Mediport and More Recovery

I was scheduled for Tuesday March 26th for the installment of my Mediport. It sounds like I made an appointment for the cable guy to come install a new receiver... but this was pretty much what it was!

What is a Mediport?

A Mediport is a catheter that is inserted under the skin, just below the collarbone usually, that goes
directly into the venous system and can be easily accessed from the outside without inserting a needle into a vein.  I like to compare it to a USB Port.  I needed a Mediport to receive chemotherapy treatments through, but it can be used for anything that you would normally use a needle or IV for.  If I get sick again and end up in the hospital, the nurses won't have to install an IV into my hand, they will be able to administer blood, fluid, and medicines through my Mediport. 

Since the Mediport is installed under the skin, it was scheduled as another surgery at ECMC.  I had to fast after midnight and be at the hospital by 6.  It took awhile to get checked in and brought back but once I was all set, around 7, I was just hanging in my trendy hospital gown until Dr Lindfield arrived to do the surgery.  This surgery was no sweat. They were going to cut an incision in my chest, right below my collarbone, install the Mediport, fish the catheter into precisely the right place near my heart, and then sew me back up again. I was told it would be about an hour under anesthetic and the recovery would just be a dull soreness for a few days.  I was scheduled to see Dr Burke later that day downstairs in his offices which are also at ECMC so he could take out the stitches in my chest.  Since Dr Lindfield was already there, I asked her to take out the stitches while she has me under. 

Surgery Time

About 8:00 Dr Lindfield arrived at the hospital, along with every other doctor scheduled for the OR that day, so as soon as a room was available, we were ready to go.  I don't recall the bed ride from the pre-op room to the operating room this time. Before we went, the anesthesiologist gave me a shot of something. It didn't knock me out but it did make me focus on stupid things and talk about them incessantly... like the one doctor who looked to be in her 50's and was walking around with a white blouse and a black bra on under it. For some reason I couldn't stop talking about this, although I don't remember what I said. Maybe this is why I don't remember the ride to the operating room. I just remember waking up.

Post-Op Ramblings

When I woke up from surgery, I remember a nurse staring at me and saying "Good, your eyes are open. I'll go get your husband".  So I figured I had just woken up.  Then when Rory came back to sit with me, he told me the nurse said I was a chatty cathy when I first came out.  Before surgery I commented on how much the nurse looked like one of my old friends, Michelle. Apparently when I came out of surgery, I was convinced she WAS my old friend Michelle and she was very eager for me to come to completely to so she could get away and make me Rory's problem. Whoops. I wonder what I said?  That's a conversation I wish I heard!

Rory advised me that when Dr Lindfield went to remove the chest stitches, the skin opened right back up again, so she had to restitch me all up and I would have to come back at another time for Dr. Burke to remove the second set of stitches.  This didn't bother me so much because I was in no hurry to show off my flat chest to anyone.  Those stitches could stay forever for all I care... except they kept poking through all my shirt.  The last time I had stitches it was a thin clear string that dissolved on its own. This stuff was quite different.  It was thick, blue, and wire-like.  If it was fishing line, it would be 100 pound test that you caught walleye with! And it was sharp on the edges and poked through every shirt and nightgown I owned. This part was a bummer.

Dr. Lindfield said the Mediport installation went fine and I could start using it for treatments immediately. My first chemo treatment was scheduled for one week so I would be good to go!

My Mediport in my left shoulder

Recovering from Surgery

The Mediport surgery was supposedly the easiest, shortest surgery I had had yet.  I got there at 6 am and I was home by 10:30 am.  Everything I ate still made me nauseous so I on our way home from the hospital, I gave my husband those puppy dog eyes and asked for McDonald's... the only food that my stomach welcomed.  One cheeseburger extra pickle and one small fry... and I was good for the day!

I was expecting to start work 2 days after having my Mediport installed. That was not in the cards.  When I had my first 2 mastectomies I found that even though overall I was sore, the incision sites were all numb for the past 2 weeks.  Apparently the numbness wore off.  I started to feel every single hole in my chest.  I could feel the skin stretching from the new stitches.  I was starting to feel pectoral pain... as I was going out more, I had to open doors, push grocery carts, and carry my purse. It felt like most of my chest muscles were gone.  I would struggle to open the door for myself at Kohl's. Yes, I realize how pathetic that is.  When I would force it, I would feel the skin pulling across my chest. 

What's worse, I could feel the Mediport.  If you have ever been punched in the collarbone this is what it felt like.  The doctor told me it would be a dull achy pain for a few days.  This was dull but it built up.  It was too strong to ignore. It was the kind of pain that didn't get acute, but it didn't dull either. And there was nothing you could do about it.  You just want to sit there and cry because there is nothing else you can do.  What I learned is that it doesn't go away after a day or two. I am sure it will go away eventually.  I am on my 6th day with the Mediport now and the pain has not lessened.  I wonder if it was installed incorrectly? Or maybe my threshold for pain is much lower than I always thought it was.  Maybe my threshold for pain is being slowly worn down. Either way, if it is me, I am going to be in trouble on April 2nd when I go for my first chemo treatment. The thought of them tapping anything to my port terrifies me.

Not So Smooth Sailing

The Friday before having my Mediport installed I was cleared to drive.  I took Friday afternoon and went to my doctors appointments, treated myself to lunch, and went to Kohls to spend my Kohls Cash. Halfway through my outing, I started to get a stiff neck and struggled to move it side to side... so I headed home. The rest of the day I had a hot pad on my neck. I figured I pulled my neck while trying to open the door to Kohls... I did struggle to get it open.  Stiff necks go away.  When I woke up Saturday it was worse. It wasn't stiff so much, but there was pressure. It was as if there was a bolt in the back of my skull drilled through the bones behind my ears. And there was a level on that bolt, and as soon as the air bubble on that level was not level, I would feel intense pain, pressure, and dizziness. So I couldn't look down, if I bent down, I had to keep my head perpendicular to the ground. This didn't go away at all on Saturday. It didn't go away on Sunday even after an emergency chiropractor appointment.  I saw my Grandmother on Monday, who also knows chiropractic, and she 'fixed it' as well. It didn't go away Tuesday or Wednesday. I saw a massage therapist Thursday who helped it for a little while, but come Friday it was back.  It is much less acute than it was a week ago, but it is still debilitating.

The increased chest pain, Mediport pain, plus head pressure made it nearly impossible to go to work.  Any road trips I took had to be limited to 3 hours or less because I was becoming more dependent on pain medication.  I am truly perplexed as to why my recovery has gotten worse and not better over the past 3 weeks. 

Preparing to Return to Work

I have given myself a firm 'return to work' date of Monday April 1st. This is necessary because I am out of money. We have always been a week-to-week type of household.  This has always served us well, until I got cancer. Week-to-week is a death sentence for the rest of your family when you have cancer. I HAVE to go back to work. NYS disability will pay you half of your normal weekly wages, not to exceed $175.  Nobody can live on $175 a week. $175 a week will not cover my copays for the week, let alone food, bills, mortgage, my kid's dance lessons, lunches for the kids, plus the mounting medical bills. NYS disability is a joke.

Here I type, the night before I return to work, terrified.  I am scared that I am not going to be able to focus with all the pain killers in me. I am afraid I am going to start crying at work because I am still in so much pain.  I am scared that I will go back to work for a day, then start chemo and be too sick to return back to work.  Luckily my employer is very flexible and has allowed me to work from home as needed.  This is my only hope and the only reason I am able to muster up the confidence to go to work tomorrow.

For the first time since I got my cancer diagnosis, I am scared.

