Post Surgery 12 Days

     Got my biopsy report back. All good. No cancer.

Post Surgery, 11 Days

     Started the morning feeling tired and depleted. No energy. No get up and go. But ended the day on a great note. The reason was because I started using the treadmill. I did two 10 minute sessions. Made me feel just great. I told myself that I would walk for only a minute or two. Better when there are no expectations.

     Also was able to cook a full course dinner tonight and clean up the kitchen afterwards. May seem like a small accomplishment. But earlier in the week I was having trouble making myself even the most simplest of meals. Staying in bed hungry rather than venture downstairs for something to eat.

     Tomorrow's goal is simple. Three sessions of 10 minutes on the treadmill. I will spread it out through the day. Will work my way up until I am doing an hour spread through the day. This treadmill has turned out to be a really good way to build my strength back up.

     Thinking about one of the purposes of this Blog. I am a woman born with the genetic mutation that causes several cancers. I just found this out last year. It is the BRCA2 gene mutation. It doesn't mean I will definitely get cancer, but there is a high probability. This gene is actually responsible for finding cancer cells and getting rid of them. However the mutation of this gene prevents it from doing this important job.

     I am very health conscience. I eat tons of fruits and vegetables. Little meat. Lots of vegan. Low fat. Don't smoke. Exercise. Walk. Run. Lift weights. Hike. Basketball. Yoga... Here's the question.  Are health habits enough to override gene mutations? Or does it not matter what you do health wise because your genes are going to do what they are going to do. And we will find out...

     So getting through my surgery. Total hysterectomy. Not because they found anything. Not because I was having any kind of issues. Simply as a preventative because I have this gene mutation. Was this the right thing to do? May never know.

     Interesting tidbit. This was completely covered by insurance. Having the BRCA2 gene mutation is in itself a diagnoses. This surgery was recommended to me by several different doctors.

     So here I am. Post surgery. Starting to feel better. I feel like I got this behind me but wondering what the future holds. My doctor is now asking about mastectomy. Oh my. If I do, it will be a few years. In the mean time I have to be very diligent about checkups and monitoring symptoms. This is literally a life time struggle.

Post Surgery, Day 10

     Well things are not going nearly as quickly as I would have liked. The bloating is starting to go away now and that is confirmed with losing a few pounds on the scale. So that part is good. Just left with this terrible exhaustion. Like walking for more than five minutes is difficult. I was slightly anemic after the surgery from blood loss.  I was 13 before surgery and 10.6 after surgery. The doctor called that minimal blood loss. So not really tired from blood loss. Could be from the blood thinner shots. Or just from the trauma of the surgery.

     One big improvement is that I now can sleep on my side. I was only able to sleep on my back while my stomach was all bloated out. This is a great deal more comfortable.

     I was able to sneeze and not fear ripping open my insides. I held back dozens of sneezes this week. I think I am in the clear for sneezing now.

     Walking is coming along very slowly. My husband bought a treadmill for my rehab and I have yet to even step on it. Exhausted just from walking around the living room. Will maybe try some time this weekend.

     Still haven't gotten the biopsy back yet. Trying to stay positive. Hard to do.

     Had my best eating day today. Ate very well and was not queasy at all. Got in lots of fruits and veggies as well as protein.

Post Surgery Day 6. Constant Companions

     From the minute I came home from the hospital my pets have surrounded me with their healing unconditional love. There is always one, two or even three of them in bed with me.

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Post surgery day 6

     Well almost a week since the surgery and feeling a bit better. The major complaint is still the bloating in my stomach. Literally looks and feels like I'm 5 months pregnant. This makes it difficult to eat drink or walk very far. It does seem like it has gone down somewhat. I read that this could take several weeks to go away.

     The only other annoyance is that I have to have my husband give me a shot of blood thinners every morning. It was very hard the first time but now is quite easy. It is amazing what you can get used to. I have to take them because I had a blood clot after my last surgery, which was a thyroidectomy.

First Days at home

     My surgery was on Wednesday. Today is Sunday. This is the first day that I felt good enough to type.

     Every movement hurt. They gave me a prescription for oxycontin. I did not fill it. Not only do I want to avoid these drugs but they also make me totally loopy and severely constipated. Nope not doing it. I'll stick with Tylenol to take the edge off.

     Me and my daughter have been binge watching 'The Good Place". This was truly a life saver and took my mind off of my body.

