The Caregiver - Rick's Perspective

On the day before Easter, Jacqueline's brother-in-law, Bryon, hosted a brunch at his home in Bountiful, UT.  We had a wonderful time there with good food, good conversation, and a house full of happy children.  Sue had been working hard to prepare for a 100 mile bicycle race.  She looked great in a new spring/summer outfit.  We talked of our upcoming trip to Spain and Portugal.  Sue was loving her retirement and I was within a year and a half of retiring.  Life was good.

We were both aware of the upcoming biopsy of the lump Sue had recently found.  But we had gone through that three times before with negative results.  The biopsy was scheduled for the day after Easter and it was supposed to be nothing more than an inconvenience.  I watched closely as the doctor performed the procedure.  It was obvious that this was different than the previous biopsies.  The doctor was non-committal, but did say that the lump "looked suspicious".  We were scheduled to hear the results two days later. 

At the appointed time the doctor began by saying that the lump was cancerous.  She immediately started to explain the surgical procedure to remove it.  Sue began to cry and asked for a moment to process what we had just heard.  We were stunned.  At that point the lump was small and they didn't think that it had spread to the lymph nodes.  Surgery was scheduled for the next week.  We went along with the recommendation of a partial mastectomy.

After the surgery the surgeon came out to tell me that the lump was bigger than they thought and that it had spread to the lymph nodes.  They had planned on taking 2 nodes, but had taken 4 because the first 2 “looked suspicious”. Tissue samples had been sent to ensure that they had removed all the cancer cells.  They also had to test for hormonal reactants (all new vernacular for us).  When the tests came back we were told that the margins were not wide enough and more surgery was required.

The next week brought more surgery and more testing.  Her HER2 test had been borderline (1.85).  If it was above a 2 she would have an extra year’s worth of weekly chemo type drug infusions.  We really didn’t want that.  Retesting brought the reading within acceptable limits (1.43).  Yay!  The ER tests came back positive which means that she will be on medication to suppress all her estrogen for 5 years after all her chemo and radiation are completed.  She turned pale when she read that it causes weight gain.

The surgeries were invasive, but manageable.  The worst was yet to come.  They gave her a few weeks to heal and then the dreaded chemo began.  Her oncologist is a good friend, neighbor, and ward member.  His name is David Ririe and we have complete confidence in him and his abilities.  He explained that he wanted to be aggressive in the treatment.  Sue was in excellent physical shape and he felt that she could handle it.  He decided on a 2 week regimend (instead of 3) with a very strong chemo cocktail.  He also wanted her to have 8 treatments instead of 6.  The one side effect that I focused on was that it could cause headaches.  I knew that if this were the case, Sue’s migraines would soar.  That has certainly been the case.

The first time that we met with Dr. Ririe it was at the Cancer Center.  Sue was on her way to work at the Temple that day and was dressed very nicely.  Her hair was also at its best.  She looked healthy in every way.  As Sue was filling out paperwork I watched as a nurse helped a patient walk by.  Her bald head was covered by a scarf and she could barely shuffle along.  She looked like death was at her doorstep.  I felt my stomach turn over.

The first infusion was given on May 14.  We got there early for her blood work.  During her second surgery they had surgically inserted a port above her right breast (her left breast had the lump).  The port is used instead of having to find veins for the IV’s.  It has truly been a blessing for Sue.  Her veins are very small and hard to find.  This way they have direct access to an artery.  The first 3 IV’s were for nausea.  They then started the first chemical.  They are using 2 different kinds for the first 4 treatments.  The second chemical is red and very toxic.  Jacqueline is familiar with it and its effects and calls it Red Devil.

During the infusion the patient has a very comfortable recliner.  They also have a very pleasant view of the valley below.  The caregiver, however, gets the not-so-comfortable chair with their back to the window.  It reminds me of waiting for a flight in an airport.  The chair is not quite comfortable enough to be restful, you have hours to kill, but the WiFi is good.  We were at the Cancer Center for 5 ½ hours the first day.  We found that that was to be an average time for the first 4 visits. 

