Leave it to Fleener--RESULTS!

I got a call from Dr. Fleener this morning.  She couldn't wait to give me the good news!  

Looking at the results of my PET scan, she told me they are about the best results she good possibly expect in my case!  This scan looks MUCH better than the last.  All of the lymph nodes in my chest that were lighting up before are gone.  Most of the bone areas with cancer before are gone now.  There is still some activity in my spine---in T6&7 and in L2&3 {I may not be exactly right on the numbers, but they are close}--but the metabolic numbers are lower.  {The higher the number, the worse it is.  For example, numbers like 9, 10....20 are bad.  Normal is 2 or lower.} The only new area is ONE lymph node in my neck.  Dr.  Fleener is not too worried about this because 1) It's ONE lymph node and not several.  2)Its metabolic number is 3.3.....or something like that. 3) I've had problems with the radiation and ulcer in that area, so it's more likely that the lymph node is inflamed from that than cancerous.  

These are GREAT results, and I'm so glad Dr. Fleener called me!  She didn't want me to have to wait, and it's always nice in the cancer world to be able to call with good results!

If I have to go through chemo again, at least we know it's working!  I keep thinking that God wants to work miracles through me, and we are on the way to that.  I'm so grateful for good news!!!!  

Now to celebrate with some Mexican food----fajitas and queso will have to do, as I'm still not drinking Dr. Pepper.  

Halfway Point PET Scan

I'm currently radioactive and must stay 3 feet away from children.  

I scheduled this PET scan on a day when Evan would be in preschool, thinking it would give me enough time for this strange radioactive material that they inject into my veins to break down and not be dangerous to others.  However, Evan has an ear infection/runny nose/cough, so no school for him!  Thankfully, a friend is in town and was able to watch him, so my scan could go on as planned.  He just was NOT happy about me not being about to hold his hand or hug him or sit by him or....or....or.  It reminded me of how bad it would have been if he had stayed home with me after my reconstruction.  My little Physical Touch child would have been in despair thinking his mom didn't love him!  Thankfully, now he's old enough to understand the value of money and of getting paid to be patient for 2 hours while we wait for Mommy to not be dangerous to touch!

I arrived early, and they started me on the injection before my scheduled time.  Again, the nurse wasn't able to get a clean IV, so she had to dig around.  Man, I HATE needles!!!  She did inform me, "in the future, your oncology nurses can access your port for us, and we can use that to inject you and we can remove it."  I begged, "is it too late to do that today???" "Unfortunately, yes."  [Information that would have been useful to me.....YESTERDAY!!!!!]  After FINALLY getting the IV going, I had to sit and wait 45 minutes for the radioactivity to be at a high enough level throughout my body.  Then, they moved me into the machine and "took pictures" for another 30 minutes.  

Another one done!  Now, to wait for results!  I hope there is good news in my future; I could really use some.    

Prayer

Prayer works.  It feels as if the entire world has been praying for me lately, and I have felt great blessings because of that.  

After last Monday's disheartening news, my prayer warriors jumped into action.  Friends and family spread the word that I needed some extra prayers.  Between friends and family all over the country-- and a few in various places around the world--word spread quickly.  I was told that every church in Midland, Texas, was praying for me.  (Surely one of them HAS to have the direct line to heaven, right????)  In addition, one of my dearest friends decided to rally her troops and call as many LDS temples around the world to add my name to the prayer roll.  Through the efforts of many, I'm being prayed for in 107 (out of 148) temples in 5 continents around the world.  For those not familiar with an LDS temple, during one part of the temple ceremony, those in attendance use their collective faith when they are invited to join together in prayer on behalf of those whose names are on the temple prayer roll.  Anyone can call and add the name of someone who is sick or otherwise afflicted to the prayer roll, and names remain for 2 weeks at a time.  In essence, the entire world is praying for me!

I had been crying tears of sadness, frustration, and despair on Monday, and then I was crying tears of joy and humility when I heard about all the extra love and collective voices raised to heaven for me.  Each time I pondered all of the time, energy, faith, and charity others were showing me through the simple power of prayer, I was touched beyond belief.  My emotions were close to the surface all week.  

And, I experienced a small miracle.  The 3rd round of chemo has been the easiest yet!  Between my ulcer starting to heal, the acid in my stomach being controlled, being able to eat more than broth and potatoes, I have had more energy and was less sick than the previous 2 rounds of chemo.  I was able to go to yoga/pilates.  I was able to rest when needed, but go shopping and to the park.  I had the energy to organize the boys' closets.  It was a great week after Monday.  My only complaint this time around has been a few nights of sleeplessness.  Oh, and there was one day when the EXTREME DIARRHEA I've been promised from the beginning actually decided to show up.  I'm very grateful for cars with leather seats....and that's all I have to say about that!  Not everything can go perfectly, right?  

