Tube-free!!!!!!

I went to the plastic surgeon again today.  She did the good ol' breast massage and then pulled the last drainage tube from it!  What a giant relief!!!!!  I am still supposed to lay low and heal.  While I'm doing that, I am going to be reducing all my pain meds, working on range of motion with my left arm (just raising it to shoulder level), and I have permission to sleep in BED again (as long as I stay folded up in a jack-knife position so I don't pull out my overstretched abdominal stitches)!!!!

Reducing the meds is making Dave anxious.  He thinks the pain drugs make me more manageable and compliant.  He is also a fan of pain meds.  I am not.  I'm reducing them quite a bit to his dismay.  He will probably try to sneak me in for a frontal lobotomy while I'm  asleep.

Still waiting on the pathology reports from the surgery.  They should be calling me this week with the results.  Slightly anxious about that.  Next step after that is meeting with an oncologist to determine treatment plan.

Better day!

My visiting nurse solved my previous problem by having me slug a giant bottle of magnesium citrate.    All I'll say is that it was a long, damn night!  Managing all my drainage tubes, while going through 100 trips to the restroom - is a night I'd like to forget.

We went to our second post-surgery appointment at Dr. Vega's office.  I am on day 8 since the surgery.  I am getting around pretty good, even though they won't let me stand up straight or lay flat in a bed - for fear of ripping out my very tight abdominal stitches.  She did the horrid breast massage to try to move the collected fluid out of the drainage tube.  She was able to pull out my 2 abdominal drainage tubes, leaving just the one coming out of my breast.  I was worried about how their removal would feel, but it wasn't bad.  Now I have 2 big holes that just need bandages.  She said I will feel like moving around more now that I don't have those tubes to hinder me and warned me that she still doesn't want me off the couch.

Dave asked, again, about the strange 2 inch stitching that is on top of my breast.  It's weird.  He says the plastic surgeon told him after surgery that it looked like a "cigarette burn" and tried his best to repair it.  So, now I just envision my surgeon doing my surgery with a cigarette hanging out of her mouth.  Haha.  Dave does not think it's funny.  He will ask about it, but in the end, it is done and there is nothing we can do about it.

I am at the point where I can decrease my narcotics.  I'd like to drop back to half my dosage.  Dave would like me to stay all drugged and happy.  He says I'm easier to manage like that.  I'm not as argumentive and I don't ask questions. :). I'm decreasing it anyway. I don't want to make things too easy on him.

My friend has arranged a meal train for us for the first 3 weeks.  At first, I didn't think we would need that.  Boy, was I wrong!  I am tired with just a small walk.  It has been a life-saver having good food delivered!!  I never have to think about what to feed everyone and I get to eat healthy meals during my recovery.  We are getting a meal every other day and have wonderful leftovers for lunches and the next day.  So incredibly thankful!!!!

I Don't Give a Shit.....

Literally.  Nope, not even after high fiber meals, milk of magnesia, Fibercon, Miralax, and lots of water.  Just saw the doctor today and they added Ducolax and Magnesium Citrate to the list.  They say this is a common side effect from taking narcotics.  I'll let you know how it all comes out...jk, that was a pun! Don't look for an update on that.

I was dreading this appointment with the nurse today because they told me to take all my pain meds to the maximum dosages before the appointment because they would have to massage my breast.  Massage my breast.....doesn't that sound lovely and inviting?  Yeah, no. One of my drainage tubes comes out of my breast and they wrung my breast out like a car-wash sponge.  Just making sure all the liquids are draining and not forming a pocket anywhere. Horrifying.

Then the nurse came back in the room with her personal iPhone.

Nurse:  I'm going to take some pictures of your breast and abdomen
Me:  Okay, just don't tag me in them.
Nurse:  .....
Me:  .......
Nurse:  Oh, haha, no, these are just for the doctor!