So What Happens Next

Initial Pathology Results - Dr. Lindfield

Monday March 18th was the day that I got to go in and see Dr. Lindfield, my breast surgeon, and find out what they found. If you recall, part of my mastectomy was a Sentinel Lymph Node biopsy. This was done to determine if the cancer had spread into my lymphatic system. If it had, there was a good chance for recurrence of the breast cancer or for the cancer to show up in a different part of my body.

I brought my entertainment entourage with me again to Dr. Lindfields office.  I didn't meet with Dr. Lindfield, instead I met with her associate who I just learned was in surgery with her. I never met him before, but my family did because he was the one who came out to tell them that the mastectomy portion of the first surgery was completed.  He reviewed my results with us. He stated that on the right side, 17 lymph nodes were removed and 2 were found to be cancerous. On the left, 3 lymph nodes were removed and none were found to be cancerous. He said it was highly likely that I would have suffered some nerve pain on my right arm due to the number of lymph nodes that were removed (Duh) and that down the road, Lymphedema was a possibility. Lymphedema is the process of the arm swelling, sometimes permanently, well beyond its normal size. The purpose of the lymph nodes is to absorb and move bodily fluids. With 17 lymph nodes missing, my right arm's ability to push fluids out of the extremity and back into the main flow of my body would be severely compromised, so Lymphedema is something we will need to watch out for going forward. 

The doctor also said that since there were cancerous lymph nodes, I would probably need chemotherapy.  He said that even though most of my breast tissue was gone, there was still about 5% of it left and the chance for recurrence was high. Beyond that, I was going to need to meet with my oncologist (Dr. Dougherty) to find out more about chemo.  Good thing my appoinment with Dougherty was tomorrow.

Since I was going to need chemotherapy, I was going to need a mediport. A mediport is a catheter that is installed directly into your veinous system, usually below your collarbone, with a port visible to the outside. It is through this port that chemotherapy will be administered.  Dr Lindfield's office wanted to make an appointment right then to get the mediport installed into me. I like to think of it as my very own HDMI port! Unfortunately, putting in a mediport was a surgical procedure, one that I would need to be anesticized for, so I was going back to the operating room at ECMC.  The doctor had no idea when Dr. Dougherty would begin chemotherapy but wanted to get me on the schedule for the mediport anyway. So before I left the office, I was given an appointment date of next Tuesday, March 26th, to be back at ECMC at 6am sharp for surgery. I was told it would be a quick surgery though and I should expect to go in around 8am and be out by 9.  This would not be so bad.

The Treatment - Dr Dougherty

On Tuesday we saw Dr. Dougherty. We remembered the 3 hour wait we had to see him the first time, so as soon as we were shown to the patient room we geared up for the 2nd Doctors Office Olympics! Since we polluted the office with wet cotton balls last time we were there, this time we decided to keep it easier to clean up.  First event was the ring toss.  In order to win this event, you had to toss the surgical tape from across the room and have it ring a pen that your partner was holding. Your partner was allowed to help by moving the pen to optimal position... Even so, nobody was able to get a ringer. This event was much harder than it looked!

Me Attempting the ring toss

Cathy attempting the ring toss

Rory attempting the ring toss

Ring toss action shot!

Event 2 was the Shelf Toss. Using the surgical tape rolls again, the object of this game was to toss the roll of tape across the room and have it land on top of the paper towel dispenser without it falling off. This game proved to be loud since you would have to use the wall as a backboard for the tape, so we put my shirt on top of the paper towel dispenser to dull the sound. Rory had proven to be the champion at this event by sticking the landing not once but twice!

Cathy attempts the shelf toss while Rory supervises

Shelf Toss action shot

After not that long of a wait, Dr. Dougherty came in to see us. We had such a short wait, we only had time for 2 events! What Dougherty had to say was not that positive.  He gave us some conflicting information than what we got yesterday at Dr. Lindfield's.  He said 18 lymph nodes on the right were taken and 2 were cancerous (as opposed to the 17 that Lindfield told us about). In addition he said that 3 lymph nodes were taken on the left but 1 of them was cancerous (Dr. Lindfield said none were cancerous on the left). 

Even more, he said that the full biopsy that was conducted on the tumors themselves found that there was a second cancer on the left side that they didn't know about. The right side contained 2 tumors that were Invasive Ductile Carcinoma. The 2 tumors on the left side were Invasive Lobular Carcinoma.  The statistics of a woman between the ages of 35 and 44 getting breast cancer is 10%. I fell in there. The probability of a DIEP flap failure is 4%. I fell in there. Now the probability of getting 2 different types of breast cancer at the same time is I don't know, but I tell you, I felt pretty special. Given the statistics I was looking at, I was breaking some kind of mathematical record! There was just no way I WASN'T winning the PowerBall drawing this week! (Spoiler alert - somehow, I didn't win?)  So since yesterday I had learned that I had lymphatic filtration on the right AND the left side AND I had a second type of cancer. This meant chemotherapy for sure. In addition, Dr Dougherty was thinking of radiation on the lymphatic system. Grrr.

Dr. Dougherty told me that without chemotherapy, I had better than a coin flip chance of getting cancer again.  This is why I needed chemotherapy. When chemo was half done, he would do some blood work and decide if I needed radiation too.  If I did, he would do one month of radiation when chemo is over.  With chemotherapy, I have a less than 10% chance of recurrence. These are good odds. So I asked Dougherty how I will know if I am cured and he promptly answered "You will know you are cured when you die of something else".  "When will I know if I am cured" and again he said "you will find out that you are cured when you die of something else!"  We found this so funny that so help me God when I am on my death bed in my 80's dying of old age, I am going to call all my friends and say "Good news! I am cured of cancer!"  (Mark my words, I will do it!)

Dr. Dougherty reiterated that I would need a Mediport.  He said the Mediport was necessary because if they were to deliver chemotherapy through a needle into a vein in my arm, the vein would disintegrate and burn out.  Chemotherapy is that strong. So instead they want to deliver the chemo through a catheter that goes straight to my heart. Ummmm, that's not the logic I would have followed and frankly it scared the shit out of me, but hey, these guys have been doing this for 20+ years. I guess I will trust him.

So we will start chemotherapy on Tuesday April 2nd. Chemo will consist of two 8 week periods and I will get chemo treatments every 2 weeks.  The first set of chemo will be two different drugs - Adriamycin (Doxorubicin) and Cyclophosphamide (Cytoxan).  The 2 drugs will be mixed together along with an anti nausea concoction and some steriods and delivered through the mediport for about 2 hours.  The day following each chemo treatment, I need to go back to the office for a shot of Neulasta. The Neulasta is meant to increase white blood cell counts quickly to prevent the decreased immunity that usually accompanies chemotherapy.

The 2nd set of chemotherapy will be a drug called Taxol (Paclitaxel).  I will get the Paxol every 2 weeks for 8 weeks. When the Taxol is done, then I get to look forward to radiation. I don't know how that will work, and hopefully I won't have to find out. 

According to my schedule, that means I will be going through chemotherapy through the end of July. Dr. Dougherty assured me that I would in fact lose my hair. That was sad. I was slightly excited to think I wouldn't have to shave for awhile, but then he said not to get excited, it is usually just the hair on your head that falls out... where is the bright spot here? 

So we left Dougherty's office feeling deflated. I was going to need 16 weeks of chemotherapy and maybe radiation. I was going to lose my hair. I was not likely to lose weight (Thanks to the steriods they mix in with the concoction).  I have worked really hard to find a bright spot along every step of this journey, but this one was pretty hard.... oh wait ... I get to pick out a wig!  This is going to be a blast!

