Lining Up The Soldiers........

12/19/12--Wednesday--Day 67--A Very Long Day of Doctors

The kids were going to be home from college, so Tuesday night I wrapped Christmas presents so I didn't have to worry once they were here.  It took me until 1:30 am, which proved to be not so smart the night before a long day of doctors.  After 3 three hours of sleep, our day began at 4 am so we could be on the road by 5.  Tuesday afternoon I received a call from the Cancer Center letting me know they scheduled me to see a gynecologist surgeon at 9, prior to my 10 and 11 o'clock appointments, but he wanted labs done before he saw me so I needed to be there by 8. When we woke, the wind was truly howling worse than I've heard in years and our drive was once again layered in rain.

When we arrived at 8 am, we started in the lab as instructed.  Bryon, the very first guy to take my blood on our first visit there called me back.  He remembered me and I updated him that my visits would now be more frequent. "I'm sorry," he sympathized " but it will be nice to see you."  He knows my friend, Paula, who is also treated there and we chatted about her and I being childhood friends and now both having cancer while he drew five tubes of blood.

Up on the second floor, we checked in and I learned the gynecology surgeon's name is Dr. Schlumbrecht, but the ladies call him Dr. Matt.  They said he is super nice and that I'll like him a lot.  I was quickly taken back and given a gown to change into since now a pelvic exam would be required.  His nurse and his PA came in to collect my history, which included much more personal questions because of the area of the body with which we were now dealing.  That made me a little uncomfortable, but I knew it was necessary.  Interestingly, the PA knew Safford because she is married to a Cluff (Mike Cluff).  That was a nice connection to have.  The doctor came in shortly, did the pelvic exam, and said he would meet us in the conference room after I dressed.

We walked across the hall to a room with a computer and a couple of couches where we would spend the next three hours.  He started by pulling up the CT/PET scan.  It was amazing technology.  The image was of my body laying horizontally on my back.  We were looking straight on from my head and moving through the length of my body with my back on the bottom of the image and my chest on the top.  As we moved through my body, first we saw the position of the inner mammary node in the center front of my chest which contained cancer, indicated by a bright yellow spot on the top of my body image.  It didn't look so small.  As he moved down the inside of my body past my waist, what seemed like a huge round black ball appeared.  "What's that," a question I had asked several times already as we moved throughout my body image.  "That's the mass," he answered.  OH MY GOSH.  I never imaged it was that large.  Greg and I both had the same look of disbelief in our eyes.  It looked like a small basketball in my belly.  I guess when they told me it was 10 cm, I related it to the size of my iPhone in length, but I never imagined the depth.  The depth and height equal the length.  It is about 10 cm by 9 cm ball.  It is a shockingly large size when looked at on a horizontal view inside my body next to all my other parts.  Seeing it from the top instead of straight on gives the perspective of how much depth of your body it takes up.  You are looking at a view with the front of your body being on top and the back of your body being on bottom and then you see this 10 cm mass taking up a significant amount of room in the depth of your body.  He changed views and show us the mass from the front.  It was equally large, but somewhat less impressive because then you are comparing it to the length of your body.  It was still enough to dwarf what we had been shown at in my breast before surgery.

As we talked, Dr. Schlumbrecht said he will do a full hysterectomy.  "Even if it's not cancerous?" I questioned.  "Yes.  With your situation, leaving your uterus, fallopian tubes, and ovaries would just be vessels for future cancer growth," he said emphatically.  He explained that I was close to menopause and leaving those part in would have no advantage, but would create a huge risk so he wanted to take it all out when he removed the mass.  He was the first male doctor on my team and though he was very knowledgable, he talked too fast, used too many medical terms without explaining them, and I was having a hard time keeping up with what he was saying.  It would still be laparoscopic surgery with several different incisions, could be up to five.  They would still send the mass off to pathology while I was on the table because if it was cancerous, he would also take my pelvic lymph nodes as well.  "Great, more lymph nodes gone," I kidded.  "Where are those and what effect could that have?"  He explained that they were above each leg and that if those have to be taken, there is a risk of lymphedema in my legs, just like in the arm.