So, I am restricted to sleeping in the easy chair because I am not allowed to lay down for 2-3 weeks for fear that I will stretch or rip my abdominal stitches. All my steri-strips were peeled off and reapplied, my breast went to the horror spa for a massage, and all my tube openings got a good wash down with hydrogen peroxide (which I'm supposed to do daily from now on).

And every time the doctors or nurses look at my bruised and swollen Frankenstein body they all exclaim "Wow, that looks GREAT!!"  I would hate to see what they see that is 'not great'.  There cannot be a bigger nightmare than what I see on my body currently!!

Day one of couch prison

I slept in the easy chair in the living room with a million pillows last night.   I generally cannot sleep sitting up, but there is no way to lay down yet.  Thankfully the drugs help me sleep in basically any position.  My migraine still shines through whenever I am due for my meds again.  The meds and an anti-nausea pill usually bury the headache pain.

The surgeon called and switched my post-op appointment to tomorrow.  They told me to make sure I have good pain meds prior to that appointment because they will be poking around and massaging the new tissue. That completely freaks me out just thinking about it.

Dave did amazing getting the boys up and ready for the school bus, keeping me on my meds schedule, keeping the house tidied up, getting my tubes and drains clear and measured, and even getting a little of his own work done.  It all makes me feel much more relaxed and focused on my own needs.

My sister-in-law came over this morning and checked all my bandages and removed the ones that could be removed.  She's a nurse and going above and beyond her SIL duties!!  She brought over shampoo kits that you can microwave and put on your head and scrub.  They wash, condition, and rinse your hair - way better than dry shampoo!!  Then she got me into the shower and washed me up. I'm having a hard time just looking at my stitches, etc and she was a real sweetheart about this all!  I  am very gruesome looking right now!  But, since the shower and getting my hair blown out, I feel SO much better!  I'm comfortable getting up each hour and taking a hunched over walk through the house carrying all my tubes and drains.  It tires me out, but that feels good too!

My friends from work stopped over with the first meal of the meal train that they organized at school for me.  They stayed and visited and kept my mind off my pain for a while with their stories and laughter.   I am still overwhelmed by the outpouring of compassion from everyone in my life.  How did I get so lucky to have so many people willing to go out of their way and support me like this?

Home again!

First of all - Dave was at my side throughout this entire hospital stay. He slept in a chair in the corner.  I don't know how he did this and he has got to be exhausted.  I was awoken every hour throughout the nights for pain meds, vitals, Doppler on the transplant, Heparin shots, draining my tubes, etc.  For me, sleep came easy because I was constantly in a drugged state.  I don't know how Dave was able to sleep through all that.  He was trying to understand everything that was happening with me and ask a million questions. At that point, I didn't care about anything - so I am beyond grateful for Dave.  And, yes, he probably could pass the medical boards by now.  He has always had some doubts about people in the medical field, and some of our experiences just proved him right. But, there were also some extremely competent and caring people, and it was a breath of fresh air when they cared for me.

I don't remember much after the surgery.  I went to a recovery room, but I think I may have been there a couple of hours.  I have no recollection of that.  The first thing I was able to remember was being wheeled from recovery to my room.   And I was extremely "out of it" and severely motion sick. They handed me a little thing to throw up in.  I was very hot and was begging to have the blankets and socks off me.  Apparently, Dave took my socks off and I was trying to fling the blankets off.  I  remember looking down at my completely naked self and came to my senses a bit as I thought "omg, we're probably in the hallway, I should be covered!"

The next few hours was about managing my pain and nausea.  These heavy drugs always kill me.  I made it though the night and the next day they got me up to sit in a chair. On Saturday, I was able to take a "walk" (looking like a 124 year old woman) down the hall.

I had been suffering from a headache starting Saturday. It continued through the night and was much worse on Sunday.  At that point I knew it was a migraine and I was back to feeling nausea from that.  The nurses were trying their hardest to understand my pain level from the surgery, but my migraine trumped all that pain.  When I had to rate my pain, I would say my abdomen was a 5 and my head was a 9.  So, there I was, massacred from the surgery, but trying to get my head out of pain.  It was at that point the the hospital fire alarm started going off.  Which, as you can imagine, is terrible for a migraine.