 

The Boob Setback

On Wednesday I had my follow up with Dr Burke. He was set to remove all my stitches, my ab drains, and schedule me for the next attempt to put in breast expanders, which was the first step towards silicon implants. 



The portion of the ab drain that was inside my body

 

 

 

 



As it turned out, the breast stitches being a week old were not ready to come out yet. He told me to ask Dr. Lindfield to take them out while she is installing my Mediport next week.  He did remove my ab drains, which was much less painful than the chest drain removal was.  When Dr. Burke's nurse removed my chest drains last Friday, it felt like the portion of the drain that was inside me was wrapped up in nerves so when she yanked it out through the small hole in my armpit, it felt like she took all the nerves with it. I actually cried. And then I would have horrific visions of the pain I would endure when they took out my ab drains. I had been hating this drains, but dreading them coming out for almost a week.  Much to my surprise, my nerves were not as raw in my abs and it was virtually painless. 

Dr Burke asked me if I had received my pathology results yet and I told him I did. I shared the news about chemo and radiation. Dr Burke looked very upset now. I do remember him telling me this, but the news of my possible radiation was bad news for a plastic surgeon. Radiation will for sure mess with implants and expanders. In fact, it would have messed with my DIEP transplanted boobs too.  Now that we know that radiation is a possibility, Dr. Burke does not want to continue with reconstruction until radiation is over or I know for sure that I won't be getting radiation.  If I do get radiation, Dr. Burke won't begin reconstruction until 2 to 3 months after radiation is over. So assuming I will need radiation, which will come after chemotherapy, and then I need to wait 2-3 months, we are looking at beginning boob reconstruction again in December!  DECEMBER!!!!! And the expanders are just phase 1.  I am going to be flat chested for almost a year. 

This is a very sad week. I am going to be bald and flat for quite a while.  Oh well. I didn't really like my boobs anymore anyway and my hair is kind of gross.  Wig shopping is going to be a ball and before my hair falls out, I want to get a really wild hairdo! I will make this fun if it kills me!


Return to Home Life

I had 4 days at home to recover from my two mastectomies before the doctor's appointments started kicking in. 

Living at Home with No Boobies

I was really nervous about coming home from the hospital.  There were some things in the hospital that I felt I really needed to make it through this. An adjustable bed for one. Getting in and out of my queen sized but very tall bed proved to be a challenge.  Not only was it hard to literally climb into bed, but getting from a seated position, to a lying down position and then back again was damn near impossible.  And the best part was that I needed to do it all too much.  I was still swollen like crazy so I had to go to the bathroom at least 3 times a night. Every 4 hours, like clockwork, I would wake up out of a sound sleep because my body knew it was time for a Loritab. A Loritab meant drinking more water and that meant going to the bathroom more.  Luckily for me, before I had to get into bed the first night, my Grandmother brought me a bed wedge which would keep me at a 45 degree angle and make it much easier to get up and down. Climbing onto the bed though... well, there was no cure for that, I was going to have to sweat it out.

I also had to get used to living with surgical drains.  Drains suck. They smell, they are full of blood which looks gross, and they are dead weight hanging from open holes in your body.  In the hospital I was able to clip them to my nightgowns. At home, I was wearing normal clothes. I needed something to do with these drains. My husband took binder clips and dissected them. Then he reassembled them as extentions to my surgical drains. This allowed me to clip them to most clothes but usually I connected them to one of many Ingram Micro lanyards we had lying around.  The ab drains were not so easy. I would connect them to my waist but they were most comfortable when I put them in my pants pockets. And that way there were not visible either... except that one time that they burst open in the pocket of my pink chino pants... that was not attractive. I gag just remembering it. 

Showering with drains really really sucked. I would attach all 4 to a lanyard which kept them from pulling on my skin but got in the way of everything I was trying to do in there.  In addition to the inconvenience of having to wash around drains and tubes, washing your hair when you have major chest trauma is all but impossible.  I couldn't raise my arms above chest level, so to wash my hair, I would bend over and hang my head. That's how I would wash, rinse, and condition my hair for weeks to come.  Because of my ab scars, pivoting to reach things was very hard as well. My normal 8 minute shower would be a 20 minute shower from this point on.  I can't remember a time where I had hot water to spare when I was done with my shower.  But even with this inconvenience... it felt so good to be able to shower again!

Clothes

I am very happy to say that all my pants are now a little bigger on me. Thanks to the failed DIEP flap transplant, I got a perfectly tummy tuck! So that one size bigger I had in every pair of pants I owned for my martini rolls was no longer needed! My stomach was super flat and I was super happy! I still have a big butt and big thighs to keep it company, but I can only address one problem at a time, and as of right now, my gut was no longer a problem! All of a sudden I loved my one pair of yoga pants.  It helped that they were not tight, had no zippers, and could easily pull on and off. I would wear them just about every day here on in.  My shirts were another story.

Unfortunately my shirts were all a bit bigger on me too.  I was hoping to come home from the hospital sporting nice perky D's on my chest. Instead not only was I flat, but my chest was actually incaved a bit.  My chest was completely flat. All my tshirts that were V neck because crew necks would pull at my neck were no longer sufficient. All my V neck shirts now dipped below my chest line and showed off my new stitches.  Wearing a bra now would be a complete joke. Even the camisoles they sell have built in shelf bras.  I had to go buy tank tops to cover my stitches so I could wear my old shirts without showing off my neverending abyss of flat chest. It sounds depressing but it really wasn't that bad.  At first glance, my lack of boobies made me look thinner.  I liked that.

Diet and Vitamins

This was bad. This was very bad.  I have been touting the importance of my anti-cancer diet since my diagnosis in January. No sugar, no caffeine, no alcohol, no red meat, no fruit.  Mostly vegetables, organic chicken, turkey, and fish. While I was in the hospital I did not stick to diet. The crap they were serving in there was nowhere near an anti cancer diet. And even if it was, it was not edible. Me and my team (consisting of my Grandmother and Cathy) decided I should eat anything I could keep down which meant one salad, a quarter of a subway wrap, jello, and once a diet coke. Once I got home, there was a plethora of good, healthy things to eat but each one made me nauseous. The first full day back, my sister Jessie made one of my favorite diet dishes... sauteed chicken, red peppers, and ginger over rice. I ate it for dinner and it was awesome.  The next afternoon, I went to have leftovers before my doctor appointment and no sooner did it go down did it come back up again.  From that point on, the taste of chicken makes me sick. What the heck?  So I ordered some of my favorite food in the world - Thai food! No way is this going to upset my stomach. I paid $30 to get a $12 dish delivered to me at home by Takeout Taxi. That's how important it was! Pad Khing Sod - chicken, brown rice, ginger, peppers, green beans, tofu, yum... I ate half of it and had to put the rest away as I was huddled over with stomach pains. This was not good. 

I was losing weight pretty fast, which was exciting, but it wasn't painless. I was starving.  After I got rid of my leftover chicken, I was on my way to Dr Burke's office to get my chest drains out. My sister's boyfriend was driving me and we were stuck at a red light on Genesee in front of the airport... right in front of McDonalds. I was still starving. We were 20 minutes early so I asked him to run through the drive thru real quick. One cheeseburger extra pickle with a small fry and a bottle of water.  I had to eat something! To my surprise (and horror) I was able to eat it all with no after effects. This was not going to be good.  Over the next few weeks, every time I was nauseous I found myself going to McD's for the same old thing - cheeseburger extra pickle and a small fry. That weight loss wouldn't be hanging around for long.  But what's worse, every time I see my Grandmother she says "And you are still on your diet right?"... "Yes Grandma, to a T... (except when I need to go to McDonalds and kill my liver)".  I feel terrible. I mean, I feel better and my stomach is settled, but my guilt is awful. And the scale has started creeping back up.  I have to work hard on making sure this is a temporary phase. 

