Sighhh

I guess its time to update but I don’t feel like it, I don’t feel like reporting or telling or sharing or doing any of those things. I feel like focusing all my energy on somehow escaping my body, crawling, kicking, punching running hurdling myself forward and out of what becomes less and less real every day. I am not anything that is happening to me, I am not this disease, I am not its side effects, I am not where it chooses to inhabit next, I’m not these things, nor do I no longer want to be associated with them. Why then do they wish to be associated with me?

On my particularly bratty days, the days where I have no business asking why this is happening, or why can’t it stop I am reminded of what a brave friend of mine once told her dad who was suffering this and she said “what makes you think you should go through life and be able to avoid all the suffering?” Things that make you go hmmmm and certainly shut me up in times of brattiness.

I had been feeling awful for about 2 weeks, horrible stomach pain, cramps, nausea, no appetite. I spent my days wrapped in a heating pad, 4 baths a day to stop the pain. I lived in pjs (like I don’t most days anyway), Adam left for work at 6 and returned home at 6 to me in the same pjs and same position. I wanted to believe it wasn’t lymphoma related so had several trips to emerg to rule out anything and everything possible. By Thursday I couldn’t move, crying, aching I picked up the phone and called PMH. They had me down the next day for a catscan and to deal with the pain. I saw Dr. Gangatharan and Dr. Crump both who were concerned and squeezed me in for a catscan, they were going to see me that afternoon to give me the results. Adam and I waited around, had my catscan at 1:30pm and went back to the hematology clinic to page the doctors as the clinic closes in the afternoon. The secretary looked up “Erin Leigh right?” Awesome, out of 3000 hematology patients I’m now a familiar face, groan. “I’ll page them.” I sat there beside Adam in the huge empty clinic, I don’t know what I expected really.

Out came Dr Crump papers in hand and he sat down and stared at me, oh fuck I thought. “Well the pain you are experiencing is lymphoma related it has spread to your liver and kidney.” I felt my lower lip start to quiver and I bit down hard, but then my eyes began to well up. I just stared. “Your liver is swollen and stretching causing the pain. Our goal is to get you on the trial asap and get you some pain relief right away.” He excused himself as he was on his way to a meeting and Dr. G was coming to take care of the pain and explain the rest. I looked at Adam and started to cry and swear and then I noticed he was more upset then I had ever seen him, he had to get up and walk away – this broke my heart more than any news about me ever could have. I watched that man’s heart break into a million pieces and I couldn’t fix it.

Dr. G came in and went over what he could, and put me on steroids, 5 a day for the next 5 days to help with the pain. I would be hearing from the trial people early in the week. We left numb to everything, wandered through the go station not giving a crap and wondering how on earth I was going to break this news to my Mom and everyone else for that matter. I didn’t even want to talk about it, what’s to tell, what is to even say? I was sad and that’s all there was to it.

The steroids kicked in immediately and I was able to shower, do laundry, walk the dog, drive my car, eat and feel like I was part of society again, for this I am so so so grateful. Too many days of pain and suffering really weigh on the mind and make life indescribably tough.

I spoke to the clinical trial people, they are making me re-do all of the tests I just did a month ago to be approved again. They have to be done within a “certain time frame of starting the trial” this naturally enraged me and I told them that perhaps they could pull their heads out of their asses, and see that I don’t need another eye exam or brain mri – nothing has changed I’m not 70! The other tests I know I have to have but these again? Gimme a break! There was silence on the other end of the phone and then she began to laugh and said I will see what I can do. Surrrrreeeeee they will. Jerks.

My steroids finished today so I am sure I’m in for a whirlwind of hurt in the next few days = coming off 25 steroids is very difficult mentally, emotionally , physically – Adam calls it my “roid rage” lol and in a sense it is. As much as they work the side effects of them aren’t good for me either so I can’t stay on them. Because I’m sure you all need a laugh at this point I will share with you my 2 largest pet peeves of the day….