I left that afternoon with drugs to try to manage my migraine - the car ride was a nightmare, but I had a puke bucket and ice pack.

Josh and Brea had prepped the kids well.  They knew they could not maul me and were excitedly asking to see my tubes.  When we got home, and I was showing them my stitches and tubes - I could tell that Will was thinking "wow, this was a mistake" but he hung in there to see everything.

It is late Sunday night.  My migraine is still killing me.  Super unfair at this point, but I guess it puts my other pain in perspective.  The kids are sleeping and Dave is digging through their backpacks to understand all of the things they will need to do for preschool.  The bus is picking them up at our house tomorrow morning. They are going start buying their lunches. Life is good.

Day 1

What everyone wants to know:

·        No cancer was identified in Jen's sentinel lymph node and the tumors looked better (smaller) than the doctor expected

·        Transplant reconstruction looks good (or “great” if you are the reconstruction doc), the next 48 hours are critical to ensure it sticks and there’s no complications with clotting

·        Jen’s in a lot of pain (7 of 10), nauseous due to the narcotics and that’s with the morphine and “pain ball” in her stomach that has her abdomen completely numb – BUT she looks great!

·        Next steps on the journey:

o   Get past the next 48 hours w/o clotting or infection and get discharged from Highland Hospital on Sunday (visitors limited to 2 at a time (and welcome), no one younger than 14 because it’s flu season, but no hour limitations)

o   Receive final pathology in 10 days followed by a “conversation” between her surgeon, oncologist, and reconstructionist to determine if chemo or radiation are going to be necessary – indications continue to be that this is not likely – great news at this stage

o   Get better and begin recovery – in the near term requiring Dave to effectively empty three drains 2x-3x a day for the next 10 days or so and Jen to keep her sanity

How we got here:

Jen got even more sick over Wednesday night, if that was even possible, which as you can imagine had an extremely calming effect on her anxiety level which for fun and excitement we decided to amplify by taking my partners in crime - Will and James to her nuclear injection at 8:30 in the morning. This is the shot that provided the marking liquid so that the doctors could find Jen's sentinel lymph node during surgery. While the shot hurt a ton, it was a smaller needle and a helluva lot less painful than the hollow needle biopsy she went through in October and was a non-event otherwise. It was delayed 45 minutes leading to a little more uncertainty about when surgery could occur as there was supposed to be a 4-hour delay between the injection and surgery. Jen tried to get an answer as to whether she would be going in for surgery that day - in an attempt to avoid the shot. No luck as it turns out in Rochester the only inhibitors to major surgery are a fever or green phlegm. If you have neither you are good to go. Cough, congestion, runny nose - those are all distractions for those of us that obtain their real time degree via WebMD such as yours truly. In any event the nurse said - this is a pretty simple procedure – “just head down to same day surgery. Uh-no. Jen was like this isn't "same day" I'm going to be here for 4 days. "No kidding." So we left the hospital to drop the boys off at Jen's wonderful brother and sister-in-law’s house for the evening/weekend still not knowing whether surgery was going to happen.

Upon our return, Jen was admitted and immediately struck a chord with the admitting nurse who was a trip.

Nurse: Name?

Jen: Jennifer Weaver

Nurse: Husbands last name?

Jen: Kuder

Nurse: Hmm...are you going to take his name? Kuder-Weaver or Weaver-Kuder?

Jen:  Probably not

Nurse: You know I grew up in this neighborhood where the field where everyone used to play soccer on the weekends was on Beaver St. The cross street was Eaton - so everyone just said in response to the question what are you doing this weekend – “Eaton Beaver”. “Kuder-Weaver”, that's in the same ballpark - good decision.