After the first visit they sent me home with a tremendous amount of material and a handful of prescriptions.  We hadn’t made it home before the nausea and migraine began.  Nothing helped.  Usually one Imitrex will end Sue’s migraines.  The 1^st pill did nothing.  The second pill two hours later did nothing.  Two more hours went by and I finally gave her a shot.  That seemed to help the migraine, but the nausea was unbearable.  I finally called the Cancer Center at about 9:30.  Our Dr. was not on call.  I spoke with another Dr. and was given a list of more items to try.  I took off on my 3^rd trip to the pharmacy that day.  The week dragged by.  Sue had at least one migraine every day and was continuously nauseous.  She was supposed to be drinking a minimum of 64 oz. of fluid each day.  Each sip made her nauseous.  I couldn’t find any food items that sounded good to her.  I would give her one piece of toast cut in quarters and she would eat one quarter and be done.  Everything tasted too sweet to her.

I had taken the week of her first treatment off work.  By the second week I was very concerned about her condition, but went to work on Monday.  Tuesday morning I was nearly ready for work and was talking to Sue as she sat in a chair in our bedroom.  She stopped responding to my questions and I went to see if she was alright.  She looked up at me and her eyes rolled into the back of her head.  Her pupils filled her entire iris.  I called her name and shook her.  She didn’t appear to be breathing and I couldn’t find a pulse.  I was frantic.  I called 911 to have an ambulance sent.  About the time that I was talking to the dispatcher, Sue came to and began to vomit.  At least she was alive!  They took her to the emergency room and started her on fluids.  Her blood work came back with a white blood count of 300.  The normal range is from 5,000 to 10,000.  She had bottomed out and was dehydrated.  I refused to leave her alone.  If I had left for work what would have happened to her?  I called Jacqueline and she made arrangements to come up to help me.

I was so thankful to have Jacqueline here to assist.  We poured over the material that we had received as well as the Internet to try to come up with food items that Sue could eat without getting nauseous.  We took her back for more fluids and each time she responded better.  She still had the migraines, but she was actually eating small amounts.  Sue lost 5 lbs. that first week and I was very concerned about what the next 15 weeks of chemo would do to her body.  She didn’t have the weight to lose.

The day after the fainting incident we went to see Dr. Ririe.  He changed some of her nausea medications and made sure that she had plenty of fluids via IV’s.  He then told us that he had scheduled an MRI the next day.  He wanted to make sure that the cancer hadn’t metastasized to her brain.  Yikes!  That hadn’t crossed our minds.  Sue had the MRI and it came back clear.

By the end of the first 2 week cycle Sue was feeling pretty well.  She had even had 2 days without a migraine!  She had developed what she calls her chemo cough.  It is a dry cough that never goes away.  It has been constant.  As we readied for the 2^nd infusion we both had some anxiety.  Dr. Ririe had told us after the emergency room visit that he would make the next infusion less strong.

When we arrived for the 2^nd treatment they took Sue’s blood work and were pleased to find that her white blood count was back up to 8,500!  Therefore they would stay with the original plan and give her the full dose.  I didn’t think that we could handle another 2 weeks like we had just been through.  As we came home from the Cancer Center we both braced ourselves for what was to come.  It wasn’t all that bad.  Was she nauseous?  Yes, but not enough to take her meds.  Did she have a migraine?  Yes, but the 1^st pill got it under control.  She was still tired and didn’t have much of an appetite, but it was controllable.

Soon after the 2^nd treatment Sue began to lose her hair.  It got to where it fell out as she walked.  She made an appointment with her hairdresser to have her head shaved.  I took her and was surprised at how emotional we both were.  It wasn’t so much the loss of her hair, it seemed to make all this so real.  She then looked like a cancer patient.

We now know when she hits bottom.  It’s on the 8^th day after her infusion.  We can prepare for it by making sure that she is isolated from other people, especially sick people, and by making sure that we take her in several times per week for fluid IV’s.  Sue’s sister, Connie, came to stay with her on her down week this cycle and it freed me up to work 5 days in a row.  That’s a first since Easter!

Throughout this process the support that we have received from friends, family, co-workers, and especially our wonderful ward family has been incredible and overwhelming.  We have wonderful meals delivered 4 days per week.  The cards, flowers, gifts, letters, emails, text, calls, and prayers in our behalf never end.  We are so blessed.  This is just a bump in the road and we will be stronger and more empathetic in the future.  Life is good.