I am obsessed with mandarin oranges the little ones that come in the packed fruit cups – just delicious but why on earth do the packs have to explode EVERYWHERE no matter how careful I am opening them? Dear Dole is there any particular reason you fill the fruit juice up WAY to high every single time?! I swore up a storm tonight as I bathed in the fruit juice again.

My second biggest pet peeve is the cashiers at the grocery store “Would you like a bag?” No I would like to somehow carry all fucking 12 items out in my bare hands, or better yet maybe I could just stretch m shirt out and carry them in there? What kind of dumbass question is this and why when you see that I’m not carrying your “recyclable bags” do you ask me if I need a bag….umm yes.

These last 2 rants will prove to you I’m just fine lol, crazy as ever, a little roid rage and that yes everyday things still find their way on to my list just as they do yours.

I will get through this the same way I have gotten through the rest. Faith never wears out 🙂

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The Term “Palliative” and Why It Is Now Banned From Your Mouth.

I was called into the room for my radiation, they normally hand me a gown and I go down the hallway to change but the last couple times, they’ve just told me to change in the room. I suppose it doesn’t really matter since they see me topless to get me lined up anyway, but nobody gets the show twice in one day bhahaha! They left the room so I could change. As I stood there waiting for them to come back I started to read the computer screen…what?! it was right infront of me I could hardly look away.  Font size 72 (megviz), it said my name and directly below it “Acquisition: T4 Palliative” this did nothing but hurt my feelings and make it hard not to cry and use my long list of profanities you’re all now familiar with as I lay there. Screw you PMH, radiation people, computer screen – you don’t tell me what I am or what statistic I fall under. AS Homer Simpson says “well you can cram it with walnuts ugly.” Maybe this meant palliative pain? Maybe, maybe, maybe ughhhhh. As I walked out of PMH today I was listening to the click of my heels down the hallway furiously thinking about everything and then I realized I think I was stomping, yes, yes I was. Don’t tell me or define me when you don’t know what I am capable of huffffff. And thus begins my rant on the word and meaning of “palliative” and why it is banned when speaking about Miss Erin Leigh.

About a year ago I was sent to see Dr. Burke – a palliative pain doctor. I was added to his palliative pain team PACT, given a special card to carry in my wallet and a direct line to him at all hours of the day. Finally some rock star treatment for all the wrong reasons. I was given some pain pills and off I went.

A year later I was back in horrendous pain, could barely get out of bed, no appetite from pain (you know I’m in trouble when my appetite is gone!). He sat with me for 2 hours!! went over every symptom, explained things and helped me to understand. He looked at me and said “what does palliative mean to you?” Oh shiiiit he said the word, the word you don’t say with me, lookout world she’s going to blow! Calm, calm, be calm Erin just settle down I was saying on the inside. I wriggled in my seat, looked up at him and said personally I HATE that word, I don’t like it being used with me. However, I said I’m trying to look at it more of a “long- term” thing instead of your days are numbered type of deal. Okay he said you’re right and said “does palliative mean you’re going to die?” Yes I responded. Does palliative mean you won’t die?” Yes sometimes I said. “How long have you been on my palliative team?” 2 years I said. “If I saw you on the street would I or anyone else know this by looking at you?” No, I said with a grin. I saw and understood what he was doing, I was thankful for it. He turned to his resident and said “what does palliative mean to you” the poor boy could not have been much older than me and he stumbled over finding the words, Dr Burke looked at him and said “be careful how you answer she’s feisty.” 🙂 His answer similar to Dr Burkes long-term care with an outcome no one can really pinpoint. Crisis averted I was calm and feeling better about being part of “team PACT.” It’s like that team or club you really don’t want to be part of in high school and you cross your fingers no one sees you participating lol.

Dr Burke sent me home with an answer and pill for everything I was experiencing and gave me his pager number and said “don’t go to the emergency room if you’re in pain, just page me even if it’s 3am I’ll come right to the house. The emergency room is the last place you need to be.” Wow I hit the jackpot with this doctor and am beyond grateful to have fallen into his care. He is a very caring, understanding man whom is able to laugh alongside with me and help me to see the bigger, bigger, bigger picture.

And to end with words that could not me more true…

photo-8

 

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Beg for radiation and you shall receive!

