Sunday, January 20, 2019

My Breast Cancer Experience - Mammograms Don't Show All Cancer

My Breast Cancer Story 2019

First few days of discovering my lump:

Slouching on my couch 2 weeks ago on a Saturday morning January 5th, I somehow brushed over my shirt and noticed a huge lump at the top of my right breast. How could I have a lump this big without ever feeling it before?! Pretty shocking! I called a few friends telling them about this discovery. 

I had a breast exam from the doctor 6 months ago and a mammogram 6 months ago. So how could there be this huge lump!?

I was afraid, but somehow I distracted myself with the Philadelphia Eagles playoff game against the Bears. I had a plan - get up Monday morning and make my gyno appointment and a radiologist appointment first thing. I go to a radiologist that has her own business where she reads the mammogram for 10 minutes, then she calls you into the room and shows you your mammogram. Any question at all, she does an ultrasound just to make sure.

I went to the gyno appointment at 11:00 am. The doctor had a hard time really feeling it while I was laying down which maybe explains how my doctor missed this in July. When I sat up straight, the doctor could feel the lump and guessed it to be about 2-3 cms. She looked concerned, and said that she was happy that I came in right away. She handed me my mammogram and ultrasound script. 

Thank God for my sisters and friends! Somehow I was being strong - don't know really how! My sister decided to meet me at the radiologist's office. I get the mammogram, and after about 10 minutes, the doctor calls me in, and said you're mammogram looks good...so then I showed her the lump! It could be seen from the outside slightly. She immediately said, "if I didn't feel that mass, I would have sent you home". She ushered me into the ultrasound room, and again nothing. She thought maybe that I got hurt in that area and had a lump. She was very confused, as we were. 

We went back to her office, and she called Dr. Jennifer Sabol at Lankenau Hospital in the Philadelphia area. She explained my scenario, and this amazing doctor asked for me to go right down for a biopsy. I could feel the eyes from the staff looking at me with sympathy, just as I would probably be doing
if I witnessed this.

My sister Diane was visibly nervous and shocked. We made our way down to the hospital navigating through the road congestion for 40 minutes. How was I still standing and not crying! Somehow, I was strong - again, don't know why... after Dr. Sabol finished up her surgery, this selfless woman called me in around 6 PM to be seen. She comes in the room saying that she saw nothing eventful on my mammogram - felt a instant relief for a brief second, then she felt it and said that it didn't look good.

My heart sank - I looked at my sister Diane. Next came the biopsy. Dr. Sabol prepared for a core biopsy of the tumor and a biopsy of one lymph node. I had heard horror stories about the breast biopsies from all of my friends that have had breast cancer - yes ALL. Clearly, this is an epidemic. Dr. Sabol must have amazing skills, since I felt no pain at all. She looked me in the eye and said that this lump was suspect, and that she was pretty sure it was cancer.

Every so often I would look to my sister, and I could see she was concerned and was praying inside.
The doctor finished up, I thanked her for seeing me so late, and I thanked her for being honest with me about the likelihood of this being cancer.

I was still standing! surprising myself! I felt sorta numb walking to the car. We called my brother John, then we called my uncle's wife Elena, and then we got a hold of my sister Linda. I don't remember after that. Next step was to tell my son. He started to cry, and I felt so badly to see that. I remembered one of the days that we heard bad news about my father when we found out that he had prostrate cancer that spread to his bones. It's not a good feeling. He was upset.

It was so difficult trying to text everyone with updates...I was passing out from the long day and trying to let everyone know what was happening. I passed out with no problem. The doctor had given me a prescription to use if I reacted badly. Fell asleep no problem. At 1 AM , I woke up shaking all over, felt like I was coming out of my skin. It wouldn't stop, so I took one of the pills that she gave me. After 20 minutes, my body calmed down so I could go to sleep.

Woke up the next morning still in shock. It's amazing how your body deals with the news of something like this. Sipped my coffee trying to digest what just happened. Couldn't go to work - work has always been a priority for me, but not today. Family and friends were on the agenda for today. Making calls, etc...

I went to work on Wednesday. I didn't work, but I did get to share this with everyone there. I am an open book. There's nothing that drives me crazier than people keeping secrets about something like this. People need to know. People need to know that my cancer did NOT show on a mammogram or ultrasound. This is how I deal with stress - TALK!

The doctor's office set up the MRI immediately. On Day 7, I went to get the MRI. I told the MRI technician that my cancer is not showing on a mammogram or ultrasound. She nodded and said 'every day I hear this'...pretty scary, huh? After the MRI, we drove right to the doctor who was going to tell me the details about my cancer and go over the MRI results.