Jen: I love her

It became fairly evident around that time that they were likely going to allow Jen to go into surgery. With the caveat that it appears that things have turned out excellent, I can't say that the next 45 minutes gave me any more confidence in the near term hope for our medical system. From the admitting nurses saying it was going to be a 3-4 hour procedure, to the reconstructionist saying his portion alone was going to be 5 hours alone, to our surgeon saying, I just looked at the MRI and the tumors look further away from the skin than I thought. (No kidding, I’m glad that was on your To Do’s 30 minutes before you head into the OR.) Our admitting nurse said we would not be seeing the reconstructionist before she went under anesthesia, however the surgeon suggested it was supposed to happen. “He's in the OR now (presumably conducting surgery) let me just wander in there and get him to come out now and see you.” Pretty casual around here at Highland, eh? Sure, why not? It’s not Jen in there. (Also interesting was realizing that in the middle of Jen’s 7 hour surgery, that the reconstructionist got to take his 30 minutes for lunch. Never thought about that – I guess that makes sense, we all have to eat.) Soo…doc comes out and they have the meeting of the minds in front of Jen about how this surgery is actually going to work, where they are going to make incisions, what they are both trying to accomplish, etc. Total time together, about 3 minutes and that's generous. As Jen and I were chatting this AM, it's not even clear to us that the reconstructionist had planned to take 2 flaps (basically one from each side of her stomach, significantly complicating and lengthening (doubling) the overall surgery time) before that exact moment. Now you (or I) could make the agreement that they could have met months ago, with Jen and discussed it, and it would have taken the same amount of time, with all the logistical hurdles of making that happen with two very busy and in demand physicians, thus why they do it 30 minutes before game time. I guess I was hoping that this was more than a 3 minute discussion and a little more back-and-forth. Isn't there a better way? My take was it was apparent that regardless of the facility we were going to use (Cleveland, Strong, General) they all were going to use a similar approach. Disconcerting but apparently the best blend of efficiency and effectiveness in today’s day and age. Never had an opportunity to see the Nip/Tuck operation and artistry first hand, all I can say is the magnitude of tissue they took out of her stomach was significant – think of a smile starting at each hip with about 6 inches at the center. This was my first time meeting the reconstructionist in person and he was solid – the kind of individual you would trust your loved one with, someone who it was apparent had the confidence and conviction with what he was about to do to not talk about risks and was focused on the outcome/results. Similar with her surgeon. Would recommend both without hesitation. The system/process - not so much.

 And I was off to the waiting room at about 1:15 - a one-hour change from her scheduled time of 12:15. She finally went into surgery around 2:30. My first call was from the surgeon around 4:30 to let me know the good news that the initial sentinel node pathology turned out negative but she looked good and had several hours to go. No news until 8:30 when I was paged (she was the only patient still in surgery at this point, they had started vacuuming the waiting room and locked up the front door) to let me know they were just starting to close up and it would still be awhile. Doc came out at 9:30 to let me know he had just finished and things looked great. I don’t remember much from the conversation other then him reminding me there are not many folks in the world that would even attempt this and while this type of surgery normally takes 12 hours, he does this so often, he can get it done in 6. Hey, at least he’s modest. ;) He noted there was some significant complexity beyond the normal for Jen (as he had to tie together 2 arteries and 2 veins complicated by some former surgery in her abdomen from a prior C-section and combine them to replace a single breast). I was finally able to see Jen around 10:45 but she wasn’t really conscious through the evening (or was that me) until this AM. He’s either really bad at managing expectations (which I can’t imagine) or she’s going to look fantastic as he was very happy with the result. She’s now in recovery, sleeping on-and-off, and will be here until Sunday at least – assuming everything goes well. They are checking her transplant with a Doppler device every hour to ensure blood is still flowing and will send her back into emergency surgery if there’s a clot or complication. She won’t be eating solid food until tomorrow and has to sit in a recliner to minimize the chance for fluid to collect in her lungs. (i.e., pneumonia). She’s up for visitors but Saturday is probably better given she’s drifting in and out of sleep today.