     Taking blood thinners in the form of a shot. This is to prevent another DVT aka blood clot. I had a blood clot in my leg the last time I had a surgery which was my thyroidectomy. It happened 2 days after that surgery. Not taking any chances. The only thing is, is that  my husband had to give the shots. He stepped up to the plate. The first time was a little hard for him but I think it's ok now.

     So feeling a lot better now except for this bloating of my entire stomach. I literally gained 4 pounds. They said that this should go away in a few weeks.

     Been trying to take small walks. It feels pretty good but then I get really tired. I'll have to build up slowly. Running will have to be on hold for several weeks. Not allowed to lift anything heavy.

Hospital recovery

     Very out of it the first day. It was now later in the afternoon before I was really awake and alert. The usual parade of nurses and aids taking blood and vitals. I noticed that I had a catheter for my bladder to pee in a bag. Didn't really bother me all that much in the beginning. Later it was quite irritating.

     I received lunch but was barely able to eat it due to lack of appetite. But really it was foods that could potentially flare my colon. I wasn't taking a chance.  As a safety precaution I had brought my own snacks. I ended up eating a peanut butter breakfast bar and some applesauce that I had.

     Saw both the doctor and the physician assistant to check on my belly. All looked good. My belly was starting to swell up quite a bit. I was told that it was gas and also fluid that surrounds the organs to protect them. I looked about four months pregnant.

     Getting in and out of the bed was pretty tough but got easier with time. For the first day I had to have help getting to the bathroom. I was a fall risk. They also wanted to verify that I was able to pee so the collected it in a plastic cup and measured out come. Taking out the catheter was not fun. The nurse pulled it out pretty quickly. I was scared to have my first pee but it turned out ok and did not hurt.

     Stayed over one night to make sure everything went ok. I was able to leave the next day! Happy to go home.

Surgery

     Well here I am on the other side, post surgery. Basically a few rough days but starting to feel functional after only 3 days. And here is how it all went down and what to expect from this surgery.

     We arrived at the hospital at 7:00. Surgery was scheduled for 9. Lots of prep stuff. The first thing that they did was take a urine sample to test for pregnancy. Well I have been through menopause so of course that was negative.

     Then on to the pre-op room to get ready for surgery. The anesthesia nurse was able to get the Cather in right away. He used a small needle usually reserved for children. It worked nice.

     Very professional. and experienced staff. Dia did my blood and got it on the first try. Maybe my veins aren't that bad. Maybe I just need skilled people to do it.

     Next they went through tons of questions, current meds, address, phone number,...

     They gave me as wipe for my belly. Just killing more germs.

     They put me under a special blanket. They like people to be nice and warm before surgery. Not sure the reason for that but I liked it a lot.
 
     Talked to the doctor about the procedure. He needed me to fully articulate what I was having done. Yet another layer of protection.

     I reminded him about the anti clotting drugs and the prednisone to follow surgery.

     Then Dave, the anesthesia nurse, when he was going to give me the shot. He told me he was ready and put it through the IV. That was the last thing I remember until I woke up in the recovery room.

colon cleanse

     Today has been a fun day. Apparently they want you to colon cleanse the day before surgery. Similar to colon cleansing for a colonoscopy. This was quite a bit more gentle than the cleanses I have had in the past. This one consisted of taking and entire 8 ounce bottle of Miralax powder and drinking it over a four hour period. It is mixed with juice or gatorade.  It worked.

     There are several reasons this needs to be done:
 
     *The ick factor. Self explanatory.

     *The need to prevent infection. This is really important.

     *In case he sees something else that needs to come out. It's possible that while he is taking things out he could notice some unhealthy or tumorous tissues on or around the colon.

     One important note. PreparationH wiped have been an enormous help.

   

   

Anxieties

Ok surgery is only days away now and these are a few of the concerns on my mind:

* I have Crohn's disease. It's under control through diet. I don't take medicine for it. Well the surgeon told me that the surgery would definitely flare up my Crohn's. I 'll be taking antibiotics for sure. Probably the pain medicine will make me constipated and that's a whole other issue. The last time I had surgery was when I had my thyroid out for thyroid cancer. I was flared for months afterwards. Not looking forward to that. I also apparently have to take tons of laxative to clean out my colon to prepare for surgery. This might flare it up too. The surgeon did say that he could give me steroids following the surgery to calm the flare. I have to remember to remind him.

