Archive for the ‘Caregiver Spotlights’ Category
Mother of a testicular cancer survivor
In January 2014 my twenty-four year old son, Alexander, had the world by the tail. He was in his final year of Geology at the University of British Columbia (UBC) with the promise of graduation in May and dreams of a permanent research job in Canada’s oil patch. He had arrived home for Christmas tired and gaunt but as parents, my husband, Ross, and I recognized the combined signs of late nights in the lab and living on your own eating unbalanced meals. He looked the picture of undergraduate health and well-being. I had spent a couple of days with him two months earlier as I headed to Japan to visit our daughter, Victoria, and was pleased to see how well he looked. We had not seen him since the previous Christmas, as he had chosen to stay on campus to participate in a research project during the 2013 summer term.
Ross and I had waved goodbye on January 6th with parental words of encouragement regarding the final push to complete research papers and excited promises to book our flights to Vancouver for May’s graduation ceremonies. Within a day or two of his return to Vancouver, Alex called asking for advice about shortness of breath and chills. Because H1N1 flu was rampaging across western Canada accompanied by the fact that Alex had just been on two five-hour flights with poor air quality, we assumed that is what he had picked up. In true mother-form, I offered the suggestion of chicken soup and getting to bed on time. I called him the next day and, because he was not feeling any better, suggested that he go to see a pharmacist and find an over the counter medication for flu symptoms. Because it was the weekend and Alex has never been one to take medications, he chose instead to sleep and hoped that he’d feel better on Monday.
It was impossible to contact him during the day while he was on campus because Alex did not own a cell phone. We have since remedied this situation. Due to the fact that we had not heard from him since Sunday afternoon, we assumed that he had shaken off whatever had been ailing him and had headed to class. Because both of our children live away from home, every evening before going to bed I check my email to see if either of them has contacted me. Imagine my surprise when I discovered an hour-old text message from Alex telling us that he’d collapsed in class and had just been told that he has cancer. I remember telling Ross that I hoped that one of Alex’s friends had grabbed his iPod and decided that this message was somehow a joke. We both agreed that Alex chose his friends well and that none of them would be drunk or stupid enough to think that we’d find this funny. I replied with a question mark and hoped to receive something from Alex. It was well past midnight before I heard anything from him. By this time, Ross had had to head off to bed because he had a 6am Skype meeting with colleagues in Spain. We had agreed that I’d wake him if needed.
I sat alone crying in my dark kitchen staring at the computer screen willing Alex to let me know what was happening. It is extremely hard knowing that your baby boy is out there somewhere hurt and petrified. All that you want to do is be with him and take the fear and pain away. As I sat waiting, Victoria popped up on Skype. She was sitting at work in Gifu (Japan) and noticed that I was active on Facebook in the middle of the night and she wanted to know if I was all right. Without thinking it through, I blurted out that her brother had cancer and that I was waiting to hear from him. This was the first time in her life she was at a loss for words. It may just have been a result of something akin to shell shock but I found this quite comical and burst out laughing. Unfortunately she had the volume turned up on her computer’s speakers so everyone in her office heard the news and then heard her crazy mother laughing. Thank goodness most of them speak no English but they were able to see the blood drain from Victoria’s face so they knew that she’d received bad news but then were very confused to hear me laugh. Oh well, these are the joys of sending your children to work abroad. Victoria’s first reaction to the news was that she’d come home immediately to which I responded with an emphatic ‘no, stay put.’ This may sound hard hearted but at this point, I had no answers about Alex’s future and I wasn’t in any position to have to deal with Victoria’s questions and concerns. I told her that I’d revisit her offer once I knew what the future held.
Throughout the night, Alex was able to send a couple of text messages letting me know that he had testicular cancer, that a surgical resident had talked to him about removing the testicle immediately, that he wanted me to come to Vancouver asap, and that he was scared. Without a cell phone, Alex was only able to text between blood draws and ultrasounds and only when he could find a WiFi connection. Waiting for the next message was driving me crazy plus Victoria kept Skyping me wanting to know what was going on.
At this point, I knew I needed help from someone on the ground and realized that we know only one couple in Vancouver. Chuck was a childhood friend of Ross’s and we’d met his wife, Dana, only once but I decided to try calling before it got too late. At about midnight, Vancouver time, Dana picked up on the first ring. I introduced myself and told her what had happened. She was wide-awake and ready to help. Because Chuck is a radiologist at VGH, she knew how to bypass the hospital switchboard and was able to track down Alex’s whereabouts to the Emergency Department and get me the name and number of his nurse. Dana then offered to stay awake all night in case I needed her.
As I sat in amazement that an almost complete stranger was willing to forgo a night’s sleep in order to be of assistance, the phone rang shocking me back to reality. It was Alex! A nurse had noticed him fumbling with his iPod trying to send messages and had loaned him her cell phone. When he explained that he was texting his parents in Ottawa and that he didn’t want her to incur long distance charges, she told him that his parents were probably worried about him and that he could talk as long as he wanted. It was wonderful to hear his voice. Even though he was on the verge of crying and I was doing everything in my power not to let him know that I too was battling tears, he was able to give me a synopsis of the day’s events.
