A Complex Cancer Befitting a Complex Personality

Punch biopsy requiring 4 stiches

Punch biopsy requiring 4 stiches

When Carmen was first diagnosed, we were told that she had a very rare form of stomach cancer.  I guess it was fashionable to be unique and different.  Can’t have the same cancer as everyone else I suppose.  Imagine walking into a party and seen someone else with the same…

After the surgery we were very relieved and hopeful that she would be free from the outrageous pain she was experiencing.  We thought we would have a little respite from the past 8 weeks as we looked forward to her recovery from surgery.  To back up a bit, a few weeks prior to the surgery Carmen noticed a few bumps that began showing up in various parts of her body.  It looked like little irritations at first, then perhaps pimples.  But these were not pimples.  Immediately following surgery, one of these began to flair up, very rapidly.  If we concluded that these were not pimples or infections, then we guessed that they might be what we were hoping they weren’t going to be.  So while we were in the hospital I called around to schedule an appointment with a dermatologist.  Truly never a dull moment with Carmen.

I had been looking online for any history of stomach cancer going to the skin.  Was this a different kind of cancer, perhaps skin cancer?  Or could it be the same signet ring featured adenocarcinoma that had spread to her ovaries from her stomach?  I distinctly remember her first oncologist assuring us that stomach cancer does not go to the skin.  I didn’t want to venture into thinking that this could be a new form of cancer.  But just as awful was the notion that this had manifested itself onto her skin.  Only way to find out was through a biopsy.  So here we are, 14 months after diagnosis, doing the same thing all over again.  Surgery, recovery, and appointments after appointments.  Deja Vu.

We went to a dermatologist in Manhattan Beach the following week to get this thing biopsied.  The doctor explained that the surgical excision would be a fairly simple procedure where he would just do a punch biopsy.  Basically a hollow little tube would excise the pimple like tumor, then have it analyzed at a lab in UCLA.   It would take about 5 days.  We were almost certain that it was cancer but the question was, what type.  So after 5 days the results came back positive for signet ring features.  Her cancer had spread to her skin.  Truly unique.

Forgot to mention that Audrey finally began walking when we were in the hospital.  Now she won’t stop.  Also she’s become very demanding.  The honeymoon period with her is officially over.  The sweet little baby we all knew is gone.  She has become belligerent especially (I guess only) when she’s hungry.  The problem is that she’s always hungry.

Carmen’s recover has been slow.  The pain from surgery is getting better, but it seemed to have stabilized, not getting worse, but not getting better.  The guess is that the nodules in her peritoneal cavity are giving her more pain than before.  We thought it might be due to the tumor’s vacancy, but that explanation should only go as far as a few weeks.  If that was the only cause of pain, it should be subsiding by now.  But the pain from her pelvic region is not subsiding.  She is also getting the full brunt of the side effects of the pain killers, the main one being nausea.  This, along with the tumor in her stomach, is preventing her from eating as well as she should.  Any recovery will require her to eat more causing me to become her food tyrant.  I’ve also become the Carmen whisperer.  Every time she feels like she has to throw up, I magically calm her down and prevent her.  The first time I used my whispering skills was that night after surgery.  She was about to throw up after eating a little broth.  I couldn’t imagine the pain that would envelope her if she were to throw up with those 30 staples in her belly.  So I calmed her down enough for her to relax her reflexes.

The other appointment post surgery was with the medical oncologist.  She recommended we wait a little to allow Carmen to heal from her surgery before getting her back on any chemo treatments.  At this point, we’re not sure what Protocel is doing, if anything, so we’ve decided to try the pill form Xeloda once again.  She had tolerated this drug fairly well.  The hope is that the removal of the 2 large tumors would allow her body to respond even better than before.  Was this cancer too aggressive for Protocel?  Or could it be working on the microscopic level to prevent floating cells from setting up shop in her organs?  She hasn’t had a scan in a few months so at this point we’re not sure how the insides look from a scan’s perspective.  Just trying anything and everything and hoping for the best.  The next steps for Carmen is getting her energy back up to where it was before and get her appetite back to normal.

Much gratitude to the friends and family that have imposed their will on us and invaded our privacy.  Thank you for taking this fight personally.

