2 days post-op -Warning Picture included

I knew that this surgery was not going to be easy, but I have still been surprised at the pain involved.  Dr. L had told me that he would reopen the original mastectomy scars, but when Nick removed my bandages this morning the incisions were almost double what they were before.  I hope that he was able to remove or release as much scar tissue as possible.  I can tell that the implants have already moved back down into their natural location.  They can no longer be felt up under my collar bone. I am resting a lot and still taking my pain pills along with benadryl for the itching that is caused by the pain meds. I am going to add a picture here of what the incision looks like…so if you don’t want to see now is the time to x out of this link. The picture shows one side, but the second side is nearly identical to the one shown in the picture. You have been warned. IMAG0221

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Surgery Update

Yesterday was a long day.  We left the house at 10:30 to head for the hospital in Louisville.  Surgery was scheduled for 2pm…  But knowing my luck..I didn’t go back until 3 because the surgery before mine went longer than expected.

Do you know how they give you that cocktail of drugs before they take you to the operating room so you will be calm and relaxed?  I have always had that and have had no memories of the OR at all.  Yesterday was different.  The anesthesiologist forgot to order it for me before hand.  I was completely aware of being taken into the OR.  I moved myself over on to the operating table and was fully aware when they strapped my arms down.  That is when I started to freak out.  I was crying and shaking.  Abbey, Dr. L’s Physicians Assistant came over and held my hand and asked if I remembered her.  I said “Of course I remember you, Abbey.  You are one of the sweetest ladies that I have ever met”.  She talked to me and was able to get me to calm down.  It seemed like it took forever before they started giving me the medicine and put the oxygen mask over my face.  The next thing that I remember is waking up in the recovery room.

When I had the bilateral mastectomy I had a reaction to the Lortab pain medication that they gave me when I was in the hospital.  The doctor added Lortab as a medication that I am allergic to.  Fast forward to yesterday and I have reacted similarly to the Lortab incident.   This time I was given Percocet.  They now feel that I am allergic to the acetaminophen which is one of the main ingredients in both pain pills.  I spent the entire night itching all over.  The doctor said that Nick could give me Benadryl for the itching.

I am back to sleeping in the recliner again.  Nick slept on the couch last night so he could be near me in case I needed anything.  He takes such good care of me,  He got up several times during the night to help me to the bathroom and to get my pain medicine.  I think that he is a keeper!

As I said before, I cannot see the results on the “foobs”.  The plan was to release the scar tissue so that the implants can fall back into a normal position.  The fat grafting was to suction fat from my abdomen and inject it into the breast area to make the foobs have a more rounded appearance and to fill in some of the indentions caused by the scar tissue.  I can see my abdomen already because it is not bandaged..and wow…it looks terrible.  Very bruised.  And extremely sore.

I can’t wait to see what the results look like.  I hope the recovery period is not long.

The countdown is on

My surgery is scheduled for Wednesday, December 10th.  Two days from now.  The closer it gets the more nervous I get.  I have to be at the hospital by noon.  Surgery is scheduled for 2 pm.  I hope and pray that this is my last surgery.

I am anxious to see the results and I hope that this procedure not only gets rid of the painful scar tissue, but also improves the look of the “foobs”.

I met with a new oncologist last month.  I absolutely love Dr. R who has been my oncologist since my diagnosis.  BUT….with appointments every 4 months, travel to Louisville is very time consuming and I end up missing nearly the whole day of work.  The road construction on I65 makes the drive up there and back home very long.  Add on top of that and the long wait,  a whole day is gone before you know it.  Now that I am finished with treatment, other than my every 4 month check-ups and targeted therapy with Aromasin, I started to look for a new oncologist closer to know.  A new oncologist recently came to E-Town and took over as Medical Director at the new Cancer Care Center and through our local support group I had heard many good things about him.  I made an appointment and Nick and I went to “interview” him to see if we felt comfortable transferring my care.  Nick and I went prepared with a list of questions.  We asked him what his standards of care were for a woman with stage IIB breast cancer and what testing he used to monitor for recurrence.

