 2009, I have taken two days off for travel/personal use – that was when I tagged two days on to my Sonoma, California work trip. Every other day has been used for medical treatments /surgery recovery. I am canceling this trip for several reasons: 1) I do not know if the antibiotics will work, avoiding another surgery; 2) I doubt I will feel healthy enough to do all the hiking/sightseeing I want to do; 3) I will need those days for subsequent treatments/surgeries I hadn’t planned on. Needless to say, I’m VERY upset. I am also out about $600 in down payments that I won’t be able to recoup. I purchased travel insurance and now they are saying they won’t pay because this was a pre-existing condition.

I cried a lot yesterday. I just feel worn down. Exhausted. So over this journey and how hard it has been at times. I just want to be done. June will mark two years from the start of this and if everything goes correct, I’ll be lucky we’ll be done by the end of the year. I’m tired of every day that I take off for work it is for medical and not for mental/restorative. I’m so exhausted, sad, disappointed…. I can’t even put the feeling into words properly. I just want my life back so desperately. I keep up my spirits most of the time, but I’m in a hole now. I’ll climb out eventually, but I guess I just have to weather the misery right now.

I had a friend send this to me a while ago and it’s something I listen to on my dark days. I have to have faith that there’s a reason for all of this suffering, but for the life of me, I can’t understand right now…. Mandisa’s “Stronger” http://www.youtube.com/watch?v=emgv-VRtMEU

Love,
Marcy

I Wanna New Drug....

Hey everyone, here’ s a quick update….

I’m home now – got discharged Monday afternoon. The area is still red and really hot. If the antibiotic is not working, they will schedule a surgery for me to have the expander removed and no one wants that to happen. Please pray the drugs will do the job.

So when the doctor told me I was going to get the oral vs. the IV antibiotics, I thought I got lucky. No stay in the hospital and just oral meds, how great? Well, that is NOT SO! This medicine is way worse than being in the hospital. The antibiotic is WICKED. The side effects are much like what I went through during chemo. It makes me tired and achy. I get horrible body cramps/pains. It gives me a metallic taste in my mouth and causes severe nausea. They prescribed me an anti-nausea drug to help battle it, thankfully. When writing this blog, all I could think of was Huey Lewis' song, "I Wanna New Drug." (Sorry I've got that 80's tune in your head now!)

My hope is go back to work on Monday. I see both my doctors on Friday and they will make the call on how the drugs are handling the infection. Right now they want me to rest as much as possible.

Thanks again for everyone’s support….

Love,
Marcy

Bad things happen in three’s, right?

So I have some updates from yesterday…

When I got to the hospital, they first took some blood to grow cultures to see if they can nail down what the specific infection is. More than likely it is strep or staph.

Next, they sent in an IV specialist to put in a line to receive the antibiotics. After several very painful pokes, she could not get a line. Another specialist came in, tried her hand at it, but was also unsuccessful. I’d like to think I’m a pro at all of this now, but I was in bawling as it was so painful and we came out with no IV stick.

The infectious disease specialist, Dr. Hengel, came to visit with me next. He was awesome. We spoke about all my options. He said my veins were shot due to the chemo and blood clots, so we were unable to get a stick. All of my IVs for my past surgeries had been done with a butterfly needle in my hand and they couldn’t even get that to work yesterday. He also considered doing a PICC line. This would be inserted into a vein and run to the chest area – basically a central catheter line and they use an ultrasound to assist the procedure. However, due to my history of blood clots from the port, he decided not to go this route. He also considered a line in my jugular, but opted against that thankfully. Fortunately, for me, he went with the least painful option, oral antibiotics. The drug is called Zyvox. He said the drug was ridiculously expensive (from internet research, it is around $100 per pill) and has some serious side effects – it could cause me to be anemic or develop high blood pressure. I could be on this drug for a month (2 pills a day). I also have to be careful about certain foods/supplements, as the medicine could have adverse reactions.

I went to bed at 8:30 p.m. last night, but only slept for an hour. The nurse came in at 9:30 p.m. and we discovered I had a fever of 102 degrees. She gave me Tylenol, but from then on, I didn’t sleep much as all I did was sweat trying to break the fever.