He’d awakened that morning still not feeling 100% and got himself to campus. After his first lecture, he went to talk to his prof about an assignment and the next thing he knew, he was lying on the floor looking up at a sea of faces. Once folks realized that he was coherent, the other students went their separate ways but the prof remained by Alex’s side until he could sit up. UBC’s protocol is to call an ambulance but the prof realized that the location of the geology building made it very difficult for a motor vehicle to approach and that UBC Hospital was a three-minute walk from the front door and Alex was mobile. This gentleman stayed with him while he had a blood test and waited for the results. Alex laughed when he related the story of the doctor coming out to the waiting room, scanning the patients, and calling ‘Alex’. Alex raised his hand and the man approached him with the statement, ‘Well, I guess that you’re not pregnant.’ I can only guess that the blood tech had written ‘Alex’ on the vial so the doctor wasn’t sure is this would be a pregnant Alexandra or a cancer riddled Alexander. Alex was then asked if he was a smoker (no) and then, the all-important question, ‘Do you have a lump down there?’ I have since spoken with Alex’s prof and we both wonder what kind of doctor refers to a lump on a young man’s testicle as ‘a lump down there’. Alex admitted that he’d found the lump in August 2013 but had hoped that it would just go away. Alex had to say goodbye to his prof as he was then sent by cab to VGH for further tests. At Emergency, he was sent for an ultrasound and more blood work. A surgical resident talked to him about the immediate need to remove the cancerous testicle. The thought of surgery scared him as he’d never had surgery before but the resident was very persuasive so he signed the permission form. Because Alex had been having problems breathing, he was then sent for a chest x-ray. Once he’d been returned to the Emergency Department to wait for the surgical resident to prep him for the OR, a wonderful nurse loaned him her phone to call home. As we were chatting, Alex told me that he had to go as someone had come to get him. I remember telling him that I’d be in Vancouver as soon as I could get a plane ticket and that we loved him ‘to the moon and back’. Once I hung up and realized that my baby was going into surgery all by himself, irrationally I felt like a failure for not being with him in his time of need even though rationally I knew that I had done nothing wrong.
Because I wasn’t expecting to hear from him during surgery, I spent the remainder of the night booking my flight, catching Victoria and Dana up on the latest news, creating a ‘to-do’ list (contact someone at UBC to let them know that Alex isn’t skipping class; cancel chiropractor appointment; figure out how to tell my mum that her grandson has cancer which caused me to be thankful that his other 3 grandparents were already dead. Seeing this last point in print has made me realize just how my mind was working that night.), and counting the minutes before I thought it was wise to wake Ross and ruin his day. Because I had been operating on adrenaline, fear, and nerves, I had forgotten that our family had one other member that needed to be included in all decisions. We have hosted international students since 1998 and Emma had been living with us since 2012 while she attended high school. The fact that our hosting contract clearly stated that minor female students must not be placed in a home with a single male, only added to my growing laundry list of things to sort. Before Ross and Emma awoke, the phone rang again bringing me once again back to reality. I remember being aghast hearing Alex’s voice. Before I clued into the fact that he was telling me something important, my mind conjured up all sorts of scenarios … the surgery had been postponed; the surgeon had opened him up and immediately closed him because the cancer had spread throughout his body; Alex had changed his mind and refused surgery; or, this was all just a bad dream, Ross would pinch me and I’d wake up. That night, my mind was a wild and wooly place.
Alex explained that the doctor who’d approached him was not the surgical resident but instead, an oncologist from the British Columbia Cancer Agency (BCCA). This gentleman told him that chemo must be started immediately and surgery could wait. Alex had no idea exactly what this meant but if it meant no surgery, he agreed to accompany this gentleman. Alex’s guardian angel came in the form of Dr. Christian Kollmannsberger. A VGH radiologist had read Alex’s chest x-ray and what he saw caused him to contact Dr. Kollmannsberger. The x-ray clearly showed tumours on both lungs and fluid in the chest cavity causing Alex’s shortness of breath. In Dr. Kollmannsberger’s opinion, yes, the testicle did have to be removed but the more pressing issue was to stop the cancer from spreading further. The orchiectomy could wait. Alex seemed to be quite at ease with this turn of events because, in his words, ‘I like Dr. Kollmannsberger, he’s very calm.’ I let Alex know that I’d be arriving in Vancouver the following day and we both hung up feeling serene for the first time in six hours.
