Pathology showed no ovarian tissue on the small piece that Dr. Miller removed. Bummer. It was identified as a fibrovascular bundle. This is what he went looking for and what he removed. He believed that it contained ovarian tissue. Fingers crossed that the Lupron had suppressed the hormone so that it wouldn't show up on the pathology.
He found no endo. He had me wide open and there is very clearly no endo. We will repeat the bloodwork and consult a reproductive endocrinologist and setup a co-appointment. He also consulted another doctor in his practice and they agree that I'm not making sense. Imagine that! I'm his difficult child.
We'll wait 4 weeks to see if any of my estrogen symptoms return. If I start having symptoms again, we'll repeat the imaging and bloodwork to try to find out where it is coming from.
The mass that appeared on previous scans was nothing. He assumes that it was just the way it was laying and scar tissue on the first CT. On the most recent CT, when I had a "full fecal load", it must have been stretched out because it no longer looked like a mass.
My next visit with Dr. Miller is scheduled for next week. My hot flashes seem to be calming down a bit. I'm afraid that's because the estrogen is returning!
Monday, June 13, 2016
Surgery #6 May 13, 2016
My bowel prep was more successful than any other I've done (and I've tried them all), although not complete. It's a life goal! A clean colon is on my bucket list.
I managed to get all of my work done on Wednesday so that I could focus all of my Thursday energy on drinking fluids and succeeding at the bowel prep. This requires all of my love and devotion. My cocktail this time was the bottom shelf stuff. Magnesium citrate, the lemon limey salty clear "oral solution" that is sold over the counter. I found mine at Target for $1.02. I drank 3 ounces every 30 minutes and chased each dose with 8 ounces of water. Things didn't really start working for a few hours. Did I mention that I had a "Large Fecal Load" on my last CT? I'm full of shit.
It sort of worked. I never ran clear. No checkmark on the bucket list.
Friday, May 13, 2016
I arrived at York Hospital at 10:30 and quickly registered. Mom and I went into the pre-op room to get changed and an IV started. I followed protocol and wiped every square inch of my body with the Sage wipes. They are the devil to someone with my particular level of skin sensitivity, although I didn't know it at the time. Jason and Dad had avoided the ugly IV business and arrived in my pre-op space in time to see Dr. Miller. He joked that he couldn't see without his bi-focals. I'm glad that I get his humor, and that the da vinci robot has better magnification than his bi-focals!
Jason was updating my work girlies via text. He makes me smile. Even though I know that he was stressing, he managed to keep them giggling with his jokes. At 3:27 he wrote, "She is out of surgery. They did not have to cut her. The doctor thinks the "mass" they were seeing on the scans was the way they had re-shaped her colon from a prior surgery. He said there was very little endo, everything looked pretty good. There was a tiny piece of ovary, about the size of a pinky nail which he removed. Back to signing autographs in the waiting room. It never ends."
So back to the devil. Sage wipes are the devil. I awoke from anesthesia with flaming balls of fire on my skin. I was begging for Benadryl and ripping my skin to make the itch stop. Meanwhile, my insides hurt so bad that I was fighting hard not to vomit. "Time to walk honey girl!" Joe the nurse, no. I walked about 10 feet when the vomit-ey feeling hit. He suggested that I lean forward against the IV pole. It felt like my guts were flopping out of place. No more leaning forward for me! I was discharged right around my 23 hour maximum observation time after I had proven my ability to eat solid foods and pee like a champ!
The next few days consisted of pain meds, Zofran and benadryl every time the bell chimed! For about a week I had to be careful not to lean forward to avoid the feeling that my guts were spilling out. That feeling slowly passed! I went back to work a half day on Day 12. My follow-up with Dr. Miller was on Day 13.
On Day 14, I finally pooped and it lasted for several hours! I returned to work on Tuesday, May 31 ~ Day 18!
I managed to get all of my work done on Wednesday so that I could focus all of my Thursday energy on drinking fluids and succeeding at the bowel prep. This requires all of my love and devotion. My cocktail this time was the bottom shelf stuff. Magnesium citrate, the lemon limey salty clear "oral solution" that is sold over the counter. I found mine at Target for $1.02. I drank 3 ounces every 30 minutes and chased each dose with 8 ounces of water. Things didn't really start working for a few hours. Did I mention that I had a "Large Fecal Load" on my last CT? I'm full of shit.
It sort of worked. I never ran clear. No checkmark on the bucket list.
