I've got a good one

I am so lucky to have a great person to help take care of me through all this.  That's something that I've noticed in the media about Angelina Jolie and Brad Pitt.  Many articles commend Brad Pitt for being by Angelina's side.  Well I have my own good guy.  He has made all of these decisions and surgeries much easier through his support.  Before appointments that he knows I get quite nervous for, he'll arrange for a date.  Here we are at Captian's Walk and Hagemeister Park (in which we found ourselves with a perfect heart shaped onion ring) before my final appointment. The weekend before surgery to keep my mind off things, we went out of town to visit some friends and go to a game. Post surgery he constantly comes to the rescue when I start things and realize that I cannot complete them.  He may over-estimate my ability to take care of our children soon after surgery, but he makes up for that with his cooking meals and cleaning while I "take it easy."  In addition to the time he has taken off of work for these things, he comes home every day at lunch to make sure that I have everything under control.  Thank you, Mitch.  I'm a lucky girl!

1 week later--lessons learned

It has been over a week now since my salpingectomy.  I am feeling good.  I've hit the point where the bruising is going away and the dermabond is getting itchy and falling off.  I love when this happens.  All this time my incisions have been closed with this clear glue.  The look pretty gross all ragged and bloody.  But then the glue starts to peel away from the skin and behind it is this magical little bitty pink line.  What was hideous turns out to be not that bad at all. Only one of the sites is still slightly painful.  It's the largest one right above my belly button where the largest of tools was used and the largest bruise was.

I have learned a lot of lessons from this surgery that I will take with me from now on:

• I will never take another surgery lightly.  I didn't think this one would be a big deal and because of that didn't plan well.  For any future surgery, I will not assume that my body will immediately bounce back. Whether under anethesia for 8 hours or 30 minutes,  my body needs time to get back to normal. 
• Even though I like to think I have a high pain tolerance,  if a doctor prescribes pain meds, it's an obvious sign that there will be pain involved and I should take them.  This was my biggest problem with this surgery.  For my mastectomy, I never woke up in intense pain.  I kept on top of the pain meds taking them round the clock for the first while because I knew the pain would be bad.  I should have done the same thing this time at least for the first day or two.  
• Just because I start feeling better, it doesn't mean you actually are back to normal.  On day 4 I posted that I really started to feel better.  Which led to me thinking that on Day 5 I could do a lot of things that I shouldn't have like vacuum, pull the hose out around the yard to water the flowers, or let the girls bike during our walk which I know leads to trouble when one little girl's legs just get too tired.  I knew that I have a lifting restriction of 8 pounds, but to me I justified it because pushing, pulling, or dragging is not lifting.  Silly me spent Day 6 regretting all the actions of Day 5.  I know better now.  I will be taking it easy more.  This is what happens in my house when I take it easy. One daughter dances and signs with the dog while the other sets up an obstacle course with every basket or box she can find while I read on the couch.  

Getting better now

Today is Day 3 and I think things are getting better now.  I slept much better last night.  When I woke up this morning, I was able to stand upright right away (the last two days that had been a struggle for awhile).  I am just taking tylenol now for pain.  We've taken two walks around the neighbor hood.  Unfortunately, Stella can't come yet because I am afraid she will pull and I won't be able to handle that yet.  I do look like kind of like a mess.  I found that compression on the bruised and swollen areas feels better.  But it doesn't look good, I am pretty much wearing a mumu over my exercise leggings.  If you are interested in checking out some graphic pictures of my incisions, click here.  I like to take pictures often so that I can see that things are getting better even when I feel like it isn't. But I don't want to force those uncomfortable to see them.  Right now, I think things are looking worse even though it's feeling better.  That seems to be the way things go with bruising though.

I think I was just too impatient the last few days and expected to be feeling fine way too soon.

Sleep

Last night was a rough night.  I could not find a way to sleep comfortably.  Some ways I tried I felt like I couldn't breathe because of intense shoulder pain.  If it tried rolling on my side, I felt like my insides were falling all over the place.  My back is sore from only being able to sleep on it. I can't take a deep breathe, laugh, hiccup, or cough without intense pain.  I didn't want to take pain meds, but definitely needed to.  I should have just taken more when I woke up during the night rather than trying to switch to sleeping in the recliner.

