Treatment #2: Radiotherapy?

Supposed to post this earlier but I got lazy hahaha zzz now I have a backlog of updates:

Thursday, 29th January 2015

I had an appointment with Dr Lim to discuss the results of my PET scan done a few days before. This scan was done after 6 chemotherapy sessions, and was supposed to check on any signs of mass/cancer activity left in my body.

My scan showed that the mass has decreased — what's left measures 4.7 x 2.8cm (compared to the previous scan, 6.2 x 4.2cm). But there's a concern over the activity part, because it INCREASED from SUV3.6 to 7.0. This can mean two things:

1. The PET scan is very sensitive, and it may pick up activity from scarred tissue that will slowly go down given more time

2. There's still some disease left which means that radiotherapy is needed to zap it off

They've arranged for another PET scan after CNY on the 23rd Feb to try to make sense of things. But for now, my doctor is more keen on radiotherapy to get rid of the cancer totally. He says he rather 'overtreat' than miss out on something which can be worse.

But on the brighter side of things... I'm off my (blood thinner) injections and PICC line!!!!!! Major hallelujah! I have been injecting myself twice a day for the last 4 months my stomach got pretty badly bruised. I got used to the PICC line but yes, really really glad to get these two out of the way.

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Wednesday, 4th February 2015

Dr Lim discussed my case with other specialists (radiologists, radiation oncologists...) last Friday and he helped to arrange for me to meet Dr Yeoh, a senior consultant in radiation oncology today. I think the consultation was around an hour?! He explained radiotherapy thoroughly — the history, side-effects, my case... 

Honestly I wasn't keen on radiotherapy AT ALL. (HELLO... I WON'T SIGN UP FOR ANOTHER CANCER TO HAPPEN IN THE FUTURE!) I've always thought it was a really bad type of treatment (must be all the horrible stories of old technology radiotherapy). Ok la, then again, chemotherapy is equally horrible!!!! Scientists should find even better cures for cancers ASAP. But I can understand where the doctors are coming from, pros vs cons. Like what Dr Yeoh said, there can only be so much scans I can do. Plus, most of the time, he says that patients who keep doing scans, the results are hot-cold-hot-hotter... In other words, time is of the essence. We wouldn't want to wait and only find out one day that the cancer has deteriorated. *touch wood*

Because I started off with a HUGE tumour (12.6 by 6.5cm), chemotherapy can only do so much to shrink it. Most lymphoma patients will still have abit of cancer cells left because of the tendency that our tumours are naturally larger in the first place. Dr Yeoh described chemotherapy as a systematic type of treatment (i.e. it goes through the whole body), while radiotherapy is localized. 

With modern technology, radiologists are able to blast the radiation at precise locations that only hit the affected cancer cells. But every treatment comes with side-effects and risks right? Since my mass is at the chest area...

Short-term side effects:

- Redness of the skin ("You mean like sunburn?" "No, for sunburn there's peeling. But for this... It's like spending 2 hours walking at the beach")

- Dry cough

- Fatigue

Long-term side effects (20 years down the road):

- Secondary cancers: Skin, bone, lung, breast

- Heart and lung problems 

Dr Yeoh assured us that these secondary cancers only occur to a reallyyyyy small percentage of people. As we grow older, risk of cancer goes up anyway. I ran into Dr Lim at the entrance, so nice of him to say hi and check on me. After balancing the pros and cons, the doctors agree that getting rid of my current tumour entirely is the safest option, and an option that will give me a peace of mind, rather than playing the waiting game.

And since there's a pre-treatment session for radiotherapy for the doctors to decide on how they are going to carry out the treatment (e.g. how to localize the radiation such that it has minimum effect on my vital organs)... I have an appointment booked next week on the 11th. The real treatment begins on 29th Feb (if I decide to go through with it, after my PET scan on the 23rd Feb). It will last for 3 weeks every day (????!!!!), and 15 minutes each time. 

Gah.... why can't SGH be in the east?!