Friday, May 13, 2016
I arrived at York Hospital at 10:30 and quickly registered. Mom and I went into the pre-op room to get changed and an IV started. I followed protocol and wiped every square inch of my body with the Sage wipes. They are the devil to someone with my particular level of skin sensitivity, although I didn't know it at the time. Jason and Dad had avoided the ugly IV business and arrived in my pre-op space in time to see Dr. Miller. He joked that he couldn't see without his bi-focals. I'm glad that I get his humor, and that the da vinci robot has better magnification than his bi-focals!
Jason was updating my work girlies via text. He makes me smile. Even though I know that he was stressing, he managed to keep them giggling with his jokes. At 3:27 he wrote, "She is out of surgery. They did not have to cut her. The doctor thinks the "mass" they were seeing on the scans was the way they had re-shaped her colon from a prior surgery. He said there was very little endo, everything looked pretty good. There was a tiny piece of ovary, about the size of a pinky nail which he removed. Back to signing autographs in the waiting room. It never ends."
So back to the devil. Sage wipes are the devil. I awoke from anesthesia with flaming balls of fire on my skin. I was begging for Benadryl and ripping my skin to make the itch stop. Meanwhile, my insides hurt so bad that I was fighting hard not to vomit. "Time to walk honey girl!" Joe the nurse, no. I walked about 10 feet when the vomit-ey feeling hit. He suggested that I lean forward against the IV pole. It felt like my guts were flopping out of place. No more leaning forward for me! I was discharged right around my 23 hour maximum observation time after I had proven my ability to eat solid foods and pee like a champ!
The next few days consisted of pain meds, Zofran and benadryl every time the bell chimed! For about a week I had to be careful not to lean forward to avoid the feeling that my guts were spilling out. That feeling slowly passed! I went back to work a half day on Day 12. My follow-up with Dr. Miller was on Day 13.
On Day 14, I finally pooped and it lasted for several hours! I returned to work on Tuesday, May 31 ~ Day 18!
Saturday, January 23, 2016
Results ~ January 20, 2016
Hubby is cancer free! My dad went home from rehab. And I got the results of my CAT scan today!
Dr Miller confirmed that my colonoscopy results were fine.
The CAT scan confirmed the mass on my left side is on the bowel. There is another on the right side, higher up. My estrogen and FSH levels are "normal" for someone who actually has ovaries. For me, they are all wrong. He pulled my pathology from Sinai and his operative notes. Uterus, tubes and ovaries were removed intact. His notes indicate that he removed an extra 2 cm beyond each structure just to be safe.
So what does that mean?
He suggested that when he detached the ovary from the ovarian artery, the artery may have retracted and took some endometriosis or ovarian tissue with it.
He is proposing Lupron for 3 months to dry up the worst of the estrogen. Then surgery. The 3cm spot on my left side is on the colon so there’s always a possibility of needing to remove a portion. Surgery would be an open laparotomy down my left side so that there is easiest access to the colon. He believes that this is recurring endometriosis or an ovarian remnant.
I asked about delaying all of this a few months. He said that it can keep getting worse and could involve the bowel more. My questions for him are, 1. if I do the Lupron and it dries stuff up, is that stuff gone or just gone enough that he can’t see it and it could grow back. 2. after the Lupron, can he just do a laparoscopic surgery to see how bad it actually looks in there before deciding if I need the big one. A very unlikely possibility to rule out is that there is a type of ovarian cancer that makes its own estrogen. He is hopeful it’s not that, but he’s a cancer doctor so that’s always on his mind. My third question, I wonder if he can rule this out sooner without surgery?
Now I wait for the first lupron shot! I never thought that I would be going down this road again. It has been 10 years since I was on lupron and 10 years since my major surgery and colon resection!
Colonoscopy January 15, 2016
I found out in December that I would need a colonoscopy. They wanted to schedule it for December 28. I decided to wait into January, after hubby's PET scan results. I'm glad that I did because my dad ended up needing open heart surgery on December 28 and was the 9th person in York to receive a VAD.
My CAT scan on Tuesday, 1/12 went well. Fairly uneventful with the exception of meeting some cool people with interesting ties to my life. The tech who placed my IV lives in my neighborhood, there were two CAT scan techs. One is related to a co-worker and the other shared my birthday. A quick visit to Mom & Dad who were living at the Rehab Hospital next door, and I was back to work!