Thankfully, I posted on the FORCE page asking for advice and got some great tips.  The pain that I am feeling is most likely gas related.  Some of the CO2 used to inflate me during surgery is still inside causing this pain. I tried to be more active today as walking is said to help this gas dissipate faster.  So to celebrate Father's Day, we went for lunch at Curly's Pub in Lambeau and walked around the atrium a bit.  Mitch enjoyed his gift.  He finally started reading this blog again, so I'll give him a little feature.  He does think that he missed his calling as a competitive eater.

 

Then this afternoon we went for a walk on the DePere River Walk.  The girls loved seeing the pelicans.  I have a new respect for the work of the people on the locks after getting a chance to see it up close during our class field trip there.  They were busy manually turning everything the entire time we were there.  We then spent some time with my family tonight. Hopefully being active today (and not napping at all) will help for a better night of sleep tonight.

My thoughts so far

I will admit that it hasn't been as easy as I thought it was going to be.  There isn't a huge body of work out there on the "tubes only" surgery that I had.  Before my mastectomy, I read and read and read and knew exactly what to expect. For this one though, there are resources about other gynecological surgeries such as hysterectomy or resources about what Fallopian tube removal is like after ectopic pregnancies but nome of these seemed to match my situation. In my mind, I figured that women have their tubes tied in the doctors office, so removal of them can't be that much different. I honestly thought I would feel perfectly fine today and that around maybe grocery shopping or something.  I didn't think pain meds would be involved at all!  I probably should have read more about laparoscopic gynecological surgeries as no matter what you have removed, these robotic surgeries are quite similar.

Here is a recap:

The morning yesterday went well.  I was very impressed with how smoothly everything went at this hospital.  I had great nurses who never made me feel forgotten about like last time.   Right on time at 12:30 I rolled into surgery. I woke up in the recovery room in a lot of pain.  I did not expect that at all, but they quickly helped take care of that.  As I move onto another room I struggled more with nausea, dizziness, and more pain.  It was Friday afternoon and I hadn't eaten anything since Wednesday night., so some of these thing could be attributed to that.  I wanted to eat but could barely get 2 crackers down. I needed to eat something with the pain meds.  I'd feel like I was going to puke but was afraid it would really hurt and couldn't get myself upright without more pain.  They gave me something for the nausea and I was able to start feeling better but I was still so tired I could barely keep my eyes open.  At about 5:30 I was able to be discharged and we went home.  I had this long list of foods that I thought I would want first, but I really just ended up eating applesauce and sleeping th rest of the night.

Still this morning I have significant pain. It is all centralized around the incisions which are about belly button level. It is different than after c-sections because that incision is lower and I felt tugging and pulling whenever I would move. It feels kind of like I was punched or spin kicked in the stomach over and over.  It is tough getting comfortable or taking a deep breath more because of the bruising sort of pain. I don't know why I didn't think of this, it makes logical sense, but I have drainage similar to what it's like after having a baby. It shouldn't last long though they explained. I also have a rash on my back, neck, and chest.  I think I had a start of it yesterday after the miralax diet.  I have shooting pains in my shoulder as well because of the CO2 used to inflate me.

I am eating like normal though and can walk upright rather than hunched over like yesterday.  I will probably take a nap soon.

Today is going to be a good day

Today is going to be a good day because...