Dr. AL answered all of our questions and was very thorough in his answers.  He looked through my records and asked some questions of his own. He took his time and did not rush us at all.  After he answered all of our questions he printed out some information for me and then asked if he could examine me.

He explained to us that due to the combination of chemotherapy, having my ovaries removed, and taking the drug Aromasin, my chances for developing osteoporosis were much higher than normal.  He ordered blood work, x-rays, and a bone density scan.  He said that the bone density scan was needed to get a baseline of my bone health.  The blood work was ordered because after the strong regimen of chemotherapy that I had, I am at a higher risk of developing leukemia (a cancer of the blood) for up to 10 years. He will do a blood work-up every 4 months for my first 5 years after diagnosis.

My lab work results came back good.  The bone density scan showed that I am already experiencing osteopenia.  This means that I am experiencing a thinning of my bones due to the chemo, ovary removal, and drug treatment.  I am now taking 1000 mg of calcium along with 2000 units of Vitamin D3 a day.  I will have a repeat bone density scan in one year.  Dr. AL said that I showed some significant bone loss (considering my age) in  my pelvis and femur bones in both legs.  It was not enough loss to be considered osteoporosis (thank goodness!!).  We hope that with the added supplements along with weight bearing exercises that I can prevent the bone loss from worsening.

Overall, the appointment went really well and I am doing amazingly well for all that I have been through over the last 2 years.  Nick and I both felt confident in transferring my care to Dr. AL.  I do not have to see him again until March unless something else pops up.

Update

First off, I am very thankful that I have not had anything cancer related to blog about for a good while now!!!

I went to see my reconstruction surgeon yesterday.  I have had some issues with my implants that I have not been happy about.  And also because I went zip-lining over the weekend and I thought that I had yanked my arm off!!!  That was causing pain down into the reconstructed breast area.

One of the issues with my implants is that the one on the right had “drifted” up quite high.  The implant was smooshed (how is that for a medical term??) and could be felt right under my collar bone.  The tissue also had areas of intentions caused by the scar tissue.  The reconstructed breasts are sunken in on the front.  I actually discussed with Dr. Little the option of having the impants completely removed and just closing me up.  He said that based on the amount of tissue that was removed with my mastectomy, that I could expect to not just be flat like I assumed, but that the right side would probably end up with a caved in appearance and I may find that even harder to deal with emotionally.

Dr. L is going to do several steps.  The first step will be to go in and release the scar tissue.  I had this step done last April when I had the expanders removed.  I am dreading this part because it was very painful.  After releasing the scar tissue, he will do autologous fat transfer.  This means that he will do liposuction on my abdomen and then transfer to my breasts in order to fill in the sunken in areas around my implants to give them a more natural appearance.  He will not suction out the fat and then immediately inject it into the breast area.  The harvested fat will first go through centrifugation to separate out the unwanted components (blood, oil, water) before being transferred to the breast area.

Dr. L says that this should help the appearance greatly.  The most important part of the surgery is that it is releasing the scar tissue so that I do not have pain and discomfort from the implants having drifted.

His office is supposed to call me today to let me know when my surgery is scheduled.  Sometimes I seriously question whether it would have been easier if I had never attempted the reconstruction portion after the mastectomy.  I think it would have been much easier.  But then on the other hand, I know how self conscious I am about the appearance of the  implants, so I may have been worse off emotionally with no reconstruction.  I don’t know.  The one thing that I do know for certain is that no part of being diagnosed with breast cancer is easy.

Feeling great!

I believe that this may be one of the best updates that I have posted in quite some time!  I had an appointment with Dr. R, the pain management specialist, and he recommended intercostal nerve block injections.  EIGHT of them.  Three sessions in the month of July.  I honestly did not have much faith in them working for me as everything else has failed to give me pain relief.

