Derk-Jan.com

Today’s Hospital Visit #12

A year at last (official)

Over three months ago I posted that I had been in remission for about a year. Today I am happy to announce, share and celebrate that my assumption was correct. I passed every test in my latests checkup.

Follow up is the first week of October. Until then I wish all of you who are still fighting all the best care and health.

A year at last

With Christmas awaiting, I wondered today: what was I doing a year ago. It wasn’t very conscious or active thinking, but every now and then I noticed my mind slipping away to places from before. Finally having some time for myself enables me to write these thoughts down.

I reckon that some day in December I had my PET-scan, not knowing that day was today. It was the 8th of December when I went for my final scan. The results would either bind me to another segment of treatment, starting with chemo after New Year’s Eve, or it would set me free until April, when later the first follow up would have been planned. The consequences of more treatment would have been rather nasty, since the more treating is done, the more body parts will never return to their proper state. While being afraid of the former results and logically wishing for the latter I went to the hospital exactly one year ago.

Now, the day was a disaster, some of it described in my 9th visit to the hospital (opens in a new window), but it was all worth it, because tomorrow I was going to hear the words that relieved me from the hospitalized life I was living. From the stress, anger and pain any of us undergoes when in treatment of the disease some much spoken off, so little with ease and comfort. I’d became a survivor instead of a patient - even though the type is chronic and can never be cured - which would give me hope and energy for the years to come.

And there I was. Being able to wear that green ribbon - for all lymphoma supporters, patients, friends and family - not only with pride, but also with compassion. With hope for other and understanding for all. During my treatment I conversed with Abby every now and then. There was a third girl - also of our age, who lived in Belgium, and sadly passed away the week I started treatment. Although I can not imagine how her parents must have felt - it hit us hard. She was one of the dearest people I never met, even inquiring how we, Abby and I, were doing, while she was dying after her Bone marrow transplantation. 

My condolences go to everyone she left behind. As to all others that were left by their loved ones. For her I will try my best to help any to overcome or cope with the dreadful disease.

New beginnings
With hope and energy comes change in life. Some people ask me if my life changed and here I am to say that it actually has - radically. Even though I was always energetic and positive, I stopped saying no to things I know I would enjoy and started saying yes to everything I aspired. With a financial situation at home, I chose to be left alone on this matter, so my sisters could study as I was able to and school moved to the fourth place of priorities, which now yielded as Family, Work, Fun, School. Life is just to short and I’ll elaborate on that in a few.

In January I started studying again - at least tried too as I was greatly being held back by my study-adviser. You see, I got reassigned to another adviser who didn’t know square about what was going on. But not being able to study at my fullest allowed me to do some other stuff instead. In fact, I now had loads of time left.

I started doing voluntary work for the LGBT youth community where I took on a marketing and communications function. The team was wonderful and gave me more spirit to take on bigger projects. I also got back into doing some voluntary work for Local Heroes Delft, a local media platform that seeks inspirational people and gives them a spotlight. A place to show their craft, their work and their creativity. This is especially helpful for those less fortunate, who would normally never be able to show their skill-set.

My boss gave me a generous raise and I started doing different kind of projects at work as well, enabling me to buy my own place in a few months. Next to that I started on art/dance/theater projects for events/parties/nightclubs. It’s seriously one of the most fun things to do.

When it comes to personality, I would like to elaborate on what I said earlier. People kept telling me - before […] - that I needed to think about my future. That it is important to work hard now to relax later. To not throw precious time and resources away. While I still believe this to be moderately true, I would like to say the following. While working for the future is important, You don’t want people to say: “(S)He would had a great life ahead.”. No, instead I loved it when they would say: “What a great life (s)he had.”. And this is my new mindset. My new guideline for living. You don’t want to waste time now to perhaps have it good later. You should enjoy life now to be able to enjoy time later.