I still have no idea how long they will keep me in the hospital. You would think since I’m taking the oral antibiotics, they would release me, but I know they need to grow out the blood cultures to make sure they know what specific infection they are fighting and to also make sure I don’t develop any of the side effects from the drug. The redness and heat of the left breast area has still not lessened any, so I’m still concerned.

Since the old adage says “bad things happen in three’s,” I’m praying that all my complications are behind me now!

Love to you all!
Marcy

P.S. - the picture is an Angora Bunny, so happy belated Easter!

Complications Squared

Go figure, I can't seem to catch a break.....

My surgery was on Thursday and things did not go as planned. The surgeon
was supposed to cut out the radiated skin, close it up around the
implant and we'd be on our way to the final tweaking stages of the
reconstruction.

Unfortunately, when he started cutting out the radiated skin, it didn't
leave a lot of room for the implant. So, he decided to make the area as
healthy as possible, cutting out all the radiated skin and scar tissue,
but what was left was not large enough to close up over the implant. The
surgeon decided to put in an expander again, go through a quick
expansion process and do another surgery pretty quickly to get the
implant back in.

I was bummed, but I had no expectations coming out of this surgery after
I was so devastated when things did not go as planned following the Feb.
3 surgery. I wasn't pleased, but I tried to take it in stride.

I felt great on Friday - I guess still having some of the benefits of
anesthesia. But by Saturday morning, I had a temperature of 103 degrees.
My surgeon said to take Tylenol and ice down the left breast area and my
fever should go down, which it did by Saturday night. I didn't feel
great on Sunday, but was mostly just tired.

Well this morning, my chest area was bright red and started hurting more
as the morning wore on. My hyperbaric oxygen chamber doctor called my
surgeon during my appointment with them today and they wanted me to see
my surgeon immediately when I got out of the chamber at noon.

My surgeon said the area was infected and the best way to combat the
infection is to be admitted to the hospital for IV antibiotics. I have
been referred to an infectious disease specialist, so I am waiting to
see how long they feel it will take to clear this up. My surgeon said it
could be anywhere from two to four days. Again, I tried not to get
upset, but the tears came anyway. I'm just so over the complications and to be dealt two of them so quickly just stinks....Trying to keep my chin up but it gets to me at times.

Thanks as always in your interest in keeping up with me and my journey!

Love to you all!
Marcy

Lucky No. 7

So it’s surgery time again…. I will be heading in for another reconstruction surgery on Thursday, April 20. This will be the seventh surgery in 21 months.

I’ve been going to the hospital every day for a month now for my hyperbaric oxygen treatments to prepare for this surgery. I get there each day at 7:40 a.m., treatments are from 8:00 a.m. to 10:00 a.m., then I spend 15 minutes getting ready in a public restroom afterwards as I can’t wear any makeup/contacts/skin care products, etc. in the chamber each morning. So that means I’m getting to work at 11:00 a.m. each day and I stay until 7:00 p.m. or later, so that eats into any social time I used to have.

I will have to do 10 more treatments starting the day after my surgery too, so that means I’ll spend six full weeks in the chamber daily, Mon-Fri.

Many friends have asked how the treatments have been going. Everyone assumes that I will just feel awesome every day due to what they’ve heard about HBOT. Actually, I get a lot of headaches and cramping in my chest from the treatments. The only person that will know if the treatments are working is my surgeon once he cuts into me. The goal is to promote healing and new blood vessel growth in the skin that was damaged from the radiation.

I went in for my pre-op appointment and learned this would not be my last surgery. The doctor will want to do another surgery 3 months after this one. My doctor will cut out the radiated skin and insert a bigger implant on the left side this time and my recovery time will be 1.5 to 2 weeks. The next surgery will not be as invasive, only requiring me to be out of work around 4 days. It will still require me to go under full anesthesia, but he will just be inserting some filler and doing some stitching to provide symmetry.

