Is there an elephant in this room?

I have never had cancer before, but I have found that people in general react in really strange ways when you tell them. This is a sensitive topic, but so many times I have felt like there is a huge elephant in the room and no-one is talking about it.

Partly I understand that people want to respect your privacy and don’t want to raise the subject to make you feel uncomfortable. I am also not sure if it is a cultural thing, but many times it would be nice if people ask me how I am? By saying this, I don’t want to be the centre of attention, but I recall when a friend of mine who was not that close to me was diagnosed with cancer. I recall asking him how he was, wishing him strength in his battle and mentioning that if he needed anything that he could count on me. People haven’t asked me that…I don’t know why. It’s usually me that raises the issue and mentions that there is an elephant in the room. A bit of conversation later and everything feels lighter and the elephant has left.

On a professional level, when I have mentioned it, I have got some mixed reactions. Silence is common, followed by the subject being hushed and the topic of conversation changing very quickly, only making me feel like I should have not even mentioned it. I don’t feel that people are un-polite, but maybe they are caught off guard, are shocked and not know how to react. I have chosen not to talk about it, because in part I feel that people don’t understand it and seem to misinterpret it. I don’t know if they see weakness in me when I mention it, or if they think that an ill architect is not in the best interest of their project.

If you have or had cancer, did you feel this as well? This kind of strange silence around you? I find it very uncomfortable.

Tomorrow is the big day

Its Thursday night and I am at home with my son who will be four months old in a couple of days. My wife went to the theatre with a friend and was feeling guilty for having accepted the invitation, but al the more reason to not let things like this get in the way of our day to day.

My appointment has been rescheduled twice now because the pathology results were not yet ready from the lab. Since this appointment has not been cancelled, I am hoping that tomorrow with be the day that I know. In part I have not invested too much thought into the results, probably because I really feel strongly that this was solved with surgery. I am aware that that may also not be the case, but if it comes to that, I am sure I will find a way to deal with it…although I would really prefer not to. The other part is that I have had the tremendous support of my wife and priceless smiles from my son that just make me forget everything!

On the other hand, being an architect and not someone in the medical field may help. Cancer is something you need to understand, especially in ways that it relates to you, but I confess that I still feel like I am in a bad dream and that I am going to wake up and find out that nothing like this actually really happened. It is still difficult for me to understand that this has actually happened to me. I have always downplayed it and convinced myself that this is a more simple cancer and that I was lucky with the one that was given to me. In part that is true, I am aware that there are very aggressive cancers out there but I have also recently become aware that this can potentially be quite nasty.

Since losing my big toe, I have been searching for information of people that have been in a similar situation. To be honest, I haven’t found much. Most toe amputations are related to diabetes and I found a few cases of mountain climbers who lost toes to frost bite. Only recently I found some posts of other people who had this tumour and the topic was not about the lost toe, but rather the treatment to deal with the cancer having metastases in other parts of the body like the vertebrae in one case and in the brain in another case. The sense of despair and urgency in the conversations caught me off guard. People younger than me, with children… It still doesn’t make sense to me. I could see this tumour! I still can’t imagine that the black stripe on my toe nail could be so lethal. I have mentioned this before, but I still can’t get my head around it.

I have been watching a TV series and there was a prisoner who had cancer and was told by the doctor that she had a few months to live. I know it will not be my case, but I felt a chill go down my spine, imagining that soon it will be me, in real life hearing the news from the surgeon.

I am sure I will be ok. So wish me luck. My friends and family have been awesome, praying for me from different creeds and giving me strength. Even tomorrow, an architect and friend that works with me cancelled her dental appointment to babysit our little one while we go to the hospital.

So lucky to be surrounded by so much love!