This was the next scariest moment of my life - waiting to hear if this is a common type. Those inner voices told me that it could be the type of breast cancer that is not easily treatable. I tried visualizing a good outcome in the office. While waiting in the office with my sister, I just kept visualizing me being happy with the results.

The doctor came in....she showed me the report on the cancer first. It was Invasive ductal carcinoma. When I first saw that, I thought well at least I know this type. She said it was the garden variety type.
My sister had DCIS 18 years ago where only a few cells of cancer were found within the duct.

The doctor said that this was probably there 6 - 8 years.. I thought to myself 6-8 years of mammograms. I walked out of every one of those mammograms feeling relieved and threw that worry out the window for another year. Again, I had a mammogram every year! I was fortunate that this cancer was estrogen positive which makes it more treatable.

Then we discussed my options. Since the tumor was 4 cms, having a lumpectomy was possible, but it would leave me disfigured. Then, she told me that I could preserve my nipple and get a mastectomy with an implant of the fat from my stomach. The thought sickened me.

The doctor took us over to her assistant who made all of my appointments right then and there - cardiologist, genetic counseling, radiation oncologist, plastic surgeon.

The first thing we did after this appointment was go to the Cheesecake factory - I really didn't eat much these first 7 days. For the first time, I felt very hungry.

Thank God for my sisters, family and friends! I think that this is the reason that I'm holding up.

The moral of this week's story is that we really need our family and friends.

Week of January 21, 2019 (week 3)

I woke up Monday morning- the 3rd Monday from that dreadful day on January 7th. News about my genetic testing is due this week - just 1 worry this week. Only 1 appointment scheduled this week, and that was with the Plastic Surgeon Dr. Serletti from Penn Plastic Surgery. Dr. Serletti is the chief of Penn Plastic Surgery. He is supposedly one of the best in the nation and internationally known. I hope he lives up to his reputation!

After talking to my breast surgeon, she convinced me that I would not be happy with a lumpectomy due to the size of this tumor. Because of this, I am looking at a mastectomy on the one side only.

My brother had offered to go with me, but I thought that it would probably be an exam too, so I decided to just do it myself. I had to get changed into a gown and moments later, a Penn resident came in who looked to be in his late 20's. People are surprised sometimes to see how modest I am considering how open I am about pretty much everything.

The resident needed to look, and I barked immediately that I guess that I 'll be flashing boobs to everyone now...people never know how to respond to my bold and bizarre comments. He explained the procedure, and as usual, I was interrupting him every step of the way. Thank God for my extra fat in the lower stomach area - He said that I was an excellent candidate for the Fat implant - hah! I've always had that pouch even when I was 98 pounds...

Then Dr. Serletti came into the room. Of course, he needed to look, and he also confirmed that I was a good candidate for the fat implant. If I didn't have some extra fat on my body, I would then need to think about the saline implant. 

He explained the procedure. He would remove a chunk of my lower abdomen fat along with the skin, in case some skin was needed. After my breast surgeon performs the nipple-saving mastectomy, somehow Dr. Serletti  will move the fat under the skin of my hollow breast. Then the surgeon will take the 2 ends of my stomach, stretch and sew this together. He said that it will be somewhat like a tummy tuck - I may have a flat stomach for the first time in my life afterwards! Gotta look at the positives! After the surgery, I will wake up to a full boob.

As of today, I believe that I can preserve my nipple in my case. I am confirming this once again with the breast surgeon next week.

The surgery takes about 5 -6 hours to complete the mastectomy along with the fat implant reconstruction. The hospital stay will be 4-5 days.

It is really an uneasy feeling deciding on a plastic surgeon for reconstruction - This team has a great reputation and was recommended by Dr. Jennifer Sabol. I trust her, so I must trust the decision to go with this team from Penn. I didn't see all great reviews out there which really does scare me.

Dr. Serletti said that 9 - 12 months after this surgery that I would need to do surgery again in order to fix everything up. Sometimes the boobs are not sitting perfectly aligned or not matching perfectly.
After that surgery, I should be finished for good. Saline implants need to be replaced every 15 years.

That night I was questioning going with his team; but after watching the videos on the Penn Medicine website, I felt better about it in the morning. He did not show me any post pictures of fat implant patients, so I called the next day to speak with his assistant. I will talk to her on Monday to get pictures and also speak to his patients.

A LOT to think about!
Thankfully, the genetic specialist called me to tell me the good news - none of the 30 plus gene mutations were identified in my sample! YAY!

The moral of week 3's story is don't fret about extra weight - you never know when you will need it!

Be back next week with Week 4 - scheduling surgery!