Apologies for the length (and delay) of the post – until our next update.

Ta-ta to my ta-ta

First - I have never felt the support of so many people in my life as I have over the past 4 months. There have been texts, phone calls, jokes, hugs, well wishes, funny pictures, prayers, positive vibes, gifts, listening, cards, t-shirts, letters, pink bracelets, cake, questions of how to help, organizing food, and just so much LOVE!  I am definitely feeling it!  And I cannot even put into words how much I appreciate it.  I would not have made it this far with my sanity intact without every single one of you.

Even people I do not know have been so thoughtful.  Yesterday I was dropping off Dave's dry cleaning.  They usually call me if I leave the clothes there too long - thinking I have forgotten them.  So, this time I told her that wouldn't be picking up the clothes for 2 months because I was going in for surgery - as I was silently thinking **please don't ask what kind of surgery...please don't ask**.  "Aww, what kind of surgery are you having?"   **Eeeek!**  Mumbling, "a mastectomy"....to which she responded by running around the counter and giving me a hug and offering to bring the dry cleaning to my house!!!  Love small towns! :)

Second - I am officially really sick!  I called the surgeon today and they told me to call my primary doc.  The primary wanted to see me.  I went in and they told me I have not been sick long enough to diagnose anything and therefore it is too early for medication.  (I knew this!). I am sure I have a sinus infection, but it just started a couple of days ago.  I'm a slobbery mess with a lot of sinus pain.  The primary couldn't even clear me for surgery because things could change overnight.  I am guessing the surgeon told me to see the primary to cover their ass.  Sooooooooo........

Tomorrow I go in for my nuclear medicine injection into my breast - so that my lymph nodes "light up" during surgery so they can be removed.  That's at 8:30am.  I have to report back to the hospital at 10:45am to get ready for surgery.  It is at that time that I suspect that they will say yay or nay to proceeding.  And if it is the latter, it is at that time that I will lose my fricken mind.

At this point, I am trying to keep focused on there being a surgery tomorrow.  My fingers are crossed. Keeping calm.  :D If all goes well, the next blog update will be written by Dave! :)

Super Dave!

I am definitely fighting something off.  Dave called the surgeon on Saturday night and she said there is not much we can do at this time.  She is calling today to check in on me. I am eating, breathing, and bathing in essential oils.  Since both boys are now sick and up several times in the night, needing Motrin, etc. Dave decided to sleep in the boys' room in a sleeping bag on the floor in order to let me try to get full night's sleep.  The boys always come to me in the middle of the night and Dave is gloriously able to sleep through it all like a true man.  So, Dave is amazing to offer to do this!  Except, on the first night he slept in there, Will woke up  and literally had to step OVER Dave and came into my room!  He slept there again last night and it was truly a gift.  I am feeling a little better - mostly a head cold that is slowing turning into a cough.  Three more days.....

I keep telling the boys to cover their cough because I cannot get sick.  I explained that I really need to be healthy to have this surgery to get this disease out of me - and that it is super important to get the disease out of me as soon as possible.  That has evolved into this:

Will: **cough cough**
Me:  Don't forget to cover your cough so I don't get sick.
Will:  Right, or you will DIE.

Uh, yes. Something like that.  :D

Everyone is SICK! :(

As I'm trying to get all my "last minute" things organized and trying to keep my anxiety down.....Everyone here got sick!  James has had a fever/vomiting since last Wednesday.  Finally took him in to urgent care and they put him on an anti-biotic.  Just hours after they all returned from that visit, Will spiked a fever.  So, here comes round two.  I woke up with a severe sore throat and ears.  So nervous....

......anxiety is coming in like giant waves.

Oh, and my skin on the left side of my chest is all raw and looks like open wounds.  It happened all on its own.  I web MD'd it and turns out I may have breast cancer.  Ha.