Functioning under the impression that Alex was now in good hands (at this point I’d not yet met Dr. K. and I knew nothing about the reputation of the BCCA, I just knew that my son was calm and that was good enough for me) I spent the remainder of the day going through my to-do list but first, I filled Ross in on what had happened and broke the news to Emma. She immediately stated that she wanted to stay with us and not be moved if I had to stay in Vancouver longer than a few days. My plan was to go and fly Alex and his diagnosis home for treatment at our local cancer centre so I asked her to hold off telling her parents until we had a better idea what the future held. Like most huge bureaucracies, it is almost impossible to find a direct contact number for a specific service at UBC. I decided to make a cold call to the Faculty of Science and hope that I’d be sent to the person who could provide answers. Once I’d explained the situation, I was immediately connected with the head of ‘Science Advising’ and was surprised to learn that this gentleman already knew about Alex’s medical situation. It is nice to know that when a student collapses in class, word gets out to the people who need to know. I was told not to worry about his academic situation and that once we knew if he was able to return to his studies, to contact him and we’d discuss how to make up for any lost time. This one call has resulted in Alex’s degree completion being handled by the head of ‘Science Advising’ which has caused Alex to smile many times as this is one of those offices that treats undergrads like cattle. Instead of having an assigned councilor who might remember your file, you take a number and talk to whoever is next available. Alex now understands that there is a silver lining to cancer. He is enjoying being able to walk into this office, bypass the check-in desk, and go straight to see his advisor.
I packed for two weeks and left home the following day. Little did I know that I’d be gone for 346 days.
Upon arrival at the BCCA, I discovered Alex hooked up to IV chemo and in good spirits. I met Dr. Kollmannsberger and was told that Alex had ‘non-seminomatous germ cell tumor with extensive lung metastasis, brain metastasis and primary tumor in situ’. Before I could process this information, I was hit with the following: ‘Despite the extensive metastasis, your son still has a 30-50% chance of being cured. We’re going to avoid bleomycin due to his extensive lung involvement and rather treat him with 4 cycles of ifosfamide, Cisplatin and etoposide. After chemo, the resection of his primary tumor and potential resection of residual lesions will be done. As for his brain metastasis, it depends upon the post chemotherapy staging and could potentially involve cranial radiation or surgery, or just simply surveillance.’ I knew that Alex was sick but hearing that he had only a ‘30-50% chance of being cured’ made me feel like I’d been hit by a locomotive. I was able to collect my thoughts and asked when I could take Alex back to Ottawa for treatment. Dr. K. patiently explained that Alex was so sick that that he possibly wouldn’t survive the plane trip. I figured that my planned two-week stay had now been extended to three months.
I had given little thought as to where I’d stay while in Vancouver. Dana had offered me a chesterfield but Alex’s nurse suggested that I stay with him that first night. The lounge chair in his room made out into a single bed complete with sheets and a blanket. Alex went calmly off to sleep that evening happy in the knowledge that I was there. At 3am, all hell broke loose. Alex woke up screaming that he was drowning. I shot out of my lounge-bed and nurses arrived within seconds. Alex, covered in sweat, his eyes as big as saucers, gasped for breath. One of the nurses added something (possibly a relaxant) to his IV. Within minutes, Alex was noticeably calmer but his breathing was still shallow. It was suggested that we try to get back to sleep, the lights were turned off and Alex was soon asleep. I however, was awake the remainder of the night.
My first full day at BCCA was one of uncertainty. Alex was seen by a respirologist who made comments about inserting a chest tube and draining ‘the fluid’. I asked if the fluid was blood and was told that this information would not be known until they saw what came out. I don’t know why medical people can’t just answer a question rationally instead of hedging their bets. Even I, a person with no medical training, could connect Alex’s dots. His chest x-ray showed tumors on the outside of his lungs; beyond the chest cavity are ribs; lungs expand when inhaling; lungs covered in tumors rub against ribs causing bleeding therefore, the unknown fluid is blood. I’m not sure what other type of fluid the respirologist thought it could be. Alex was not at all pleased with the thought of a chest tube. Every time he’d think about the procedure, he’d panic and hyperventilate causing his blood pressure to skyrocket. It wasn’t until later in the day when he was unable to lie flat and successfully breathe for an MRI that it became medically necessary to suspend chemo and return him to VGH to drain his chest. My job during the tube insertion was to keep him talking so that he wouldn’t dwell on what was happening. This was a bit difficult to do as we both watched the procedure as it was reflected off the doctor’s face shield.
Alex spent 10 days at VGH while 4 litres of blood was drained from his right chest cavity. During this time, it was my job to convince him that his stitches were strong enough that he could get up and walk around. Of course the physiotherapist and his nurses told him that walking was the best exercise, as it would reduce the possibility of blood clots and bedsores. Alex however knew better. He was convinced that if he just lay still, the blood would drain and he’d suffer no complications plus, the tube hurt when it rubbed against his lung and the stitches pulled with every step. At first, I tried gentle persuasion but when that didn’t work, out-right bullying and threatening did the trick. Sometimes being a caregiver means pulling out the big guns. Alex wanted to return to BCCA and restart chemo so that he could see some progress but couldn’t until the blood had drained. I think I finally resorted to telling him that I’d call Dr. K. and tell him to cancel Alex’s chemo because he had decided not to co-operate and get his body moving. He acted just like he did when he was four years old when told that he couldn’t do something because he’d chosen not to complete another task first. He dug in his heals, found his inner strength and walked those halls. During this period, we were also introduced to the fact that he was expected to inject himself daily with a drug designed to boost his immune system for the first ten days following each chemo cycle. Alex had never had a needle phobia but injecting himself was beyond his tolerance. Various nurses tried to teach him but he’d lower the sharp to within a hair’s breadth of his skin and couldn’t complete the injection. I had injected our diabetic cat only a couple of times but it was enough experience that I knew I could do it. What I had not considered was the fact that injecting your cat is very different than injecting your son. As much as I loved my cat, I had 24 years of memories and love tied up in this young man. No parent wants to deliberately cause their child pain but, Alex and I worked out a system where he’d fill the syringe and swab the site. I would then count down from five and inject on zero. We actually became quite good at it however, some days he’d tense his abdomen and that injection would result in a lovely green-yellow bruise. We laugh about it now but neither of us misses this routine.