• Yesterday the Supreme Court ruled that genes cannot be patented.  For a full article check this link.  This is going to make it so much easier for people to get genetic testing! 
• It's Relay for Life day in Kewaunee and LOTS of family are getting together for it.
• My cousin posted a beautiful picture of her mom on the anniversary of her death 22 years ago yesterday. The girls came by the computer while I was looking at it and it gave me a great opportunity to tell them about her. It helped me explain to why I am going to have more "owies" and helped Aila in particular feel less worried about me going to the hospital today. 
• Bowel prep wasn't as awful as I expected.  It's still in the top three worst medical things I have ever had to do. I am really hungry though and learned that I will never tease my dad again about his post-colonoscopy meal choices.  I have quite a list of foods that I've been thinking about wanting first.  
• Speaking of food, I grabbed a hospital food menu for Mitch while I was in the waiting room last week.  Door County Fish boil is on the menu today.  I find this hilarious because Mitch hated the fish boil that we had for an anniversary dinner at White Gull Inn a few years ago.  He's the only person I've ever heard of who disliked a meal at White Gull.  Fitting that it's on the menu for him today.
• And finally I'm about to take my ovarian cancer risks down a notch. We're off to the hospital now!  I'm excited!

Cheers

Cheers, sort of...

Nothing to eat today except clear liquids and these goodies.

Surgery is on

I was cleared for surgery today.  The cardiologist agreed that my low heart rate is likely just a sign of good health.  At its lowest it was 34, but most other checks have been between 50 and 70.  Running pays off!  All of this monitoring my heart rate though has me very curious and interested in trying out a heart rate monitor to wear while running.  

Day of surgery--much easier this time

This time around the day of surgery will be much easier. We will arrive at the hospital mid morning for surgery prep.  I'll have to have the customary iv antibiotics and sign plenty of forms.  Just after noon I should be headed into surgery.  The procedure itself should take about a half hour.  The plan is to do everything laparoscopically with Dr. P.J. using the da Vinci robot for the surgery. My abdomen will be inflated with carbon dioxide gas so that they have room to work.  The robotic instruments will be inserted into 4-5 different small incisions.  My fallopian tubes along with the blood supply to them will be removed on both sides.  My ovaries will remain.  I will have small internal stitches.  He will do a visual check of my ovaries.  The removed tubes will be sent to pathology to make sure they were healthy.  The instruments will be removed and my abdomen will be allowed to deflate and the incisions will be closed up with a few more stitches.  I will then go into a recovery room where the anesthesia will wear off.  By dinner time we will be ready to head home.  I will not be able to drive for a week and I will have lifting restrictions for four weeks.

However, there are always some what ifs.  First, because I have had 2 c-sections, there is a small chance that I will have too much scar tissue to do this laparoscopically.  That would change the length of the surgery and recovery time after considerably.  Second, there is the chance that Dr. P.J. will see something while in surgery that looks suspicious.  In that case, he will remove whatever it is right away.

And my what if, that is probably the most important right now, is that I have not been cleared for surgery yet.  I thought everything was ready (surgeon, insurance, pre-op labs, work schedule, family schedule) but my pre-op EKG came back abnormal. My heart rate was abnormally low according to the nurse.  The anesthesiologist doesn't feel comfortable proceeding without clearance from a cardiologist first.  I am not at all worried about having heart issues.  I know that I don't.  I just have a low heart rate.  It's always been that way.  I wanted to make some easy money donating plasma in college and I was turned away because of it. I remember during my c-sections, they asked me "Are you all right" because my pulse was so slow.  I remember Dr. Colette coming in one morning after my mastectomy saying "31? What is with that?" So now I am praying that the cardiologists report will be approved by the anesthesiologist so that things can go as planned. I'm ready!

Pre-op appointment

I had my pre-op appoinment Friday. I will be having this surgery at a different hospital with another  doctor who is named Dr. J just like my plastic surgeon.  I think that I'll call this doctor Dr. P.J. so that I don't get them confused.  Mitch came with to hear all the details so that he can do a good job taking care of me afterward and making sure I stick to my post op restrictions.

We met with Dr. P.J. and his staff early on.  They showed us with more detail what the incisions will be like, what the day of surgery will be like, rules for recovery afterward, and answered all of my questions (even the ones about my toe).  I got the disappointing news that I would have to do "Bowel Prep" the day before surgery.  I thought that I was going to sneak through without having to do this, but no luck.  I will be spending June 13th, my first official day of summer vacation, chugging miralax and gatorade eliminating everything possible from my bowels.  YUCK!

