Remembering

I had day 8 of this first round of BEACOPP yesterday (Wednesday 27th) and all seems to be going good. No nausea just really tired. Yesterday I didn't have any of the drugs that i had on day 1 though! I am currently waiting for a nurse to come around and give me my Neulesta needle in my tummy to help boost my white blood cell count. The lump in my neck has gone down a fair bit, I don't want to get my hopes up too much as with the ABVD chemotherapy it would do the same thing and then a few days later get bigger. Lets hope it doesn't!

.............

Today I was remembering the day the doctor told me they thought I had lymphoma. This is what i remember... He explained to me all about it and then asked if I had any questions.. The only 2 questions I had were.. "Am I going to die?" And "Will I loose my hair?". Nothing else apart from these 2 things mattered to me at that time. He said I would die if I didn't have treatment and that yes I would loose my hair. He asked if i had anymore questions.. I shook my head no. I got up and walked out of the room with my head down. I just wanted to get out of there.. To be told that you have cancer at 25, is the last thing you expect.

It's crazy to think back to that day, it seems like a life time ago, yet has also gone so quickly. Friday 5th March will be the 5 month anniversary of when i got told I had lymphoma. I know that day, a few still held hope that the doctor was wrong, but I had lost all hope, deep down I knew they were right.

BEACOPP, I hate you!

Wednesday 3rd February was my first day of the new BEACOPP regimen. I arrived at 3:30pm for my appointment. I sat down and a nurse talked me through the new treatment, the drugs and what side effects i could face. She gave me a bag of medication that i had to take daily and made me take a anti-nausea tablet before she started the chemo. They also gave me a list of food that i am not allowed to eat while on this chemo. Anything with tyramine i cant have, so vegemite, any cheese, aged foods and sausages like salami, pepperoni etc.

I had my chemo and all was ok. I got home took the rest of my tablets that i need to take that night. I was on the phone to mum and telling her that i can't take the tablets (i have always had a problem taking tablets). I finally got them down with the help of some banana! I said to mum that i was going to be sick and she said i wasn't and that it was "mind over matter". It got to 11:30pm and thats when it started, I have never been so sick in my life :( It lasted until about 1am. I then had to take another tablet, so i took that, then vomited about 30 mins later. I managed to get some sleep and vomited 2 more times during the night. 

I woke up Tuesday morning and still felt quite nauseous. I had to be at the hospital at 11:30am for day 2 of chemo. It was a struggle to get there and i felt like i was going to be sick the whole way. When i got up to the oncology day centre, i took my seat and the nurse that was looking after me that day asked me if i wanted to go into the side room so i could sit by myself as she could see i wasn't feeling well. I said yes. When i got into the room she asked me what had happened the night before. Before giving me the chemo she gave me some IV Maxolon and then some other anti-nausea at the end. I didn't vomit again. Friday mum came down and took me to my appointment for day 3 at 3:30pm. They didn't give me any extra anti-nausea this time, but i was ok. My doctor came up to see me while i was there and asked how things where going on and how i was coping with taking the tablets as he knows this is a struggle for me. This was the first time mum got to meet him.

I can't believe how many tablets i have to take! It's ridiculous! This is my schedule:

DAY 1 - DAY 7:

AM - 8 tablets

ARVO - 1 tablet

PM - 3 tablets

DAY 8 - DAY 14:

AM - 4 tablets

ARVO - 1 tablet

PM - 3 tablets

DAY 14 - DAY 21:

AM - 3 tablets

ARVO - NONE

PM - 2 tablets

Then i start all over again! 

Today is Monday 25th February and I have been feeling ok. I am always hungry and tired, but the steroids make it hard for me to sleep. I have also found it hard to give up cheese! I never realised how much i eat, and how much yummy food has cheese in it or on it! Cheese i will miss you over the 6 months :(. I go back in for day 8 of chemo on Wednesday 27th. Hopefully this one treats me well. I can say that i am not looking forward to having day 1 again in 2 weeks time!!

The time had come..

So last night I FINALLY got the courage up to shave what little hair I had left! It wasn't as hard as I thought and I'm proud to say there were NO tears!! I did most of it myself and then got my fiancé to tidy it up and do the bits I couldn't see! As you can see from the photo there really wasn't much left! I had such thick long hair and this was all that remained! Such a sad but brave day!! :D

Starting all over again...

Monday 15th February I met with my oncologist to get the results of the biopsy I had last Tuesday. He had only just got the results back that morning. The way he started out talking i thought he was going to tell me that it was actually Grey Zone Lymphoma i had, or something completely different, but he actually said that what they saw when looking at the lymph node was inline with what they saw with the first biopsy, so was indeed Hodgkin's Lymphoma. 