Since arriving in Vancouver, I’d been camped out on our friends’ chesterfield and as comfortable as I was, I knew that this could not go on forever so I hit the streets looking for accommodations. Alex had been living in what I refer to as ‘student dump housing’. He was renting a moldy, cold, damp room in the basement of a family home. While he was healthy, a little mold and mildew wouldn’t hurt him but now that he was undergoing chemo, he could not return to this dive. Staying in a hotel or at a B&B was financially out of the question and because universities were in session, furnished rental units were at a premium. I also needed a place near BCCA and VGH as well as on a transit link as I had no vehicle. Unknown to me at the time, many homeowners near VGH have turned their homes into ‘Guest Houses’ intended for folks who’ve had to come into Vancouver for medical treatments. The accommodations I chose can best be described as a ‘bed-sit’. It was located a 3 minute walk from the front door of VGH, a 10 minute walk to BCCA, an 10 minute walk to the grocery store, and a 4 minute walk to the laundromat. We had a room with 2 single beds, a TV, a chesterfield and chair, a full kitchen and bathroom plus a balcony. At this time I was still under the impression that we’d be home by Easter.
As the caretaker of a young adult cancer patient, my days were spent keeping Alex’s mind busy. Because his physical strength had been zapped, he did spend many hours sleeping and playing video games. Because Alex had always enjoyed photography, a friend advised me to research photography Meetup groups in Vancouver. I had never heard of ‘Meetup’ before and was thrilled to discover this on-line organization. With a couple of mouse clicks, we became members of ‘Vancouver Photowalks’ (http://www.meetup.com/Vancouver-Photowalks/). This became our major social outing during the two-week breaks between chemo cycles. Members understood and accepted Alex’s limitations as he struggled to keep up with the group and many offered to walk with him so that I could go on ahead and enjoy the company of others. We tried not to miss a single outing. Even though Alex’s stamina waned with each chemo cycle, he was determined to attend all photowalks. This actually made my job a bit easier because he set himself a goal and worked toward it. So that we did not sit in our tiny rooms and drive each other crazy, we’d go for walks, go grocery shopping, and do laundry. We even managed to fit in a short trip to Vancouver Island and Whistler. Of course, these break weeks were not all fun and games. There were always the routine blood tests that often resulted in panicked calls from Dr. K. telling us to return to BCCA for either a blood or blood & platelet transfusion. This meant hours of waiting while Alex’s blood was typed and crossed before the bags of blood or platelets would be sent by taxi from the Red Cross office a half hour’s drive away from BCCA. I once offered to ask our landlord if he’d drive me to the Red Cross and I’d pick up the blood myself. I was told that the protocol of the Red Cross was that an unknown taxi driver was more trustworthy than a patient’s family member. I’m not sure what the Red Cross thought I’d do with these blood products.
During chemo weeks, Alex remained at BCCA as an in-patient. During his stay at VGH, he managed to pick up Vancomycin-resistant Enterococcus (VRE). I’ve been told that this is not unusual during long hospital stays but it does mean that he’ll never be able to take the antibiotic ‘vancomycin’. The upside to this problem was that it meant he had to have a private room at BCCA, as he was now considered ‘contagious’ to those with suppressed immune systems. It also meant that we could now watch ‘Big Bang Theory’ at full volume and laugh as loud as we wished without bothering anyone. I had watched the movie ‘Patch Adams’ and appreciated his belief that laughter is the best medicine. Alex always felt better after a good belly laugh and the comedic genius of Jim Parsons helped him through the worst chemo cycles.
During Alex’s cancer treatment, it occurred to me that very few friends had visited him or even called to see how he was doing. At first I thought it was because they were all in their final year of studies and therefore too busy but I discovered that those of Chinese descent believed that Alex’s cancer was a bad omen. I had never heard such nonsense and was told by one young woman that this was widely believed by her grandparents’ generation but that many young Chinese still held this belief. I figured that I was too busy to re-educate these folks so Alex now has to re-establish these friendships with those he chooses.
In order to keep friends and family in the loop, I spent hours, usually while Alex slept, writing email updates. Of course, I was in daily touch with Ross by phone so he always knew what was happening. Emma, bless her heart, convinced her parents that she wanted to stay with Ross so that she could support him. Because she’d lived with our family since 2012, she felt at home with us and, since this experience, has a special place in our family.