I had my first session on July 9th (Wednesday)  at the surgical center.  It was very painful and I thought to myself “I cannot do this two more times!”  The following day was torture.  I could not hardly move.  I went back to work the following day but had to use an ice pack and tried not to move much.  By Friday night I was feeling better than I had in a long time.  On Saturday Nick and I went to the Louisville Zoo and I was able to walk around the entire zoo without having to stop and sit down.  I even carried a back pack purse on my back with water bottles in it for us. 

Even though I was dreading it, I did go back the following Wednesday (July 16th) for the second series of injections.  This time it went much better!  I experienced no where near the pain of last treatment..and the following day was great.  In the past two weeks since I started these injections I have felt better than I have in probably the last 2 years. 

I don’t know how to explain it.  It is like these injections have given me my life back.  I was in pain all the time.  I could not sleep through the night due to the pain.  Waking up multiple times a night leaves you tired.  I was sad that my pain level left me irritable and unable to do many things that I enjoyed.  I has to continuously ask for help with the smallest things around the house. 

Life after the injections has turned around!  I have done so much and have felt so wonderful!  I have actually been able to stand at the kitchen sink and wash dishes without crying.  I have been able to carry a basket of laundry without asking for help.  I cleaned the entire playroom and cleared out the closet, and cleaned/organized the basement this past week.  And I was able to do it pain free and I did not have to ask for help! The best thing is that I am sleeping through the night!  this is huge for me because I cannot tell you when the last time I had been able to do this.  And by getting a good nights rest, I am up early and ready to tackle my day and have not required a nap in order to make it through. 

Nick has never made me feel bad for needing so much help, but requiring so much from him and the kids was starting to wear on me and I hated it.  I wish I had been referred for these injections months ago.  They have helped to give me my life back!

Chronic pain takes a toll on your body and I didn’t even realize how bad it is was affecting my quality of life until now.  The difference is amazing!  Dr. R says that this treatment should continue to give me relief for 6 months to a year..maybe more.  He is very pleased with the outcome so far.  I go in tomorrow for the final 8 injections and I am actually excited to do it and get it over with!!!!  The only discouraging part of this is that the nerve damage is permanent, so when the injections stop working I will have to go through this again, but it is worth it!

Thank you Dr. R!!!!!

The new ME

Nick said something to me the other night….he said that I haven’t been “his Deb” for a long time now.  Cancer changes you.  I believe that anyone who has been diagnosed with cancer can understand what I mean.  After the whirlwind of diagnosis and treatment, you have to find yourself again.  You are finished with treatment and more than anything you just want to put all of the cancer crap behind you.  But the lingering side effects are a constant reminder of what you have been through.  Life as you knew it is no longer.

A survivor deals with possible scars on their body.  Emotional scars.  Physical limitations of not being able to do everything that you once could.  Fatigue.  Bad post-chemo hair (I am attempting to be funny on this one, but it really isn’t all that funny when a year and a half after chemo you still have a freaking bald spot in the back of your head!)  The start of trying to figure out the new you begins.

You are not really getting back to normal.  I don’t believe that is possible.  Instead, you have to find a new normal not only for you, but your spouse, and the rest of your family.  A cancer diagnosis and treatment is also brutal on the husband/wife of the patient.  We have to remember that they have been affected also and that they need support.  They also have to try to find the new normal for themselves.

For me, life after cancer has taken on a new meaning.  I look at so many things differently now.  My relationships have changes.  With my husband, children, mom, sisters, and extended family.  For all of my married life I was quiet and didn’t voice much about things that bothered me.  I went along with what Nick wanted.  This is not being said in a bad way about Nick.  He didn’t know that I felt differently about things because I didn’t tell him.  It made me happy for him to be happy.  Now we are both adjusting to the fact that I am more vocal when I am upset or when things bother me.  I insist that he listen to me.  He is not used to this and it is taking a lot of adjustment.  He is not quite sure how to take the “new Deb”.  We have had some pretty heated arguments over the last few months.  Nick says that he is happy that I am speaking up and telling him how I feel about things now, yet at the same time it has caused a strain because he is not used to me disagreeing with him and standing firm on what I want/need.  So, like I said, it has been a big adjustment period.  I know that we are strong and committed to one another, and because I know this, I also know that we will work out the kinks in our new life and come out even stronger on the other side.  We may not always agree, but we do agree that we love and respect one another.