Wow, I became completely overwhelmed.  First, I don't want to have a hysterectomy.  Six years ago when I started to experience heavy bleeding, I had a endometrial ablation, a simple outpatient procedure that basically burns the uterus lining and stops your periods but lets you continue to ovulate.  That addressed the bleeding problem and kept me from having a hysterectomy.  That had worked perfectly.  Now a hysterectomy for sure?  I was scared and I guess mad.  He explained recovery would be four to six weeks.  "How quickly could I go back to work?" I asked.  "It will be several weeks," he explained.  Despite my attempts to convince him I had an sit-down job and if I felt okay could I return sooner, he insisted I could not go back to work for a minimum of two weeks, then we would see.  I felt even worse.  A huge mass--possibly cancerous, a for-sure hysterectomy, a for-sure at least two weeks away from work--my normal life.  While I was grateful this was all "fixable" and "curable"cancer and mass issues, I was definitely overwhelmed and angry.  If this was cancer, Dr. Schlumbrecht explained, he would be in charge of the first part of my chemo rather than Dr. C.  His dosage would be every three weeks for six treatments, or 18 weeks, or four and a half months, however you want to look at it.  That would replace one of Dr. C's three month chemo regiments, but I would probably still have to do the other three months with Dr. C.

The doctor tried to reassure us by saying he did believed the mass probably wouldn't be cancerous and would be benign.  I asked him why they called it a complex mass if it isn't necessarily cancerous, and he explained that it was because it appeared to be made up of two different types of tissue, but it was very consistant, which was good.  Also, during the pelvic exam, the mass was mobile and not fixed, which was also good, according to him.  If it is cancerous, which he continued to say he didn't think it was, it could be breast cancer that metastasized in my pelvic area, or it could be ovarian cancer, which he seriously doubted it was.  "How will you get that big of a mass out laparoscopically?"  He said they should be able to collapse it by removing all the liquid from it first, and then it would slip out.  If by some rare chance there was cancer spread beyond the mass in other areas, which he didn't anticipate, they would have to do a full incision and open me up.  He kept reassuring me that he didn't think this was cancer, just a large mass.  He then explained the the CT/PET scan does not provide the view he needs to see more details of the mass so he wanted me to have a vaginal ultrasound which he thought he could arrange for the afternoon if we could stay.  We told him we could and would rather stay than have to make an extra trip, so now I had a 1 o'clock appointment at the imaging center.

I tried to take comfort in the fact that he didn't think it was cancer, but my focus remained on the hysterectomy.  I don't know why, but that really affected me.  He said he and Dr. Byrum were working to schedule the surgery for the first week in January and then left the room.  The other doctors would be coming to us in that same conference room.

We didn't have any time to regroup before the genetic counselor, April, came in.  She was our 10 o'clock appointment and we were already 30 minutes behind schedule.  She was very nice and explained much of what was tough to understand from Dr. Schlumbrecht.  She took a very detailed family history, which I had researched thanks to my Aunt Mary and Aunt Rita the night before.  Then she explained the results and the role of genetic testing.  She was the lady with all of the statistics, which was actually very helpful.  She said when talking with each of my now three doctors, when they look at me alone, they are all very highly concerned because I possibly met two of the three indicators for being a carrier of the BRCA gene.    First, I was diagnosed under 50, and second, I could possibly have both breast and ovarian cancer.  The BRCA gene predisposes a person to getting cancer.  A regular woman's chances of getting breast cancer are 12% and ovarian cancer are 1%, which is why Dr. Schlumbrecht believes I probably don't have ovarian cancer.  It is very rare.  However, if I am a BRCA gene carrier, the chances for breast cancer increase to 85% and ovarian to 27%-45%.  In addition, the chance for breast cancer to reoccur after treatment is between 2%-10% in most women.  In a BRCA gene carrier, the chance for reoccurring cancer increases to 40%-60%.  Now things were starting to make sense.  That was why doing the hysterectomy made even more sense to him.

