Doctors...Friend or Foe?

Every book you read about fighting cancer, or every survivor you talk to, tells you how important it is to have faith in your doctors.  We all grow up believing that our doctors have our best interest at heart and what to treat an illness the best they know how.  What happened to those days?  When your doctor knew you by name, knew every illness you ever had, even knew the things you did in life that made you happy.  Tami’s insurance was with Kaiser when she became ill.  2 urgent care doctors, and 2 ER doctors missed the possibility of a blockage, and or tumor.  They just wanted to treat her for constipation.  The third ER doctor was the first to be suspicious of something and ordered a CT Scan.

When the surgeon came to talk to Tami about her scans, and the surgery he was going to perform on her, he actually pulled out his Iphone and showed her a video of him doing the surgery on another patient.  Now, some people might have appreciated that or wanted to see it, but honestly, Tami and I were both a bit appalled.  He went on and on about how many of these surgeries he has done, and how successful he has been.  If it was meant to reassure us, it didn’t…it just made us think he was proud and arrogant.  Now that we know what we know, there was a HUGE possibility the cancer had already seeded Tami’s abdomen when that first surgery was done.  The surgeon removed the tumor, knew that it had broken through the muscle wall of the colon, but at no point opened her up further to see if the cancer had spread.  He relied only on the CT Scan, and went after what could be seen.  Friend or foe?

Tami’s first Oncologist appeared to be very book smart, but not really experienced.  Every time we went to see her, we would bring a detailed list of the side effects Tami was experiencing from the chemo treatments.  She would dismiss the complaints, by saying, “people don’t typically have these side effects”.  Tami felt as though this doctor did not care about her as an individual, but only knew what to do for typical patients.  We learned early on that Tami experienced all of the less typical side effects.  Isn’t the goal of the Oncologist to help treat the cancer, and maintain the side effects at a minimum?  Friend or foe?  New Oncologist here we come.

Tami’s second Oncologist came as a recommendation from a friend of the family.  He was a Christian and treated Tami with the care and respect she had bee looking for.  For the first visit, he listened for almost 2 hours as she shared each side effect to the chemo treatment in detail.  At this point in the treatment cycle, Tami had been experiencing issues with her heart, so this Oncologist wanted to order some heart tests.  When the tests came back normal and after having met with a Cardiologist, the Oncologist offered several game plans to Tami.  He told her that the 9 of 12 rounds she had completed was probably good enough.  He offered to continue the current treatment, change to a pill form, or do nothing and just monitor.  This all took place about August.  In October, Tami started having pain in her abdomen.  We started the trips to urgent care and the ER all over again.  We even made a trip to her Oncologist.  He told her that there was NO WAY her pain could be related to her cancer, and that she needed to continue to de-stress her life.  We spent several months going to her primary care doctor, Urologist, OB GYN, Oncologist, etc.  In December, without doing any kind of diagnostic scans, her Oncologist declared her in remission, with just her CEA blood level (which her previous Oncologist said was not reliable with Tami).  While this was exciting news, Tami was still in pain, and we questioned whether or not his news was premature.  In January, we ended up in Pain Management, as no one could find what would be causing her pain in her abdomen.  She had her next check up with Oncologist, and he finally showed some concern.  He ordered a PET Scan, which showed suspicious spots in the abdomen.  He then ordered a CT and confirmed that there were 3 nodules in pelvis, one pretty large by her rectum.  He called her in to talk with her, and apologized for missing the spread.  He said that it is quite common for people with colon cancer to experience this kind of spread to the abdomen.  She was now Stage IV.  She was shocked, bewildered, mad…again, felt let down by those who took an oath to “First, do no harm”.  Friend or foe?

Tami made an appointment for second opinion with another Kaiser Oncologist.  We saw her once…yes this is Oncologist number 3.  She was very knowledgeable, very experienced, but had no relationship skills.  She started Tami on a second line chemotherapy.  This doctor ended up going out on medical leave.

This post has so much more to include…but I will spare you for now, and pick up with more about her doctors in the next post.  