Week of January 28, 2019 (Week 4)

I started off this week waiting to hear if Dr. Serletti had any openings in February for surgery.
It was looking like surgery may not be until mid-March. He is a very busy doctor since he is the chief of Plastic Surgery at Penn and always attending conferences and meetings. 

I spoke to my friend Dave's sister Jean early in the week since she had this same procedure in 2010.
She was great in giving me the details about surgery and recovery. She had used Dr. Liza Wu for her reconstruction, so I started thinking that I would be open to another doctor on the Penn team for the reconstruction.

I called Dr. Sabol's assistant and left a message saying that I was open to one of the other doctors.
She said that she would run it by Dr. Sabol and let me know in the morning. By Tuesday afternoon, no word from her. I called her a few times leaving messages - I hated to be annoying her but knew that if I didn't, I may be waiting until mid-March.

I decided to text Dr. Jennifer Sabol asking if she would be okay with me doing this, and she said fine. Her assistant called back - Dr. Joshua Fosnot had an opening on February 5th. I said "I'll TAKE it!". I read his reviews, and they looked to be good. I texted Dr. Sabol, and she said that he reconstructed her two best friends.

I had to take the first appointment with Dr. Joshua Fosnot the next day at 9:00 AM. I met him, and he was very informative telling me of all the risks. Apparently, blood flow to the nipple is very challenging, and he informed me that if they think that they cannot save the nipple, that they won't. Scary to hear! He explained that I've chose a real 'doozie' for my first surgery ever. He said that I will need help with everything. Since they are cutting out about 3 inches of your stomach for the fat implant, the stomach will need to be stretched from both ends and sewn up. I felt confident after meeting him. Actually, I felt as if everything was aligning properly - felt really good about both my doctors.

Then onto the Nipple saga... I started googling about the nipple-sparing mastectomy, and the stories were very concerning. Apparently, your nipple can lose the blood supply and die. My sisters, Peggy and Anita were sending me screenshots from the net. We read horror stories on the Internet, and I really started questioning this whole thing. I asked many people their opinions. Most people told me to not save the nipple for fear of cancer hiding under the nipple... I was tormented by this decision. I didn't want to make the decision to say 'don't save the nipple'.

I think that I embarrassed everyone that I work with about all my 'nipple' talk - but this is life. Hopefully, they learned a few things from all my jibber jabber about this. Again, I am not shy talking about things like this - People need to know what happens and what is available.

This decision was making me crazy all week - I finally decided to text Dr. Sabol for her thoughts on the decision. Dr. Jennifer Sabol sent me the most comforting text at 9:00 PM at night! She basically said that I need not worry about the decision - she would make all of the decisions so that I have a favorable outcome. If they cannot keep the nipple, then it is in my best interest. After that text from her, I felt a load off of my shoulder. I haven't thought about it since. This doctor is really amazing!

So, here I am on a Sunday morning with 2 days til surgery. With Dr. Sabol in that operating room, I have complete confidence going into this.

I'm calm oddly enough - not sure if that will be the case driving to the hospital at 5 AM on Tuesday.

The moral of this week's story is that you really have to be your own advocate and PUSH to get what you want - or else I would be waiting until mid-March to get this cancer out of my body!

Surgery Tuesday - YIKES!

Week of February 4, 2019 (Week 5)

I survived it! YAY!
Sorry for the late blog - I've been feeling a little sore with the drains!

I can't believe that I was in surgery exactly 1 week ago at this moment . I arrived at Lankanau hospital around 6 AM with my sisters, Diane and Linda. It was an eerie feeling waking up at 3:30 knowing what you were facing that day. I went to my accupuncturist at AT Wellness Center in Skippack, PA the day before for a relaxing treatment, and boy did it work! My body felt extremely calm and tired during the early ride down to Lankanau. I was told that I could take Xanax in order to calm myself prior to surgery, but I didn't even need it. I was still scared, but not shaking or coming out of my skin. Her treatments always work.

I had to wash down for the 3rd time with antibacterial wipes prior to putting on the hospital gown.
Nurses came in and took my vital signs...My sisters would be allowed in prior to surgery.
Dr. Joshua Fosnot came in with a black magic marker and proceeded to draw all over my right breast.
I must have asked 10 times how they know that they are working on the correct breast!

I felt completely confident with my selection of doctors!

The nurse ushered in my sisters to see me before getting wheeled into the operating room. Dr. Jennifer Sabol popped in at the same time to talk and also administered an injection for the sentinel node biopsy. I've had so much great support, but you still have to face these difficult times all by yourself.