Every time I think I’m getting closer to the end of this journey, it just keeps extending. I am so ready to get my health, strength and stamina back. Going under full anesthesia every few months is hard on your system. Plus, I’m ready to have my free time back and not spending so much time on treatments and procedures.

I keep reminding myself that I cannot control this journey and I’ve almost become numb to getting excited about getting my life back. Originally, I thought it would take a year out of my life. Now it will be more than two. Right now, I just refuse to put any expectations on anything that would get my hopes up. Every time I do, I just keep getting let down. It is what it is. I will cross the finish line when it happens and just celebrate every day in between the best I can. Every day is a gift. No one knows that more than a person whose life has been touched by cancer.

Wishing everyone a happy Easter! I will be recovering at my parent’s house again for the weekend following surgery, so hopefully the Easter bunny will know where to leave the chocolate!

Love to you all!
Marcy

You are putting me in WHAT?!

On Monday, March 14, I served as the Keynote Speaker and Survivor Model for the 20th Annual Hope Fashion show in Atlanta. I was so honored to be asked to speak and I’m proud to say the event raised over $100,000 for the American Cancer Society. I do a lot of events for a living and this one was simply fantastic!

In the speech, the ACS team urged me to speak about my journey and how my doctor nicknamed me, “Sally Side-Effect” because if something was going to happen, it was going to happen to me. Well, God must have heard me, because a few days later, I got a call from my doctor saying he wanted to refer me to see if I was a candidate for hyperbaric oxygen therapy (HBOT).

During HBOT, the patient breathes 100% oxygen while enclosed in a pressurized chamber at two to three times greater than normal atmospheric pressure. While breathing pure oxygen, the patient’s blood plasma becomes saturated carrying 15-20 times the normal amount of oxygen to the body’s tissue. This increase of oxygen to the tissue produces several benefits to the areas affected: promotes new blood vessels; decreases swelling and inflammation; deactivates bacterial toxins; increases the body’s ability to fight infection; and improves the rate of healing.

Long story short, basically I think my doctor didn’t like how my radiated skin was responding, hence the reason for the conservative route of having an additional surgery. The goal for HBOT is to heal my radiated skin and they feel this can be accomplished even 13 months after radiation ended.

It was explained to me as such: when you cut your skin, the skin around it notices a huge change in oxygen levels and immediately begins trying to heal the damaged skin. Well with radiation, the burns are diffused from the center out. So the center area which got directly hit is next to skin only a percentage different and so on and so on, so the healthy skin never understands it needs to heal the burned skin because the center to the edge is so far away.

While I was very excited about this opportunity, when I learned more about the therapy, I realized what an inconvenience it will be. I will have to go to Piedmont Hospital every day (M-F) for four weeks. The appointments are 2 hours long and you are in the chamber for 90 minutes. You can’t bring anything into the chamber, but they do have a TV you can watch (no remote though!). The chamber actually looks like a bank tube (see photo). What makes it even more inconvenient is you cannot wear anything in the chamber but a cotton hospital gown: no contacts, hair care products, lotion, deodorant, NOTHING! Which means I have to lug all my stuff to get ready for work there each day. My appointments will be at 8 a.m. each day, so I will get to work hopefully by 11 a.m. each day. And I’m going to have to work longer hours at night to make up for hours I’m missing in the morning. I realize it is a small price to pay for the rest of my life, but it still just stinks.

And I know I should not be complaining. I have a friend that was just diagnosed with Stage 4 cancer. The thing I told him was, “If you are going to plan anything, plan for the unexpected. I drove myself crazy trying to plan how everything would go and nothing goes as planned. Just be flexible and take each day one day at a time.” Well what a hypocrite I was…. Here I got news that my plans had changed and I got upset again. I just have to remind myself, I cannot control this.

So, now my surgery has been rescheduled for April 21. That will give me four weeks to heal before I head out to my first big vacation of the year to Yellowstone! It’s cutting it a lot closer than I wanted to. I thought I was going to be finished Feb. 3 when I planned the trip, but I’m going to work hard during the recovery to get as strong as I can for that vacation!

Love to you all!
Marcy