“Why do I always feel like there’s something stuck in my throat?”, I asked Ken for the hundredth time. We were in Panama and I was plagued by a feeling of choking – my throat constantly felt like there was something blocking it. Luckily, I wasn’t really choking. I could eat. I could breathe. I was just really uncomfortable and after 3 months I was over it. We had a week to play in San Jose, Costa Rica before a quick trip back to San Francisco, CA, so I decided to engage in my own medical tourism while Ken checked out Costa Rican dental procedures. I walked into the Hospital Clínica Bíblica and said that I’d like to make an appointment with an ENT. They smiled and gave me an appointment for the next day – really, the next day, less than 24 hours. Amazing.
Ken came to the appointment with me. The doctor spoke excellent English and after asking about my symptoms and medical history decided to look down my throat. The three of us walked across the hall and watched the computer screen as a camera was slid down my throat and I tried not to gag. “It’s inflamed,” he said, “but there is no sign of anything else. It’s not cancer.” Being almost 9 years out from diagnosis and treatment of Stage III breast cancer, I heaved a sigh of relief. “You have GERD (Gastroesophagial Reflux Disease or agita). You should drink aloe vera juice or you can take a medication like pantoprazole.” After trying to slug down my first bottle of aloe vera juice, I decided that I was more of a pantoprazole kind of girl.
We spent February in San Francisco visiting family and going to routine medical appointments. During the visit to my primary care physician of 20+ years, Dr. Birnbaum, I mentioned the GERD and the fact that the pantoprazole didn’t seem to be doing anything. He decided that at my age I shouldn’t have new onset GERD so he ordered an endoscopy to find out what was going on. I had the endoscopy done by Dr. X, at a cost of $6923, the day before we were flying back to Costa Rica for our next house sit. I had had a cold and was still coughing. I learned that one’s cough reflex recovers from anesthesia more rapidly than one’s bladder control. Doctor X told me that I was his only patient to ever pee their pants – always striving to be first, that’s me! – but also assured me that everything looked normal. Ken raised his eyebrows at me when I emerged wearing a pair of borrowed scrub pants but luckily held back his curiosity until we were out of the building.
We were sitting at our gate in the airport early the next morning and I was compulsively patting all my pockets to reassure myself for the fifth time that I really did have my wallet, passport and boarding pass when the phone rang. Ken answered and passed it to me. “This is Dr. X. I received the results from your endoscopy and there are abnormal cells in your duodenum. You have a tubulovillus adenoma. This is not something to take lightly. These things can turn into cancer so you need to have it followed up. You need to have an endoscopic ultrasound done so that we can find out more.” “Great”, I thought. “Okay. I’m going to Costa Rica today but I will follow up. Would you please send me the contact information for the physician who does the endoscopic ultrasound procedure and would you please email me a copy of the biopsy results?” “You don’t need to contact the physician. I will send the referral and his office will contact you,” he replied. I ended the call and looked at Ken, “Abnormal cells.” Ken’s eyes looked a little glassy and wet, “So what’s next?” “An endoscopic ultrasound. I’ll get an appointment and fly back but for now we’re going to Costa Rica.” They called our row and we got on the plane wondering if they served wine on 7:30 AM flights.
Get her done! The Garrett family medical battle cry and one to which we Markles also fully subscribe. Once we got settled at the house sit I was intent on following up so I could get past this and move on with the rest of my life. Despite there being a cell tower at the entrance to the town, the Internet connection sucked at the house in Matapalo, as did the cell phone reception, but most restaurantes in the area had wifi connections so I was able to send repeated emails to Dr. X’s office followed up with very brief phone calls. “I know I’m not supposed to use Dr. X’s email address but I sent another email this morning. I still haven’t heard anything from the office to which I was referred. Would you please, please, please, send me the contact information so that I can follow up and get an appointment?” Emails, calls, messages, they all seemed to effervesce into the cosmos leaving no lasting effect here on earth. Finally, I couldn’t stand it anymore. Ken drove me to the bus station in Quepos and I headed back to Hospital Clínica Bíblica. Once again I walked in and asked for an appointment, this time for an endoscopic ultrasound. Again, they smiled and made an appointment for me for the next day. No questions about insurance. No demands to see a referral from a physician. Granted I did have to hand over my credit card before they did the procedure but the cost, $1363, was nothing compared to the US.
Dr. Alvaro Villalobos Garita and his team performed the endoscopic ultrasound and found that there was a lesion associated with an adenopathy, in other words there was a tumor with a swollen lymph node next to it. Not exactly what I wanted to hear but not surprising given the results of the earlier biopsy. Dr. Alvaro Villalobos Garita reviewed the results with me and suggested that I follow up with a surgical oncologist, Dr. Eduardo Sáenz Corrales with whom I met the following day.