My sisters said 'goodbye'..(thank God for sisters!) I was wheeled into the operating room, and they moved me from the bed to the operating room table. A couple of workers in scrubs waved to me when I came in. That's the last thing I remembered until I started to wake up around 3:00 PM.

I was in surgery from about 7:40 AM until about 2:30 PM. The first thing I remember when waking up was my sister Linda and brother John standing at the foot of my bed smiling. The nurse assigned to me was yacking away, and I knew instantly that things must have all went well. I made it through! I barely remember my sister saying that they saved my nipple, and that the sentinel node was free from cancer. I was too drugged to get super excited.

I was in and out of it, and I was wheeled to my room around 4:30 PM with my sisters and brother John.
Immediately nurses were attending to me and my wires. Every hour on the hour, the 'flap' needed to have a Doppler check for a pulse. This is to check the health of the fat implant. I had 2 drains branching out of my stomach incision and 2 drains hanging out of my newly-created right breast. These had to be emptied every 4 hours.

Once I came to, I felt really good and actually looked really good from the 7 hours of beauty sleep and oxygen. I looked down at my chest, and my first impression was that my newly-created right breast looked similar to my other breast.  I was very surprised that I didn't have more pain. The nurse gave me Tylenol, but the residual effects of my anesthesia were taking the edge off as well.

For the next couple of days, my pain levels were basically nil. I received an anti-inflammatory Toradol a couple of times. That was it. I didn't want to take any pain killers especially if not absolutely needed.

For the first 2 days, I was on a liquid diet - By the middle of day 2, I was begging for some bread or anything. I never was nauseous from surgery, and I felt really confident that I could handle some food.
I finally got some solid food at dinner time during day 2. Everyone kept telling me how great I handled everything from the moment that I felt the lump til after the surgery. It made me feel good every time that I heard it. Everyone always thinks I'm a wimp (including myself), but I surprised everyone and myself with this ordeal.

I was very impressed with Lankanau Hospital and its staff. My dear father had bypass surgery at Lankenau around 1988. I was blessed also to have Dr. Jennifer Sabol and Dr. Joshua Fosnot.

On Day 2, the nurse helped to get me moving into the chair next to the bed. It was tugging and pulling, but I made it to the chair. On Day 3, I walked some steps with the help of occupational therapy pretty much hunched over since my stomach was still stretching to accommodate for the 3 inches that were removed vertically.

I took a peek at my new breast in the bathroom...kinda horrifying since it is completely black and blue and swollen. This will be a lengthy process healing and syncing my new breast to my other breast. I trust this Penn Plastic Surgery team to get it right - it just may take a little while.

I spoke to some friends and family on the phone - again, I have the best family and friends on the planet. Everyone was wonderful. My uncle Joe and his wife Elena have been my medical advisors along this journey. My uncle, who spent his career at the National Cancer Institute, was telling me that it is highly unusual to get Invasive Ductal Carcinoma without it presenting itself as calcifications. That's how this darn bugger got past everything!!!

On Day 3, I mentioned to the nurse that I felt a little uneasy about having my room right next to a door.
She assured me that there was nothing to worry about, but for some reason , I felt a little nervous that anyone could walk into my room after coming right thru the door. Call me psychic or whatever you want to call me, but at 5 AM, I woke up to a plump man with a snow hat on sitting in the chair next to my bed...I tried to focus to see who could it possibly be...I said 'who are you?' He said nothing. I said 'You are in the wrong room'. He got up and walked out without saying anything.

I called the nurse, and she ran and called Security. She said that security told her that he was meant to be on another floor...The whole thing was very odd - How could this man be sitting next to me and not knowing that I WASN'T his relative....Security asked me for a description, and I asked the staff what could they do to make me feel more secure. They decided to put a sign on my door DO NOT ENTER - Please see the nurse's station.  Crazy stuff!

The doctors visited me, and said that I could leave on Friday if I wanted to. Dr. Fosnot gave me strict orders for home - no lifting, pushing, pulling, bending, no housework - I said to him "That's music to my ears - I hate housework".

After the strange man incident, I took them up on their offer and left Friday at 5:00 PM. My back was breaking from their bed, and I was anxious to lay in my own bed.

I'm home now and thankful for the help that I'm receiving from my sisters and friends.
I am very uncomfortable with the drains since the tubes are wrapped around the new breast digging into your body. I go on Thursday down to Penn to have 2 of the drains removed. I don't feel like I can begin to heal until all of these drains are out.

Yesterday, Dr. Sabol called to tell me that the tumor was 3.8 cms with negative margins and negative lymph nodes which is GREAT news. They are sending off my tissue to California in order to receive an oncotype score of my tumor. At that time, this number will suggest to me if I need chemo or radiation.