When chemo was complete, we chose to remain in Vancouver for another eight months so that Alex would have a continuum of care, which ultimately involved an orchiectomy and two lung surgeries. I am assuming that most of the readers of this article are Americans. I should explain that the Canadian health care system is not as wonderful as we make it sound. Alex attends university in a province in which we do not live. Because he was too sick to return to Ontario, he received his cancer treatment in British Columbia. Even after chemo, it would not have been as easy as you’d think to return home to Ontario for an orchiectomy and lung surgery so we chose to stay in BC. Because we’d established a relationship with a fantastic oncologist, this paved the way to a top-notch urologist and the best thoracic surgeon in British Columbia. These are contacts that you cannot establish on your own. Socialized medicine dictates that patients are not permitted to choose their own specialist. You are assigned to whichever doctor your general practitioner can get to take your file. Alexander was so very fortunate to be sick in a city where some of Canada’s best specialists practice. I am most thankful to the unknown radiologist at VGH who knew that Alex needed Dr. Kollmannsberger. In Canada, we consider that we’ve won the lottery if we happen to be seen by a world-class specialist and, as I learned since returning home, Dr. K. is one of four world-class testicular cancer specialists working in Canada and the other three are located in Toronto so even if I had been able to return Alex to Ottawa for treatment, there was no guarantee that his outcome would have been the same.
By the end of chemo, Alex’s scans and x-rays showed that the tumors on his lungs had nicely shrunk and the spot on his brain had disappeared. This was something worth rejoicing and we did by going out to dinner at Alex’s favourite restaurant. It always seemed that every dance of joy was followed by warning shots across the bow. Dr. K. warned us that, if after the orchiectomy, the pathology report showed the presence of teratoma Alex would have to undergo lung surgery to determine if it had spread to the lungs. Alex faced the orchiectomy with trepidation because he’d never had a general anesthetic but the surgery went off without a hitch. Within a week Dr. K delivered the bad news. Teratoma was reported in the testicle. I now had to help Alex mentally and physically prepare for at least one lung surgery.
As we waited to see the thoracic surgeon that Dr. Kollmannsberger had told me was the right man for the job and because I had 100% confidence in Dr. K. we’d have waited to the end of time to see Dr. Yee, I made certain that we daily left the apartment even if it was just for a walk through the neighbourhood but, because we had no vehicle, we stayed in Vancouver and thoroughly enjoyed the city wherever local transit could take us. We were fortunate that it took only two months to see Dr. Yee. After receiving excellent scan, x-ray, and blood results from Dr. K., we were both knocked flat when Dr. Yee rushed into the consultation room and pronounced that he didn’t think that he’d be able to remove all of the tumors and as a result, Alex could expect to live only another two years. WOW!!! Dr. K. hadn’t prepared us for this grave news. Alex was given the option of not going through with the surgery and just enjoying his remaining years but he agreed to the first operation. The best that Dr. Yee’s assistant could do was to schedule the operation seven weeks hence. My first thought was: ‘How am I ever going to keep Alex busy for almost two months and his mind off his imminent death?’ We were both crying as we left the office but I was also beyond angry at Dr. K. for not preparing us for this news. We’d placed our faith in this man and he’d failed us. By the time we’d walked back to our bed-sit, the tears had been replaced by shock and we sat for an hour or more in silence staring at each other. Once I’d re-established contact with my faculties, I called Dr. K. to ask why he’d withheld such important information. Nancy, Dr. K’s assistant, reminded me that it was Clinic Day so Dr. K. was unavailable until dinner time but that she’d make certain that he returned my call. I decided that, because we’d agreed to attend a photowalk that evening, we’d still go just so that we’d be in the company of friends. I thought that Alex would not want to go out but he was still so shocked that he would have done anything I suggested.
While on the ferry to North Vancouver, my phone rang. It was Dr. Yee’s assistant telling me that he’d just had a cancellation and that Alex’s surgery could be moved up to the first week in September. I quickly conferred with Alex who agreed to the date change. Alex didn’t take many photos that evening, as I’m sure, his mind was spinning. I chose not to tell anyone our news until I’d heard from Dr. Kollmannsberger in the hope that there was a reasonable explanation for this news. Due to the noise at Lonsdale Quay, I missed Dr. K’s call but his message was a heartfelt apology for what had transpired earlier in the day. His explanation was that Dr. Yee had not been a member of Alex’s cancer team and therefore had, for some reason, not received Alex’s most recent lab results. It seems that Dr. Yee had determined Alex’s future based only on his original diagnosis and CT scan. His message included the fact that, when Nancy told him what had happened, he’d contacted Dr. Yee to discuss this enormous screw-up. He left his personal number so that I could call him that evening but, and perhaps I should have accepted his apology and returned his call so that he could go to bed with a clear conscience, I chose to spend the rest of the evening celebrating with Alex that he indeed had a cancer-free future to look forward to. I did return Dr. K’s call the following morning and smiled inwardly when he picked up on the first ring sounding relieved that I was calling. I cannot tell you how often I was grateful that Alex had the good fortune of being treated by an oncologist who regarded his patients as humans first and jobs second. I was willing to forgive Dr. K. this one hiccup in Alex’s treatment.