I know that God’s will is perfect.  His view of heaven and earth is something no one on earth will ever be able to grasp, at least not while we’re still here.  So taking someone home is of course a great thing.  However, as selfish as we are (or I am), I had wanted His will to be carried out on earth.  In my mind, heaven can wait.  I had been thinking about this for a while.  So it came as a pleasant surprise a few weeks ago when I saw a verse pop up in the Bible app.  That day’s Daily Verse was from Psalm 27:13, which reads “I remain confident of this; I will see the goodness of the Lord in the land of the living.”  How specific is that?  Amen.

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Surgery and aftermath

September 17, 2013

This surgery was originally scheduled for the following week, 9/24.  However, after seeing Carmen’s condition, the surgeon was able to squeeze her in to this day for a 9am surgery.  The days leading up to this date were unbearably long as the cramping episodes completely took over her daily life.  These tumors had to come out, and fast.  The morning of the 17th was not too bad.  I was worried that the drive to Cedars would be painful for her, but thankfully she didn’t experience a major episode that morning.  A few friends came to join us and to see Carmen off, sending her good will and wishes.  By now word had spread for all to pray for her.  My mom remarks that God’s ear must’ve been stinging from all the prayers that day.  Many had fasted as well in prayer for Carmen.  I tried to remain as calm as possible mainly to keep Carmen as calm as possible.  There was no sense in both of us hyperventilating over this ordeal.

The surgery was to last about 3-4 hours.  Any complications would extend the surgery, so we were praying that there would be none.  Thankfully there were none.  In fact, I got a call about 90 minutes in that they are pretty much done and were closing her up.  After a little over 2 hours, the surgeon comes out and says that the surgery went very well.  The tumors had very little adhesion so they were very easy to remove.  The only issue was the size of these things.  They were so big that the incision had to be vertical and not horizontal like a regular C-section delivery.  The initial incision was too small, so they had to keep going up passed her belly button.  They used staples to close her up instead of stitches, so it actually looked like a zipper.  30 in all.

Post Op

I would have to wait another hour before I was able to see her.  She first had to wake up, then they had to manage the pain that she would experience.  This part took some time so I patiently waited for them to stabilize her.  This took longer than expected because Carmen has a very unique physiology that makes her a very cheap date, but painful patient.  She is extremely sensitive to alcohol.  A few sips of a watered down martini will get her tipsy and feeling good.  If there’s any request when ordering a martini, most people would want it strong.  Not Carmen.  She always asks for less alcohol.  However…when it comes to pain medication, her tolerance is off the charts.  Meaning, she needs a huge dose of pain medication to get the same effect as a normal person would get from a regular dose.  She basically needs horse tranquilizers to get the job done.  On the flip side, she gets the full effect of all the side effects like nausea and constipation.  So basically she’s getting a double dose of the side effects while getting half of the primary effects of pain control.

I first noticed this phenomenon when she dislocated her shoulder (the 2nd time).  The ER doc gave her morphine to dull the pain, because she was in a lot of pain.  But her body had other plans for her and decided it didn’t want any of it.  The morphine did nothing for her.  Seeing how this had such little effect, the doc decided to sedate her instead, then pop the shoulder back in.  Well this would become an experience for the doctor.  He started with the dose that would normally knock out a person her size.  When he had administered that dose, he called her name.  Carmen (eyes closed) nods.  He then gives her more and calls her name.  Carmen nods.  He then looks at me as if I was holding something back from him.  I just shrug.  He keeps going and calls her name.  Carmen nods again, eyes still shut.  By this time he’s simply amazed that she’s still responding.  Finally, she doesn’t respond.  I knew then, that I had married a horse.

So after surgery, the post op nurse in charge of her begins to administer the pain killers through an IV.  When I finally go in to see her, I cringe after seeing her face.  Her eyes are closed and her face is grimacing.  I turn to the nurse and ask her why she’s in so much pain.  She replies that that face is much better than from an hour ago.  She had given Carmen in 15 minutes, what she would normally give a regular person in an hour.  So after she was done, she had to go back to the anesthesiologist for more instructions and medications.  She was on something much stronger than morphine, yet still in much pain.  That was a little hard for me to see.

