Believe Me, It Takes Great Patience to be a Patient

It was only my second infusion, in early September of 2012.  I was sitting in the infusion center, IV in, and ready to go.  We waited over an hour for the Herceptin to come down from the pharmacy.  I was about to lose my mind.  I felt like I had already been so through much waiting for the radiologist reports, the oncologist visits, the breast surgeon visits.  I was so impatient in that moment, when Becky grabbed my arm and said, "You are going to have to learn to be patient, because this is the way it is in hospitals.  Things don't always run smoothly."  I take myself back to that conversation often, and am proud to say that I have taught myself to be a patient with a lot of patience.

Labs need time.  The pharmacy needs to be accurate. Every patient's questions need to be answered. Emergencies happen. All of which create continuous delays throughout the day within the hospital.

It may seem unreasonable and that your time is not important.  It may not seem fair. But, we all want  quality care. Dictionary.com defines it too well...to be patient...bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like. Believe me, it takes a great deal of patience to be a patient. 

So I am again reminded of this as I have had to be very patient over the past few weeks.  On February 13, it was time for new CT Scans.  I decided to get them a week early as my pain had increased leading me to believe that after only five good months, the Doxil was no longer working.  Sure enough, I was right.  I had minor progression.  Time to change treatments yet again. 

This time, my oncologist had a trial in mind for me. In looking at my options, I agreed with her that this seemed like a good direction to take.  It is a phase 1 clinical trial.  The pro being that it was a HER2 targeted treatment which I desperately need. The scary part being, this is a Phase 1 Trial, which is testing safe dosage levels for humans...or as my friend Susan hates for me to joke about, the next level higher than the lab mouse. 

It started with a full day at the hospital a week and a half ago.  A urine sample to make sure I wasn't pregnant...now that's funny, followed by 11 tubes of blood.  Then I was off to another part of the hospital for an ECHO.  While waiting for an hour for my name to be called, found out I had to go to another area of the hospital for the CT Scans.  Finally ending with an EKG.  Suddenly, it was 2:00 and I hadn't had a thing to eat and only a cup of water. But after it was all said and done, I found out the next day that I qualified for the trial!

I started the drug last Wednesday. Arriving at the hospital at 8:00 am, I started out with another blood draw. They moved me into a room in the clinical research hall of the hospital where Ben and I hung out waiting for the blood tests to be completed and the pharmacy to send my treatment. The first drip of the infusion started at 10:46.  Over the next 90 minutes, it continued to drip...meanwhile they watched over me making sure I wasn't going to have an adverse reactions...vitals every 15 minutes.  Two more blood draws at 2 hours later and 4 hours later.  It was a long day! 

I will receive these infusions every three weeks. Luckily, the days will not be as long as the first. Now we hope for the best!

I am a fidgety person who has trouble sitting still. I never dreamed that I would ever be patient enough to deal with this craziness cancer has brought to my life.  But we do what we have to do. And I often have to remind myself...it takes a great deal of patience to be a patient.

Thank you for all you love, support, and prayers! 
Please pray that this treatment will work...for a very long time!




Comments

  1. Hi, Lori, I am thankful everyday I can read and write otherwise all the waiting I have done related to my cancer care would have made this process so much worse. Oh, the life we lead . . .
    I am hoping to hear good news from you in a future post about this trial you have started. Can you tell me the name of it. I am Her2neu+ as well so I try to keep informed of any new drugs that might one day help me. Thanks.

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  2. Well said Lori. You are in my thoughts and prayers. Hugs!

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  3. Wow! You are certainly a very admirable and strong woman! Hugs and prayers to you, Lori!

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