Another part of the anti-cancer diet are the supplements. According to my Grandma, my system is filled with candida and other toxins.  I need to take 45 supplements 3 times a day to clear my system of these toxins so my cells will work properly again... something that will be very important if I need chemotherapy.  I was able to not take the supplements while I was in the hospital, but now that I am home, I had to get back on plan.  Taking 45 pills at a time was not that big a deal before. I did it proudly and I felt better when I took them. They didn't taste pleasant so I took them with polar seltzer instead of water to erase the taste.  When you have nausea no matter what you eat, swallowing down 45 pills was not going to be a picnic.  In addition, the carbonation from the polar seltzer would make me sick.  My stomach was much smaller now, both from a week of barely eating plus the removal of the extra skin and fat on my torso took away room for my stomach to expand.  Drinking 2 cups of seltzer water would expand my stomach to the point that it would push on my stitches. So Polar Setzer was out. I would try to take my supplements with plain water. Not only would they themselves fill up my stomach, but the taste and smell of them would make me gag.  I am a terrible patient. I can't follow the diet, I can't swallow the pills. I was hiding from the Grandmother the rest of my life.

Sarah helping me pack my supplements

Driving

I was unable to drive while I was on painkillers. Plus I couldn't put on a seatbelt because I was sporting a slew of stitched up wounds not only on my chest but on my abdomen.  My right arm sustained some pretty messed up nerve damage from when they pulled out 20 lymph nodes through my armpit. It felt like they pulled out half my nerves with it.  My husband moving the blankets next to me in bed would send shooting pains through my arm. As it turns out, operating a gear selector in the car takes quite a bit of arm and chest strength... strength that I had none of. So for the next 2 weeks, I was not driving anywhere. This was the biggest bummer of my whole disability period. 

After the 4 days I had to rest at home, every day going forward would be filled with doctors appointments, surgical post op checkups, physical therapy, massages, blood work appointments and trips to the drug store. Add in the usual - dance class for my daughter 2 times a week, Brandon's basketball games and practices, Sarah's softball practices, plus just helping Sarah keep up with her busy social life - and I was busy pretty much all day every day arranging for transportation for me and my children.  Living without the ability to drive absolutely sucked.  What sucked worse was  being at the mercy of everyone I knew with a car.  Once I had the ability to drive back again, life would be much simpler!

Tips for Packing for an Extended Hospital Stay

After spending 7 days in the hospital, and packing too much stuff that I didn't use, I thought I would write a post giving some advise for people who may not know the weird things they should bring to the hospital.

 

What Not To Bring

Nice Pajamas - The hospital provides you with ample nightgowns. They are ugly. They show off your butt. You can wear as many of them at one time as you would like (butt problem solved).  I brought brand new, lovely, warm and soft pajamas. I wore my favorite pair once while I was in the hospital. I had it on for a little over an hour before I puked on it. Guess what? The hospital doesn't do your laundry for you.  Unless you have someone there to take that puked covered nightgown home for you and wash it,  you will be smelling puke for the rest of your stay.

Stuffed Animals - This is a great idea. Soft, supportive, cute, and a bright spot in your hospital room, stuffed animals are a fantastic addition to your bed... unless you puke on them. If this happens, refer to my info about nice pajamas.  What's better is that when you puke on yourself, puking on your clothes is a given. You may overlook that stuffed animal shoved into the blankets on the bed. But 2 hours later when your room still smells like puke, you will figure it out.  At this point, a washing machine may not help your furry friend, or your hospital room.

A side note about puking... You don't have to be in the hospital for a stomach related illness to puke on yourself. Many things can cause such an event.... painkillers, hospital food, viruses caught while in the hospital, drinking too much water too fast while coming out of anesthesia, or orange juice followed by Emergent-C ... just saying. Prepare for it even if you don't expect it. 



Blow dryers, Hairspray, Gel - Just because you are in the hospital is no reason to ignore your hair style right? Forget it. Not going to happen.  Depending on your reason for being in the hospital, you will be lucky if you can wash your face and armpits let alone washing, drying, and styling your hair. If you can do all these things, you likely won't be in the hospital long.

 Your Favorite Blanket - I have a blanket I simply cannot live without. My husband got it for me for
Christmas and each of my children are eternally jealous. It is dark brown, king sized, and so incredibly soft you almost don't feel it touching you. If I am home, the blanket is with me. In the living room, in the family room, in bed, and when I work from home in the office the brown blanket is with me. I thought it would help me be more comfortable if I brought my blanket with me to the hospital.  I never even took it out of the bag. 



Me Writing My Blog with my Favorite Blanket!

The first night after my surgery I didn't have it. We left my personal items in the car until I had a room and by the time I had a room, the doors were locked so if my husband went to the car, he wasn't coming back in. By the time I really woke up on the second day, I realized that the hospital smelled really gross.  I can't blame ECMC, much of the smell was coming from me. I had dying skin sewn to my chest, bloody bandages all over me, I was sweating from hot flashes, I had 6 drains coming out of me and emptying into some contraption behind the bed (thankfully out of my sight because I surely would have passed out), and my hair was starting to stink.  My blanket was my primary recovery resource when I got home, and it was my plan to never have to wash it lest it lose its softness!  I simply could not expose this blanket to the elements in the hospital! It would definitely need to be washed, maybe even twice if it touched me right now. Not to mention, since it hadn't been washed yet, and I was a slew of open wounds, maybe it shouldn't touch me for my sake. 

Last but not least, you might puke on it. Refer to the 2 items above!

 

Things to Definitely Bring

A Back Scratcher - Remember those Duck Pond prizes from Crystal Beach? Remember the plastic hand on a long arm you used to scratch your back from that game? You or maybe your parents probably threw them out long ago just like nowadays we throw out our kids cheesy Happy Meal toys. Well, those scratching hands will come in handy if you are in the hospital for any length of time. I was recovering from 6 surgical incisions and skin transplants on my torso. I was in excruciating pain. Which incision hurt most? None of them, the Heparin shots I was receiving every 8 hours was making me itch myself to death.  Seriously, I was trying to rip the skin off my thighs and back.  The very first night, the back scratchers that we had bought our kids as souvenirs on our recent trip to the Poconos was on the list of what my husband needed to bring to the hospital the next day. And believe me, it got used.  If you don't have a back scratcher, the hospital gift shops usually have them or you can enlist someone to stay with you in the hospital and scratch you all day long. Or you can ask the nurse for Benadryl... but that is not the best choice if you desire to be coherent and awake at all for the next 4-6 hours

Socks/Slippers - The hospitals give you great surgical slipper socks! Use them! Wear them in the shower. Otherwise they are ill fitting and very scratchy. Treat yourself and bring yourself 1-2 nice soft socks or slippers for each day.  If your blanket doesn't reach your feet, often nobody will be there to reach it.  If your stomach muscles are compromised, you can't reach it either.