Prayers have blessed me.  Being known and loved has strengthened me.  I am humbled and grateful beyond what I can share.  Thank you to all those who have taken their time and faith to pray for me.  Please know that I have felt strengthened and that your prayers make a difference.     

Goble This Cancer & Derbes Knows Best

I had the chance to meet with Dr. Goble on Tuesday.  He agreed with Dr. Fleener about the small possibility that I have a new cancer in my esophagus.

"I don't want to be overly optimistic," he said, "but it is much more possible that these "atypical cells" are cells that have been radiated and are still in the midst of the healing process than are actually new cancer cells.  It does not seem highly possible that you have esophageal cancer because of your age and the fact that you don't have a high family risk or lifestyle factors.  It is unusual that it has taken this long to heal after radiation, but you did start chemotherapy the week after you completed radiation."

Dr. Goble suggested setting up another opinion with a GI doctor, but did not recommend another biopsy.  His advice was to wait and try to let the medicines work on healing my ulcer and to not worry about another scope at this point.


Yesterday, I met with Dr. Derbes, a GI.  He agreed with the other doctors and suggested waiting to let my ulcer heal before doing any kind of scope.  In fact, we might not even do a scope, as long as things heal up well.  If there was an infection or other concern, he would possibly check things out, but either way, we are going to wait several weeks to make a decision.

I definitely feel much better after getting more opinions from different doctors!


I will also be having another PET scan before my next chemo, which is a question I've been asked by several people.  That way, we will get a look at how the chemo is working at the half-way point.

Thanks for the prayers and love!

Leave it to Fleener--Round Three

I started off the morning with a little sunshine! I've been heart attacked before, and this morning I was sun kissed!  Thank you to my pink warriors who helped me start the morning with a smile!  

After many tears yesterday, today is a new day.  My blood counts were high enough for chemo, and I was able to have an appointment with Dr. Fleener.  I feel MUCH better after speaking with her. Again, leave it to Fleener!  Her first analysis is that this cancer is NOT something new to worry about.  She based this opinion on my PET scans.  She reviewed those scans with me, noting that I had some lymph node activity that showed up in that general region.  At the time, cancer in the bones was the more pressing concern, so she probably glossed over the lymph node activity.  Other theories: my ulcer is most likely a side-effect of radiation, possibly aggravated by chemo or the combination of medications that I'm on.  The lymph nodes could be pushing against the esophageal wall, and even could have been in some of the tissue that was gathered in the biopsy.  I'm so glad I got in to see her today, as I feel much calmer about this.  Cancer is still scary, but hopefully, this is just more of the same.    

Dr.  Fleener could not BELIEVE I had a non-sedated scope, especially with Stephen working in anesthesia.  She spoke with Dr. Dusold this morning and agrees that I should with over to a doctor at St. Joes, and is working on getting me set up with an appointment.  Another scope, in her opinion, is not a pressing matter at this time, especially since I'm having chemo and the doctors probably want to wait until I heal up a little and my blood counts get higher.  Those doctors may even want the ulcer to heal up some and let my current medications work before scoping me again.  Dr. Fleener said that they may even get down there and decide that they don't want to biopsy me again, since they will have access to my PET scans and may agree that another biopsy at this time could do more to aggravate my healing process.  

Overall, I am grateful for another opinion on this whole thing from a doctor who knows me and has more access to information on my specific case.  I am grateful to have good care and to be able to speak up and get in with doctors.  I am glad my counts went up, and I'm healthy enough for chemo, especially since it's been difficult to eat with this ulcer.  I'm grateful for all the love, support, and sunshine from all the loves of my life.  Thank you for all you do.   

Today's cancer kicks:  

Meet Gwen:  (old school when she had blue hair, back in the day.)

Biopsy Results

I had the follow-up appointment for my EGD today.  It looks like I will get to compare and contrast this procedure while sedated vs. non-sedated sooner than I thought because they need to collect a larger sample.  Unfortunately, the pathology report from the original biopsy isn't good.  "These findings are highly suspicious for epithelial malignancy with lymphovascular invasion.  A primary vs. metastatic carcinoma cannot be ruled out and additional biopsies may be needed for definitive diagnosis."  But, hey--good news: a GMS stain is negative for fungal organisms.  So, there's cancer in my throat, but not fungi.  

I'm not taking this news well.  I just sat and cried in the doctor's office.  Then, I cried on the way home.  And I cried any time the phone rang or I thought about any of this.  I'm ON chemo and they found an area of my body with cancer that didn't show up on the scans.  It leads me to think about where else it's growing and what we are missing and how bad this is going to get.  I have not given up hope, but today has just hit me pretty hard.  I'm sad and low and scared.  I thought I was past the tear stage, but it's back with a vengeance.  