The other thing that changed is that I don’t put energy in compromising feelings because I can’t stand someone. I used to try to be nice to everyone a long my path of life, but this is simply not possible and definitely not worth the energy and time. It’s not worth the inner pain yielded by the suppression of feelings near hatred, annoyance and disgust. When I can’t stand someone, I found myself feeling better just telling these individuals just that and be okay with it. They find it more comforting also, because pretending is almost never the solution.

For all those left
Many are still in treatment and with diagnosis getting better and better, many more will be in hospitals the coming years. Yes, you can overcome the pain. The feeling you are not going to make it. Yes, you can survive, even if it’s just for a few years before it comes back and you are starting all over. Appreciate the live you have now, because when you will leave - and eventually everyone will - you want people to praise the way you lived and not the way you might do in the future.

Support those that need it, even just by saying that you don’t know what to do. Be a little naive and trust a little bit more, but most of all, be humane and care regardless. You will find yourself in a happy place, as I have found mine.

That is all I can say for now, except for this last remark:

I will be living the next nine years or so to the fullest and beating the cancer again afterwards. Oh and when I officially are one year clean this April, I will celebrate and I hope you join me.

With love,

Derk-Jan

Today’s Hospital Visit #11

Bloodworks still perfect and now official 9 months of complete remission. CT scans showed that scar tissue is still degrading.

I am a happy person now.

Upcoming me

3th of October - Results of my second checkup.

Upcoming me

This April I have to get my bloodworks checked again for cancercells and so forth. Not a big deal, since there is barely any chance that they’ll find anything at all. However, I did do some research again on my NLPHL and the following came up:

LPDH has a slow clinical course. Late relapses are common, but they usually do not affect survival; survival is favorable even among patients with recurrent disease. Patients with this diagnosis are more likely than other HD patients to develop non-Hodgkin’s lymphomas (NHLs), typically large cell lymphoma of B-cell type.

Numbers confirm what they are saying in the paragraph above and mimic what I already said before, that dying of NLPHL is unlikely. However, they didn’t mention my higher risk of getting another type of NHL.

Bah.

I’m still here, so I am going to enjoy it!

The best gift

Cancer-free Christmas, no better gift. And mastercard can’t buy you one.

Today’s Hospital Visit #9

Heya!

Back from a fabulous time in London! This morning I was present at the hospital at 10:00 as it was scheduled that I was getting a PET-scan. Well off course it was half an hour until an intern called me to join her to the radiation-preparation chambers. A little bit frustrated by the delay I lay myself into bed and a ‘real’ nurse entered the room to hook me up to an IV line.

This woman succeeded in bursting two of my veins - hurts a lot - after which a doctor did her job and hooked me up just fine. As I didn’t drink water, I took another 15 minutes before I had taken enough fluids into my body and the FDG, a radioactive isotope, was connected to the IV line.

The scan itself was a bitch, since the IV was in my arm, which was laying, bended, for 40 minutes. It was only when I lost complete sense of my left arm, the scan was finished and I was released from the scanningroom. I had to wait for another 20 minutes to get cleared by a doctor.

With pain and frustration I left the hospital, quickly regaining my senses and my force, to mentally prepare for this Thursday.

With love,

DJ

Radiation Result

Dear everyone,

The CT-scan shows a significant decrease of lymphomatissue in my armpit. The lymphs shrunk from 5 centimetres to 2 centimetres, which is both a satisfying and positive result. However, for the doctors to call it a complete remission, it should have been 1-1.5 centimetres.

The enlarged lymph may contains either (more likely) garbage-structural-tissue like veins and bindings that fed and held the tumours together, or there are still cancer cells present.

To determine the latter, a PET/CT scan is planned the 7th of December, so the activity in my armpit can be mapped. When there is none to very little, the cancer is gone (for now) and I am truly a survivor. If there are still cancer cells left being active, Chemotherapy is probable.

So, somewhat positive, let’s just hope for the best!

Scroll down to see the story accompanying the two video’s below.