Just to add to my stress, the day before Alex’s surgery, my mother passed away. There is never a good time to lose your parent but honestly, she could not have picked a worst time to die. I decided not to share the news with Alex as he already had enough to deal with so, while he played a video game, I went downstairs, sat outside on the porch and cried. Our landlord must have heard me as he came out dreading that we’d received more bad news from Dr. Yee. When I told him what had happened, he went in to the house but returned quickly with two glasses of wine and we toasted my mum.
Alex’s surgery was scheduled to start at 7:30am so we had to be at VGH at 5am. Neither of us knew what to expect but Alex faced the unknown with such bravery that I could not have been prouder of him. We had not seen Dr. Yee since that day in the consulting room but the 10 minutes we spent with him in the OR prep room, made me appreciate that Alex had a very passionate surgeon about to attempt to take out 13 lesions and leave him with enough lung to lead a normal life. Dr. Yee reiterated the hope that none of the lesions would contain teratoma. After kissing Alex and telling him that I’d see him in Recovery, I spent the next seven hours sitting in the cafeteria, receiving condolence messages from friends and family who had heard about my mum’s passing.
After the surgery, Dr. Yee came to let me know how it had gone. He was noticeably excited. I could not imagine someone operating for seven hours being that animated. He explained that one of the tumors had begun growing into the heart muscle but that he had managed ‘to get the bugger out’. It’s nice to see that a challenge can still excite a seasoned surgeon. Perhaps it was because I did not appear to share in his enthusiasm that he quickly hid behind his professional face and told me that Alex was fine. I told him about my mum and, without thinking, he wrapped his arms around me. We sat for about 20 minutes while he asked about my mum and told me a bit about his parents. He apologized that he had to return to the OR but called his resident to take me to see Alex. I don’t think that this young man was too happy being used as an escort but, when your boss tells you to do something, you don’t question his orders. From this point through to the end of Alex’s lung surgeries, we had a very unique relationship with Dr. Yee.
Taking care of someone who has just had lung surgery is very different than taking care of someone going through chemo. During chemo, there was the expected vomiting, exhaustion, constant need to urinate, lack of appetite, boredom, fear, IV site pain, requirement to walk to reduce the formation of blood clots, and stress. BCCA also had enough staff to make certain that no patient was ignored. There was never enough staff at VGH to deal with patients’ needs. Without a family member or friend, patients’ buzzers often went unanswered. During his 16-day stay in hospital, I spent most of the time trying to make him comfortable. This meant changing the sheets on his bed a couple of times daily; giving him sponge baths; washing his hair; helping him to the washroom; trying to relieve his constipation that he developed as a side affect of the anesthetic; convincing him to walk around the 10th floor at least once every two hours; and watching over him while he napped. It was exhausting! By the time I’d leave his room at 9pm, I was ready for bed.
Ross arrived in late September to celebrate Alex’s 25th birthday. It was wonderful seeing him again after almost 10 months. Ross accompanied us to the appointment with Dr. Kollmannsberger where we were given the incredible news that there was no teratoma in any of the 13 wedges. Alex now had to make a decision regarding his second lung surgery. Dr. K. explained that because there was no teratoma in the first lung, he was now pronouncing the second lung also teratoma-free. This meant that Alex could decide not to go through with the second surgery. Alex emphatically stated that he wanted all of the lesions gone. Now that the cancer was gone, he wanted every lesion gone as well. He knew that the second lung would be more torturous than the first because it was the lung on the same side that had to be drained back in January. This meant that the tumors had been more numerous and therefore, Dr. Yee had a larger job to do.
Because it had been decreed that teratoma was not a possibility, Alex was no longer considered an emergency. The earliest Dr. Yee could operate was early December. We were concerned that we might not make it home for Christmas. In hindsight, I’m glad that Alex had those two months to rebuild his physical strength. I discovered a kinesiologist, who specialized in chemo rehab. She was wonderful! She worked with Alex to improve his lung capacity to the point that he could walk three blocks back to our bed-sit without pausing for a rest.
Alex’s second surgery was not as frightening as the first. No one looks forward to lung surgery but Alex is a very rational young man. He’d been through it once and, even though his relationship with Dr. Yee had gotten off to a rocky start, he now had utmost confidence in this man. He was also looking forward to going home when it was all over. He’d learned that Victoria was coming home for Christmas to see him. He had not seen his sister for almost two years so that was a special treat. Dr. Yee decided to take the entire lower lobe out because the blood left in the chest cavity had glued the lung to the chest wall. He decided that there were just too many lesions to take them out individually. Because we knew what to expect, Alex had taken it upon himself to discuss his post-op pain meds with the anesthesiologist prior to the operation. I was amazed watching my son use the proper medical terms when discussing the rules around epidurals with a man who would be responsible for keeping him alive as Dr. Yee poked around in his lung. Alex’s matter-of-fact discussion kept me calm as I realized that he wasn’t as worried as he’d been before his first lung surgery. Of course, this surgery also knocked the wind out of Alex but I do remember him waking out of the anesthetic with a smile on his face. This smile made my heart sing. During his stay at VGH, we were ready for any problem but none presented themselves. Alex knew how to breathe without making the drainage tube rub, he knew that walking would get him home sooner, the anesthesiologist visited him daily to make certain that his pain meds were adequate, and Dr. Yee visited him every couple of hours just to chat. Instead of 16 days in hospital, Alex was released in seven. In consultation with Dr. Yee, it was decided that we’d fly home to Ottawa on December 26th. By that time, it was determined that Alex’s lung could take the change in pressure without doing it damage.