24 days after surgery

I am back at the hospital today to change my drain that’s been leaking the last couple of days. I didn’t think much about recovery after surgery and in part it’s been quick, but quite slow in other aspects. Four days ago I got the last stitches taken out of my toe, but the part around the sentinel lymph nodes near my groin has been a slow process. I had stitches there, but last week they were removed due to the beginning of an infection. I was put on a course of antibiotics and the wound was opened and a drain was attached. Until then, the liquid was trapped underneath the skin and caused a large bulge from the accumulation. That liquid was removed at the hospital and I would need to do it every couple of days. It meant spending as many hours as possible with my legs raised up to help my body absorb these fluids naturally.

Since the drain was attached and I started antibiotics, the liquid is captured in a bag and it seems to be speeding the healing process. It’s also allowed me to work more which is a topic for another post about working under these conditions when I should be resting – but that’s what you get when you work for yourself. When I thought about people that have bags glued to their body for strange fluids, it always made me feel quite squeamish and now I have one myself! It’s actually no that bad. It’s a bag attached to an adhesive that is glued over your wound and has a little plug for you to empty it out. When they attach it, they put a metallic mesh in the wound which is made of silver nitrate or something, that prevents infection and helps the liquid flow out.

Looking forward to not having a bag on my leg and to start recovering and learning to walk again. I thought losing the toe was no big deal, but it is. I get really tired from walking and my feet and legs hurt probably because I am compensating incorrectly. I have tried to read up about people in my condition that have lost a toe and what their recovery was like, but didn’t find anything. I have read that losing a toe does not impede you from walking, but it doesn’t say if you will walk again without limping. The thought of running seems like an impossibility at the moment. It feels like the remaining toes are just too fragile to take the weight and feel like they will snap if I bend them. I guess it is all a question of time, but I will be very happy if I get to run again!

Band aid day

Back at the hospital to check on the bandages. I come here every 3 to 4 days. My toe is healing well but is super sensitive while the stitching around the lymph nodes is taking longer to heal because it keeps swelling. It has a tendency to accumulate liquid which forms a large bubble under the skin that ruptures occasionally. Not painful but just uncomfortable.

Needless to say, that the progress is inspiring! Our body fights so much to get well it’s incredible! I limped out of here on crutches and today I walked in unaided! Still limping slightly, but what a difference and better is how happy you get just to be able to walk again!

I should have gone on that last run before the surgery! It will be a while before I can do that again. That’s the thing about this…I was always making excuses for myself why I wouldn’t run on a particular day. Today I look back and think….how silly….you can run! I never thought that that simple truth can be taken away. Life is about rejoicing and being thankful that you have legs, lungs and a heart that function to run! Next time I run, I will remember just how something so simple is such a massive privilege And how fortunate I am to just…run!

Between diagnosis and my first appointment

I don’t remember when exactly, but a thin grey well defined stripe appeared under my big toe on my right foot. It was perfectly parallel and ran the length of my toe nail. It was about 4mm wide and I didn’t make much of it. It looked like I had taken a wide marker pen, and ran a stripe along the length of my nail.

When I noticed it, I thought that something must have dropped on my toe, or I must have kicked something without noticing it and got the dark stripe which I associtated to a bruised toe nail. I think everyone has at one stage banged the car door on a finger or accidentally hit it with a hammer. You usually get a bruised nail and over time as the nail grows, it gets pushed up and goes away. That is what I thought I had, so I made nothing of it and let time pass by, thinking it would go away sooner or later. I do recall, that the perfect stripe also made me think that it might not be a regular bruising, for being so well defined, but once again made nothing of it. I didn’t photograph it at the time, but I found a picture on the internet that looked very similar to what I had when I first noticed it. It’s the perfect stripe, mine was slightly wider and more towards the right side of my toe.