I am aware that some people feel that I have changed a lot. Some could say for the better, while a few (I hope a very few) could say for the worse.  Those few probably feel that way because I now speak my mind and don’t just set back and take crap from people.  I don’t think I am being mean, but I am sticking up for myself.  I feel that it is way over due in some instances.

Many of my fellow pink sisters (me included) have dealt with depression and anxiety.  While some do not understand how you can become depressed after the treatment is over (when you should be celebrating), it is actually a very common occurrence.  You are happy that treatment is over, but you can sink into depression due to the physical and emotional changes that are affecting you following treatment.  Many of us (me included) deal with body image issues due to the scars.  So much has changed and it is difficult to deal with it all.  You have to take the time to take care of yourself.  Go talk to a therapist if you think it may help you.  Do not be embarrassed to admit that you need help.

My last thought on the new me is something that a few of my fellow pink sisters have also experienced.  Family and friends think that now that treatment is over that you should just bounce right back to the old you physically.  It is impossible.  You are still tired.  A tired that cannot easily be explained.  Tired to the point where you need breaks and naps even though you were not a person to take naps before.  It does not matter if others do not understand this.  Just remember to take care of yourself.

Cancer fighters have to move on with their lives.  This is what I am attempting to do.  I am trying to find my way in this crazy new life of mine.  Taking care of myself even if it means I have to say no to someone else.  We cannot live every day wondering if today is the day that the cancer returns.  That is not living.

Look for something positive in each and every day.  Believe me, no matter how terrible the day has been, there is something positive to be found if you just take the time to look.

 

Follow up from Appointments

I went to see my oncologist last week and she suggested staying off of the Arimidex for 30 days to give my body a rest.  She said that this will also help us determine exactly where my pain in coming from.  I became very upset over this suggestion and cried.  It is so scary to not be taking the medication that they tell you is helping to keep your cancer from coming back.  Talk about stress!!!  We talked about quality of live vs quantity. She urged me to keep the appointment with the pain management specialist and then we will determine my next step medication wise. 

Today my mom and I went to see the pain management doctor and he had already reviewed all of my cancer records including my surgeries.  He believes that I have a couple of factors at play.  One is called post mastectomy pain syndrome.  It is a chronic neuropathic pain caused by damage to nerves during the mastectomy.  He said that this type of pain can be considered severe and can also interfere with sleep.  I didn’t need anyone to tell me this!  I already knew!  This is also contributing to my “frozen shoulder” and the pain associated with it.  He has recommended intercostal nerve injections.  I will be getting 8 numbing injections followed by 8 addition injections into the intercostal spaces of my ribs.  I will go three times for this procedure in the month of July. 

The pain doctor said that this kind of pain is considered chronic and is something that I will deal with from now on due to the severe nerve damage.  I have areas of numbness that go all the way around my side and to my back, as well as my underarms which is also a result of the nerve damage.  He also said that the Arimidex doesn’t necessarily CAUSE the pain, but it does amplify the pain that I already have.  This is why the pain got so much worse after I started taking the Arimidex in October. 

His office worked today to get a pre-certification through our insurance company for the injections.  They called me this afternoon to let me know that the insurance company approved them.  I will have to go to the surgical center for them and cannot get in there until July 9th.  I am disappointed in that, but happy that I am scheduled and will hopefully have some relief soon.  I was also told that the goal right now is to at least cut my pain level in half.  If I get results greater than 50% he will be very happy (umm….me too!!)   After the three series of injections (A total of 24 numbing, and 24 steroid injections) in July, he said that I can expect to have relief anywhere from 6 months to a year.  Fingers crossed!!! 

I will now have to talk to my oncologist again to see if I can restart the Arimidex. 

On a brighter note…our daughter, Beckie, graduated from high school!!!