2014 was a year of highs and lows, laughter and tears, exhilaration and discouragement, courage and fear. As the caregiver, I also experienced loneliness because Ross had to remain home due to his job, our pets, and our international student. Yes, we had two friends in Vancouver whom I remain forever in their debt for everything they did for Alex and me but I made many new friends each of whom played an important role in our experience. I am normally not one who asks for help but quickly realized that I needed to learn not only how to ask for help but to graciously accept all offered help even if it made life a bit more complicated than necessary. I discovered that people truly are generous with their time and talents during a crisis. During chemo, I learned that my major job was to listen to Dr. Kollmannsberger, take notes, and make certain that Alex was aware of everything that was said. I spent my days while Alex underwent chemo, attempting to keep his spirits up. While he was with me during his two-week breaks, I’d make certain that he kept as active as possible. This kept his mind off his uncertain future and improved his physical strength that took a beating during chemo weeks. Because we were 5,000kms and 3 time zones away from family and friends, while Alex napped, I’d create mass emails detailing recent events, Alex’s reactions, our activities, and I’d sometimes include my own fears. Before sending these emails, I’d proof read them and more often than not, delete my fears because often, seeing them in print or reading them out loud, made me realize that I could deal with whatever problem presented itself. Even though we now live in a world of instant information, I chose not to Google anything to do with testicular cancer. Ross and my brother-in-law did and some of the ‘answers’ they found scared the living daylights out of them. When I had questions, I called either Dr. K. directly or the BCCA’s patient hotline, which was available 24-7. No question was ever considered too trivial and I never turned in for the night with an unanswered question determined to ruin my sleep.
I do apologize for this blog going on for such a length. It is my hope that my experience may help others just starting on this journey. Caregivers and their needs are often ignored as the patient is considered to be the star of the show. If you find yourself in need of help, reach out and ask for it as your job is far too important to your loved one for you to not be there when they need you the most.
Victoria’s students made Alex 1,000 cranes in hopes of helping him beat cancer. It worked!!
I Would Never Want to Be Anywhere Else On Earth
Caretaking Through Testicular Cancer: A Mother’s Story
At 19, my son’s stomachache led to a CT on his abdomen, which led to his Stage IIIB testicular cancer diagnosis. Ian hoped his story would help others. I share these pieces of Ian’s story with the same hope.
Cancer Diagnosis / The Worst Phone Call Ever
The doctor called with the CT report. As he elaborated the details, I fell to my knees. I suddenly couldn’t breath. I felt as if the news had sucked the life out of me. As the doctor continued I clutched the arm of a chair and tried to stand but I had become too weak with shock. I could not believe what he was saying.
As I sobbed and gasped for breath, I crawled along the floor with the phone in one hand, interupting the doctor, “No! No! Not Ian! No! There’s a mistake! Not my son! No! No! It can’t be true!”
But it was true, and our lives changed in that very moment.
Cancer Treatment / Change in Personality
Ian had loved being in the center of the action. He made any event seem like a party with his funny antics and outgoing nature. Once Ian started cancer treatment he often was not in the mood for conversation. He usually didn’t want sound around him at all. He was miserable with nausea nearly every day for three months, which made it difficult for him to tolerate noise, light, and motion. He tried to cope by asking us to silence our cell phones, keep his room dark, and move about slowly and quietly in our house or his hospital room.
Cancer Care / Difficulty Sleeping
Ian felt grateful for doctors, nurses, and aides who worked quietly in his hospital room. He never slept well. He appreciated low voices and minimal noise from doors closing and general clatter because it all woke him from his light sleep. He told me that sound and light seemed more intense than normal.
Cancer Treatment / Paranoia
The pain medications caused Ian to feel paranoid, so he wanted me always near him. He sometimes woke startled from a light sleep, grasping my hand and looking at me as he tried to figure out where he was and if everything was okay.
Cancer Care / Cancer Treatment / Write it Down
I kept a treatment journal for Ian every day– details from conversations with every doctor and nurse, medical procedures and medications’ purpose and side effects. This helped us keep track of answered questions, review and track progress, and reference our notes and questions during appointments with Ian’s doctors. Ian tried to keep a journal but he only wrote two entries.
Cancer Care / Stay Prepared
We kept an extra pillow and blanket in the car for driving to his appointments, and a plastic bag in case he needed to throw up. I always carried items for Ian in my purse— bottled water, earplugs, his music and headphones, hard candy, dried fruit, chewing gum, and occasionally a package of Pop Tarts, one of the few foods he could eat without throwing up. We kept his duffle bag ready with clean clothes. There were several times we were instructed to take him to the Emergency Room where he would sometimes be admitted to the hospital. We never knew what would happen, so we tried to prepare for anything.