Baby Powder - If you will be bed bound for more than 2 days, I highly recommend you bring some baby powder or Gold Bond medicated powder. Why?  When you are on a bed propped into a 45 degree position for most of the day with your feet up so they don't atrophy orr swell, what is the lowest part of your body? Your butt and thighs.  All your blood will pool there. Not only are you prone to bed sores, but you are likely to swell.  When your ass and thighs swell, they touch. When you walk, they rub.  Any women with meat on her bones knows what happens next. Men who wear jeans in the summer know what happens next.... chafing. The best way to recover from surgery and prevent hospital-borne illnesses such as pneumonia is to get up and move around.  This will be very painful if your legs and ass-cheeks are chafed. So don't let it happen. Be proactive! Plus, all that scratching that you are doing may also be caused by sweat on your back. Medicated powder can help relieve that as well helping you avoid the dreaded Benadryl shot.

Dry Shampoo - If you have hair, I cannot stress how important this is. One of the first things to show grease and stank if you are a girl is your hair (well, maybe the 2nd...). When you are unable to shower because of open wounds, drains, or inability to move, you need to do something about that hair! The hospital offers an ingenious contraption called a Shampoo Cap. It looks like a shower cap. You add a little water to it, put it over all your hair, and then your lather through the shower cap. So it is like real shampoo and conditioner and water on your hair, but it is all contained with the shower cap. Sounds great doesn't it? I feels great! But there is a huge flaw... you don't rinse it out. It says it is a leave in treatment. By 'leave-in' they mean when you take off the shower cap you don't see suds.  You will feel like a million bucks for about 2 hours. Then, after that short 2-3 hour period, your hair will be more disgusting than it has ever been in your entire life.  It will be greasy. It will be sticky. It will smell like the hospital. This great invention is the REASON hospitals smell... I couldn't even stand the smell of myself after using this cap. DON'T DO IT! There is a better way!

My sister Jessie and I were at Tops Supermarkets the night before my surgery.  She introduced me to dry spray on shampoo.  It is readily available and is made by TreSemme, Garnier, Loreal, Got2B, along with others. I bought the Got2B dry shampoo for $5.99.  I should have just used this, but I was interested in this amazing con'trap'tion the hospital offered and so I fell for the trap.  After I damned my hair for at least 2 more days with the hospital shampoo cap, I switched to the spray on shampoo for some relief.  I didn't get great results because I had already destroyed my hair by basically putting shampoo and conditioner in it and leaving it there. But it definitely helped. The dry, spray on shampoo is basically a superlight powder that sticks to your hear, absorbs grease, and refreshes and deodorizes your head. When I used it again after my second surgery, it was wonderful. It was like I just washed and blow dried my hair!

To use the dry shampoo, part your hair every 2-3 inchest and spray along each part and lightly about halfway down. This is easiest if you let someone else do it for you. Once you have applied to your whole head, comb it through.  For the 4 days that I could not shower (3 after the first surgery, 1 after the 2nd), I relied on this stuff more than I relied on food! It was a life saver and I will never go to the hospital without it!



Me Receiving a Dry Shampoo from Mom's BFF Tina

Baby Wipes - If you are not able to shower, baby wipes can help you continue to feel somewhat fresh and keep smells at bay. Again, the hospital supplies moistened, soapy wipes, but they leave a residue.  I think the baby wipes leave a film too, but I think the hospital grade residue is heavier. 
Baby wipes can help you refresh your face, chest, shoulders, underarms, legs, unspeakable parts, and neck.  They don't smell that bad either. 

Smelly Lotion - Your skin will dry out. Your room will smell. These are givens. Combat both with your favorite Bath and Body Works scent.  Keep it on your night table and use it often.  You will thank me later!

Chapstick or lip gloss - Whether you are male or female, you should prepare yourself for the dryness of the hospital. You may dehydrate from meds, or in preparation for surgery, or just from sleeping so long without waking up to drink. Quench your lips in comfort with some Burts Bees or Chapstick.  If you are a lady, you will feel much more presentable to guests with a natural colored lip gloss at your side at all times.

Large Water Bottle - The nurses in the hospital usually stress how important it is for you to drink plenty of water and stay hydrated while you are in the hospital. Then they give you this little water
pitcher that will fill up a 12 ounce styrofoam cup 2 times.  And if you can't get out of bed, you may wait a long time for more water.  I am a naturally thirsty person. On any given work day, I drink 6 32oz mugs of water.  Plus what I drink when I get home or go to the gym, I usually take in almost 200 ounces of water a day (and then my doctor lectures me that if I just drank more water I would lose weight. See why I didn't have a PCP for over a year? They don't listen!)  Even if you don't drink as much as me, certain drugs make you thirsty. Be prepared with a large water bottle and have the nurse fill up your pitcher AND your water bottle. Remember, this is usually tap water. If this bothers you, bring a 6 or 12 pack of bottled water with you, just realize it will likely be room temperature unless you don't mind adding it to the hospital supplied ice.  Being unable to move, hot, and thirsty sucks. Be prepared!

Summary

I am writing this blog from my own experiences. Some things I did right and I wanted to share so you do them right too. Some things were an epic fail, and I learned for next time.  If you or someone you love is planning an extended trip to the hospital, please share with them!

A Boob Funeral

The 2nd Mastectomy

On Tuesday at 1:00 I had to go into surgery again to remove the new breast that had not survived the skin transplant.  I had decided that I wanted Dr Burke to remove both breasts even though one would have mostly survived. The reason for this is two-fold. First, I did not want to go a year with only 1 boob. Secondly, I thought that having implants on both sides would make both breasts more likely to be the same shape and size and all together more symmetrical. Dr Burke came in to see me right before surgery and I advised him of my decision. 

Just like the first surgery, I couldn't have anything to eat or drink after midnight the night before surgery. Unlike the first surgery, this time I wasn't going in until 1pm (I went in at 8am the first time).  Also, this time I was on medication that made me extremely thirsty.  I wasn't really able to eat anything the whole time I was in the hospital anyway but drinking? That was another story. Over the past 6 days, I went through about 10 of those little hospital pitchers of water a day.  I was never more thirsty in my life. And the time from midnight to 1pm the next day was completely torturous.  My tongue kept sticking to the top of my mouth, my lips kept drying together.  You would swear I was left abandoned in the Sahara for a week.  I kept rinsing my mouth out with water and spitting it out, just to trick my body into thinking it was being replenished.  That was my only complaint. 

 

Breast Expanders

Going into surgery this time I had no boobie glasses. I had no cute post-its.  It was a funeral of sorts for my new, ill-fated boobs. It was a somber occasion. They had a whole life ahead of them. Their time on Earth was cut short. It just wasn't fair. They never even saw the light of day, a colorful bikini, a cute bra, a hot tub... all the life they were missing brought tears to my eyes.  So this time, I went under without a lot of drama. On the bright side, when they removed the ill-fated boobs, Dr Burke was going to put in 2 new expanders. The expanders would be put where my boobs would eventually be, under the pectoral muscle, so that it could slowly stretch the skin and muscle to the point that Dr Burke could put a silicon implant in. So I would be relatively flat for now, but over the next year, my new, perky boobies would be slowly growing in.  So in the grand scheme of things, I was pretty lucky! 


How a Breast Expander Works

Right before surgery I had to sign another release form. This one was to allow Dr Burke to use a foreign substance in me to create the breast ridge. The ridge is what is underneath the breast to keep it in place or else it would slide down to my abdomen. Dr Burke explained that this substance was a cellulose-type substance that is harvested from cadavers but it has no DNA in it, so there is nothing for my body to reject.  The substance would basically create a shelf for the expander to sit on. Wow... two minutes before surgery I learn that I will have cadaver parts in me. So this is why they wouldn't let me eat or drink because I am pretty sure I would have thrown up. Oh well, on we go!