I quietly called her name and she opened her eyes.  Unlike the dislocated shoulder where she had no recollection of the pain, this time she would remember it.  So we chatted a little as I went back and forth discussing her condition with the post op nurse.  The nurse tells me that I seemed to be therapeutic to her so she asks me to stay.  I didn’t know I had that effect on her, but apparently my skills are broader than I thought.  So I obliged and stayed.  I was probably nagging her about something to keep her mind on me and not the pain.

The result of the surgery was mostly favorable.  The surgeon saw the nodules that we knew were there from prior CT scans.  However, to her surprise, none of her organs were affected and everything inside looked good.  The mere fact that none of her organs were affected was a huge deal.  She still has cancer in her, but for now they are manageable.  This was a sigh of relief for us.

The next few days were all about pain management and stabilization.  The nurses would take her vitals every 2 hours keeping me awake throughout the first night.  However, with each subsequent night, I would fall into deeper and deeper sleep when by the 3rd day, I wasn’t getting up or acknowledging anyone until about 8am.  Apparently all the nurses and doctors were looking at me sleep wondering why this guys wasn’t getting up.  Carmen was a big girl.  She was more than able to handle them.  Besides, this time there was no new born to care for.

Carmen still has a long way to go but this was a huge step for her.  The crazy, off the charts type of pain has all but disappeared.  However, the pain from surgery (incision) as well as the internal pain of cutting the tumors out were very intense.  She also developed residual pain in her pelvis.  The speculation is that since these tumors were sitting on her pelvis for more than 20 months, their sudden vacancy caused a lot of shifting around inside which I think caused pain nerve endings to begin firing.   Also due to surgery and pain meds, she was constipated further adding to the onslaught of pain.

All in all, this was a good surgery, something that needed to be done now or later if she ever wanted a full recovery.  Since our goal is nothing short of a full recovery, we’re glad those demon twins are finally out.

God Moments

I wasn’t planning on writing this particular post, but now I feel compelled to share a few moments that gave us great comfort.

1) When we first found out about the diagnosis things were in complete disarray.  I recall distinctly having a certain conversation with Carmen as we pondered why.  That same day a few church friends came to visit.  One of them in the group basically repeats almost verbatim the conversation Carmen and I had an hour before.  When they left, we looked at each other and thought, cool.

2) One of Carmen’s good friend’s mom went to Argentina for vacation.  She took one of Carmen’s photos with her to take to a priest in that area.  This priest apparently had a gift of healing.  She waited in line for over an hour or 2.  When she finally got there she showed the priest her picture.  The priest looks it over and says “stomach cancer”.  Do I believe some people have these types of gifts?  I do now.

3) The first time I ordered Protocel a strange thing happened.  Protocel is also called Cancell.  I had never seen this word spelled this way before (or so I thought) until this day.  After I ordered it, about an hour later, I was scanning my Yahoo inbox looking for an email when I come across that word, cancell.  It was an email my dad sent me asking me to cancel his cable subscription.  He misspelled the word and added and extra “L” at the end.

After we got the scan results I began to doubt whether Protocel was doing anything.  Carmen and I discussed it and I was ready to switch to something else, but Carmen wanted to continue it.  So I agreed and ordered it again.  I entered my credit card information including the 3 digit code at the back of the card.  This number happened to be 892.  Nothing special about this number.  After work I went to go pick up the girls from summer camp, then on to the radiologist to pick up a copy of the scan.  On our way home while on the 405 (doing normal speed of 60-70mph) my mind as usual was wandering.  Like most people I get on “auto-pilot” when I drive home, especially these days.  Then something happens.  That number 892 is staring straight at me while on the freeway.  It basically “woke me up” from my day dreaming as I stared at it.  So I pulled out my wallet and credit card to see if it’s the same number I inputted a few hours ago.  It was.  The car in front of me was a loaner car from South Bay BMW.  On the lower right side of the rear windshield is that number, all by itself.  I felt that number called me to make the connection with the purchase earlier.  This obviously added to my confusion.  Was God reassuring me to stay the course in light of what we were seeing with Carmen.  Seemed contradictory.