New surgery date

Dave called Dr. Vega's surgery schedulers and left a message yesterday.  I am thinking he called again this morning when they never called us back yesterday.  They finally called me today.  Surgery is set for January 19th at 12:15pm.  I'm assuming it's starting that late so Dr. Vega isn't jet-lagged.  That's cool.

Now that I have the date, I'm a little more calm (very little).  My Apple Watch only had to remind me to breath once today.  My resting heart rate isn't 114 bpm anymore. That's improvement. I am able to get back to getting things arranged.  I can go back on my Claritin D so my roommate doesn't have to hear me clear my throat a million times a day.  :)

And Dave just scheduled a weekend away in Chicago for the two of us.  Normally flying freaks me out, but in the scheme of things, it's not this time.  Nothing like a little perspective.

Not crazy

Saw the psychologist this morning.  I was supposed to see her for the first half and Dave was supposed to join me for the second half.  That didn't happen.  I talked.  A lot.  For like the whole hour.  And it seemed like it took 2 minutes.  Turns out, I'm not crazy. (Correct, Dave does not believe this). She believes that I've compartmentalized my cancer diagnosis so completely, that I haven't allowed myself to absorb it. I haven't allowed myself to have all the scary and horrible feelings that I'm supposed to have about it.  I'm not big with the feelings thing, so this does scare me.  I haven't cried about this.  I should be.  I just can't.  My biggest fear is that they open me up and discover the cancer is much worse than expected.  Knowing  that I have an 85% chance of living for the next five years is crappy.  I wouldn't get on a plane that had a 15% chance of crashing.  I am also too much of a control freak to allow Dave to take care of me, the boys, and the house. He can't do it.....like me.  And there's the problem.  I deal with my stress by making myself busy, planning, and organizing.  Dave deals with his stress by learning and asking questions and learning more.  Apparently, I harbor a bit of anger at Dave for so many "second opinions" and fear that it created the long wait for surgery.  I have to see the psychologist weekly now - so she can make me feel the feels. Ugh.

Also, Dave was arguing with me that every single person has a decent chance of dying every day.  I argued back, "Not a 15% chance of it!"  So he googled.....and I know you're curious what your chance of dying on any given day is.  It's .5%.  You're welcome.

Up in the Air in the New Year

The phone calls from Dr. Vega continued into Friday evening.  He apologized over and over.  Dave pressed them to keep the surgery on the 12th and cancel their "out of town" trip on the 13th.  Dr. Vega/Dr. Harvey are leaving on the 13th for a conference in Hawaii. Dave looked up this conference. As it stands, their conference ends on a Tuesday in Hawaii.  They would travel home on Wednesday.........and then he would be doing my 5 hour surgery on Thursday.  Also, he is probably beyond frustrated with Dave and me.  Not looking forward to going under that knife.

We called Dr. Hetland Friday evening.  By the way, she is amazing.  She often answers her own office phone and she will make late return calls and spend time answering all our questions.  She apologized for the surgery schedule mishap.  She believes another week won't make a difference with the cancer issue - but understands how I would be upset having had my mind set on the original date. Her schedule can accomodate an earlier surgery date, but Dr. Vega's schedule is really booked.  The surgery scheduling center does not re-open until Tuesday.

The last phone message from Dr. Vega on Friday was the kicker.  He said he was willing to clear his schedule of any surgery to accommodate an earlier surgery for me.  An earlier surgery date would mean THE FIRST WEEK IN JANUARY.  I never called him back.  I don't know how serious he was.

In the meantime, I'm freaking out that I might be in surgery this week. I'm freaking out that I might have to wait 3 more weeks too.  My type A personality is not adjusting to all this uncertainty.  So, I'm a complete wreck.  I stopped all my vitamins and any other meds I might take.  I have to be off of everything 1-2 weeks prior to surgery - nothing can thin my blood prior to micro-surgery.  And since I really have no idea when my surgery will be, I'm just trying to be prepared either way.

Seeing the psychologist tomorrow.  Thankfully.  I hope she's carved out 5 hours for me.

Current status:  No definite surgery date.