Hope NOT!
The moral of this week's story is to do your due diligence so that when you go into surgery , you can feel safe with the doctors performing the procedure. It won't take away all of the fear, but it really helps a lot!

Here is a picture of my stomach incision (which goes from side to side) and also my new belly button.
When they sew the two ends of skin, the belly button gets absorbed, so they need to put it back in place. You can also see 2 of the 4 drains - So far, the worst part of this recovery is the drains tugging at your body and feeling the drains inside your body. I can't wait til I get the first 2 drains out tomorrow.



Recovery - The Good, The Bad, and The Ugly!
Well, I've been home now for a week, and it is Day 13 since the day of surgery.

I will say that the first week of surgery seems to be the easiest part of this ordeal. Even though you are hooked up to IVs, catheter, attended to hourly, drain cleaning every few hours, shots, somehow it is all expected as you lay (lie - ?? who knows?!) there helplessly.

Then you go home. I was happy to see my son, kitties and my adjustable Tempur-Pedic bed. I have thought over the years that this adjustable was a complete waste of money, but it really helped out with this operation. I am able to lift my legs real high and put the head down a bit - the only time that I feel nothing pinching or tugging me is when I'm in this bed.

My friend Anita was kind enough to bring me home from the hospital - the drive home from the hospital was the most pain that I had felt since the car is stopping and going pulling on the stomach incision. I should have planned it during a non-rush hour time but live and learn.

I've been treated very well by my sisters Diane and Linda, family and friends. My sisters have been there for me every. step. of. the. way.  My friend Kathy was kind enough to come here from Maryland to take care of me and cook for me. Also food from Laura, Debbie, Nancy, Louise and Anita! Flowers, cards, cookies, food and visits have helped to boost my spirits and distract me. I'm very lucky to have all of you in my life!!! Thanks to all of you!!!!

The visiting nurses start coming to your house to take your blood pressure and listen to your lungs.
Since this impacted my right side, I am not able to take deep breaths which is concerning me. As part of this that I mentioned before is that the doctors take a part of rib to clear the way for blood vessels in reconstruction. I think that this is making an impact on my breathing. I cannot stand up straight yet, and when I walk, I am hunched a bit since that 3-4 inches of skin removed from stomach has tightened my stomach to the point that I can't stand up straight.

I tell my story to each visiting nurse, and they are shocked. Even the visiting nurses think that a mammogram shows all cancer...so we have all been misled. Some friends of mine are now demanding an MRI because of what just happened to me.

Believe it or not, I still think that there are people out there thinking that maybe this had something to do with me or my doctors. It's people's way of making themselves thinking that it won't happen to them since they do everything right (self protection!)  - LET ME ASSURE YOU - I never miss my annual exam or annual mammogram! Not all cancer shows on a mammogram or ultrasound! It seems breast cancer has a 'way' of presenting itself by type, but not all breast cancer behaves the exact way it should in order for you to find it. My cancer usually shows as a cluster of calcifications which prompts radiologists to ask for biopsy. There is NO ONE THING to detect breast cancer - after this experience, you need a mammogram, self exams, doctor exams and a MRI every couple of years if you want to be certain that you don't have cancer.

Two weeks tomorrow - they say that this is an 8 - week recovery which seems pretty far-fetched at this point. I cannot see going  back to work in 6 weeks when I cannot breathe properly or walk properly.
As I write this, I am being pinched at the opening of the drain. This has been really bothering me over the past 5 days. I guess the 8-week recovery is standard but is adjusted according to age and condition.
I guess I will find out!

No one seems to have a solution for the drain pain - basically you have to deal with it until they remove all of the drains. I had surgery February 5th - At least one drain is coming out tomorrow 2/19. Another one on 2/22. And then maybe another the following week - so you are looking at around 3 weeks of drains. I don't feel like I can begin to heal or do anything until these drains are out. Anita bought me velcro pockets that you attach to the inside of your button-down shirts or zip-up hoodies that keep the drain in the pocket, so that you can avoid wearing the velcro belt. I do believe that this is helping the awkwardness and pain of these drains.

I'm not looking forward to having the 2nd breast drain out tomorrow. It's not fun getting the drain removed. The nurse tells you to breathe in (for a distraction) and then let it out - then she literally rips the drain out of your body. Mind you, she is ripping it out around the inflamed tissue in your breast.
As soon as she rips it out, it stings like crazy for about 5 minutes.
So far, the worst part of this whole thing is the drains!