The Unfortunate Outcome

The surgery time for my second mastectomy was not nearly as long as the first. I was out of surgery by 3:30.  Unfortunately, I came out of surgery with bad news.  As Dr Burke had told me, the problem with my breasts were that they were getting good blood flow to the boob, but the veinous flow away from the boob was poor.  This came up again. When he removed the breast tissue and went to put in the tissue expanders, there was too much blood in the area to support the tissue expanders. As a result, he was unable to install them at this time.  Dr. Burke felt that the wound site needed to heal 4-6 weeks before we could attempt to install tissue expanders again.

This news was devastating.  No boobs. No expanders. Just me and my new monopoly board chest.  My only bright spot was that I could try again in 4-6 weeks. But then I think "Great. Another surgery, another leave of absence from work. WTH?"

What's worse is the stitches they left in my chest. If the first stitches looked scary, these were even worse.  Thirty stitches across my chest. Each one a big blue knot. And the slits across my chest were not straight. They were curvy all over the place and they dimple and gather. The sight of my new chest was pretty scary.  Being in the hospital for 7 days did not make me feel vulnerable. Not being able to get myself in and out of bed did not make me feel vulnerable. Not being able to shower myself for 2 days did not make me feel vulnerable.  Having my chest look like a serial killer got to it... that made me feel vulnerable. Suddenly I felt frail like an 8 year old child. Coincidentally, that's what I look like in a shirt now.

 

Preparing to Go Home

After my 2nd surgery things were not as exciting in my hospital room. During surgery they removed one set of surgical drains so now I just had 2 in my chest and 2 in my abdomen. In addition, they removed those drains from suction. They were just hanging from me now, relying on gravity for suction. That gave me more freedom to move. My stomach incision was almost a week old now and starting to heal. I was able to get in and out of bed, although not easily, and the fact that the bed was adjustable helped a lot. First I would move the back straight up and use the bed to get me into a seated position. Then I would lower the bed as much as I could to get my feet on the ground. Getting back into bed was a much harder chore. I could sit down and everything, but you probably have no idea how much ab function is needed to lift your feet off the floor and swing them onto a bed.  I needed someone to lift my legs on the bed so if I got out of bed unsupervised, I would have to call a nurse to help me get back in.  Although I was longing to go home, getting in and out of bed at home was not something I was looking forward to.

By this point I was able to shower unassisted although washing my hair was going to continue to be a challenge for weeks to come.  Raising my arms above chest high is something we women take for granted. My hair was going to suffer until I got my full range of motion back.  No long, luxurious washes, blow dries, or hair do's for me for awhile unless someone else was doing it (spoiler alert - that was never gonna happen). 



Portion of Surgical Drain that is visible outside the
Body

Another challenge in the shower were the surgical drains.  Up to this point, they just hung from my body.  I was starting to get feeling back at the surgical sites and having a little water balloon on a tube simply hanging from my abdomen was very uncomfortable. Accidentally snag something on the tube while showering and it got much worse. I don't remember showering without tears for at least the first week or so after my 2nd mastectomy. 

Portion of Surgical Drain that is INSIDE the Body

 

How Drains Hang

 

The doctor told me he would like me to spend one more night in the hospital after my 2nd surgery because my hemoglobin counts were still very low and I may need another blood transfusion. So I planned on spending Tuesday night there and going home Wednesday.

 

Tuesday night I slept pretty good with one exception. Hot flashes.  I thought I had experienced a few hot flashes before but I was wrong. This sucked. I would be lying in bed and all of sudden feel so hot it was cold. My face felt like it was completely blood engorged and was going to explode. My hair was immediately soaked through with sweat and so was my back. It would last about 10 minutes. When it was done, I would start to freeze because my entire body was sweat covered and now the cool air was going right through me. The nurse said this is because my breasts were removed so my hormones were out of whack. When I mentioned this to Dr Burke the next day, he said it was bologna. Well, something is clearly out of whack when a 37 year old woman who had their period a week earlier starts to experience hot flashes.  The consistency of the hot flashes would fade away over the next weeks, but they would continue at night for quite a while.

 

Come Wednesday everyone was exhausted from the drama at the hospital so I pretty much spent the day alone. I wrote in my blog a bit. I read some of the book "The Life of Pi" that I brought along for the trip, and I turned on the TV for the first time... well the 2nd time. The first time was Sunday night to watch the Walking Dead.  I did have one visitor that day. My sister's boyfriend was at ECMC for an appointment of his own, so he was nice enough to stop in and sit with me for awhile. He told me everything that was going on with the family, how Dad was, and how many days it had been since Buffalo's last homicide. This last fact came up because the church across the street from ECMC displayed the information out front, so everytime he came up to the hospital, he was excited to see the update. Four days since Buffalo's last homicide. Good to know.

 

Coming Home

 

After my husband got out of work that day, he came up to the hospital to bring me home. It took him 4 trips to get my bag and all the flowers out of the room. The nurse escorted me to the lobby in a wheelchair which was a good thing. I thought I could walk fine, but just going through the hospital in a wheelchair was making me dizzy and nauseous. Imagine what walking would have done! The nurse waited with me while Rory went to get the truck. The truck. He should have brought a step stool so I could get into it. That was a challenge too. If you recall I couldn't get my own legs up on the bed. The truck sits about 3 feet off the ground. And I had to sit in the back because my incisions on my abdomen and chest were too new to put a seatbelt over.  Even though the hospital is only about 15 minutes from my house, it was a very long 15 minutes. Every pothole, every crack, every piece of garbage we drove over I felt. And not just in my chest and abdomen, I felt it in my right arm.  My right arm was super sensitive for some reason. I figured it was from not moving it. The nurse said it is probably the position the doctors put it in during surgery. I bought this line of bull at this time.  Sounded plausible. 

 

I hadn't really been able to eat while I was in the hospital. First of all, I wasn't hungry. Second of all, every time they brought me food it was cold. Third of all, the food was atrocious. The first 2 days I thought I could stomach some chicken soup. When they brought it to me, it was the look and consistency of canned cat food. And it was cold.  I am not discerning when it comes to food. I will eat anything. I even eat buffet food from Ponderosa or Country Buffet. I have been known to enjoy Chuck E Cheese pizza.  So my tolerance for crappy food is high.  No way, no how could I stomach this hospital food.  I would go before a judge right now and swear on a Bible that they tried to serve me cat food, that's how conviced I was.  How in the world do they expect anyone to heal eating this crap?  The chicken soup was the worst. Some of the other meals looked ok, but when I tasted them they were cold, dry, and bland. I started ordering cereal and milk for every meal. But the milk would be warm and turn my stomach.  So on the way home from the hospital, I asked Rory to stop at McDonalds. I was starving, but my conscience got the best of me and I knew I shouldn't eat that crap so at the last minute I said nevermind. Some of my great friends and family had brought precooked meals to the house while I was in the hospital for the family and I had heard there was some ravioli left, so I looked forward to that. Upon getting home, I kissed and hugged the kids, and then I proceeded to eat 2 full plates of homemade ravioli, thanks to my friend Cheryl.  That was the best night of my life!  I felt like I had been saved from the week of wandering through the Sahara! 

4 Days and 5 Nights with Frankenboobs

Settling In

After I came out of the anesthetic from my surgery I was brought to my private room at ECMC.  Thank goodness they didn't ask but just gave me a private room because I would spend much of the next week nearly naked. 