4) After we reviewed the results of the most recent scan we were distraught and worried and doubting whether we were doing the right thing.  Of course we realize there is no right thing from this perspective.  That night Pastor Kim and his wife come over unexpectedly.  We hadn’t spoken to them in about 6 weeks.  They didn’t call, just showed up.  We told them what had happened as they prayed for us.  Olivia and Ella entertained us with the praise songs they had learned at summer camp.  Then Olivia comes back and tries to sing a final song.  Carmen was talking so Olivia hesitated a few times.  Normally she would get upset that nobody was listening to her, but this time she was patient.  When we realized she wanted to sing us another song, we stopped talking.  Not 2 lines into the song, I nudge Carmen and tell her “listen, God is talking to you right now.”  Carmen at the same time was thinking the exact same thing.  Here’s the song.

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way

Oh, God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way

By a roadway in the wilderness, He’ll lead me
And rivers in the desert will I see
Heaven and Earth will fade but His Word will still remain
And He will do something new today

Oh, God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way

By a roadway in the wilderness, He’ll lead me
And rivers in the desert will I see
Heaven and Earth will fade but His Word will still remain
And He will do something new today

Oh, God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way

With love and strength for each new day
He will make a way, He will make a way

4) I had been trying to schedule surgery for about 3 days.  Finally they call back and tell me the date.  30 minutes later, Pastor Kim calls again out of the blue.  At this point, all I can surmise is the Holy Spirit was leading him to keep tabs on us when we need a word of reassurance.  He wanted to come over (Wednesday) to pray for Carmen, but Carmen wasn’t feeling well so we asked him to come the following day, the day I would buy Protocel again.  This time, I began to look for “signs” (I know, very immature of me).  I looked all day long, but couldn’t “find” anything.  I certainly was hoping.

That night Pastor Kim comes over and I ask him about my confusion of the seemingly strong assurances I’ve been getting for Protocel when from a rational point of view, I would’ve quit this a while back.  I couldn’t reconcile it.  So I asked him, is it possible that all of these things could be coming not from God, but from the devil?  His immediate reply was no.  He said It seemed God was telling me to stay the course.  But more important than all of these signs was our trust and faith.  Those things are all secondary and probably given to help our wavering faith.

The next morning I realized it had happened again.  This time instead of a sign while on the freeway, or my Yahoo inbox it was an actual person that I believe God sent to personally tell us.  Now, am I reading too much into this?  Could all of these things be just a mass random coincidence?  I choose to believe no.  These were God’s fingerprints.

5) One day about a week ago, I told Carmen to stop always thinking about what trips she’s going to take when she was well.  Those things are good, but I told her there needs to be a higher purpose for her life when she gets well.  That purpose was to help others who are in your same situation and to give them comfort and assurances that God cares and loves them.  She needed to begin thinking about being an ambassador specifically as it relates to cancer.  That was our literal conversation. It had been a while since we discussed this.  That same day, I just happened to be in 2 Corinthians in my daily reading.  Starting in verse 3 it reads “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.”  Carmen has a bigger purpose beyond trips to Paris and New York.  We need to get ready for it.

This journey has morphed from a medical journey to a spiritual one.  It’s not a journey with stomach cancer anymore, nor a journey with Protocel, or surgery, or chemo, or any other treatments.  This is now a journey of faith.  We can only do so much.  God is the one that will need to make things happen just when we least expect it.  We’re just waiting patiently to be picked up from the valley we’re in.

A final verse that came as a “Bible verse of the day” during this past week resonated with me, also in light of the message that Pastor Kim gave us a few nights ago.  It was from Hebrews 10: 34-36.  “You sympathized with those in prison and joyfully accepted the confiscation of your property, because you knew that you yourselves had better and lasting possessions.  So do not throw away your confidence; it will be richly rewarded.  You need to persevere so that when you have done the will of God, you will receive what he has promised.

All of these occurrences and verses were so timely these past 10 days.  I believe God will make a way for Carmen.