He talked to Sam and I about what Chemotherapy regimen i would need to go on. Talked about each drug and side effects it could cause. The new chemo i am starting is called escalated BEACOPP. It is given over a 21 day cycle, so day 1, day 2, day 3 etc. This is how it runs:

Drug		Dose-Escalated BEACOPP	Method	Cycle Day
(B)leomycin		10 mg/m²	i.v. push	day 8
(E)toposide		200 mg/m²	i.v. infusion	day 1-3
(A)driamycin (doxorubicin)		35 mg/m²	i.v. push	day 1
(C)yclophosphamide		1250 mg/m²	i.v. infusion	day 1
(O)ncovin=Vincristine		1.4 mg/m² (max 2 mg)	i.v. infusion	day 8
(P)rocarbazine		100 mg/m²	orally	day 1-7
(P)rednisone		40 mg/m²	orally	day 1-14

So i will have chemo on day 1, day 2, day 3 and day 8, with 2 tablets taken for 8 days and 1 for 14 days. Then i have a break from day 14 - day 21 and start all over again. I will be going into hospital 3 day in a row for chemo :(. I SUCK at taking tablets and cant do it, normally have to crush them up or cut them, i'm not allowed to with either one so this could be interesting!!  
One of the drugs in BEACOPP can cause a secondary cancer which is normally Leukaemia, he said it happens in roughly 1 in 100 patients.
I start round 1 on Wednesday 20th February! I am worried how i am going to cope with this chemotherapy drugs, time will tell i guess!
A couple of the drugs can cause bladder issues and stomach ulcers, so i will be given 2 other medications to prevent this from happening.

It is kind of a kick in the guts because I feel like the last 3 months of chemo were a waste and feel like I'm starting all over again! My oncologist said that if this chemo works fantastically I won't need any radiation at the end!! Fingers crossed! I am so ready for my life to go back to normal!

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.

Yesterday, Tuesday 12th February i had my second biopsy. Mum and I arrived at the hospital at 11am. We waited around an hour and then we got called into a room and i had my ob's checked by a nurse. She checked my blood pressure, heart rate and temperature. She also checked my details where correct and asked when i had last eaten or drank. The nurse then took Mum and I to another waiting room and told me to put on my hospital gown and take a seat. While we sat there, the surgeon and anaesthetist came to see me to check details. The surgeon came back and took me into another area so she could look at my neck and mark where she wanted to cut. She couldn't decide between two of the nodes, so marked both and said they would make the final decision when i was asleep. I asked her how long i would be in surgery for and she said only 20 minutes. I then went back and sat with mum. We waited there until 3pm when they told me it was my turn to go in. I walked into the theatre room and there was about 7 doctors/nurses/anaesthetists in there. One of them said to me "Don't look so worried". I got up onto the theatre bed and they connected the saline drip to my PICC line. I was starting to panic at this stage so one of the nurses asked me if i wanted her to hold my hand. I shook my head yes. They put the oxygen mask on me and put an antibiotic through my PICC line. They anaesthetist told me to take deep breaths to fill my lungs with oxygen before i go to sleep. I remember taking some deep breaths and that was it.

I woke up in the recovery ward at 4:20pm. The nurse asked if i was okay and i shook me head yes. I was a bit groggy for the first few minutes until i woke up properly. Then the pain hit, it was horrible and i could barely move my neck. I don't remember it being this sore last time. I guess it was worse this time because they actually took a whole lymph node and not just a sample. The nurse kept taking my blood pressure and told me i had to lay there for another 20 minutes. When that time was up she helped me off the bed and i went and sat in a recliner chair. She went and got me a drink and sandwich and let mum know that i was out and she could come see me. They took my blood pressure again and said if it was okay i could go get changed, it was, so i went and got changed. The nurse went through the discharge procedure and told me i have to keep the dressing on until i see my doctor on Friday 15th. She gave me some Panadeine Forte to take home incase i needed it. Mum had to go and bring the car around because they had to take me down to the car in a wheelchair. She rang when she was out the front and they took me down. We got home just after 7pm.

I found it difficult to find a position to sleep in as I can't move my neck. I did manage to find a "comfortable" position and got enough sleep.

Wish I could run away.

Sometimes I wish I could run away and live in a paradise where I can forget about what's going on.. If only for a day!

Today I had a meeting with an anaesthetist, a nurse, had an ECG and got a blood test. I met with the nurse first and she just doubled checked all my details were correct and asked me a few questions. I then met with the anaesthetist and she double checked my details again and then explained what would happen when they put me under the anaesthetic and any risks involved. Because I have tachycardia (fast heart rate) she wanted a ECG done to make sure my heart was okay. I had my blood test and then went and had my ECG.