Some time did go by and it didn’t go away. I thought it was strange but ignored it and also didn’t think that it warranted a visit to the doctor. It didn’t hurt, looked slightly different but no reason to get it checked out as it seemed to be purely cosmetic. That is the problem with Acral Lentiginous Melanoma. It is a very rare form of Melanoma and more aggressive and with porter prognosis than common skin melanomas. It isn’t caused by sun exposure and usually appears on soles of feet and on skin that is hairless and also appears under your nails. It’s dangerous because it goes undetected for long periods of time, many times being misdiagnosed and when you do get to do something about it, it may be too late. Late in the sense that this is a malign tumour, a sheep in wolves clothes, looks harmless, but then spreads to other parts of your body through your lymphatic system.

It’s dangerous, because there is a risk that you look for help once it has already metastasised to other parts of your body and be more complex to treat. Apparently this tumor has a tendency to Metastasise on organs like liver, lungs and brain. How crazy is that? You would never think it would have started on a grey stripe marked on your toe nail! The irony and fragility of life…how can something apparently so innocuous be something that could actually cut your life short?

Anyway, one day while getting out the shower, I pressed on my toenail and a bit of blood seeped out below. I still thought it was a bruised toe nail, so it wasn’t until the summer of 2017 that my wife who had been insisting with me before, insisted even more that I see a dermatologist about it. By now the mark under my toenail was starting to look darker and the toe nail had begun to soften around it. That seemed to convince me that maybe it was just a fungus I had caught somewhere*. I kept forgetting to call the dermatologist and did it more because my wife insisted. When I did finally remember to call him, he only had an appointment in late November which for me was ok, since I wasn’t dealing with anything that was urgent. It’s a good thing I did call and that I listened to my wife…like a very dear friend of mine says “married men live longer” and I hope to be a testimony to that phrase!

When the appointment finally came around which was Wednesday the 29th of November 2017, the doctor suggested I come back on the following Monday for a biopsy. Since a biopsy sounded serious, I asked him what that meant and he told me that there was no reason for alarm. I was told it would be important to understand what type of cells were under my nail so that the doctor could know what we were dealing with. I came out thinking it was a type of birthmark that had started growing under my toe nail and that there was no reason for alarm.

The next week, on that Monday 4th of December, I went in for the biopsy. Feet and toes have a lot of nerve endings and are pretty sensitive so it wasn’t a pleasant experience at all. The samples were sent to the lab and we waited for a few days. The dermatologist mentioned in his request to Pathology what his suspicion was, but I shrugged it off, thinking that it was just protocol, didn’t apply to me and frankly didn’t lose any sleep over it.

On the 13th of December 2017 I got the results from pathology. I received the email confirming Acral Lentiginous Melanoma. I showed it to my wife and when she read it, she burst into tears. Probably because being a Doctor herself, she understood what that meant while me on the contrary had no idea what I was dealing with. The following days went by pretty quickly between getting referred to between Doctors and ending up at the Portuguese Institute of Oncology in Lisbon. If it wasn’t for my wife insisting that I get this checked out by a proper specialist in this area, I would never have gone to the doctor for this. I would still be here, oblivious to what was going on in my toe, while the tumour would keep growing and likely spread to vital organs that are key for survival. How screwed up is that? I know I am going to beat this and get well.

From here, things started moving quickly, but literally felt like an eternity. The first two or three days you are still in denial and caught by surprise while taking in everything. It slowly starts sinking in that you are dealing with something serious. You start searching for photos to understand just how long you have had this for, since it is a determining factor foro a good prognosis. When you look at the photos, there aren’t many summer pics with flip flops and at an angle that you can see your toe nails. We worked out that I have probably had this for about about a year and half as we don’t recall having noticed it on our honeymoon. As the days go by, so does your anxiety level, you start looking for answers to the gizillion questions running through your mind. That first appointment took forever to happen and it was just a week away!

I have been blessed with health. I am a 45 year old male and between having had my appendix taken out, I have never had any health problems. I am an architect and run a successful practise in Lisbon and my only ailment until now was working too much. I live in the city of Lisbon in Portugal and consider myself fortunate to live in a country with free healthcare. I was referred to the IPO (Portugueses Institute of Oncology), a hospital that deals exclusively with cancer and where my first appointment took place.

