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Update..

It’s not 100% certain if this is the end of my cancer chapter, but I hope, pray and believe it is so. So much has happened in since my last blog and now.

Going in for my 7th cycle of chemo was a difficult day. I had expected that I would be celebrating and on the road to recovery, but there I was having another long day at the hospital – from 9 – 5 – starting from driving through early morning traffic for an hour and a half to get to the hospital, to going from having my bloods taken in the morning, to a short meeting with my lymphoma specialist/oncologist before noon,  to having a chemo infusion in the afternoon that ran just over 4 hours. At this point chemo was really starting to hit me hard. It rendered me short of breath for a few minutes after exherting myself at the level of climbing stairs, to being mind-numbingly exhausted and unable to concentrate for most of the cycle at this point. Also, at this point, I would get painful mouth sores for a week and have trouble swallowing.

After my 8th and last cycle I was due to have a CT scan. I called in my chemo nurse after a few days, because I was concerned with all the CT radiation I was receiving and I was wondering why a CT was necessary as my treatment was to be finished regardless. I had been told earlier that 8 cycles was the maximum dose of RCHOP that could be administered and I had been responding well to the treatment. My radiation oncologist had told me during our initial meeting weeks before that he had expected my treatment to end at 6 cycles. Over the phone the nurse informed me that I wouldn’t be starting radiation, because my radiation oncologist was worried that the size of the lesion had shrunk only .5 cm between cycle 6 and cycle 8. I asked what the significance of this was pertaining to my treatment – surely the radiotherapy could take of rogue cells. The answer I received was one that I had not planned to hear over the phone – there was a chance that I would need high-dose chemo and a stem cell transplant.

I didn’t break down much over the course of the last few months.. but after that phone call I allowed myself to.. The possibility of more chemo had not crossed my mind. And having gone through a hell of sorts and back.. and the possibility of having to return back to that grim reality of pain and illness that I would never wish on my worst enemy.. It was a blow to my spirit.

So I had my CT.

The results were inconclusive.

I had a PET – which is only funded by my provincial healthcare system for certain cases.. mine fit the criteria.

I went in for my results. By this time, some weeks had elapsed between my last cycle and results day. I was feeling better. The negative side effects of chemo (apart from my reduced exercise tolerance), were nearly gone. I felt better. I felt healed.

And then..

My nurse came in to check my vitals.. And before she left she lingered by the door and uttered a phrase..

“By the way, the results are good.. you’re in complete remission.”

Those two sweet words..

“Complete Remission.”

Registered as ecstacy – complete joy.

“Complete Remission.”

What every cancer patient aims to hear.

“Complete Remission.”

The best a cancer patient can hope for after treatment as “cure” can’t be proven by current investigations.

“Complete Remission.”

I’ll take it!!!

~*~

I just had a CT this morning – nearly one month after completing my one month of radiotherapy. Whether there is any added benefit of adjuvant radiotherapy  is unclear in regards to the subtype of lymphoma I had. The decision to pursue radiation therapy was something that I discussed on length twice with my radiation oncologist (btw he has best bedside manner ever)! During my trial run for radiotherapy, I was still uncertain – the potential long-term side effects of radiation therapy to the mediastinal area were in the back of my head.

My oncologist, when I had expressed my concerns about the long-term side effects of radiation therapy (which he had structured into my treatment plan) vs. the uncertain added benefit had said that one study (which was not a randomized control trial) had shown about 8% added benefit in terms of survival. However, he he had patients who had refused radiation who were now fine, others who had relapsed with both radiation and chemo, etc. This didn’t help me with my decision making, and still made me feel queasy about getting radiation.  My radiation therapists encouraged me to talk to my r. oncologist again prior to starting therapy and paged my r.o. What helped my decide to comply happily with the treatment was this:  I would be screened for and it would be easier to treat secondary malignancies down the line, if they were ever to manifest than to eradicate a recurrence of PMBCL (and we were looking at cure rates of >80% vs. 50%/ breast ca vs. recurrence). Thus, it would be better to do all I could to make sure the lymphoma was gone now as it was the most immenent threat to my life. So, I agreed to consent to the treatment. It was a difficult decision to make, the difficulty of which was appreciated by the healthcare staff.. but at this time we didn’t have much medical evidence to go by and my radiation oncologist did say that treatment guidelines (which indicate adjuvant radiotherapy) may change in the near future.. there’s a RCT that is now open to European and North American patients who have PMBCL comparing treatment success of chemo vs. chemo plus radiation.]

