#beacopp

According to my schedule, I had to start the 5th cycle last week. Because, of the suspicion of an ischemic event we had to delayed it. After some tests two doctors determined that I was able to continue.

Last week, I was worried and anxious. Not willing to continue. Trying to make my mind between following the medical protocol for my condition and to listen to my body. As I feel weaker each cycle, it is harder to endure and to distinguish known side effects and something else. Mimi, my wife, reminds me everytime to live "yon jou alafwa" (which mens "one day at a time", from a song in Haitian Creole).

Like every morning, Mimi and I have breakfast together, we read something positive out loud together, and we pray Jehovah God together. We usually ask God to give us strength to endure, to protect us with His wisdom and to give us peace of mind. Today, the 1st day of the 5th cycle, I felt really calm and with peace of mind. There were some minor issues during chemo, but we remained calm the entire process. Didn't felt stressed like other days, didn't felt anxious neither.

I thank Jehovah God first, because in these days He promise to "sustain" his loyals that are sick (Psalm 41:3). In the future, things will be very different (Isaiah 33:24). For now, I do everything I can to seek for medical help, and I try to collaborate in multiple ways. I love life.

I received and compared the blood count results from last saturday. Red blood cells, haemoglobin and hematocrit, as expected, are low and going down. However, for some reason white blood cells increased a bit. Also, my platelets are still increasing and surpassed the limit of 400-450. After some research, this seems to be a "reactive thrombocytosis" which means my body is producing more platelets due to a reason, which we still don't know. In the following spreadsheet you can see all my blood count from this year.

Green = increased compared to previous count. Yellow = decreases compared to previous count. White = no change.

According to the dosis regimen for BEACOPP the first day consist of 5 out of 7 cytotoxic drugs (as shown below highlighted in red).

As documented before, for my diagnosis the doctor took out the P (for Procarbazine) for my treatment. For the 1st day of the cycle I will be taking (EAC) as intravenous infusion (1 hour each) and P (for Prednisone) a 75mg tablet.

How was my day in the hospital?

We arrived at 8:00am, but the treatment started by 2:00pm. We finished by 5.30pm. The reason for the morning delay, is because all treatment cubicles were already in use (there are 12-14 cubicle at the hospital) and we were put in a queue. During the queue I told Mimi a bad joke, that was so bad that she had uncontrollable laugh (we both cried laughing; I don’t remember the joke sorry).

Post Mortem

At the hospital, I felt regular. I drove back home and was feeling uncomfortable. And when I arrived I felt a bit dizzy like floating, heart rate increased a bit and had a headache, it felt horrible inside, but nothing serious.

I didn’t had appetite, but I had half of a chicken soup. Then I took the P (Prednisone) at home by 8:00pm. Didn’t feel any change in my body. Later by 9:30pm had the other half for the soup, ate a slice of bread with peanut butter and lemon jam. Almost that I drank a lot of water so I could excret the toxicity of the drugs ASAP.

We went to bed by 10:00pm, woke up a 1:00am because my bladder told so, and had a good night sleep until 5:30am.

On Monday 22nd I had another appointment with my doctor appointment. She explained to us that the recommended treatment protocol will be adapted to my case.

The recommended protocol for me is BEACOPP which is usually administered in cycles of 21 days. There's a more intensive regimen with cycles of 14 days. In my case it will be cycles of 28 days.

Also, in any of theses cycles the days 1, 2, 3 and 8 the patient need to go to the hospital for IV drugs and from days 1-14 take oral drugs at home. All these aforementioned drugs are cytotoxic parts of the chemotherapy. In my case, I will only take oral drugs from days 1-4.

I'm not sure where to start with this post... 

The past week has been great because I started to feel like a normal 19 year old again and I got some good news from the hospital, but obviously that never lasts long when you're a cancer patient and today I started chemo again, so now I feel super shitty. 

I met with my new consultant last Thursday properly for the first time. She said something which shocked me and got me really excited, but I'm not prepared to share that until my chemo is finished and I get the all clear so watch this space! She also suggested I drop down to ABVD rather than stay on the BEACOPP for my last three cycles because it lowers my risk of losing my fertility as well as being less harsh on my body and stuff like that, which is great. The only problem is that my chemo will go on for longer because of how this one works compared to BEACOPP, but it's only a couple of weeks longer and less time will be spent at hospital so yay. 

And today I started my first lot of ABVD treatment. Obviously there were problems because there always is. Leighton was working at 1pm and my appointment was at 9, they told me I'd be there 3 hours maximum so he decided to take me. Obviously that didn't go to plan. Turns out the receptionist had either booked my appointment wrong or written it on my card wrong, but I was actually booked in for 11:30 and they still hadn't changed what chemo I was having on the system so it still said BEACOPP. THEN the pharmacy fucked up and my chemo didn't even arrive until around 1, and they managed to forget one of my drugs, so they got me all hooked up and then we waited for half an hour for the drugs to arrive. However in the mean time the lovely nurse brought through a PlayStation 3 and some games, which she thought were DVD's bless her. When it arrived they started with the 3 small drugs, 2 of which are injected through my line and another which is a 10 minute bag. Then I had an hour long bag which was done by 3pm and then we were able to leave by 3:30pm yay!