April explained that when looking at me in my family history, me being a BRCA carrier now made less sense.  If I carried the BRCA gene, most likely another relative somewhere would have had breast or ovarian cancer.  We did realized that almost every female on both sides of my family had had hysterectomies sometime in their forties or even earlier, my mom's was in her twenties, so ovarian cancer may not have had a chance to surface.  However, one of my relatives would most likely have had breast cancer, and since none had, insurance would not pay for the $3,500 test.  If they find the mass to have cancer once it is removed in two weeks, insurance will pay for the test because my chances of being a carrier significantly increase again.  Basically, the doctors were thinking if I qualified for the genetic test BEFORE the surgery and I carried the gene, they could do the axillary node dissection, the hysterectomy, and a double mastectomy all in the same surgery.  Holy cow!  Ahhh NO, I thought to myself.  I was barely handling the thought of the hysterectomy right now.  There was no way I was ready to process the thought of a double mastectomy, being a gene carrier, all of that at the same time right now.  It didn't matter.  I didn't qualify so that was a good sign.

April left and I started going back over the family history and realized we had left something out.  There was someone who had died from breast cancer in my family--my dad's Aunt Bula.  We contacted April and she came back in.  I figured since it would be my great aunt, it wouldn't qualify, but it did.  She explained she wanted to do the blood work for the test and send it off.  It would still be insurance's decision as to whether they would pay to have the test run, but they would make their decision within two weeks because the blood would be waiting and have to be processed within that window.  She would order more lab work after I met with Dr. C.

She left and Dr. C, my oncologist entered the room.  Since the abdominal mass had surfaced from the CT/PET scan, she was on hold a little bit as the surgeons still had more work to do.  She explained that she wouldn't see me again until ten days after my surgery.  She also said that if I have ovarian cancer, it trumps breast cancer and that is why Dr. Schlumbrecht would do his chemo treatments first.  Breast chemo treatment doesn't cover ovarian cancer, but ovarian chemo covers part of breast cancer.  So if the mass turned out to be cancerous, he would run my chemo first for four and a half months, then she would do the last three months.  I asked her the question I have been waiting to ask. "On a scale of 1-10, how serious is my case?"  She explained that she can't think of numbers that way.  Instead, she evaluates cases on how curable they are.  She assured me my case was curable.  "But how serious is the cancer I have?" I probed.  I guess I still felt this was just something lots of people go though and it really wasn't a huge deal but I was beginning to question that.  I explained that we had talked to several other people who have had breast cancer and all of them had lumps 1 or 2 cm big, not 4, and only about six weeks of chemo, not six months.  She answered, "A 4 cm lump is large and you have very serious cancer.  Your cancer is serious, but it is curable."  I wanted to know, but I didn't want that answer.  She finished by saying she is also concerned about my blood history and wanted a hematologist involved in my case.  Evidently chemotherapy increases a person's risk of blood clots and with my family history of Protein S deficiency and blood clots on both sides of my family, she does not feel comfortable proceeding without a hematologist being part of the team.  She had scheduled me an appointment with Dr. Munoz for 2 o'clock.

After she left, April came back in and took us down to the lab with a genetic testing kit.  Bryon laughed as he drew another vial of blood from me.  I asked him if he wanted to bet I'd be back one more time today, and he said no way.  It was really nice being at the MD Anderson Cancer Center.  They all appreciated that we were out of town and were working hard to accomodate us so we could get everything taken care of that day.  I couldn't imagine not being at a cancer center and having to run all over to different specialist and make different appointments.  What we accomplished in one day probably would have taken at least a week if we were just seeing individual doctors.  I liked that every doctor we saw knew my case, had heard of it during tumor board, and had studied my case before they even came into the room.