My newly-formed breast is very black and blue - a few spots have blistered. I can't see much through the black and blue. The new tissue feels like a rock inside of you. The nurse said that as the inflammation goes down, the tissue will become softer. It is very swollen and the tissue is falling into my armpit. Obviously, the new breast is sitting much higher than the other one. They said that over the next few months, it will loosen up and fall more to look like the other one. Then, supposedly in 9 months, they tweak it so that it looks great. It would have to look pretty lopsided for me to go through any more surgery.

As I'm writing this, the drains keep tugging and hurting at the openings...annoying!

Right now my day consists of getting up at 6 AM with my kitties, drinking my coffee and by noon, I'm ready for a nap. I'm going to bed early since the drain pain is minimized in bed.

It will be 2 weeks tomorrow, and I would say that I feel about 35% of what I was.

Thanks to everyone who is making this experience a little lighter for me!

The moral of this week's story is that infamous line that we always hear - "it gets worse before it gets better". Hopefully, this week's pain will be gone by this time next week.

Three Weeks Since Surgery

I was blessed again this week to receive more flowers, visits, gifts and food thanks to Jodi, Sharon, Karen and Peggy.

I feel that I'm at about 50% at this 3 week mark. I have even started making dinners each night, so that's a clear sign that I'm feeling better.

I'm happy to report that the uncomfortable annoyances of the breast drains are now over. I had the breast drain removed last week and one of the stomach drains removed.

I have been making appointments to remove the drains, but unless the drain is accumulating 30 ML's or less, I cannot remove the drain. Because of this, the drain removal is not happening as soon as I like. I'm still carrying around the last drain for the stomach - will this ever stop filling up?! UGH!

I can honestly say that my life has improved greatly after the breast drains were all removed. Instantly, everything was a little easier - sitting, standing and sleeping! The stomach drains, for some reason, are not as bothersome.

Showering was a huge effort in the beginning since you and your 4 drains are all going into the shower. The drains are secured using a velcro belt, and you also need a shower chair, more so in the early days home. The velcro belt is soaked after the shower, so you must then transfer each drain to a 'dry' belt each time you shower. Days after surgery, you are encouraged to shower every other day, since it does take a lot of energy for this task, and you are feeling exhausted for weeks after surgery.

Thankfully, I prepared my recovery wardrobe ahead of surgery with the help of Anita. Due to the long stomach incision and stomach drains,  loose, drawstring pants are your only option. Button down shirts or zip-up hoodies are a necessity for ease of dressing and easy access to the breast drains.

Today, I had my first follow-up visit with the breast surgeon, Dr. Jennifer Sabol. My newly-created breast still has a lot of blistering/scabbing. I cannot even see my nipple at this point due to the scabbing. Dr. Sabol said that the nipple should be okay, but it would probably not project the way that it normally does. It's still too early to tell, but if it doesn't, I may have to get some reconstruction on my nipple to fix it up a bit. I will find out more about this all when I meet the plastic surgeon next week.

The blistering/scabbing seems to shrink a tad each day, but this may take a while.

My spirits have been high - I'm not sure if this will continue, but I don't seem to be down at all about all of this at least as of yet.

The moral of this week's story is that 'there is a  light at the end of the tunnel'. Drains are almost completely gone, where I can then begin driving and moving forward in re-conditioning my body with walking.

4 Weeks Since Surgery - Last drain came out yesterday!



I took this picture at the doctor's office yesterday right before my last drain came out. As you can see, the incision is healing nicely along with the new belly button. This was my first plastic surgeon appointment since my surgery 4 weeks ago.

Visits and food again this week from my brother Rob, my niece Jessica and my friend Joseph!

I feel free again now that all drains are gone! It seemed like I had these longer than 4 weeks. At 4 weeks post op, I feel that I'm 75% of what I was.  I've started to walk slowly on the treadmill about 15 minutes a day, very slowly just to get my blood flowing. I'm not allowed to exercise for 8 weeks, but walking slowly is permitted.

The surgeon said that this incision looked great, but the breast was another story. It is still very inflamed or 'angry' as the doctor words it. I still have a lot of scabbing, inflammation, and the nipple is still hiding under all of this. Dr. Fosnot said that I had edema in the new breast, and that I need to massage it with lotion to try and loosen this up. Dr. Fosnot mentioned that in retrospect that he would not have saved my nipple. He said that the shape of my new breast was good, and once the breast healed, that it should fall a bit to match the other side. As far as more surgeries, that is decided at a later date.

My brother John was kind enough to bring me to my appointment yesterday. While we were sitting in the waiting room, we met a young girl, only 25 years old, who had the worst kind of breast cancer with no history in her family. She was so strong and had just gone through 16 rounds of chemo - She was at the surgeon to fill the saline implants. It just broke my heart - no girl should have to go through this at such a young age.