~*~

After my CT today, I went to the basement of the hospital to pay my radiation team a visit. I had the lovliest group of radiation therapists and it was great seeing them as a visitor and not a patient. They told me I looked well and asked to how my hair was growing – (thick wavy, yet soft like baby hair.. not quite as curly as I was told it tends to grow back post chemo..) Of course I whipped my wig off to show them the look.. I was told that the short hair suits me, but my self-image is still tied into the long hair I had prior to treatment and I don’t feel like myself when I see myself with short hair. Regardless, I am grateful that it’s growing back, and that I’m getting my energy back and look forward to staying on the track of being happy and healthy…

I have a followup with my oncologist in Sept and hopefully I’ll still be in the clear!

:/ :| :/

Quick update: Had my 6th cycle on Wed and hoped for it to be the last as per original plan. Rang the victory bell around 6:00 pm with the nurses cheering me on. I had my CT last week Mon and had a ‘tentative’ chemo appt booked for this Wed where my CT results would also be discussed – b/c it is easier to cancel chemo than book it last minute.

So I called in today to see if I could get my results over the phone – in case I had to mentally prep myself for more chemo – I didn’t think I would be able to handle going into discuss my results on Wed and having it turn out I would have to stick around for a 4 + hour chemo sesh.

Turns out I will be needing two more cycles.

I feel numb and disappointed. I was really looking forward to having treatment over, since I’ve started feeling more rough after chemo and I really looked forward to putting this experience past me..

I know I should be positive and I understand why the doctor’s are being aggressive in their treatment but it is still a sucky hard pill to swallow.

I will allow myself to :/:|:/ and wallow for a bit today.

Game face goes on tomorrow.

“Let’s go o…

“Let’s go on a little road trip”

Words spoken by my oncologist during our meeting a few weeks ago, before we walked past a bend in the corridor and into a room with a computer screen.

I had a CT last week – midway through the anticipated course of my chemo treatment plan. And this was the day that the results would be discussed.

I was nervous, even though physically I felt much better. Gone was the raging temperature, hacking cough, chest pain, and night sweats that I had lived with for a month. My symptoms had improved dramatically – logically the tumor must have also shrunk dramatically. But, I did not want to make assumptions and get too excited – not until I knew for sure what the results were.

Viewing the two Cts side by side, the difference between the two images was visually dramatic.

He showed me my CT from Sept and talked through it. The tumour was diffuse – at it’s greatest diameter it measured at 14 cm. There was a small pleural effusion in the R lung. My heart was displaced by the mass.

And now – the tumor measured at it’s greatest distance at 5 cm! 5 cm!!!

My oncologist – is a man of few words – but one thing that he mentioned was that the results went beyond what he expected! He didn’t expect this much response to the chemo at this point in the treatment!

Did the prayers help speed up the process? The session of Reiki? The social support? The positive thinking and affirmations? The fact that I prescribed to a healthy diet and exercise program prior to lymphoma? At the very least most of the above has made me happy or given me sense of peace.

So, for all my friends and family who have been praying for me and or supporting me (with your company, letters, fbook msgs, emails, calls, texts, skype dates, presents J) during this entire process: a BIG huge thank you!!! You have brightened my days, encouraged me to have faith, and helped me reach a sense of normalness during this crazy time! And I believe that this has helped speed up my healing!

~+~

One thing that surprised me at this meeting was the fact that I may have 5 more cycles of chemo, rather than 3. I have been looking so forward to the sound of the victory bell which is rung by the chemo nurses after one completes their last cycle of chemo my last day of chemo – which in my head has been after my 6th cycle – to the day that my life is no longer ruled by chemo regimes and broken into 3 week cycles. And now I’m told that I will be CT’d again after the 6th cycle to see the response, and if the tumor has shrunk more than I will have 2 more cycles of chemo – because it means the chemo is very effective.

However, I’ve considered and now come to accept this possibility. If maximizing my odds of a cure means having 2 extra cycles of chemo then bring it.

Chemo: a necessary evil

So much has happened since my first post. I have had to make some difficult decisions (putting evidence based decision making in action for myself!) and I have reached the end of 2 cycles of chemo. My symptoms from September are gone – thank God – no more hacking cough, SOB, high grade peaking at 106 degree fever, or night sweats. I can now sleep restfully at night! I don’t have to take tylenol and advil 4-6 times a day every 4 hours to manage my fever as per ER doctors suggestion (as I did for a month – my poor kidneys and liver!) I am so grateful that these symptoms have been relieved and my quality of life is much improved.

However, along with chemo comes a new set of symptoms which for me last up until a week. I feel queasy – but I take my antiemetics regularly and then some, so I haven’t had full blown nausea & vomitting. Sore throat – first few days I use this baking soda and water solution to rinse my mouth before and after each meal to avoid getting full blown ulcers. The worst of the symptoms is the “cancer fatigue.” I have tried to explain this symptom to friends and family and it is honestly very difficult to describe and is unlike any other state of fatigue I have felt.