My husband, Grandmother, and Dad's girlfriend Cathy accompanied me to my room. My Dad couldn't come because at some point during the 13 hour surgery, he discovered he had come down with a pretty intense flu and it was highly contagious.  So while I was in surgery, he was at Immediate Care getting medicine.  I guess when it rains, it pours. Once I was in the room, the nurses hooked me up to various machines... one suction machine that would empty the 6 surgical drains that were inserted throughout my abdomen, a catheter that would remain in place for at least another 2 days, an IV for fluids, a morphine drip with a fun push button that I could use at my leisure (this was the highlight of my stay), and an oxygen tube that was stuffed up my nose. This was not fun. It's a good thing that it hurt to breathe because actually moving was going to prove to be a challenge.

Once the nurses left the room, my entourage (and myself) couldn't wait to see the results.  My gown was only draped over me so I pulled it down to check it out.  My stomach was pretty much as flat as I could ever remember it being.  That was nice.  My boobs were practically in my chin.  They were nice boobs. Very full, at least a D cup if not a DD.  I was happy. I was going to be happy. I have pictures of what the 'Frankenboobs' looked like, but after discussing with my husband, we decided not to show them publicly.  So instead I will draw a picture! (My college almost art degree at work!)

The outside of each boob was my original skin, but my belly skin was patched over about 1/2 of each boob creating a pocket and each pocket was bursting at the seams.  The skin was stitched on. I was expecting a clean, perfect looking stitch but this was not.  This looked like something you would see on a voodoo doll. As I mentioned, I had 2 patches stitched onto my very full and very swollen new boobs. I had a slit with pretty stitches under each of my armpits, I had 1 nicely stitched slit connecting my hip bones right across my underwear line, then I had 4 holes on the side of my ribs where my chest drains came out and 2 holes above my pubic bone where the abdomenal drains came out. I am very lucky that I couldn't get a full on look because blood makes me somewhat queasy... even when my kids scrape their knees I get that sick to my stomach feeling.  This would have brought this to whole new levels.  My entourage convinced me that everything looked good. I can't, no matter how I visualize, imagine how this would have looked good.  Once everyone was convinced that my vitals were strong and I was properly medicated and ready to sleep, they all left to go home.  It was 11:00 at night and everyone had been there since 6am. I had the easy part on this day.  I felt like I just got there a few hours ago. Everyone else looked completely exhausted, hungry, and slightly nauseated.  After I saw the pictures, I understood.

Bad News

Bright and early the next day I was visited by Dr. Loree, Dr Burke's counterpart.  As it happened, Dr Burke had to go to Texas (my favorite place in the whole world) for a conference and left immediately following my surgery the night before. He was not due back until Monday. So Dr Loree introduced himself and advised me that he did the surgery with Dr Burke. Unfortunately, Dr Loree told me that there were problems during surgery. They had a very hard time microscopically connecting the main blood vessels from the chest to the blood vessels from the belly tissue. This is why the 9 hour surgery turned into a 13 hour surgery. Dr Loree was very concerned about the viability of the right breast.  Every 4 hours, the nurse was instructed to come in and take a doppler reading of both breasts.  To do this, they had to take a wand and listen for blood moving in and out of each breast. They would listen on the transplanted patch itself and they would listen above the chest where the main blood vessel was connected.  As long as a heartbeat could be detected, there was hope for the survival of the transplanted patch of skin and tissue.  So far there was a heartbeat everywhere they checked so we were good... but it was faint. My job was to work on getting that to a more healthy blood flow over the weekend.

I don't remember much from my first night or my first full day in the hospital. I remember that the nurse told me that I could get one shot of morphine every 6 minutes.  I heard this as I can get up to 6 shots of morphine once an hour. Why I so misheard this, I couldn't tell you.  My family says it is because I was so doped up still.  Now, as I write this a few weeks later, I still mis-hear people's statements and cannot hold my attention to a conversation for more than a few minutes. I actually think I endured some sort of brain damage from being under so long. Everyone else laughs at that, but time will tell. Not being able to comprehend much of what was said to me was pretty typical of my stay at ECMC, which is why it is so unusual what happened next. The surgical resident and his med student came through on rounds to talk to me. They asked my Grandmother and Cathy, who were both pretty much in the room with me constantly, to leave the room so they could talk to me alone.  They were with me for about 10 minutes and I can tell you 2 things that were said.  They said "not likely viable" and they said "blood transfusion".  When Cathy and Grandma came back in, they asked me what they said and I said "I don't know".  That was private time well spent.  I mentioned the blood transfusion to Cathy and Grandma who asked the nurses. The nurses said that was not on the charts so they had no idea what I was talking about.  Cathy and Grandma attributed my misinformation to the morphine and pointed out to Dr Loree that it was not appropriate to make them leave an important conversation when (1) I was highly medicated and (2) I said they could stay.  This complaint was duly noted and this oversight did not happen again. 

The Blood Transfusions

Saturday morning everyone was exhausted from being in the hospital, and as a super nice surprise to all us Buffalonians, it was 60 degrees out. A nice change from the low 30's we had been experiencing. So everyone, including my husband, took the morning and early afternoon off and spent some time outside. In addition to it being a beautiful day outside, it was also my husband's 41st birthday so he was excused.  In the preparation for surgery I had not gotten him anything for his birthday (except a party the weekend before).  I still need to come up with an awesome birthday present to make up for this one. (Suggestions welcome.)

So of course this would be the time that the nurse came in and told me that I was getting a blood transfusion.  She made me sign a consent form to receive blood and 2 nurses had to verify my identity and the identity of the blood I was about to receive. I felt very confident that I was receiving the proper blood type. However when the nurses read me the list of possible side effects, I have to say I got scared.  I started texting people to come up. The nurses weren't going to stay in the room with me and if I started having any of these symptoms I wanted someone there to see them and report them.  Everyone was on their way. 

The nurse told me I could not have the morphine shots while receiving blood.  She got me all hooked up, removed the morphine, then backed away and looked at the blood sack. Then she said, "Ya know, I am going to let that sit for a while before I start. I'll be back in a half hour" and she left.  What the hell!!!!! You disconnect my pain killer and then decide to delay for a half hour???  Maybe there was a good reason for the delay, but the nonchalantness in her voice sounded like she just thought of something better she had to be doing right now. I am sure it was in my imagination but remember I still couldn't move. Still connected to a catheter and suction,  I was still unable to get out of bed.  The only thing I could do was use my phone so I started frantically texting my husband and Cathy... "Please hurry! The nurse is trying to kill me!"  The nurse finally came back in around noon and started my blood transfusion.  About an hour or so later, my husband arrived.  As luck would have it, I had no side effects to the blood transfusion which was a good thing. Not only for obvious reasons, but because apparently one wasn't enough.  When all was said and done, I would end up needing 3 blood transfusions.

Natural Healing

As the weekend went on, my 'frankenboobs' started to look a little less healthy. The heartbeat was getting fainter and the color was going from pink to blue and red mottled. The blood supply was dwindling. My grandmother was up in the hospital almost continuously throughout the weekend.  She came to the hospital prepared with healing herbs and some tricks.  Throughout the weekend, we would 'annoint' the dying skin with an herb concoction called "Rescue Remedy" which is known to heal burns, cuts, and other topical skin ailments. When consumed, it is known to help colds and flus.   She did this a few times over the weekend.  We were all highly encouraged because when the nurses came in to get the pulse, it was not only there but getting stronger!

Dr Burke Returns

Dr Burke's Surgical Cap

On Monday, Dr Burke returned from Texas but this time he wasn't wearing a super cool tie or pink socks. He was wearing a surgical cap with all the United States pictures all over it. I know this because I didn't hear much of what he had to say, I just stared at this cap. (See? I told you I suffered brain damage).  He talked to me and my family about 10 minutes but what I remember is this.  Blood is going to the right breast, but it is not flowing away from the right breast. So the right breast is becoming engorged in blood and the skin is dying. It was now blue and blistered.  In addition, part of the left breast was dying now too.  About 1/4 of the transplanted skin on the left was turning blue and starting to blister.  Things did not look good.  Dr Burke was going to schedule surgery for Tuesday to remove the right breast. He will probably need to remove part of the left breast but most of it could stay. 