Post-chemotherapy Round 6

Hello, I am back and I HAVE FINISHED ALL 6 CYCLES OF CHEMOTHERAPY!!!!!! I was home on 14th Jan, just in time to celebrate my mom's birthday on the 16th. I was fit enough to head out for her birthday dinner at Dempsey on the 2nd day post-chemo, so I was quite happy because usually the first 2 days I'll be having body pains (muscle/bone aches). 

Initially I thought my PICC line would be removed right away after my chemotherapy ended, but the doctor said he'll only take it off when I meet him on the 29th... just in case. My PET scan will be on the 26th — this scan will check if there's any more cancer-active cells left after these 6 rounds (TOLONG please no more ah). 

The doctor says the results will be classified using a scale of 1 to 5-

- 1 and 2: confirmed cancer-free 

- 3: unconfirmed, and a second scan will be needed 3 months later

- 4 and 5: still some cancer cells left, and the oncology team will need to discuss with the radiologists for potential radiotherapy

Praying really hard that it'll be a green light from the doctors on the 29th! *crossing fingers and toes*

Scare No. 2

I'm home for Christmas!!! Really glad I managed to push forward this round's chemotherapy. The ward was getting pretty quiet too... I guess people would want to hold off any treatment until after the festive season. There was even one night where I had the entire room to myself! 

On the last day of chemotherapy, while the nurse was cleaning up and flushing my line... My PICC line decided to throw me a second surprise this week- ONE OF THE STITCHES HOLDING IT DOWN DECIDED TO COME OFF???!! Sigh. Thank God that the ward on-call doctor was pretty efficient and did the stitch rather quickly. Since I was on local anesthetic, there wasn't any pain so I decided to look at how it was being stitched hahahaha had always been curious! 

Christmas this year will be a simple homemade dinner with the family- we are going to be roasting a duck instead of the usual turkey because it'd be too much! Fingers crossed it'll go well! 

Merry Christmas xx

Yesterday's scare

Had an appointment to see Dr Lim yesterday, and as usual, did my blood tests and the flushing/cleaning of my PICC line. There are two lumens on my line... one was alright but the other was not!!! There was no back flow, and worse, it couldn't be flushed. This meant that no liquid could flow through the tube as there was a clot somewhere, most probably due to fibrene. At that point, there were only two scenarios:

1. They'll inject some medication into the line, leave it there for an hour to unblock it, or;

2. If the above doesn't work... They'll remove the entire PICC line, and schedule me for surgery to re-insert it.

Honestly, I was so sian and heavy-hearted when I heard the second part.

But this morning, the moment of truth — when blood started gushing out into the syringe as it pulled back (the backflow)... The clot is gone! With God's grace, the medication worked!!! So thankful yay. Will be starting chemotherapy this afternoon, it'll be my 5th and second last cycle. It's a bit early this time round so that I'll be home just in time for Christmas :) Here we go!

Realized I haven't posted a photo of the line without it being wrapped up in dressing... For those who are interested, it looks like this! (p.s. Not for the faint-hearted hehe sorry it looks kinda gross)

Post-chemotherapy Round 2

I was discharged on 18th Oct, so I'll be resting up at home for the next 3 weeks. The second chemotherapy went by smoothly — I was amazed at how 5 days went by so quickly! During this cycle they increased the dosage, and this will continue as long as my blood counts remain good enough. There were no nausea side effects this time, just fatigue. All I do is sleep and eat, I wasn't even allowed to walk to the toilet! Total nua mode. The nurses were really kind, one even bought me a madeline from flor patisserie :')

Remember how I was saying that the PICC line that was inserted before this cycle was so troublesome...? Well, it will remain inserted till the end of ALL my 6 chemotherapy cycles. My parents were taught how to clean the area once a week, it'll have to be super clean, dry and germ-free. Looks like I'll be in long-sleeved loose cardis when I go out for the next few months!