I am so grateful for the type of cancer that I have. Everything could have been much worse.

I don't know if they will suggest chemo to me after the Oncotype score comes back, but I don't know if I would do it. I am still waiting for that score. I am just very lucky so far with the characteristics of this breast cancer except for the size of my tumor.

The moral of this week's story is that 'things can always be worse'. I am so grateful, and this all could have been so much worse.

Week 6 since Surgery - Just When I thought that the coast was clear!
I'm standing by what I said in the last post - I am still grateful, and yes, this all could have been so much worse.

Although, this has definitely been a difficult past few weeks. I called to get my Oncotype score, and apparently, it slipped through the cracks. It was in, but somehow it got missed. Dr. Sabol called me to tell me that my score was a 32 at the beginning of the high range. High Range is from 26-100, although it seems that only rarely does someone go over 60.

She went on to explain that it made a little be more sense of this tumor which seemed to show up out of nowhere. So I said, "Well you told me that this was there approximately 6 - 8 years - are you saying that it is more aggressive than you thought?" She replied saying that she thinks it may have been more active that we thought. My heart sank once again. She then went on to say that Chemotherapy is recommended for scores in the high range. She asked me to call the oncologist - I had thought about going to Dr. Christine Szarka at Paoli Hospital due to her great reviews. I hung up pretty quickly.

And this was the FIRST time that I actually started to cry. I spoke to a few people, and it was hard for me to not break whilst talking (I love the way that the British use this word!).

I thought about the possibility of chemo all day, picturing myself bald - How could I do it?! I've been playing with my hair since I was a baby. I had a huge bald spot as a baby, since I constantly tugged at my hair til I made myself bald. Over the years, I've twisted, pulled,  and tugged at my hair every day. When I changed jobs after 12 years, my hair started falling out back in 1995 - I was scared to death, but it never happened. I have a lot of hair, so it wasn't noticeable, and it stopped in a few months. Here we go again.

I chatted with everyone about it, consulted Elena and Joe, and I had pretty much convinced myself that I was not going to do chemo and THEN...there was another surprise!

I went to Dr. Szarka, oncologist, along with my friends Anita and Debbie. They recorded the conversations and took great notes. As soon as I sat down, I asked if she thought that this was there 6-8 years, and she gasped. She said this wasn't there that long. I said well if it is a grade 2 (intermediate growth), then how could it be less than 6 years.. She said 'Oh it's not a grade 2, it's a grade 3 - aggressive)

I was blindsided!

Apparently, when the pathology report came back after surgery, it was determined that this is actually a Grade 3 (aggressive) tumor. No one told me this. I was only told 2 weeks after surgery that I had clear margins and no lymph nodes involved - no mention of Grade 3!

I am wondering why the surgeon did not tell me this. A part of me thinks that they step you through this process so you can handle it. I did not call her to ask her this. I am not happy about this.

Anyway, Dr. Szarka explained everything in detail, and of course, she recommended 4 rounds of chemo. I told her all of my concerns, but they are worrying about a stray cell that could be out there. Breast Cancer can travel to the lungs, brain, liver or bones. This is what they are concerned with.

Once someone explains all of this to you, it is very difficult to go against the grain. All you think is if I don't do this and I'm wrong?! You know what that means!

I have made a few more appointments with oncologists over the next 2 weeks. I'm also inquiring about oncologists that use Cold Cap during chemo sessions that keep a lot of hair on your head.

The moral of this story is that cancer seems to be always throwing something new at you - Even when I thought I was in the clear, more data surfaced to create more appointments, treatments and fear. Stay Guarded.

9 weeks since Surgery - It's that time again!

I still can't believe that I need to get chemo! I was really hoping to get out of this life without ever having to do this. Hopefully, the Cold Cap Therapy works and makes this experience a whole lot easier.

I met up with an oncologist at Lankenau Medical Center, Dr. Zonera Ali. She told me that she agreed with Dr. Szarka on the treatment of Taxotere and Cytoxan (TC). She said that this is the protocol for this type of cancer and Oncotype score. I asked her if the University of Penn would do anything differently, and she said that Penn would prescribe the exact same treatment due to my Estrogen Positive, Progesterone positive and Her negative Invasive Ductal Carcinoma. They compared it to a cookbook - this is the recipe for this exact type of cancer.

I did also ask Dr. Ali what her guess was as to how long this tumor (now that we know it's aggressive) was in my body. She said she thought it was only there a year! So I want to point out once again that the mammogram did NOT show my cancer then at least June 2018 and January 2019. I know that it was there from at least last spring since I noticed something different about the tissue in that same area, but once I got the mammogram in June and all was good that it was supposedly nothing.