So the course of action would be to remove the right breast and put in a tissue expander.  Then over the next year we would pump up the tissue expander a little at a time until it was almost the size of the other breast. Then they would remove the expander, put in a silicone implant, and cover it up with a flap of skin from my back.  While that expander is working over the next year, I would have one full boob and one flat or very small boob.  Or I could make the choice to have both breasts removed and start over with 2 tissue expanders.  I had until surgery time at 1:00 Tuesday afternoon to decide.

This was very sad news.  For everything that I had endured - 13 hours of surgery, 3 blood transfusions, some puking on myself (I spared you those details), some bed sores on my legs and feet, and worst of all, I was given a shower by my grandmother - all for nothing.  This news was like hearing that a loved one who was hanging on to hope with life support was about to have the plug pulled.  It was deflating.  I just kept thinking at least I have a nice flat, fat free stomach. That's something right? 

Surgery Time!

My mastectomy was scheduled for Thursday March 7th.  My husband and I left the house at 5:30am that morning because we were due to check in at 6am with a surgery time of 7:15am.  No eating or drinking after midnight.  No eating was easy but when you drink as much water as I do, simply being awake without a glass of water is torture.  By the time we got to the hospital I swear I was dying of dehydration... my tongue kept getting stuck to the roof of my mouth.  And I thought this was really annoying.... Ha! Annoying hadn't even started yet!

Getting Ready...

I checked in and was given the obligatory hospital robe and surgical socks to put on. Then I had to wait there until the surgeons showed up.  My husband, Dad, and Dad's girlfriend (my entertainment entourage) were there with me.  For 30 days prior to surgery I could not have any aspirin or any other type of medication that would result in thinning of the blood so I was very surprised and skeptical when they told me I needed to take an aspirin. Then I was mortified because of course I couldn't eat or drink anything so they had to administer the aspirin another way.... I thought once I had passed my infant months I would be done with people shoving things up my butt... I guess I was wrong. At this point I forgot about my annoying dry mouth.

Before surgery I had 2 nagging worries.  First of all, we had a great dinner the night before at the Olive Garden and I was unable to go to the bathroom that morning.  I was preoccupied with the thought that I was going to poop myself on the operating table.  This was always my biggest fear when I birthed my kids too. I guess everyone has that one weird thing that they obsess about.  My second fear was that I was going through all this and was going to end up with little boobs. 

I was there first for a mastectomy where Dr. Lindfield would remove all my breast tissue on both sides. Then she would run a series of complete pathology tests on the 3 tumors that were found to be cancerous and the 4th tumor which the MRI found but I opted not to have biopsied.  Secondly, Dr Lindfield was going to do a Sentinel Node Biopsy on the lymph nodes closest to my boobs on both sides. The purpose of this was to determine if the cancer had spread from the primary tumors to my lymphatic system. Once cancer spreads to the lympathic system it is much more likely to metastasize (or grow elsewhere in the body).  That would be bad.  As it was explained to me, Dr Lindfield was going to surgically remove the sentinel lymph node (the one closest to the tumors) and check it under a specific light that will make the injection I got yesterday glow. If she sees cancer, she will take the next lymph node and examine it again. This continues until she finds lymph nodes with no cancer. 

The third part of this surgery was reconstruction. Dr Burke would cut a triangle of skin, fat, and blood vessels from my tummy, cut it in 2, and then use that tissue to make me 2 new boobs.  This part was going to take awhile.  Apparently you can't just take skin and tissue from one part of the body, place it somewhere else, and then expect it to grow. Dr Burke needs to take the tissue with the main blood supply and reconnect it to a main artery and vein in my chest so that blood and oxygen could be delivered to the transplanted skin and fat. This portion of the surgery would need to be done under a microscope. Because of this part of the surgery, my family was told to expect me to be in surgery for 8-9 hours.  This was the part I was scared of. I am a bigger girl. I have not seen Dr Burke since my 2nd consult at the end of January. I never told him what I wanted. Since Dr Lindfield operates first and then Dr Burke, the nurses told me I probably wouldn't see him before I went under anesthesia. This made me nervous. So I did what any logical business person would do.... I wrote him a note on a post-it and left it taped to my tummy.  The note read:

Dr Burke - Please remember your inner "boob man" when doing my reconstruction. I left you plenty of "raw materials" and I trust you know that I don't need any of it. Take it all to assure I am properly proportioned up top. Good luck!"

 

 In addition to leaving a lovely note for Dr Burke, I was sporting event-specific paraphernalia. To cover the fact that I wasn't wearing any makeup, I wore my boob glasses given to me by my friends from the MMA Class of 1993 at my Bye Bye Boobie party. All the nurses in pre-op thought it was just great and humor makes the waiting before surgery so much more manageable. 

At about 8:00 am I saw Dr Lindfield in her scrubs with her cap on. She came over to make sure I was ready and that I have received my dose of aspirin (I swear she did that just to torture me).  When I assured her that I did, they came and attached an IV in my left arm connected to saline. Then they brought a large tank of gas and laid it next to me on the bed.  I said goodbye to my family and then they wheeled my bed through the scary halls of ECMC. I remember getting into the operating room and seeing that they had a large 42in LCD TV on the wall and were playing the morning show on the radio.  As they were moving me from my bed to a hard, cold table, I asked if the TV was there so we could watch the Walking Dead.  The nurse put a mask over my face and replied "not you, my dear"... I said "aw maaaaaa.......".

Waking Up...

As it turned out, I was not an open and shut case. My 8-9 hour surgery turned into a 13 hour surgery. I may be a big girl, but I have little itty bitty veins. Dr Burke had a really hard time reconnecting my blood supply in my chest.  When I woke up, it was 9:00 at night and they had given me 7 liters of fluid.  My husband said I was so swollen that my eyes were slits. Unfortunately I have no fun pictures of that. Even I would have liked to see that!



Grandma beating my foot with a water bottle

When I got out of surgery, I had 2 new boobs (Frankenboobs as I called them), 2 surgical slits under my armpits (Where the lymph nodes came out of), 4 drains in my chest (along with 4 holes for the drains to go into), one slit from one hip bone to the other where Dr Burke took my tummy away, and 2 drains in my abdomen above my pubic bone.  And with all this, I was in pain but not at any of these surgical sites. My feet hurt.  I have been suffering from heel spurs (Plantar fasciitis) for almost a year now. The pain had all but gone away though when I lost weight from my new clean eating diet that Grandma put me on.  Before the weight loss, I had the pain in check because I would go to a chiropractor and he would use a mini jack hammer on the plantar fascia tendon which would kill, but then feel better.  When I got out of surgery, my left foot was pounding. I have no idea why. It brought tears to my eyes.  I could feel my heart beat in my heel.  I was screaming for my family to get Dr Jafari (my chiropractor) to come with his jack hammer and kill the pain in my heel. Obviously Dr Jafari was not coming so my Grandmother defaulted to the next best thing... a water bottle.  She beat the hell out of my heel just like Dr Jafari would have with a full water bottle.  No matter how hard she hit, it wasn't helping, I kept telling her to hit it harder.  We got pictures of that because that was just weird.  My entire 7 day stay at the hospital, my heels gave me trouble. I guess it is for the best so I didn't focus on the fact that my torso looked like I had been autopsied.