The Slide Continues

Olivia and Ella fighting for the mic

Olivia and Ella fighting for the mic

September 2013

We celebrated Audrey’s birthday on 8/31.  Carmen had been preparing all week long with pictures, frames, candies, and other minor decorations.  The morning of the party she had a major episode.  She took some over the counter medication but nothing seemed to work.  The spikes were alleviated only through time.  She came down from the spike just long enough for her to get ready and get in the car.  When we got there she had another one so she had to stay in the restroom to relax her belly.

The rest of the day was really good.  She had lots of energy and the pain was minimal.  Little did we know that things were about to get bad.

Sunday and Monday seemed normal enough, but the spikes had returned.  This time it was elevated and more extreme.  This week was also when our good friends the Smiths from our Raleigh days would come to visit us.  They had no plans except to hang out with us.  They have 3 daughters all similar ages to ours so it was really fun for the girls.  By this time Carmen’s condition took a nose dive.  I told them that they had come at the best time and worst time because they spent the weekend helping us.

Friday 9/6/2013

They were staying at a local hotel that had a pool.  Carmen had been in bed for about 2 days now not eating much or doing much of anything.  It was eerily similar to her first week of Oxali where all her energy was zapped and nausea was out of control.  I told her she should just stay at home while I take the girls swimming at the hotel with the Smith girls.  She insisted so I relented and off we went.  By the time we got there she was in a lot of pain.  So I told her to stay in the car while I go drop off the girls.  I would be right back.

As I approached the car, I saw movement in the passenger seat which was where Carmen was sitting.  Immediately alarm bells began sounding in my head so I rushed over to see if everything was alright.  Well, they weren’t.  She was in a lot of pain.  She motioned for me to take her to the back of the minivan so she could lie down.  I removed both car seats and took her there.  The pain was beyond intense.  It wasn’t moaning and groaning type of pain.  It was writhing in misery type of pain.  There was nothing I could do except hold her hand and pray to God for comfort.  Her hands began to get cold and feeling as if she was unable to move her arms.  This was probably a pre-cursor to going into shock.  After about 45 minutes it slowly began to subside.  My church friend (Gene) surmised it might’ve been twisting of the small bowel, or bowel obstruction.  He said pain from this is extreme.  Based on what just transpired, this was probably a good guess.  He suggested Kefir and Pepto as a temporary relief measure.  Great call.  Kefir was probably the only thing that she was able to handle for those few days.  By the way she was also throwing up.  Not too much, but enough to cause further alarm.

The decision was clear.  She needed surgery.  Whether Protocel was working or not was now secondary to physical removal of these tumors.  They were out of control and were probably pushing on everything else.  Relentless was this thing.

So on Monday I called the surgeon we’d met a few times at Cedars Sinai to schedule surgery to remove these 2 large masses.  The purpose of this surgery was never curative.  It was to alleviate symptoms.  I would venture to say that she is now symptomatic.

Carmen wasn’t “snapping” out of this funk which looked like coincided with her monthly cycles.  Somehow the onset of her cycles completely exacerbated her symptoms.  It happened in July and now in August with August being by far tougher and longer than July.  I can’t imagine what September’s cycle would bring.  I didn’t want to find out so we decided she can’t have any more cycles.  Doing the surgery would guarantee her cycles would stop.

The surgery was initially scheduled for 9/24, but I called and after explaining to the surgeon what I saw, she asked if Carmen could come in for a quick examination.  I was glad to take her.  After seeing her she agreed that Carmen would probably need to be moved up.  So they found an opening on Tuesday, 9/17/2013.  This day was to be a long one.  The appointment was at 10:00.  It took us over an hour to get there.  They wanted to do some pre-op blood tests, EKG, and chest X-ray.  This took a long time.  We finally left Cedars at 1:30.  Carmen had her foot therapy appointment in Buena Park at 3:00 (alternative treatments we’re trying).  We get there exactly at 3:00 and she receives her treatment until 4:30.  This day was the first of 2 days of the Woman’s conference in Anaheim.  A few church ladies had planned to go for a while.  We weren’t sure if Carmen was able to attend.  The prior day 2 church friends Anna and Esther had come over to help.  They saw the condition Carmen was in and thought it would be unlikely she would be able to attend.  I feel God had other plans.  After such a long day, she had enough to attend.  Also she ate and said she was hungry which was the first time she said she was hungry in about a week. 