Feeling Helpless

As the caregiver, you want to make sure you have done everything possible to help with whatever is needed.  But, sometimes there is absolutely nothing you can do and you find yourself feeling helpless.  With Tami, it was extremely important for her to maintain her weight, as she was already thin prior to her chemo treatments.  But, when someone has no appetite, or feels ill, most of the time, it was hard to find something that she would eat.  She knew that whatever she ate would probably increase her sick feeling, and either result in vomiting or diarrhea.  Neither of which any of us would consider fun.  To her, food was almost an enemy, but she needed it in order to sustain her health.  Different shakes were tried to increase her protein intake and give her much-needed nutrients.  In the last two weeks before she passed away, I could tell that she was not eating/drinking near enough to keep her body sustained.  I would offer everything I could think of that I knew she liked, and if she said yes to something, she would only take a couple of bites and say she was full.  The helpless feeling began to consume me, as I knew what would happen as a result of her not eating/drinking enough.  Like Tami, I had to look to my God, seek His purpose, understand His plan…not my own.

As the caregiver, you want to take the pain and suffering away.  But, you realize you can’t.  You might even contemplate how you could take this person’s place so they don’t have to suffer anymore.  Watching Tami live with pain for almost two years was so very difficult.  Pain meds didn’t work, ice didn’t work, nothing relieved her pain.  Where ever we went, we took ice packs for her to sit on.  She was not comfortable sitting, laying down, walking…it was so hard to watch and know there was nothing I could do.  The only One who can take away pain, is our Lord and Savior, Jesus Christ…and that is exactly what He did on November 19, 2010.  He reached down, took her broken, battered, ill, body home where she was given her new heavenly body…absolute perfection with no pain, no sorrow, no suffering, no blemishes, no illness, no nausea…

She was entirely healed.  Helpless turned into humbled rejoicing.  Humbled to have been given the opportunity to care for my best friend and all the lessons learned with her, and rejoicing that she was in heaven with her loving Lord and Savior. 

The Dreaded Treatment - Chemotherapy (First Course)

Well, thanks for understanding my little detour last week.  God is faithful and has filled my broken heart with peace, comfort, love and joy.  I am grateful for his loving care.

So, the next step for Tami was to see an Oncologist.  Her first appointment was with an Oncologist in Anaheim, as the one she was assigned to was out of town.  Her parents went to the appointment with her.  The Oncologist discussed her percentage of survival with chemotherapy and without it.  She also discussed the percentage of recurrence after the chemotherapy treatment.  Because the cancer had spread to the lymph nodes and the tumor broke through the muscle wall, she was Stage III T4.  In order to understand what this meant, off to the internet we went to look it up.  This became a habitual practice for us.  Stage III T4 means that the cancer had spread to the lymph nodes and broken through the muscle wall into the abdominal cavity.  No one appeared to be too concerned with the fact that the tumor broke through the muscle wall in the early diagnosis and treatment stages.

The Oncologist recommended the standard first line of treatment for Colon Cancer.  It is called Folfox and consists of 5-FU, Leucovorin, and Oxalipatin.  This particular treatment required that Tami have a port-a-cath placed under her skin as she would be required to wear a chemo pump at home for 3 days.  She was so nervous about starting chemotherapy and the side effects she could experience, yet she once again conquered her fear and anxiety.  It was hard to watch the nurse try to get the needle into the port, as it caused Tami a lot of pain.  Once the IV was hooked up, it was about a 4 to 5 hour day.  She was always very tired after her infusions.  The infusion nurses go over with you the possible side effects you can get from these medications, but they only go over the most common, not the least common.  We quickly found out that Tami was prone to the uncommon side effects. 