Then I had to do all the pre-op tests (EKG, blood tests, and chest x-ray). This part took forever; I was worried for a while that I might not make it back to work on time!  We waited in the same waiting room that I've spent so much time in the past year for the CA125 blood tests that I have every 3 months.  Hopefully, this is the only super long wait we have and surgery day will be a breeze.

Just for fun, here's a picture that I found on my phone during the wait for labs. It was taken the day of the marathon.  It was a long day for her cheering us on, then waiting at the finish line to see my brother finish the full marathon.  She insisted though that she wasn't tired and didn't need to nap.  This is how we found her after she went to play in her room for about ten minutes. Notice the medal still around her neck.

Step 2A

As I eluded to on earlier posts, my mastectomy was just step 1 in reducing my risks for developing cancer because of the BRCA gene mutation I carry.  I am now onto step 2.  On June 14th I will be having a bilateral salpingectomy.  This will be the removal of both fallopian tubes.

All recommendations for women with BRCA mutations suggest the removal of ovaries and fallopian tubes before age 40. The is called salpingo-oopherectomy.  The removal of one's ovaries is not an easy undertaking (I'm not saying the mastectomy was either).  The loss of ovaries means loss of all hormones   This would be a good thing in some regards because most breast cancers are fueled by estrogen and if you don't have the organ in your body producing estrogen that would reduce your risks for developing cancer even further.  It would reduce my breast cancer risk from 5% to less than 1% and my ovarian cancer from 50% to 0%.

However, this puts you into immediate surgical menopause.  Most women slowly go through menopause letting your body adjust to the lack of hormones and those side effects in a somewhat gradual process. After having your ovaries removed your are thrown right into it often with intense side effects which include:

1. Hot flashes, flushes, night sweats and/or cold flashes, clammy feeling 
2. Irregular heart beat
3. Irritability
4. Mood swings, sudden tears
5. Trouble sleeping through the night (with or without night sweats)
6. Irregular periods; shorter, lighter periods; heavier periods, flooding; phantom periods, shorter cycles, longer cycles
7. Loss of libido 
8. Dry vagina 
9. Crashing fatigue
10. Anxiety, feeling ill at ease
11. Feelings of dread, apprehension, doom 
12. Difficulty concentrating, disorientation, mental confusion
13. Disturbing memory lapses
14. Incontinence, especially upon sneezing, laughing; urge incontinence 
15. Itchy, crawly skin 
16. Aching, sore joints, muscles and tendons 
17. Increased tension in muscles
18. Breast tenderness
19. Headache change: increase or decrease
20. Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
21. Sudden bouts of bloat
22. Depression 
23. Exacerbation of existing conditions
24. Increase in allergies
25. Weight gain 
26. Hair loss or thinning, head, pubic, or whole body; increase in facial hair
27. Dizziness, light-headedness, episodes of loss of balance
28. Changes in body odor
29. Electric shock sensation under the skin and in the head
30. Tingling in the extremities 
31. Gum problems, increased bleeding
32. Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor
33. Osteoporosis (after several years)
34. Changes in fingernails: softer, crack or break easier
35. Tinnitus: ringing in ears, bells, 'whooshing,' buzzing etc.  (source http://www.project-aware.org/Experience/symptoms.shtml

These are things that I am just not willing to put myself through yet at age 30.  Instead I've been watching some new research that is showing ovarian cancer is really starting in fallopian tubes and moving to the ovaries before it is diagnosed.  So this means removing fallopian tubes could prevent ovarian cancer.  This is not something widely accepted yet, but one doctor in the area agrees with the new research and has begun recommending this for women in my situation...not ready for oopherectomy yet, but worried about doing nothing.  

On June 14th, I will have my fallopian tubes removed (Step 2a) leaving my ovaries behind.  I will then join a registry of women through the University of Washington being monitored for the long term outcomes of a prophylactic salpingectomy.  The plan is to then remove my ovaries when I feel ready (Step 2b) later down the road.