This was such a great night for Carmen and her friends.  They felt that she was meant to be there to hear God’s message through the guest speaker.  It was as if he was speaking to her.  They all cried and had a great time.  This burst of energy was surely God given. 

So it’s set.  Time to hit the reset button on this and start over.

Roller Coaster August

Griffith Park train ride

Griffith Park train ride

At Griffith Park pony ride

At Griffith Park pony ride

August 2013

We always knew this journey wasn’t going to be easy. What we didn’t realize or could have known was how difficult it could be or would become. Deep down inside I had an inkling, a fleeting thought, an impression that the worse was yet to come. It was impossible to understand or put this into any context because I had no frame of reference for it. It was just one of those feelings.

The cramping was beginning to intensify in both frequency, duration, and intensity. At this point I basically stopped tracking the episodes because it became regular and frequent. The next CT scan was due at the end of August, but the way she was going, we decided it would be better to move it up to the middle of August. By 8/8 it became pretty bad so I ended up scheduling the scan for 8/13 and see the oncologist the following day to review the results. That Saturday and Sunday prior to the scan were by far the worse days. Still we decided to take the girls out for a little fun at Griffith Park. There’s a part of Griffith that I didn’t know existed where kids can go on pony rides and train ride. There’s also a Merry Go Round from the early 40s that will take you back in time.

A curious thing happened that following Monday. The pain and cramping suddenly subsided. Monday was a good day with only 2 episodes. Tuesday was better than Monday, and the rest of the week was pretty good. We still had the scan on Tuesday and met the oncologist on Wednesday. Based on what she had experienced the prior 8 weeks we had an idea of what to expect. And as expected the results were not favorable.

The tumors grew.

It was alarming but we nonetheless held out hope that it had only been 2 months. The oncologist was a little more subdued this time around, but still gave us no hope for a long term survival. He gave us 4 options (all chemo and one experimental genetically based approach). He advised us that “people general do better and live longer with chemo than without”. I finally asked him to quantity that statement. What does “live longer” mean? Are we talking 4-5 years longer? Before I could finish my breath he replied that he wasn’t talking in years. So I asked him, what it was. He replied median was 3 months. What was the max if the median is 3 months? No answer really because it wasn’t what I was looking for, which again is a long term solution. Needless to say we got the point. Carmen then ventured to inquire about another alternative treatment called High pH Cesium Chloride therapy. He looked at us and said “where are you guys getting this stuff from? There are many people out there on the Internet that will gladly take money from you and promise you the world. I wish big foot was real, but he’s not.” I know he meant well, but the approach was disagreeable at best. The reality is there is evidence out there to the contrary. Not just from what’s on the Internet. I actually talked to a few of these “lost cases”, all stage 4 former cancer patients. 2 of them actually sent me their medical records, one of which was from the Mayo clinic. It wasn’t hearsay, but it was actual phone conversations and correspondence via email. Did this mean Carmen’s case was a slam dunk with Protocel? Of course not. We were a long way from that. What it did mean was that there was hope. There is always hope.

The 2 weeks after this meeting were ok for Carmen. She did have problems but they were manageable. She wasn’t on any prescription pain medication and seemed to have stabilized, hence my limbo comment from an earlier post. I’m always looking for that point where the slope changes from negative to positive. We weren’t there yet. Also we’re not so jaded that we’ve closed the books on conventional treatments. Whatever works and whatever tools we need to utilize to keep this under control and eliminated were on the table. There is only 1 goal.

Busy July

Effects of Xeloda

Effects of Xeloda

DSC_0298
July 2013

July will always be hard for Carmen (and me because I do all the heavy lifting). The 19th is Olivia’s birthday, the 23rd is mine, and the 29th is Audrey’s. My birthday became an afterthought ever since Olivia was born. That’s ok. I always look forward to cooking ramen for myself on my birthdays.