She made it through 9 of 12 rounds of this chemo cocktail (about 5 months of treatment).  The side effects had gotten to be so bad and hard to live with.  She experienced severe diarrhea, nausea, loss of appetite, weight loss, tingling in her extremities, mouth sores, “chemo brain”, and toward the 9^th round, irregular heartbeat.  She kept a very detailed thorough list of her side effects by day, time and what she took or did, to help with that particular side effect.  Every doctor appointment, we would take the list with us so she could discuss it with her Oncologist.  It was rather frustrating as all the doctor would say was, “typical people don’t respond that way”.  Obviously, Tami was not your typical patient on chemotherapy, yet this doctor refused to think outside of the box or offer any kind of relief from the side effects. 

Tami would listen to relaxation CDs during the infusion.  She would read through her devotional books.  She would work on her journals and grateful lists.  She tried to make the best of a horrible experience for her.  I tried to go as many times as I could to make sure the right doses of pre-meds were given, as well as the right doses of the chemo drugs.  Mistakes can be, and were, made.  She was always so grateful to have someone (me, her parents, her sister, her daughter) with her to help her advocate and also remember things she is told. 

She was truly a fighter, an inspirer, and a believer in faith and hope!!!

Unexpected Loss & Overwhelming Grief

Today's post is kinda out of order because I am jumping to today.  I will pick back up where I left off in the next post, but today I need to talk about Loss and Grief.  We all knew that the cancer was progressing quickly and that Tami would soon go home to be with the Lord.  From what the doctors were saying, we were all looking at February.  We thought we had at least three more months with her.  Friday, November 19, 2010 was not expected to be the day she breathed her last, according to the world of medicine.  I am learning that is the day God decided she had suffered enough and wanted to bring her home to paradise.  It is not how we would have wanted it.  We wanted our three months.  We wanted Thanksgiving and Christmas.  We wanted more days to spend with her.  But, God wanted different.  Why did He want that day?  Why did she have to get sick at all?  Hadn't she suffered enough in this life?  It is so easy to get caught up in the unfairness of it all and become angry. Angry at God for allowing her to become ill.  Angry at doctors for being incompetent.  Angry at circumstances, because if there is only enough money, you can access the best care and treatment possible.  And finally, angry at God again for taking her out of this world.

I remember the weaker Tami got, she would ask me what was happening to her...why she could barely stand and hold her own weight.  We talked about her body not getting enough nutrition to function and organs shutting down.  By no means was it a fun conversation, but I think Tami knew early that week that it would be her last week.  She spent the rest of the week preparing each of us for what was about to happen.  I came home from work on the Wednesday and sat on her bed with her.  She looked so exhausted.  I grabbed her hand and told her if she was ready to let go and this is all too much for her, she could let go.  I told her we would all be ok, eventually and that she would be in my heart forever.  She said that I would be in hers and that she would be waiting for me.  I knew after that conversation that it would not be long.  I should have started to expect Friday, but didn't.  Friday was a bitter sweet day.  She was to suffer no more and spend eternity with her loving Lord, but we who are left behind must figure out how to go on each day with such a big hole in our lives.  That is the challenge.

I can't help at this point to look at back at Tami's incredible journey and how she faced each difficult day before her with hope, faith, trust, belief, and peace.  Our challenge is to face each day without her with the same hope, faith, trust, belief and peace she did.  Hope that things will turn out for the good for those who love Christ Jesus.  Faith in a sovereign loving God who knows us by name and knows how our story plays out and ends.  To Trust in the Lord with all of our hearts and lean not on our own understanding, but in ALL of our ways acknowledge HIM, and he WILL make our path straight.  Belief that God will keep his promises to us, to be our comfort, our guide, our shelter, our deliver, our rock.  And finally that we would allow, as Tami did, the Peace that passes all understanding to guard our hearts and our minds...that we would rest, be still and know that He is GOD!!!  That we won't get angry, we won't hold grudges, we won't be unforgiving, but follow in her incredible footsteps and be forgiving and let go of the anger.  This doesn't mean there won't be moments of sadness, moments of anger, moments of overwhelming loss and grief, but in those moments, if we do as Tami did, and give ourselves to our loving, faithful, comforting Father, He will meet us in our time of need.  "Now to Him who is able to do immeasurably more than all we ask or imagine".


"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love". --Washington Irving