Given my track record of failing miserably at bowel preps, I began taking a full dose of Miralax every evening for 10 days prior to my colonoscopy and again on the morning of my prep. The stool at this point was pencil-thin, which was very concerning to me. This can indicate several things including narrowing of the bowel due to scar tissue and a stricture. Things were moving well. I was confident! I've always started the prescribed drink at noon the day before a procedure. Against my better judgment, I began drinking at 4:00 according to the instructions given. I did my best and had finished more than half of the gallon drink. I was feeling ill and had the shakes so I decided to rest and cover up. I FELL ASLEEP! I had every intention of drinking a lot more water even if I couldn't continue the prep. No drinks after midnight, and I woke up at 2:30 a.m. Ugh! I emptied what I had left in me and took one big gulp of water.
Despite my best intentions, I once again did not "run clear." It still remains one of my life goals!
I was a lucky girl and was able to have two moms with me that day. My mom came from rehab and my mother-in-law drove me. Jason's PET scan the week before was cancelled when the machine broke down while he was in it. He was rescheduled for the same time as my colonoscopy. My surgeon was able to complete the scope even though I was not clean. He found no polyps and no narrowing. I was pleasantly surprised! Follow-up with Dr. Miller on 1/20!
My CAT scan on Tuesday, 1/12 went well. Fairly uneventful with the exception of meeting some cool people with interesting ties to my life. The tech who placed my IV lives in my neighborhood, there were two CAT scan techs. One is related to a co-worker and the other shared my birthday. A quick visit to Mom & Dad who were living at the Rehab Hospital next door, and I was back to work!
Given my track record of failing miserably at bowel preps, I began taking a full dose of Miralax every evening for 10 days prior to my colonoscopy and again on the morning of my prep. The stool at this point was pencil-thin, which was very concerning to me. This can indicate several things including narrowing of the bowel due to scar tissue and a stricture. Things were moving well. I was confident! I've always started the prescribed drink at noon the day before a procedure. Against my better judgment, I began drinking at 4:00 according to the instructions given. I did my best and had finished more than half of the gallon drink. I was feeling ill and had the shakes so I decided to rest and cover up. I FELL ASLEEP! I had every intention of drinking a lot more water even if I couldn't continue the prep. No drinks after midnight, and I woke up at 2:30 a.m. Ugh! I emptied what I had left in me and took one big gulp of water.
Despite my best intentions, I once again did not "run clear." It still remains one of my life goals!
I was a lucky girl and was able to have two moms with me that day. My mom came from rehab and my mother-in-law drove me. Jason's PET scan the week before was cancelled when the machine broke down while he was in it. He was rescheduled for the same time as my colonoscopy. My surgeon was able to complete the scope even though I was not clean. He found no polyps and no narrowing. I was pleasantly surprised! Follow-up with Dr. Miller on 1/20!
Wednesday, January 6, 2016
It's not over, yet! January 6, 2016
I've been having some pain and spotting. I shouldn't be having either!
The pain is localized to my lower left quadrant and radiates through to my lower left back. It's a burning pain that seems to be directly related to my constipation troubles. Having a bowel movement or urinating during one of these flares is very painful. Just like old times, I've had two unexplained episodes with fever and abdominal aching. My constipation seems to be getting more frequent, taking longer to resolve and not responding to days worth of laxatives.
The spotting started in June 2015. Since I have no uterus, no ovaries, no tubes and most importantly no cervix, this was concerning. There was a lot going on in our lives this year so I attributed it to stress.
The spotting was typically a transparent brownish color. In September I had a one-time large amount of a syrupy rust brown discharge very similar to an endometrioma that I had years ago. In December I had actual red blood for the first time. I made an appointment immediately! I saw Dr. Naymick who said that all of my tissue looked normal. No obvious reason for the bleeding. He recommended a colonoscopy and an ultrasound.
The ultrasound was interesting. The tech was really confused that I was claiming to have had all of my parts removed since she was seeing a very defined 3 cm structure on my left side that she believed to be an ovary! She stepped out and came back with a doctor. Dr. Neiswender suspected either ovarian remnant syndrome or a peritoneal cyst, but this was most definitely not an entirely missed ovary!
I had a blood test that same day in mi-December 2015. Ovarian remnant syndrome has many symptoms including painful bowel movements and urination. Estrogen level should be less than 30, mine was 303. I saw Dr. Naymick again. He suggested that Dr. Miller is where I should go next. Dejavu anyone? If this ovarian remnant needs to be removed, he's the most qualified to do it!