* I also had a blood clot a few days after my last surgery. It was most likely due to the fact that I was still on birth control. I had asked my surgeon about it and he didn't think that it would be a problem. It was Neuva ring. Maybe he thought that it was a mechanical device and didn't know about the hormones it releases. I should have stopped anyhow as a precaution but I didn't. So 2 days after surgery I got a blood clot in my leg. I was lucky that it didn't travel to my brain or heart. I was put on blood thinners which flared my Crohn's up even more.  This surgeon said that he will give me a shot right after the surgery to prevent a blood clot. However my colon will not be happy about it.

* I have also recently been diagnosed with Parkinson's disease. A lot of diseases for one person. Well the doctor said that it would definitely flare that up as well. Yay.

* I have had to go off all of my food supplements and vitamins 2 weeks prior to surgery. A lot of these supplements help my Crohn's and Parkinson's stay in check. I'm feeling the difference and will be happy to start taking them right after the surgery.

* Not as big of a deal but not looking forward to getting the catheter. Because I am such a "tough stick" it may take a while. I am going to ask for the most experienced person right away to hopefully save myself some pain.

Well, will see how it goes.

Pre-testing

     Well now that I am scheduled for surgery February  13th I have had to get a lot of pre-testing done. Some of these things are a good idea anyhow just for general health. Here is what I have had:

EKG 12 lead (heart)
CBC
metabolic panel
chest xray
CA125 (a marker for ovarian cancer)
pelvic sonogram

Everything came out good.

At least this lessons the risk of anything happening during surgery.

The oncology gynecologist

     My next stop was the oncology gynecologist to talk about taking out my ovaries. There are a few things that can be done to screen for ovarian cancer. These include a sonogram and a ca125 blood test. The problem with these tests is that they are not always accurate. They may not pick up on everything.

     I had been told by my genetic counselor that they usually take out the ovaries and leave the uterus. While you are still under anesthesia they exam the ovaries under a microscope. If they see anything suspicious they take out the tubes and uterus as well.

     I am 56 years old. I have two daughters. I am past menopause. I don't need my ovaries or uterus for that matter.

      I visited Dr K the oncology gynecologist. He told me that because of the BRCA2 gene mutation, he would take out everything. He said that cancer can start anywhere, including the tubes and uterus. Best to get rid of all of it. My risk would be reduced to 2 percent.

      I am scheduled to undergo surgery February 13th. Hopefully all will go well.

   

Breast MRI

     A breast MRI is a lot more involved than I thought it would be. First step was to get the catheter into my vein so I could be injected with dye. I am a "tough stick". This means that they have a hard time getting blood from me. The catheter was even harder.

     One nurse asked me if I was clenching my muscles when they stuck me, subconsciously pushing the needle out. Wow. I am not doing anything. Nice way to blame me for them having a hard time. Another nurse tried. He stuck me several times and nothing happened. Finally they got "Scott" who was the head of the department. He got it done in one try.

     Time for the MRI. First they asked me to pee. Apparently this was going to take about 45 minutes. There was a table that had two openings in it. Two holes cut into the table with netting. It looked like two basketball hoops hanging from the table where my breasts would go and hang from the table. It was kind of awkward getting onto the table. And I don't have a lot to "hang".

     The MRI took as long as they said. The machine makes tons of weird noises, clicks and bangs. It was a bit uncomfortable holding my position for this long period of time. I thought my neck and shoulders were going to be really sore. But it turned out to be fine. Finally that was done. Now had to wait for the results.

     The MRI can pick up things that the mammogram cannot pick up. This can also cause a lot of false positives. It can pick up on things that are not really there and cause fear for no reason. Sure enough mine came back with an area that was a bit "different" than the surrounding  area. Was this something? Was it just the MRI picking up on things that were not really there? To find out I was scheduled for a MRI needle guided biopsy.

     A MRI needle guided biopsy is just what it sounds like. They insert a needle into the area of the breast that is suspicious while you are laying in the MRI machine. In this way they can get to the very specific area a bit easier.

     I needed the catheter again. Great. This time I got Scott. He had not been there for the previous MRI. He got it in one try. Very grateful for that.

     Back into the MRI machine. Another series of pictures. Another 45 minutes. Then came the biopsy. The doctor was great. She very effectively numbed the area. When she inserted the needle I felt some pressure but no pain. Another nurse stayed with me during the biopsy. She talked to me and rubbed my back while making sure that I was calm and didn't move during the procedure. Not that I could go anywhere anyhow. My breast was locked into position with a device similar to a mammogram.