The doctor was wonderful and spent a considerable amount of time with me discussing various scenarios and next steps. He suggested having a CT done and a repeat endoscopic biopsy. Obviously the lesion would have to be removed but the extent of the surgery would depend on its location and whether or not it turned out to be cancerous. During the surgery the lesion would be analyzed to determine if it was cancerous and the margins would be checked to ensure that all of the cancerous tissue was removed. Worst case scenario – Whipple Procedure. For those of you who don’t know what a Whipple is, be thankful. During the procedure they remove the duodenum (the first part of your intestine), your bile duct and gall bladder and a portion of your pancreas along with all the associated lymph nodes and mesentery after which they hook whatever is left over back together again. No problem. I made an appointment for a CT scan the following day and went back to my hotel to call Ken and let him know what was happening. He was not happy, nor was I. We agreed that I would bus back down to Matapalo the following day after the CT scan.
The CT scan was done the next morning. I handed over my credit card to pay the $1,588 fee, slugged down some delicious barium contrast and was led into the CT room where I discovered to my horror that the procedure would also entail an enema – oh happy days, oh lucky me! I distracted myself by insisting that the nursing student start my IV for the intravenous contrast I would also have – once a nursing preceptor, always a nursing preceptor. After the procedure I waited for half an hour and was given 2 discs showing the procedure that I could bring back to the States with me if that was what I decided to do.
When I got back to Matapalo, I received an email from the surgical oncologist. He had gone and reviewed the CT results with the radiologist. Having physicians work together was pretty exciting and novel to me. The results of the CT scan were good – all the organs appeared clear and there was no evidence of a tumor. There were additional swollen lymph nodes but overall the CT showed no malignant findings.
Ken and I discussed our options and alerted the home owners of our situation. They were gracious and understanding with us throughout the ordeal. Should I go back to San Jose and have the repeat endoscopic biopsy done or should I go back to the States and see my oncologist, Dr. Ari Barron, who has been treating me for years and in whom I have a great deal of faith? One of the reasons I love my oncologist so much is John Chard, RN, OCN. John is my guardian angel. We spent some wayward years together during high school, a miserable time for both of us, but had lost touch with each other for many years. It was fate and serendipity that brought us back together at Dr. Baron’s office. So it was John I reached out to when I started to freak out. His response, “Lymph nodes can be from anything. Can be reactive from inflammation from nonmalignant process. You’re getting ahead of yourself. Focus on the first next step, getting here and having the biopsy here. A biopsy there will not help you here. Come home. That is all ❤️” And so, despite having doctors in Costa Rica who gave me their cell phone numbers and their email addresses and who would see me within 24 hours if necessary, I went home to California, and left Ken to continue the house sit.
My parents picked me up at the San Jose, CA airport on March 20th, a month after the original endoscopy. During that month, despite repeated pleas to Dr. X, I still had never heard from the office that was supposed to do the endoscopic ultrasound with biopsy. Once again, I reached out to John, “Help!” He sent in a referral and gave me the office contact information right away. Yahoo! Only one month to get the name and contact information for a doctor. Things were looking up. I called the office. “We just received the referral at the end of last week. We never received a referral from Dr. X we only have the referral from Dr. Baron. Before we can schedule an appointment with Dr. Y, you will have to talk to our business office so that they can coordinate with your insurance company and determine what part of the fee will be your responsibility.” “You’ve got to be kidding me. I can’t make an appointment and then speak to the business office?” “No.”
Two days later, not having heard back from Dr. Y’s office, I called my insurance company. The clinicians there had received the information and had determined the procedure to be medically necessary and had agreed to pay for it. I called Dr. Y’s office back, “My insurance company says they approved the endoscopic ultrasound with biopsy. Can I schedule it now?” “No. I haven’t received notification from our business office. When I do, I’ll call you.” Late the next day, I got the call, “We can schedule your procedure for April 18th.” “April 18th? Isn’t there anything earlier?” “No.” So, rather than moving back in with my parents for the month, I went back to Costa Rica to hang out with Ken and Omber while we waited.
Ken and I coordinated an early hand off with the home owners and flew home for the long-awaited procedure with Dr. Y. We met Dr. Y in the surgical suite pre-op. He said that he was going to do the endoscopic ultrasound and depending on what he saw he would either take additional biopsies or put me under deeper anesthesia and excise the lesion. Ken was surprised when I was wheeled back out to post-op just a short while later. Odious. Apparently Dr. Y does not leave the surgical area so we met with him in an empty surgical suite on metal folding chairs. He came in and said, “It’s cancer. It’s friable so I didn’t even want to do a biopsy and risk spreading it. You need to have a Whipple done.” He then turned around and left. Ken and I look at each other. Warm and fuzzy he was not but he was highly thought of by my referring doctors. Some people are more comfortable with me only when I’m anesthetized I guess. Next step.
“What is the next step?” once again I contacted John. “You need to have the surgery done by Dr. Assad Hassoun.” (I had done some research on the web and knew that the more experience a surgeon has doing the Whipple the better the results. The death rate drops from 15% to 1%.) Unfortunately Dr. Hassoun was in Iraq training doctors and performing surgeries, a mitzvah he performs every few months. “You will wait for him. He is the best.” And so I waited. The first time I saw Dr. Hassoun, I knew waiting was the right decision. This tall, burly Iraqi man was the opposite of Dr. Y. He was warm, kind, supportive, empathetic, gentle…I could go on and on but suffice it to say that I was in love. Luckily, Ken was too, at least with me. We scheduled the Whipple for May 10th.