The past couple of days I've been slightly feverish (37.7-37.8 deg), although I feel not serious enough to go back to the hospital. Actually had high palpitations today for 5 minutes too sigh. Anyway, the doctors and nurses once cautioned that once there's a fever, I'd have to return to hospital — "a fever to others may just be part of a passing flu, but for you... it can be life-threatening!" But then again, body temperatures post-chemo are known to be abit higher too. I promise that I'm not acting tough or anything ah... but really, I think it's important to know your own body. I still feel the same as with a lower body temperature, so all's good!

Also, instead of the 7-day booster jabs that I needed to inject myself post-chemo, they gave me a 1-day one this time around! Apparently previous blood counts have shown that my body is pretty strong... so this one time jab actually has a few "layers" - it will self-activate every day without me injecting myself. Hurray!

Gearing up for chemotherapy Round 2

Went to SGH this afternoon for my appointment to insert the PICC line — a similar line to the one that I had at my groin (the femoral line) previously. 

The doctors had to use local anesthetic to numb the area, and then ultrasound scan to make sure that they're poking into the right vein (or artery?). Ended off with two stitches to fix the entire line down. 

Rested for an hour before I was allowed to go home. After the anesthetic began to wear off, wahhh the pain! Hurts more than the femoral line. Maybe cuz my arm is more active and I have to keep moving it? Hopefully the pain will be gone when I wake up tomorrow!

Not sure if this is gonna be semi-permanent/lasting for more than one chemo session, but it's so zuo-dang (best translation would probably be 'in the way')! Plus, it's on my dominant right hand. Guess this will train my left hand abit — shall start by brushing my teeth tonight!

Flashback: While in SGH

Saturday, 13th September 2014

At Changi General Hospital, A&E

Only 2 weeks ago, but so much has happened. It was a Saturday morning, and I had woken up with a swollen face/neck and a terrible cough. I have been coughing (with on and off fever) for 3 weeks, and my face has been swelling for a week as well. After 3 trips to 3 different GPs, I wanted to go to see the sinseh (Usually that's what people do right? If western medicine doesn't work, TCM to the rescue!). That morning, my dad returned from a flight and was still shocked that I was still having 'flu' — and worse, with a swollen face. I was sent to A&E at Changi General Hospital after breakfast.

The doctor could not figure out what was wrong with me — could it be a drug allergy? But she ruled it out because I've been taking normal cough mixtures and panadols... If it were to be a drug allergy, surely it would have sprung up at least once the past 22 years. So I was sent for the full checks — X-ray, urine and blood tests.

I was on drip, resting on a corner couch, almost sleeping. And then I was gently shook awake... "Amanda, the X-ray shows a mass in your chest. Do you smoke/drink? Do you have a family history of cancer?"

The rest was a whirlwind. I was transferred to Singapore General Hospital in an ambulance — lying in the stretcher, I was breathing through a portable oxygen tank, having a drip, and clamping my legs over a mega machine which was apparently able to keep track of my heart condition (side track: I have Wolff-Parkinson-White syndrome since young, an abnormal extra electrical pathway of the heart).

I stared out of the window as the trees along ECP swooshed by. When I awoke, I was being admitted into SGH already.

Monday, 15th September 2014

In the operation gown, face still as swollen as ever

Major test day! I was going for a biopsy to find out what exactly the mass in my chest was. It was scheduled to be at 9am, and I had to fast from midnight. As they wheeled me from my ward into the waiting area, I was so nervous I teared.

I had two major concerns:

- If the biopsy were to be unsuccessful, they would have to proceed with surgery to get a 'sample' of the growth (i.e. cutting my chest open)

- What if it's cancer!!!!! (Yes, I still had the little hope that it was just a benign mass)

The biopsy only started at 1130am. The local anesthesia was injected four times to numb the area for the pin-hole operation. I was on the super flat operating bed, and it became really uncomfortable because I kept coughing... I coughed so hard my chest hurt so badly, and tears started welling up in my eyes (I was in pain because of the cough, and not the biopsy). All these while they were poking me with the biopsy needle.  It was to the extent of not being able to breathe properly, so the doctor decided to take a short break. He gave me the plastic mask (the kind for general anesthesia) to inhale something that managed to suppress my cough for awhile. Thank God the biopsy was done 15 minutes after that, because my coughing kept going on, I felt my chest was going to burst.