Cancer Caregiver / Be Organized
At home, Ian’s 12 medications were in his bedroom with doctor’s instructions next to them, and a thermometer, hand sanitizer, and doctor’s emergency numbers. I logged Ian’s temperature from 2-4 times each day and rated his symptoms and side effects as they did in the hospital. Persistent chest pain, headache, signs of internal bleeding, or slight fever meant a trip to the ER.
Cancer Care / Keep Comfort Items Nearby
Cotton swabs— irritation from brain radiation treatments made Ian’s ears itch.
Trash basket near the bed— Ian sometimes could not make it to the bathroom to throw up.
Dried fruit snacks, Lifesavers candy, chewing gum to help fend off nausea or bad taste in mouth.
Extra pillows and blankets for Ian. I also kept a pallet of blankets for me to sleep near Ian.
Favorite personal pillow and blanket for hospital stays. Ian said it felt better to have something from home with him.
Warm or cool washcloth to place over eyes or forehead— soothing for stress, anxiety, nausea, headache.
Quality Aloe Vera gel to soothe dry skin from radiation.
Ice pack to soothe headache and radiation burn.
Gentle peroxide mouth rinse for mouth sores caused by chemotherapy.
Soft toothbrush for sensitive gums.
Box of Tissues— Ian sometimes had nosebleeds caused by chemotherapy.
A pillow under each knee— to ease pressure on lower back. Ian’s lower back and hips were painful from the neupogen injections and the large tumor in his stomach that pressed on his back.
Heated blankets and an extra pillow during treatment at the cancer center helped Ian relax.
Loose-fitting clothes and house slippers for hospital stays.
Stretch arms and legs each day, using isometrics when possible. Sometimes Ian was too weak to get out of bed, so my husband, Mark would lift and stretch Ian’s arms and legs for him, and sit him up to stretch his back. Ian said it felt good.
What to Say to a Cancer Patient / Cancer Patients are People, Too
Ian appreciated the way his nurses spoke to him as a friend instead of a patient. If he had questions about his health or treatment, they answered him. But if he didn’t ask, they talked to him about his life, his interests, not his cancer. Ian appreciated that more than any of them may know. He also appreciated a nurse who was skilled with a needle —whether starting IV’s, accessing his port catheter, drawing blood, or giving injections. Ian’s doctors also took time to listen to Ian’s concerns and get to know him as a person. Good oncology doctors and nurses do make a difference in their patient’s lives, even if their patients don’t live to tell them.
It bothered Ian when friends and family questioned him about his cancer or what chemo and radiation felt like. Ian lamented, “There is no way they could ever understand this unless they have to go through it. There’s no way I can explain it to them. I wish they would stop asking me.”
Cancer Palliative Care
When Ian was admitted to the hospital for the last time, he was so very sick. He needed help moving around, walking to the bathroom, or turning over in his bed. He couldn’t eat. I held his mug to help him drink water. When he couldn’t have water, I placed a sponge swab in his hand, wrapped his fingers around it, helped him dip the swab into ice water, and guided his hand to his mouth to quench his thirst. I held the waste basket for him as he vomited or coughed up blood. I pulled the blanket over him when he was too weak to do it for himself.
In the days when testicular cancer was taking him from us, I washed his face, hands, legs and feet with a warm washcloth every day. I often swabbed his mouth with a cool damp sponge swab, and smoothed lip balm on his lips so his skin wouldn’t become dry and cracked. I held his hand, and I kissed the tears that leaked from his eyes as he lay too sedated to respond.
Cancer Caregiver / Be Quietly Present
Of all the ways we tried to help Ian fight his cancer battle, one thing made an impression on me more than anything else— how Ian valued my being quietly present with him when he felt his worst. Ian taught me that it isn’t necessary to say anything at all. The best thing to do is be present and listen, be patient, and be comfortable in the silence. It wasn’t normal for him to want his mom constantly by his side, but he thanked me almost every day for it.
Ian would say to me, “Mom, I don’t know how you do it, but thank you so much for being here with me. I could never get through this without you.”
And my reply was often the same, “I would never want to be anywhere else on earth, Ian. I love you more than everything.” I always will.
Karen A. McWhirt
Welcome Home Dad – Francis O’Connell
Frankie O’Connell Jr. passed away in April 2004 after a ten month battle with testicular cancer. With his passing he left behind 3 children, Jaclyn, Frankie III and Ryan. Nine years later, as a freshman in college, Frankie III, composed a charcoal drawing that really shows a glimpse into how testicular cancer and the loss of his dad has affected his life.
In Frankie III’s words:
Welcome Home Dad – Francis O’Connell
This piece was a charcoal drawing done for my Drawing II. The prompt was a transgender self portrait, but I pushed that to be more of a metaphorical sense. The hammer and beer bottle symbolize the things I never got to do with my dad for the first time, build or fix things, learn how to construct, and have my first beer with my dad. My dad passed of testicular cancer when I was nine and that what the misshapen and deformed genital area represents. So to fit the transgender guidelines, I feel that I missed out on learning these things that society says makes you a man. This piece is 6 feet tall by about 2 and a half feet.