Ellie Wren

What a long and winding road!  It has been over 3 years since my diagnosis with cervical cancer and almost 3 years since my radical trachelectomy in July of 2011.

After my last post I became pregnant following our second IVF procedure using a frozen transfer.  I miscarried at ~8 weeks in August 2012 and then had to wait about 5 months to try again.  We decided since every test during our many years of infertility came back normal and the cause of infertility was complete unknown that we would try a natural frozen transfer (no hormone injections for me).

Our natural transfer was done January 2013 and it worked.  We were exceptionally cautious with our excitement after having had 2 miscarriages.   I had some early spotting which was very distressing but it stopped quickly when they took me off aspirin at about 9 weeks.  We chose to do the new cell-free DNA testing which is a completely non-invasive screening and found out that I was carrying a healthy little girl at 13 weeks gestation!

Being high risk and s/p radical trachelectomy with a cerclage in place I prepared myself for what I thought would be inevitable complications (bed rest, pre-term delivery, etc).  In the end, my cervix and the cerclage made it for the long haul which I don't think is typical.  We made it to 39 weeks and had a scheduled C-section without having had a single contraction of any kind.  I can see why planned c-sections have become popular though it would not have been my choice if it wasn't mandatory.  My recovery from c-section was MUCH easier than recovering from the radical trachelectomy.  Also, the chronic nerve pain I had for over a year after the trachelectomy disappeared as soon as I became pregnant and has not returned to date (8 months after birth).

I am hoping this outcome gives people who are dealing with a recent diagnosis of cervical cancer and still wish to have a child a light at the end of the tunnel.  To have a fertility sparing surgery available for this condition that affects mainly young women in their child bearing years is invaluable.  I am so glad we didn't let fear cloud our decision and were able to find an excellent surgeon to treat my cancer AND preserve our chance of having a child.  We were very close to giving up our efforts to have a baby and preparing to move forward with our life together as a child free man and wife.  Now of course I can't imagine our life without our little stinker.  Today is our 10th anniversary and Ellie is sleeping soundly after our anniversary breakfast.  What an adventure life can be.

Without further ado, meet Ellie Wren:

Here is to the light at the end!

Thanks for reading.

AC

Feeling Better Leads to Long Overdue Updates...

So I was corresponding to a couple of women who were going through the same thing as I did about a year ago and realized I got to feeling better and got busy with work and life and never updated my blog.  So it goes!

I am now 1 year post-op and feeling great.  Any residual minor side-effects of the surgery are now just my "norm".  The only things to mention are a little difficulty emptying my bladder without effort and some mild lymph swelling in my pelvis/inner thigh very rarely with only very mild nerve pain or "twinges" at times.  It is hard to do the same intensity of workout that I was doing a year ago but low intensity exercise like walking/hiking/cycling are no problem whatsoever.

Let me go back and fill in the missing time:

My next follow-up and first pap smear was on December 6th, the day before my 35th birthday.  My doctor surprised me and gave me the green light to go ahead with fertility treatment again if the pap was clean because everything looked perfect on my exam.  GREAT Birthday present!!!  I thought he wanted to wait until at least 2 paps came back clean which would have meant another 3 months wait... A few days later I got the results and the pap was completely normal - no abnormal cells.

So we went ahead and started the process with the fertility clinic once again.  Long story short...  I made it through one cycle of IVF and they were able to get LOTS of mature eggs and we got a total of 6 high quality blastocysts.  My fresh transfer didn't work but my doctor thought it was because I responded so strongly to all the medications and hyperstimulated so my uterine lining was twice as thick as what is ideal...  So now we have 5 "snow babies" and five more tries.  I'm hopeful since he thinks the frozen transfers may be more successful for me.

As far as my nerve pain and difficulty sitting, by 3 months I had some days that were pain free and by the 4th and 5th month I had days or weeks at a time without much pain.  I would say month 6 was when I really started to feel normal (or very close to it).

I have had two more pap smears in March & June and both were CLEAR!!  They will continue doing a pap smear every 3 months for 2 years.

I may have more news soon but I wanted to update on my recovery time-line in case anyone was curious...

Life is good.
Cheers!

2 months post-op follow-up, August 30th 2011

I went into this visit unsure of exactly what would be involved and whether I would be getting a smear to check for dysplasia.

It turns out it was mainly a pelvic exam and the doctor examined my incisions and used the speculum to take a look at how I was healing.  He was happy with how things looked and just mentioned that I had a bit of granulomatous tissue which is an excess healing response that should resolve on its own but may cause a little bit of spotting.

He seemed a little surprised but glad to hear I had already had two normal periods since my surgery (my first period was 3 weeks after my surgery and aside from worse cramping than usual was normal).  He said that was a great sign and means my ovaries are working normally. 

After abstaining from any sex for 2 months we got the go-ahead that it would be safe at this point but to take it nice and easy.  I had a lot more soreness in my pelvis and legs after this visit so we waited a few more days to try it out.  I was nicely surprised that I didn't have any discomfort which was a load off my mind!