I saw Dr. Miller today, January 6, 2016. Happy New Year! He isn’t convinced that my high estrogen is an ovarian remnant, there may be leftover estrogen in my body. He’s considering a month or two of Lupron to squash any remaining estrogen and see if it lowers the numbers. On this day, surgery is a last option. I agree!
I had another blood test to see if the estrogen number has changed. He’s glad that I’ve scheduled the colonoscopy because that will show if the constipation is getting worse and more painful because of scar tissue narrowing my colon. I think it's called a stricture. If so, he said that Dr. Nicholson can use a balloon-thing to stretch it out during the colonoscopy. If I have a structure and if the balloon doesn't work, he may consider another colon resection of the damaged area. That's a lot of ifs that I'm not too concerned about right now. IF I need colonf surgery, then Dr. Miller would also remove any remaining endometriosis (hopefully none) and the possible ovarian remnant!
Dr. Miller also wants to rule out any scar tissue on my ureter. If there is scar tissue, it could be causing a backup and enlargement of my kidney. Next week I'll have a CAT scan to look at the kidney and anything else suspicious and a colonoscopy!
Saturday, January 4, 2014
Aftermath ~ home edition
The first few days (weeks) at home are a blur. I didn't take good notes. I set alarms on my phone for the medicines. I was taking 3 iron per day, 600 mg of Ibuprofen and a stool softener. Jason was home Saturday and Sunday. Mom & Dad came Monday to look after me. I used a cane to get in and out of the sofa for the first few days. Mom organized my tupperwear cupboard!
I had my first hot flash exactly 1 week after surgery. It was bad. It was scary. My blood pressure spiked to 155/95, my chest pounded. It felt like a heart attack, or a panic attack. Jason wasn't home so I called my parents. Mom talked me down from the ledge. This was normal! I felt better instantly! Shannon came over on her way home from work and kept me company to give my Dad some peace of mind. Shannon spent the night on Friday, but I didn't have any more flashes.
Shannon and Izy came for the day on Friday. We watched cartoons and had lunch. I also had a huge support network from work. They brought many dinners!
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| Staples in the belly, plus left side incisions |
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| Right side incisions |
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| Allergy to the glue in the bandages |
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| The is the right side that needed so much work! |
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| Blister from adhesive allergy |
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| My niece watching cartoons! |
Shannon and Izy came for the day on Friday. We watched cartoons and had lunch. I also had a huge support network from work. They brought many dinners!
Aftermath ~ hospital edition
October 10, 2013
I got my room at 7:30 p.m. I had been in recovery for so long, I had ordered a meal there. It arrived just before I was taken to my room so we took it along. The beef broth and jello tasted so good. And hospital ginger ale. So good! Family headed home now that I'm in a room.
At 8:30, Dr. Miller visited. He said that it was a lot worse in there than he had expected. It was stuck together on the back side which he hadn't seen with the diagnostic lap. There was endo on the bowel and a great deal of scar tissue on the right side. He really worked hard to get it all. I can tell. My right side really hurts!
The doctor's original prognosis was to stay overnight and head home first thing in the morning. I knew that wasn't going to work in my case, especially after he worked so hard on the endo and scar tissue excision.
October 11, 2013
I was out of bed and into a chair by 6:00 a.m. I had taken a bird bath by myself and the nurse helped me into a new gown. The doctor on the floor came and okayed solid foods. I immediately ordered breakfast ~ omelet with onions, mushrooms and cheese, cinnamon roll, pears and lemonade. I was hungry! Family struggled through heavy downpours and flooding to get to Baltimore this morning!
There was one male nurse overnight. At 7:00 a.m., he removed the catheter. Quickly. With very little warning and no chance to prepare myself, out it came. Ouch! Blood levels are a little low so new nurse Gina gave magnesium and electrolytes via IV, along with oxycodone. Started peeing at 11:00 a.m. with Mom's help. Have to put the bed the whole way up to get up. Stomach muscles hurt when I try to sit up on my own. Took a walk around the nurses desk at 11:00 and they removed the IV. Vitals are good!
At 6:00 p.m. more oxycodone and benadryl for itching. Guess I am officially allergic to magnesium! I'm sleeping a lot. Family heads home through the heavy rains and flooding!
October 12, 2013
Vitals look good. Doctor on the floor stops in and says that Dr. Miller will be in to discharge! We were on our way home before noon!
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