This July was especially difficult because of our Hawaii trip. Not to complain, but we were unwinding from the trip for a few weeks. It took us some time to gather ourselves after we had returned. But life goes on, and so do parties. Olivia celebrated her 7th birthday on the 19th, but because we ran out of time, we decided to throw her a party on the 29th, which was Audrey’s first birthday. Can’t do 2 birthdays at once, especially the first birthday party, so we decided to postpone Audrey’s party by a month.

Carmen has been doing well except for the cramping that seems to be getting more frequent. I began tracking the onset of each cramp as well as the severity. There was indeed a pattern and it seemed to correlate fairly well with the timing of each Protocel dose. So we conducted a few “experiments” along the way to test this by changing the timing of each dose. The cramping seemed to follow. It wasn’t exact, but it was close enough to say it might have something to do with Protocel. Her energy level remained high during this period, but each cramping episode drained much of it. We also noticed that during very busy days, her cramping would be more severe and also more frequent. Toward the end of July it became clear that this was going to be an issue. Her pains increased and there seemed to be no end in site. From all that I read about Protocel, pain is not a usual symptom of Protocel. They say that sometimes, the tumors may actually grow for a few months before it stabilizes and ultimately begins to shrink. It’s effects on tumors is much slower than chemo so it made sense that it might grow first. The symptoms she was getting made me wonder if it’s even working. However, it had only been 6 weeks since the start of Protocel. The normal length of time that most people see stabilization is about 3-4 months. With Carmen’s large tumors, we would probably need to add a few months to this projection. The problem of course is do we have that long to find out whether or not this is working?

By the end of July we both agreed that 6 weeks just wasn’t enough time to quit and change protocols. We needed to see the scan even though we were warned that it may appear bigger and worse if taken before 3-4 months. Again, with Carmen’s large solid tumors, this estimate was probably not going to cut it for us.

We were scheduled to see the oncologist again at the end of August for a checkup and to do another CT scan. Since I’m writing this in hindsight I will tell you the results were not good.

So July ended with a nice birthday party for Olivia. Things seemed like they were in limbo as we played the waiting game (not very good at this game).

Aulani

Hawaii here we come!!!

Hawaii here we come!!!

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June 2013

After the oncologist told us “now’s a good time to go on a trip”, it was finally time to go on that trip. We had been looking forward to this family vacation for a while now. We had been telling the girls that we were going to Hawaii just to get them revved up for the trip. We planned to go with Carmen’s sister’s family. Their cousins are the same age as ours so this would be a fun trip for all. Carmen was officially on her “break” from chemo so it was the opportune time to try the alternative approach. By the time we got to Hawaii she had been on Protocel for about a week. We were hoping to see some “signs” that Protocel was working. If we saw any, it would be in a few weeks, hopefully.

During the first few weeks there was one notable event that we noticed with Carmen and that is cramping in her belly. She always had cramping throughout this whole ordeal but they were infrequent at best. Aside from the obvious (tumors in her belly) this cramping could be due to any number of things. However, this cramping started to become more frequent. At first it was happening about once every 2 days, then once a day. Then a few times a day. The cramping would last about 30 minutes to about an hour and they seemed to coincide with the timing of Protocel doses. The onset of these cramps happened very closely to when she started on Protocel which made us think that Protocel had something to do with it. We figured at this point a reaction due to Protocel was good news because Protocel is proven to be non-toxic. So the effects (if caused by Protocel) were indirect. Meaning that Protocel wasn’t attacking any particular part of her body like chemo would, but in theory, it was attacking the cancer. Could this be the reason for the increased frequency of the cramps? Are these “good” pains or “bad” pains? It was nearly impossible to tell which type of pain this was. The only thing that we could hang our hopes on was how fast this cramping came following the start of Protocel. We surmised that it must be due to Protocel.

Carmen did well in Hawaii but the pains were certainly noticeable. The girls had a blast as everyone else did. The only person that had a rough time was Audrey. She wasn’t used to seeing large rodent creatures walking around with the rest of the humans. She developed a quick phobia of them.

Audrey terrified of Minnie

Audrey terrified of Minnie

Well our week came and went rather quickly. It was back to reality. Again the only person that was relieved I think was Audrey. She welcomed the idea of leaving this crazy fantasy land.

With security blanket in hand Audrey is finally happy

With security blanket in hand Audrey is finally happy