On May 9th we were walking back to the beautiful apartment we had rented in Bernal Heights when the phone rang. I hate phones and didn’t have one, that’s why Ken answered it, and passed it to me. It was Dr. Hassoun’s office saying that he would not be able to do my surgery tomorrow as he would be under the knife himself, having his torn knee meniscus surgically repaired. Oh no! Weekend warrior? No, just a gardening accident. My Whipple was rescheduled for June 2nd. I was not happy. “It was abnormal cells, then a lesion with a swollen lymph node, then cancer. I don’t think I should be waiting. This is crazy,” I burst into tears as I spoke to John. “What pharmacy do you want the Ativan prescription called into?” he responded. Once again he had talked me down and convinced me that waiting for Dr. Hassoun was my best option. And so I waited and we threw a party. The email invite’s catchline? “Come join us for wine and cheese – Last chance to see Theresa with her duodenum.” We knew that all of the support our friends and family offered would get me through this. The party was great. The waiting was not.
Finally on June 2nd, I went to the hospital to have my Whipple Procedure done. I walked into the surgical waiting room and was greeted by a nurse, “You’re the Whipple patient?” she asked. Apparently I looked pretty good compared to most people going in for the procedure. Most Whipple patients have pancreatic cancer and many times they have already been through chemo, radiation, ongoing agonizing pain and all the other wonderful GI symptoms that accompany the disease and the treatments. The next one in was my anesthesiologist. “Wow. You’re skinny. You look healthy. Maybe I can do an epidural. It’s the best way to control pain during and after the surgery. Dr. Hassoun doesn’t usually let me do them but maybe this time he will.” Obviously thrilled at the thought of placing a big needle in my spinal canal, he went flying back out the door to get the okay from Dr. Hassoun. Epidural approved, I walked into the OR, greeted the team and bent over a gurney so they could access my spine. Next thing I know I’m in a hospital room listening to the nurses converse loudly across the hall.
The Final Biopsy
Unbelievably, the biopsy results came back negative! We found the mass before it had mutated enough to become a carcinoma. Oh joy of joys, this meant I wasn’t going to have to do chemo or radiation. I wasn’t going to have to stay in San Francisco for the next six months. We could continue our travels. I am incredibly lucky. I sometimes wonder if they had done a frozen section during the surgery would I have been able to keep more of my guts but since I am now completely back to normal, I don’t care.
I spent 7 days in the hospital most of which luckily are a blur now. The anesthesiologist was right. The epidural was amazing. I had no pain. He came by the shared room a few days later to remove it, checked that my nurse was ready to switch me to an IV-delivered analgesic and painlessly slipped it out. The only problem was that my nurse was not as ready as she thought. The pain was bad. As the RN continued to struggle with the machine I begged her to give me something through my IV – I had one in my arm and 3 tubes sticking out of my neck so it wasn’t as if access was a problem. Luckily she eventually got the machine working and the opioids once again clouded my memory so that in retrospect it doesn’t seem like the initial recovery was that big a deal. Doesn’t everyone in the hospital spend at least some time curled into a fetal position crying and moaning? I did, according to Ken.
There were a couple of things for which I was not prepared. One, I was not allowed to eat or drink anything including ice chips and water for a few days. Luckily they kept me very well hydrated via IV so I don’t remember it being as appalling as it sounds. Then again maybe it was horrendous but with a tube in my spine delivering opioids continuously it just didn’t register. Two, I was not given any of my usual oral medications while I was in the hospital. For the first time in many years, I was suddenly off my antidepressants. This may account for my tearful recounting of a nurse’s dubious actions towards me to a very confused resident who wasn’t sure exactly where I was going with my tale. At this point, I have no clue either. By the time I was discharged, I was eating soft, solid foods and using oral pain medications. Ken and I had assumed that I would probably not be able to go up the spiral staircase to our gorgeous loft but it was not a problem. I very happily settled into bed and looked out over the San Francisco skyline.
Life Post Whipple
I was glad that we had splurged and rented a beautiful home – not one of the cold, damp basement apartments we had seen. I spent the next month watching TV and walking a little bit further every day. So much for the plan to study Spanish and do some writing but that plan is always with me.
I only took pain meds for one day and that was mostly for my back. I ate delicious mashed potatoes, cottage cheese, ice cream and yogurt to begin with but soon I was eating most things with the exception of very spicy or acidic foods. I did have some problems with bloating that repeatedly made me look as if I was 9-months pregnant for a couple of months but even that eventually went away. I lost 6 pounds but ironically gained an inch in my waist which somehow seems unfair to me but I don’t care enough to actually start doing sit-ups. It is now December and since my Whipple we have been to Victoria BC, Philadelphia, Reykjavik Iceland, Amsterdam, Barcelona, Madrid, Portugal, London, Tanzania, Malawi and Zambia and I plan to just keep going! 2018 will mark my first Whippleversary and 10 years since my breast cancer diagnosis. Have I mentioned that I feel incredibly lucky and spoiled?
One note here. I still have the feeling of something stuck in my throat. But that’s OK.