Dr. Ali said that deciding on chemotherapy has changed a lot since the creation of the Oncotype score. Everything is dependent on the Oncotype score! My cancer was not in the lymph nodes, but my Oncotype score was 32 and in the high range. High range is 26 - 100. If your number is 26 or over, chemotherapy is recommended. It doesn't matter if the cancer is in the lymph nodes or not! It is disappointing since once I heard it was not in my lymph nodes, I thought that I escaped chemotherapy.

I decided to do this closer to home, and I met with Dr. Szarka to arrange the schedule. I begin during the week of April 22nd. It is one day every 3 weeks for 4 rounds. I need to get a Port procedure within the week for the chemo drip.

I've always seen pictures of women sitting in chemo chairs getting the 'drip' - I can't believe that this will be happening to me. UGH!

I also visited the plastic surgeon last week. All looks well except for some needed healing still to the breast. There is also a 'dead' spot in the newly-created breast that will need to come out since the blood flow did not flow properly to this spot. The nipple is still uneventful, but he said that he can do something to it to make it more pronounced. The 'dog ears' on my hips from the stomach surgery can also be smoothed out. All of these fixes can be grouped into one surgery after chemo is finished and blood cell counts are good. Thankfully, this can be done as outpatient.

Cold Cap Therapy- Attempting to save my hair from Chemo!

I have been doing lots of research on this Cold Capping therapy. This therapy began in the UK by a man with the last name of Paxman. His wife was undergoing chemotherapy and lost all of her hair. After seeing the psychological and physical effects of his wife losing her hair, he decided to invent a cold cap that is hooked up to a machine, delivering sub-zero temperatures to the cap on the patient's head and increasing the chances of a woman keeping some, most or all of the hair on her head.

Sub-Zero temperatures, and we're talking -35 degrees Fahrenheit here, spares the hair follicle keeping the chemo drugs at bay whilst placing the follicle into a lower metabolic state.

This process has been used in Europe for over 40 years. It was recently approved by the FDA here in 2016.

The Paxman machine has been installed into a large number of US Hospitals to date. Unfortunately, there is only Harrisburg, Lancaster or Lehigh Valley in this area that house the machine.

If a patient does not have access to the Paxman machine at a hospital, they have the option to do the Manual Cold Capping using one of the companies out there. I joined the Chemo Cold Cappers Support Group on Facebook, and this group offers a wealth of information from the actual users of Paxman cold caps or the Manual cold caps. The Paxman website is found at: www.paxmanscalpcooling.com

There are no guarantees in doing this. Some people lose 20, 30, 40 percent of their hair and some people lose 90% of their hair. I realize that this may not work, but I want to at least make the effort.

The Paxman cold caps seem to be way cheaper since you are only buying a cap to be used at a hospital machine (as far as I know). The Manual Cold Caps are offered for rental fees of approximately $400 - $500 a month with a security deposit of $400.

There is some talk about some insurance companies covering parts of this. I don't know the answer to this as of yet, but I will be calling my insurance company next week. There is also a place HairToStay.org that can help patients who meet certain income levels.

There are a number of Manual Cold Cap companies such as Penguin, Dignicap, Arctic, and Wish to name a few.

After talking with manual cold cap users, I'm hearing that Penguin Cold Caps (UK) are the best out there. Their site is found at: www.penguincoldcaps.com

I have ordered my Penguin cold caps and expect these to arrive by the end of the week.

I will continue the Cold Capping blog on a separate post, since I want to list all of the websites and products needed for Cold Capping.

I will also create a separate post for the Chemo process. I'm not nervous yet, but not sure how I will react on the first day. Please keep me in your prayers! thanks!

The moral of this week's story is that we are all stronger than we think when we are faced with challenges like this. I never dreamed that I could handle the challenges so far, and I'm really not  sure how I will deal with chemotherapy side effects or losing my hair if cold capping doesn't help. I hope that I can do it!

Once again, I was surprised with flowers, this time from my high school friend, Bridget. I had not spoken to Bridget in a long time, and it was such a surprise and so thoughtful of her.

I created a new blog post below where I'll continue to blog on this journey. Please click on below link.

Chemo Starting YIKES!
























4 comments:

  1. Your doing great. Chin up try to stay positive. Thanks for sharing this valuable info for others who may be facing a similar situation. You're very brave. I'm praying for you and I hope you feel better soon.

    ReplyDelete
  2. Thank you for your kind words!

    ReplyDelete
  3. Your attitude is awesome. Gratitude is an amazing soul lifter. So happy to hear you're feeling better.

    Don

    ReplyDelete

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