I had to call the hospital between 1:30pm and 4pm to find out when my surgery would be. After 14 try's I finally got through! I have to be there at 11am tomorrow morning (Tuesday 12th February). It will only be day surgery, so if everything goes according to plan I should be able to come home late afternoon. I have to fast from food from 6:30am and water from 10am.

So many emotions are running through my head at the moment, I'm not sure how I'm going to be able to sleep tonight!

Just thinking...

Having cancer is something I never thought I would have to deal with so young. For so long I have felt ashamed with what I have, i told very few people and hid away at home. I've come to realise that I have nothing to be ashamed of. I don't have a cancer that I caused myself so why be ashamed? I do however hate the looks I now get when I'm out and about, I'm not sure if they are looks of pity or what they are. I know a lot of people don't know what to say to me and that's okay, I don't know if I would know what to stay to me either. I'm not afraid to answer any questions people may have, I like to talk about my journey and through this I hope I can help people understand what it's like to have cancer. I'll admit, I was so naive before I was diagnosed. I thought people with cancer just had chemotherapy and that was it, I never knew about all these other things that went along with it. It has been incredibly hard, harder then I ever thought it would be.

Here are some facts about Hodgkins Lymphoma:
It is highly treatable
It will affect 1 in 25,000 people every year
It makes up for less then 1% off all cancers worldwide.
It usually occurs in young adulthood (age 15–35)
It is more common in males
There are no known causes
There is a 25% chance of relapse after remission
There are also about 40 different types of Lymphoma

I know people always say that having cancer changes your outlook on life, and believe me it does. I don't know how much time I have left even after I get to the remission stage. My doctor said that I have 90% chance of living 4 years and a 75% chance of living 7 years after treatment stops. It's scary to think that even once you have gone into remission it could still shorten your life. So yes it does change your outlook on life, it makes you appreciate what you have and cherish the ones that are there for you, and let go of the ones that aren't.

A Hairy Situation...

So my hair is nearly completely gone, i would say 90% of it has fallen out. It is at the stage where i can't wear it up or down in public. My amazing friends bought me a head scarf that i have started wearing. It's so comfy that i have ordered another one in a different design :) Im quite surprised how long my hair has lasted for (3 months since i started chemo), i am quite lucky that i had such thick hair to start with. I haven't got the courage up to shave it off yet! 

My lovely head scarf

How much hair would come out when i brush it

What doesn't kill you makes you stronger...

Friday 1st February 2013

I was all prepared to go in and have Round 4 day 1 of my chemo, we arrived at 11am for my appointment. Sat down in the chemo chair and the nurse started changing my PICC line dressing over. It got to about 11:30 and i said to her "I have an appointment with my doctor at 1pm, chemo wont be finished by then so i am not going to make it" she looked at me and said i wasn't having chemo that day only a dressing change. She went to the reception and checked with the ladies there and came back and told me that No, i was only having the dressing change as my doctor wanted to talk to me before i had anymore chemo. We had to hang around until 1pm to go and see my doctor.

We ended up having to wait until 1:30 as he was running late. I was prepared for bad news as at my last meeting he had explained that there would be a possibility of me going onto the escalated BEACOPP chemotherapy which is mixture of IV chemo and tablet chemo and also a possibility of having another biopsy, but he wanted to put my case to the Lymphoma Board to see what they suggested. So hearing the news that they had all decided it was best to do another biopsy didn't shock me. The reason that they want to do another one is because in my initial biopsy back in October 2012 my results came back saying that i could have either Hodgkin's Lymphoma or Grey Zone lymphoma. Grey Zone actually mimics a lot of the characteristics of Hodgkins, but since i had more characteristics for Hodgkin's this was the diagnosis they gave me. Apparently the doctors actually argued over which diagnosis to give me. There are about 40 different types of Lymphoma, and Grey Zone is actually quite rare. My doctor is almost certain that my diagnosis will come back saying that it is still Hodgkin's. This time he suspects that they will take out the whole lymph node instead of just a sample, and they will be able to cut along the same scar from my previous one. 

If it comes back as Hodgkins, then i go on the escalated BEACOPP, i asked him if the side effects where worse then the current one i am on ABVD, he said on paper yes they are but clinically he didn't think they where. The BEACOPP has tablets that i will need to take, he knows that i struggle with taking tablets so looked into see if there was a liquid version of the tablet and unfortunately there isn't, so this is going to be interesting. 
If it comes back that it is Grey Zone Lymphoma, i think he said that the chemo for that was called RCHOP. He said this used to be an inpatient chemo but he thinks it has changed to a outpatient one now. 

He couldn't tell me when my surgery would be, but said that he has stressed to the surgeons that he wants it done ASAP. I have a meeting with the surgeon and anaesthetist on Tuesday 5th at 10:30am, so i presume that i will find out then when my surgery will be in. So for now my chemo has been stopped and i will find out in the next few weeks what new one i will be on.