My wife is a doctor, currently specialising in Pulmonology and during her training she spent a few months at the IPO in the lung cancer division. On a few occasions I picked her up from there at the end of her day or to take her out for lunch. While I sat in the car and waited for her, I saw patients going in and coming out of the hospital. I thought of them and imagined how challenging it must be to be diagnosed with cancer.

I never imagined that I could get cancer….it was something that happens to everyone else. It is still difficult for me to say it today that I have it. I push it to the back of my mind like it doesn’t exist or it doesn’t apply to me. But it does. Unfortunately it does. It changes your perspective of things. I sat in my car at the gates of the cancer hospital and as much as I could have tried, I truly couldn’t relish that moment that you appreciate that you are healthy and fortunate you are. You do, you inadvertently think how lucky you are to be healthy, but it is only when that is threatened to be taken away from you, that you understand just what a big deal it is.

Little did I know, that one day it would be me, walking in through those same gates to get treated for cancer.

Notes:

* it wasn’t a fungus but in actual fact, it was the tumour increasing in thickness below the toe nail. That thickness is key in detecting the state of the tumour, where the thicker it is, the worse the prognosis is. I will know what thickness my tumour was on the 30th of January and understand how far it developed.

The reason for this blog

It’s been a week since I last posted something here. Having difficulty to move around and having a 3 month baby leaves little time during the day to write. I would like to write more and maybe just need to prioritize to make time for it.

The reason I am writing this blog is actually for two reasons. The first reason is that I searched for people who had my condition and didn’t find anything specific in regard to this type of cancer. I had a lot of questions and didn’t find any answers. Not medical stuff, but more the kind of experiences people were feeling while going through this process. You have so many questions and sometimes the waiting for answers can be quite daunting. So for that reason, I thought maybe if I share this, that maybe someone out there that is going through something similar to me, might find this useful. Every day there is something new, so I will try and post as much as I can still remember while it is still fresh.

The second reason I am writing this, is my own personal journey of what all of this is teaching me. I have to come out of this a better person, a stronger person. I need to take some time out, put on the brakes from all the stuff around me, collect myself and think about all of this that has been happening and  process it. If I treat this as a another episode we need to deal with in life, then it will be a lost golden opportunity.

Writing helps me organise my thoughts and hopefully learn from it. I am looking at all of this from a positive perspective, but that doesn’t make it and less scary. I am convinced that there is something good about this…and don’t get me wrong, I am not selling the “you need to be positive” narrative when in actual fact reality is different. Having cancer is scary. But having cancer is also something that puts life in a completely different perspective. It has already shown me things, that otherwise I would never have seen and right in front of my own eyes. It makes you understand that what we take for granted is limited, that life is in fact fragile. It makes you feel like you have been on a winning streak until now, and someone’s dealt you with a bad hand. You muster strength to deal with it, but you also understand that there might just be another bad hand around the corner. Life is unpredictable. I have been living in a bubble. I have seen things I never imagined I would see. The future is scary. Living is scary. But right now, everything is perfect. It could be so much worse. Rejoice and enjoy it and let it sink deep down in your memory chip. I have never been so greatfull in my life and never felt so loved.

Right now, I have more questions than answers, maybe those answers will come with time, but for now they are just questions. Cancer has changed something in me. It was similar to when my baby was born 3 months ago, where you just know, that from that moment on that your life is going to change forever

Picture of my son with me in the waiting room before I got my bandages changed

Surgery was a success!

I was treated by a fantastic team of professionals. Friendly and always smiling and they all took great care of me.

I am so fortunate to live in a country that values a national health system with modern equipment and excellent doctors. I won’t be billed a cent for any of the treatment I have received. I think about the many people in the world that may be in a similar situation with no access to healthcare.

I am also so lucky to have the support of a loving wife who as been with me through this all the way. I had her scarf with me during the night. She has supported me and dried my tears in moments of fear.

You are the color of my life Krispeta!