On the first floor there was a great bistro for which we were grateful since we only had 20 minutes until the scanning appointment.  We grabbed a quick sandwich and headed next door to the imaging center.  They took me back quickly.  We hadn't waited to see anyone all day.  The technician started with a regular ultrasound.  As soon as she touched the wand to my stomach, that big black void showed up.  When I asked her if that was the mass, she said no, that was my bladder.  I knew she was wrong but didn't say anything.  She pushed so hard it hurt.  She couldn't find my ovary and acted like she didn't see the mass.  It's right there, I wanted to say.  It's that big black mass that you think is my bladder, but I didn't say anything.  She still seems to be convinced that my "bladder" was hiding things.  She had me go empty my bladder, although I told her I just did that before she called me back.  I did as I was asked, though there was nothing else to empty.  When I returned to the room, I asked her if she knew the size of my mass was 10 cm.  She said she had read that.  Finally, she said, "Maybe that isn't your bladder."  She was young and she was the first person I had worked with at the Cancer Center that I didn't have much confidence in.  She moved to the vaginal wand and took the picture she could.  She still seemed like she had trouble locating one of the ovaries.  I asked her if she had seen other masses that size and she said it was the biggest one she had seen, but other techs had probably seen ones that size.  I didn't think much of her comments since she seemed young, a little inexperienced, and I didn't have a lot of confidence in her.

We returned to the main Cancer Center building and went back to the second floor where all the doctors are located.  We were in the waiting room almost 30 minutes, which was the longest wait we had ever had, but Dr. Munoz was trying to squeeze us in and we appreciated that.  The doctors all share the same examine and conference areas and share the nurses.  Betsy, a sweet nurse we met last time who talks like Betty Boop took my history prior to seeing the doctor.  Dr. Munoz was super sweet and very cute.  He was great at explaining the increased risks of blood clots with chemotherapy and cancer in general.  He also explained that Protein S deficiency was different than people who needed their blood thinned.  It was a whole different issue.  Chemotherapy and cancer can cause blood clots and it automatically lower your Protein S.  For people who have normal Protein S levels, this is not a problem.  Since my levels were lower than normal and below the threshold, it presents a problem for my case--of course.  Though I had been tested for Protein S deficiency prior to my surgery which showed I was low, he needed different tests--of course.  He said based on my family history on both my mom and dad's side, he wanted to put me on Lovenox beginning with the surgery and keep me on it throughout all of the chemo--of course.  Lovenox is a shot you take in your abdomen area every day.  He said it may be too expensive and insurance may not want to pay for it, but he felt is was necessary because I was a high risk--of course.  He was going to do the tests and see what he could work out with insurance.  He sent me back to the first floor lab before we ended our day.

Bryon, the great blood guy, had already left for the day since it was past 3:30 at this point.  A woman took me back and drew another four vials of blood; that made ten for the day.  On the way out, I picked up a CD of my CT/PET scan then headed back into the real world.  We had been there all day.  As we sat in the truck, it was almost like when you emerge from spending a day in Disneyland and you forget there is another whole world beyond the gates.  Brooklyn was supposed to be coming in at 7:45 PM and the plan was we were going to wait to pick her up, but her plane was delayed.  I was exhausted--and cranky.  There had just been too much.  I was glad it was all in one day, but at the same time, it was so much to learn, so much to remember, and so much to process.  I was glad the day was over.

We called Preston and asked him to wait for Brooklyn so we could head home after a short stop at the mall to look for one more present I needed to get.  By the time I was in the middle of the mall, I was really done.  We just left.  My wonderful amazing husband, who I'm sure was going through his own mental exhaustion, drove me home and tried to give me anything he could to help me be better.  I wasn't in a "poor me" mood, I was just in a bad mood.  I was tired, I was done.

By the time we got home, I wasn't quite as cranky, but I couldn't blog.  I didn't want to talk about anything.  I just wanted to climb in bed and escape the world.  My dad called and I did want to tell him.  Although I didn't have my mom to curl up with and cry to, he was doing a great job staying super close to me and he made me feel safe.  I curled up on the couch upstairs and talked to him for about 20 minutes.  I think for the first time he was kind of scared too.

A wonder friend, Susie Case, had left a couple of great presents that helped me smile and feel better before heading to bed.  She had left me a "Kolor Kordinated Kemo Kit" in her cheerful way with a wonderful note.  She had also spend what I am sure was hours dusting my elephant collection!  Oh my gosh.  What a kind and wonderful friend.  It jolted me out of my bad mood and reminded me that I was not alone in this journey.  No matter how frustrated I became, people still loved me and wanted to help me.  Her kindness helped me go to bed with a smile after my very long day of doctors.