So at 2 months I still have some mild abdominal pain that comes and goes but was told this was normal due to residual inflammation and healing.  My doctor also said it was a good sign that I still have some nerve pain down the inner thigh (rather than just numbness) because he thinks that means the nerves are still working and this should go away with time.

I am still more comfortable standing at work as I get much more nerve pain in my legs when I sit for long periods. I am also much more comfortable in dresses and have not worn pants much since the surgery because of the discomfort in my abdomen with the extra pressure from pants/shorts.

I have started getting acupuncture which seemed to really help with the nerve pain last week.  I have several more sessions in the next few weeks so may have a better idea of whether it is helping.

So now we wait 6 months and need two normal smears before we get the go ahead to try to get pregnant... The next appointment is a day before my 35th Birthday and I am hopeful that we will get good news.

Plateau - August 4, 2011

Tomorrow will be 4 weeks since my trachelectomy. I am doing well enough that I'm getting impatient to be back to 100%. I have been back to work a couple of mornings this week and had more fatigue and pain than I had hoped at this point. Overall there are good and not so good days but I am sleeping well and able to do all the basic activities.

Current Status at week 4:

-I would guess I'm at about 70% on the road to full recovery...

Residual symptoms/observations:

-Mild to moderate nerve pain from pelvis down inner thigh (left

-Mild abdominal pain/discomfort which worsens with twisting movements and long periods sitting in normal chairs or hard benches. Using a heating pad really helps with this.

-Two to 3 pounds of residual lymph fluid/swelling in abdomen. MUCH improved from initial 15 pounds of fluid swelling. NOTE: most of my pants still do NOT fit - DRESSES have been my main clothing item since the surgery due to swelling and abdominal pain/tenderness

-Mild tenderness at incisions (mainly the larger incision on the midline above my belly button).

-bruising/tenderness of pelvic bones (most noticeable with accidental contact or palpation)

-Inability to bend at the waste to tie shoes, paint toenails, etcetera.

-Impatience with recovery process. Now that I am feeling better I have gotten bit frustrated with what I perceive as a plateau. I want to be back to normal already but this feeling makes way quickly to thankfulness that my outcome so far has been positive and all of these little symptoms will slowly fade away.

Being back at work next week my goal is to take it a day at a time and keep stress to a minimum. Wish me luck:)

Results - Day 11 follow up July 19, 2011

It feels like we won the cancer lottery today! My final pathology showed clear margins and negative lymph nodes and we thank our lucky stars. What a feeling of relief and happiness.

We also confirmed all of my symptoms are normal for the most part although I experienced more lymph fluid edema due to my increased water intake (not recommended). Dr. G. confirmed it is okay to ice the perineal area and that walking/activity is good but can cause more swelling so should be balanced with equal time with my feet elevated.

Pearls:

• Don't drink too much water! As in my case this will actually make the lymph edema worse. (I had NO idea and was drinking huge amounts of water to prevent constipation and thinking it would decrease risk of urinary tract infection with the catheter)
• You may be able to drive as long as you're not on certain pain medications
• You may be able to work out as long as you don't feel pain (get the okay from your doctor!)

The next follow up will be 6 weeks from today in late August. I am sure some nervousness will precede this visit but for now I should sleep like a baby tonight and I will make the most of tomorrow!

Day 10 post Robotic Radical Trachelectomy and Lymphadenectomy

I am now at day 10 after surgical removal of my cervix, parametrium, and pelvic lymph nodes and awaiting a followup tomorrow where I will receive information on the final pathology and whether the margins and my lymph nodes were clear. Today has been a good day aside from the nightmare that awoke me this morning. I have done pretty well focusing on recovering from surgery and not worrying about what is out of my control but in the dream the doctor called to tell me they suspected the cancer had moved to my side wall. I have heard these nagging worries described as "cancer brain" by some others posting online.

This is what cancer brain looks like:

normal right?

I decided to write this blog about my experience because of the rarity of this new less radical surgery for cervical cancer and the fact that I found very few posts online and those I did find were pretty scary - I think many people write about bad outcomes. I don't know if my case falls into the norm for those who go through this procedure but I had no idea what to expect and thought if anyone was looking for information this blog might come in handy. I hope someone finds the information useful!

Making Ice-pack underwear

You will need diapers (I used the 8-14lb size)
Cut at the edge of the absorbent padding and use your hand to create an opening throughout the length of
the diaper that you can use to insert the ice.

Bagged ice worked better than ice cubes because it 

was smaller and round so it could be pushed farther

 into the diaper.

Voila!!! - fold over or cut the flaps of the diaper and 

just place it in a pair of underwear (to hold it in place) 

and you have an awesome ice-pack which will last

hours and as the ice melts the absorbent lining of the 

diaper will absorb the water!!

This awesome recommendation from my friend and 

sister was what allowed me to walk the first several 

weeks after my surgery.