A stupidly long day but at least we had a little entertainment and work were ok with Leighton being with me, even though I did tell him multiple times to leave me there and go be a good employee, but he wouldn't! And next time we won't be waiting 4 hours before asking for the PS3 and fifa to play on!

Now I get to have two weeks off before more chemo yay. But feeling shitty for the next few days won't be fun.

Although I did get some more bad news today, kinda. Unfortunately being on this new chemo means that all my appointments have changed for the rest of my time having it, and it now falls the day before my first exam which totally sucks because I'll have chemo brain and be feeling sick and shitty, which I'm really worrying about. However as I was writing this I've just realised it should mean I have the week leading up to the exam feeling a little bit stronger. My last exam (I only have 2) is the Monday after, so I'll still have chemo brain for that but hopefully I'll be starting to feel better by then, however that totally rules out revision for the weekend before it :( I've really gotta speak to my school about this! :(

I have prom on Friday, so expect an update on Saturday with lots of piccys! So blessed I'm still able to go and enjoy it (just).

I'm already 2 cycles into my treatment but I want to talk about my consultation and first PET/CT scan before talking about treatment.

Firstly, despite living near Peterborough, I had to be transferred to Addenbrookes in Cambridge for my treatment due to my age. Only being 18 at the time meant Peterborough weren't able to treat me because they don't have a children's cancer unit there, and in medical terms apparently you're a child until you turn 19! So driving the 55 mile trip to Cambridge would soon become part of my life. 

About 10 days after being diagnosed I had an appointment at Addenbrookes to meet with consultant who'd be looking after me for my treatment. Finding our way to the Haematology/Oncology unit at Addenbrookes was not easy, but Leight's great with direction so we got there only 10 minutes late. I couldn't believe how busy it was when we got there and it was quite scary because I was the only patient under 40! After being in the waiting room for about 5 minutes the reality of my disease got to me and I broke down in Leighton's arms. But all was solved with a chocolate bar from my mum. I got called in to have a blood test, something I did not enjoy because of my hatred of needles, and get weighed. After around an hour of waiting and being bored I finally got to meet my consultant. He talked me through everything that was going to happen over the next few weeks and had a little feel of my lumps and bumps. We also got to meet one of his two specialist nurses who gave me tonnes of booklets and paper which I still haven't bothered reading ha. They booked me in for a PET/CT scan the next day and then I was off home!

The next day just my mum and I were back on our way to Cambridge for my scan. I was starving the whole way there because I couldn't eat 6 hours prior to my scan and for someone who loves to eat, I was not happy! When I got there they did your bog standard questionnaire on being pregnant and previous operations, very exciting. Then I got the joy of finding out I'd be sat in a chair for an hour and a half alone, with nothing to do, why?! because they had to inject me with a nuclear reactive glucose and it'd take that long to get round my body. So after an hour and a half of chilling with out of date magazines I spent 30 minutes in a long tunnel machine as it scanned my body. Then as soon as it was done I could go home and eat. (Obviously I ate before leaving)

Then I was back in Cambridge 4 days later for the results (3 trips to Cambridge made a total of 330 miles in a week!). Back to see my consultant meant having another blood test and being weighed again, and to this day I still don't know why they needed my blood or weight because they had no reason to look at it! But still I had them done and did lots of waiting around again. I was really nervous about this consultation because it meant finding out what stage I was at and then talking about my treatment. But at the same time I was really excited because the one thing people kept asking me was 'what stage are you at?' and I had no idea, so I'd finally be able to tell them.  After about an hour of waiting we finally got seen. I found out I was at stage 2 but it was very 'bulky'. This 'bulkiness' meant there were 3 treatment options for me, and I had to choose!!! After going through each treatment plan I decided to go for the Escalated BEACOPP. It's much stronger and more hardcore than the other option, AVBD, but it means that I won't have to go through radiotherapy. The only downside is that there is a 20% chance it will leave me infertile (sad face) but I had to choose my health over fertility. There is also only a 0.9% chance that this chemotherapy will kill me, whereas it's a little higher for the AVBD, not sure on those figures though! I then found out that this type of treatment would cause total hair loss, and yes this made me ball my eyes out. I've mucked about with my hair so much and had finally got it looking decent, so this was the last thing I needed. Once again Leighton's shoulder was there for me to cry on while the nurse tried to find the positives in losing my hair. So yeah, after agreeing on what I was going to do they decided when I'd start, 8 days later. 

And then I was free to go again, knowing that I'd be starting chemotherapy in 8 days!