     Finally that was done and I just had to wait for the results. Turns out it was normal tissue. Just a bit thicker. Ok. One more thing done.

     Would it have been better to skip the MRI and save myself the pain and anxiety? Maybe. But what if there had been something there? I wouldn't have known about until a year later. By then it could have been much more advanced.

     Ok, breasts done for a year. May have breast surgery down the road. But good for now.
On to my ovaries.

Mammogram

     I had the standard mammogram. The usual smash in both directions. I had had many mammograms before. Not usually too nervous. But now knowing that I had this specific gene mutation I was quite apprehensive. I am also getting up in age. I was trying to think of how old my mom and my grandmother were when they got diagnosed. I think they were both in their early 60's. I am presently 56.

     The mammogram came back normal. Good for a year. But I still needed to do the breast MRI.

A trip to the dermatologist

     My next stop was to the dermatologist.  Another risk carried with this gene is melanoma. I have a dark complexion so never really thought of this as a risk. I only used a tanning booth a few times before I got married. And I hardly ever sun bathed. I would just lay in the sun enough to get warm. I can count on one hand the times that I had a sun burn.

     This was just not something on my radar. Well it is now. I have now have an increased chance of getting melanoma just because of this lovely gene. So I went.

     The doctor was very nice. She checked everywhere. And I do mean everywhere. In the end she did take one biopsy from my back. She said it just looked slightly different than the rest of the moles or freckles on my back. Had to wait two weeks but it came back negative for cancer. Just an "irritated mole". Ok good for a year.

     Next stop was really fun. Breast mammogram and MRI.

The genetic counselor

     I met with Kyla the genetic counselor. She had a very upbeat personality and put me at ease right away. She suggested that we do another test to verify the results. Then she told me the statistics. One thing that was actually on my side was my age. I am 56 years old. She explained that the older you get without getting these cancers, the less chance you had of getting them. Kind of the opposite of non-genetic cancers. These cancers increase with age.

     She gave me a list of doctors to see and procedures to take. This was going to be a long process. These included getting a breast MRI, hysterectomy and a visit to the dermatologist for a checkup. I had some work to do.

STEP 1 talking to my doctor

     The first thing I did was call my doctor. I wasn't sure what to do with this information. Should I worry or not? Do I need other tests? Is it already too late?

     My doctor told me about the seriousness  of this gene mutation. Apparently it meant that I had an 80 percent chance of getting breast cancer in my lifetime. I also had a 40 percent chance of getting ovarian cancer. And I found out later that this gene mutation is also responsible for pancreatic cancer and melanoma as well as some other cancers. Wow. Great. There had been some instances of pancreatic cancer in my mom's family. Maybe they had the gene mutation.

     Then my doctor went on to tell me what they do when they find this mutation. They suggest a total hysterectomy and mastectomy. This seemed insane to me. Take out organs based not on disease, but the chance of getting a disease. I remembered the Angelina Jolie had done this. At the time I thought she was just a Hollywood nutcase. Why would anyone voluntarily do that?

     It was way too overwhelming. Too much to take in at one time. Surgery to prevent cancer. Genetic mutations. BRCA1 and BRCA2. So much to think about. My doctor told me to see a genetic counselor as a first step.

Discovering that I have the BRCA2 gene mutation

     This is how I found out that I have the BRCA2 gene mutation. My husband is very interested in genealogy. He wanted to confirm what I thought was true about my heritage. I knew that my maternal grandmother and grandfather were Ashkenazi Jews from Russia. My paternal grandmother was a Romanian Jew. And my paternal grandfather was Syrian and Saudi Arabian. Weird combination but there it was.

     We ordered a 23andMe kit. Well the results came back as expected. I was 82 percent Ashkenazi Jew and 17 percent middle eastern. This was kind of interesting.

     A few years later we ordered a medical addition to the test. It would show stuff like tendencies toward certain ailments, preferences, traits, etc. Very interesting stuff. A few months later I received the test for the BRCA mutations. There was a warning on the website before you opened it. Warning that it is not a diagnosis and basically not to freak out.

I already knew. My mother and my grandmother both had had breast cancer. Kind of knew it ran in my family. Well we opened it and sure enough I had the gene mutation.