I have experienced tiredness after: pulling all nighters, partying 3 nights in a row while at uni, working until the break of dawn post-food poisoning and then going to class to give an hour long presentation in a seminar course, waking up at 7 to get ready and walk to the hospital for rounds missing a good nights sleep, and walking around anemic and this exhaustion is at a whole different level for me. I feel restless during this week and cannot concentrate and it’s extremely frustrating. I feel like the energy has been zapped out of my body rendering me in a zombie-like state. Cancer fatigue is the worst.

The hope -that “next week it’ll be better” – gets me through (week 1 of cycle is the hardest) as does the fact that my initial symptoms are alleviated. Week 2 is when my WBCs are at the lowest and I am rightfully paranoid of getting an infection. So far, so good – only contracted viral pharangitis and common cold – which tends to last longer as I’m immunocompromised. Week 3 is the week that I feel most like myself again.. and then it all begins again!

Chemo is a necessary evil. Death is the alternative. And already I feel so much more alive than I did 3 months ago.

It begins with a cough…

My story begins with a cough…

A cough that had been ongoing for a few weeks. It was a dry
cough that did not vary throughout the day. It occurred randomly at any time,
without any trigger. At first it was just an annoying dry cough, which I was
informed by two other family doctors was asthma (although no physical
examination or investigations were performed to back up this claim). I
grudgingly took the inhalers that were offered to me, but my instincts and my
medical knowledge compelled me to believe that this was not mere asthma. The
inhalers helped a touch but had not completely controlled my asthma. And
despite the assurances, I still felt I did not have asthma. And not having had
formal investigations before being diagnosed with asthma felt very wrong.

I did not feel the chest tightness that accompanies my
episodes of exhertional asthma. Nor could I hear a wheeze upon auscultating my
chest. The cough did not fit the classical pattern of asthma.  And why now.. why would I suddenly develop
asthma now in the summer?

I decisively went to a walk in center, requested and was
granted a chest xray requisition form, which I subsequently sat on for a week
or two (during elective.. hard finding a gap in schedule), before the fever
kicked in. At first it was low grade, but it later spiked to a constant 105
degrees F.  At this point I was convinced
I had “at least pneumonia.” The xray technician insisted that I go straight to
ER, and upon sneaking a look at my CXR I agreed. I’m far from being an expert
at reading chest xrays, but the large peri-hilar mass in my right lung was very
obvious.

The ER doctor prescribed me antibiotics for atypical pneumonia,
but requested a next-day CT appt. The CT established that I had a large
anterior mediastinal mass (I saw the CT for the first time 2 weeks ago and holy
shit it struck me how big the mass actually was.. 10 cm is a lot when you put
it in context  – it is roughly the size
of the width of my chest).

2 transthoracic biopsies later (first one botched up due to
insufficient tissue – radiologist biopsied my lung and not the mass), followed
by delays in communication/transport of biopsies between my local hospital and
a specialist center downtown later and I am waiting for a definitive diagnosis,
which I have been assured will come soon.

`*`*`*`

This entire period has been stressful. Pretty much the day
after my CT, I was informed that I probably had cancer. I think I went through
all 5 stages of the grief cycle that day – in shuffle mode. On repeat.

I met with a cardiothoracic surgeon shortly after, who
detailed that I either had lymphoma, or thymoma. He was 99.9 percent positive
that it looked like malignant thymoma. I asked to know more about malignant
thymoma, and about the CT features that differentiate lymphoma from malignant
thymoma. The moment after he described that there are two types of thymoma –
one that is well encapsulated and easy to excise, and the latter which is
diffuse, aggressive and requires induction before excision – the moment where
he told me mine was the latter, was the moment where I felt sick and where I
felt my brain wanting to shut off. I kept myself together and my mind –
scrambling to escape – back to the conversation.

Cancer is not an easy topic to discuss. Although I
appreciated the no-nonsense informative answers I received from this doctor, I
felt that he could gain a bit from communications masterclasses on breaking bad
news. Cancer is not an easy diagnosis to swallow. Withholding the statement
that one is 99.9 percent sure of a diagnosis of a rare cancer, without tissue
diagnosis would have been most appreciated. Regardless of being a medical
student – I am not a textbook, I am still a person.

`*`*`*`

Acceptance. Having various specialists tell me that I most
likely have cancer, having seen the CT, and having experienced a rapid
progression in symptoms makes the diagnosis seem that much more probable. I
have had some friends and family members in denial, and I have asked them to accept and
support. And a big shout of to those of you who have. xox