The doctor then inserted the femoral line at my groin area — it is thicker than the normal drip line, and needed to be stitched. This was going to be there until the end of my first chemotherapy cycle. This line would allow them to draw blood, insert the drip, insert my chemotherapy drugs etc (basically everything).

I was in a daze lying on the bed face-up, staring at the white ceilings as they wheeled me back to my ward — I only turned to my side when the nurse accompanying me touched my hand and said, "stay strong, okay?"

"Okay."

Tuesday, 16th September 2014

Went for even more scans/tests in the morning... but the afternoon one was the highlight of the day — the bone marrow test. This test is to show whether there are cancer cells in my bone marrow. I've heard from everywhere that it would hurt. Well, thankfully the pain was manageable. In fact, on a scale of 1-10, it's only 2-3! They had to inject local anesthesia three times though. Apparently my bone is VERY hard hahaha the female doctor, Dr Kaavya, had difficulty and had to even get the male doctor to help her out with the pushing of the needle into my hip bone. Well, she says it is a good sign that my bones are strong. It means they are healthy!

On another note, the gynaecologists came to speak to me about the option of taking out one of my ovaries before chemotherapy. There was a risk that chemotherapy would affect my fertility in the future. BUT, the operation for this is major, and requires general anesthesia. If I decide to go through with this, chemotherapy would have to be pushed back 1-2 weeks, as my body will need to recuperate after the surgery.

My first thoughts:

- Having children in the future is important to me — but with this, does my body have the luxury of time to push back chemotherapy?

Thursday, 18th September 2014

I woke up at 4am to go to the toilet. The lady at the next bed was struggling for her life. Through the 2-3 days that she was here, I have gathered that she has brain cancer. The whole nurse team and two doctors were by her bed — they even pushed a trolley with orange sides and an orange box. I have never seen this trolley before... it meant that it was serious. I turned on my side and managed a glimpse of her.

At 5am, I stirred from my sleep and saw that family members were already gathering at the next bed, saying their last goodbyes. I couldn't help but tear. When the nurse came by to draw my blood, she decided to move me to a private room for the morning until everything was over. That was very thoughtful of her — I don't think I would have been able to take it. Not right now. 

Have been taking steroids, which suppressed the cough and got rid of the swelling!

Anyway, they forgot to take my breakfast order the previous day... so I was eating oatmeal and bread (definitely not my first choice). Breakfast was supposed to be muffins! I tried my luck, and asked one of the nurses to check if there was any extra left in the kitchen. Well, there weren't any left — so after her shift, she kindly surprised me with a pack of 3 muffins from the bakery downstairs. Nurses are the best people on earth!

Highlight of the day: Joel is finally home for 10 days!!!!! So so blessed and grateful that he's back. I know I initially told him that I was gonna be okay on my own — but he flew back anyway. Besides my family, he's my other pillar of support and with him going through the first phase of chemotherapy with me, I won't be going to battle alone.

Decided that I would be starting treatment the next day. Dr Tiffany said that chemotherapy would have an extremely low risk on my fertility — this confirmed my decision to go on with treatment immediately and to forgo the removal of one of my ovaries. The surgery is complex, and there was even a risk of my heart stopping?! I don't need that! Plus, any form of surgery would definitely weaken the body, and I wouldn't want to fight a war that way. My first priority is to kill the cancer cells!

Friday, 19th September 2014

Chemotherapy starts today! Chose to go for the R-EPOCH treatment rather than R-CHOP. Well, it was created to reduce recurrence, and to diminish the need for radiation. CANCER CELLS BE GONE!!!

Have been looking and reading at what to eat (e.g. antioxidants), what to avoid... 

Also, used pinterest for hairstyles (pixie? bob?)... I contacted Lucas my hairdresser, and he was going to come on Monday to cut my hair! Pretty excited.