One day at a time:  tomorrow I will continue with chemo, talk with my oncologist, schedule another scope WITH anesthesia, and hope for the best.    

I feel like every time we take two steps forward, we are knocked one step back.  But, that still leaves us one step closer than we were before starting.      

EGD--non-sedated

I went against the family business today.  I have learned for myself, yet again, that when you are asked if you want to be sedated for a procedure, the correct response is.....YES!

Yesterday, I had finally reached the point of pain level when it was time to call the doctor.  Dr. Fleener was completely booked, but when I spoke with the nurse about my symptoms: a constant pain worsening over the last 5 days, difficulty swallowing, difficult eating, pain down in the lower part of my esophagus, but also higher up---they suggested I see a Primary Care Physician to rule out infections, since I'm scheduled for chemo next week.  (This pain is a somewhat common side effect of both radiation and chemo, but it should improve, especially since this is the last week of my chemo cycle.  This was another concerning factor.)

I was able to make an appointment for the same day with a new doctor, since up to this point I did not have a PCP.  She did a strep test (negative) and also started me on meds for possible thrush, since treating this and not having it wouldn't be a problem, but having it and treating it ASAP would only help.  She also put in a STAT order for me to be scoped, since that would be the only real way to take a look at the lower part of my esophagus.  I was quite impressed with how kind, thorough, and concerned she was for me and my personal situation.  

Later that day, I was scheduled for an appointment with a gastroenterologist.  (I was told to call my PCP's office if they didn't call by the next morning, so this was already looking positive.)  I went to my appointment at 11:30, and met another kind and thorough doctor.  His overall impression was that my symptoms weren't matching up with my experience.  In other words, this should've cleared up a long time ago if it was from the radiation.  Unfortunately, today was his last day before vacation, so he really wanted to to an EGD later that day.  When I hesitated about having someone available to drive me home after anesthesia, he suggested that we could do the procedure non-sedated.  I chose.......poorly.  

I showed up at the hospital at 1:30 for my 2:30 appointment.  An EGD, or esophagogastroduodenoscopy, is a procedure using a "thin" scope with a light and camera at the end to look at the upper digestive tract.  Let me stress that there is a reason most people are put under sedation for this procedure.  It is not fun to experience while you are awake!  If someone offers you the drugs.......you say yes!!!!  

Anyway, I put on my hospital gown---OVER MY CLOTHES--since this would be a non-sedated thing that would only take about 5-10 minutes, and waited for the doctor to arrive.  He was done with his clinic hours early, so we rolled back to the room at 2:10.  I was given 3 sprays of a "cherry" flavored numbing medicine.  The nurse had me roll over to my side and started to explain that she would put a bite block in my mouth after I started to get sleepy until she realized, "oh, this is a non-sedated procedure!  You're not going to sleep."  (So, obviously she's MOSTLY done this with sleepy patients.  Again, another clue.)  Then, came the "thin" scope---not so thin up close.  Let me just say again that anesthesia is good!  But, it was too late for me.  

It was time to breath deeply through my nose and try not to vomit as a long, somewhat thin tube was shoved all the way down my throat.  I made it through the worst part and just closed my eyes and tried to go to my happy place.  I kept trying to swallow this thing that was already swallowed and ended up just drooling down the side of my face while tears spilled from my closed eyes, which should've been closed because of an anesthesia provider....... 

The doctor took a couple of biopsies to send to the lab and was able to get some good pictures, and then the other really bad part happened: this "thin" tube had to come back up.  And, it's a good thing I had not eaten since breakfast because lunch would've come out on that hospital bed.   

With the procedure over, I was able to speak to the doctor right away--since I was already awake--and see the pictures of my esophagus and that there was an ulcer: not at the top or the bottom, but right in the middle, where I had been pointing the whole time while explaining this pain.  So, at least there is a valid reason for my discomfort, and I'm not just crazy!  The bad news is that I have to start chemo again next week, which will make this even more difficult to heal.  And, even my radiation oncologist, which the GI spoke with, felt that this should've cleared up already.

We were back in the room by 2:30.  I changed and waited to be discharged.  As the doctor came to explain my instructions, he mentioned sending a new medicine to try.  He also said that as soon as he was able to get the results of the biopsies to me, he would.  Being on vacation might make it difficult, but he would try his best.  

As we left, he said that he would "be praying for me and thinking about me," and it looked like he got a little choked up, too.  This touched my heart and made me tear up, as well.  In two days, with two new doctors, I immediately felt cared for and loved by these humans who had never before met me.  It was, yet again, another example of how God uses others to meet our needs and let us know that we are not alone.  

And, if I ever do this again, I will not be talking to my doctor immediately after the procedure because I will be too busy waking up from anesthesia!