I was really hoping to have radiation on the spot on my rib ASAP. I’m so worried it will get in my bones (I’m not a worrier and this has my mind going a mile a minute) and my logic is, if it was successful in my chest, I’m praying it be successful on my rib. I do realize I have 2 other spots but they can’t have radiation due to location, so I will deal with that as it comes, perhaps, with the trial should their size at some point qualify.
I had talked to Susan (trial lady) who had said there was an email going back and forth regarding my radiation but no definitive answer. Some concerns because it is so close to my spinal cord. “I don’t care, just please tell them I’m willing to do it and will do whatever they say” I told her.
I frantically paced around yesterday morning feeling ill about everything, willing the phone to ring and the answer to be yes and I’ll be damned the phone rang! “Can you be here tomorrow for a scan and to sign consent forms?” I sure can! I was happy the answer was yes and that they were moving quickly.
I sat beside the big fish tank in the waiting room today and discussed with a man what all the fish were doing…had we both lost our minds? Quite likely 🙂 He was called in and the nurse introduced herself to him “My names Angel” he stood and stared “pardon?” “Angel” she repeated. He started to follow her and stopped again and said “wait, I’m still alive right?” I think we all wondered that upon hearing her.
I met with Dr. Tsang this morning who is my radiation doctor and for the record one of my all time favourite people. He has agreed to radiate my rib which will hopefully alleviate my pain and take care of that spot. It will only be 5 treatments this time and it will be once a day which is nice. They are hoping to start tomorrow.
I am just waiting for a catscan now where they will plan out the routes they will use to radiate and of course give me a needle where they will miss the vein 3000 times and then call the iv nurse…glorious.
And because you all know my love of food I’m going to eat french toast with Adam when I’m done 🙂

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A Side Step.

We made are way downtown yesterday to find out what was going on now. I was surprisingly calm as we sat and waited. The doctor came out and called me in personally – this never happens normally the nurse comes and gets you. Adam looked at me and I started to laugh, I’m sure this means something great, we chuckled.

I looked at the doctor and said w.t.f. he laughed and said I know. It turns out the radiation had worked better then they had thought on the tumor in my chest. The pet scan revealed that there was “no measurable activity in my chest.” The tumor was still there all 8.5 x 5.2 cm of it however it appeared to be dead. This was great news that caught us off guard as we weren’t really expecting much. Something had FINALLY worked on that tumor after 2 years of not working. I will be scanned again in 4 weeks to check the status of that tumor.

On the other hand, they found three new tumors in January, one near my heart, one on my rib and one between my vertabrae. These 3 were not radiated and unfortunately the one on my rib has grown since it’s original appearance in January. Part of me knew this as I am in agonizing pain in my back. My doctor was going to talk to the radiation doctor to see if it was possible to radiate the spot on my rib. The concern is I have been radiated 10 ways to Sunday which also  = 60 times in regular speak lol and they can’t go through on the same angle when they radiate. So I’m crossing my fingers they can find a way to blast this damn thing.

As for the trial, they will only allow me to take their drug if my tumor is 2cm or bigger. Which is great that I don’t have a tumor bigger then 2cm right now (excluding chest because it appears dead) considering it started at 13cm. However, am I expected to sit and wait until these grow to 2cm in order to get help? I am concerned about the one on my rib bone getting into my bones as they can’t “measure” cancer in your bones which leads me to believe the trial still wouldn’t accept me if that were to be the case. And as ridiculous as it seems to me, I am well aware that the goal of this company is not my health or best interest, it’s to find out how much of this drug they can give humans and to prove their reasons. I would however like them to meet me, hear my story and tell this to my face – you know because I’m evil like that lol.

Until then, I am to manage the pain with the pharmacy I now have at home, and will be back in 4 weeks to be scanned. I am not angry or sad or really anything. I don’t view this as a step backward. Some good came of this and I have to be happy and grateful for it – there are people I sit beside at the hospital who would die for the news I got yesterday. I have to believe I am on the right path, and last time I checked you can’t “boss” a miracle so it will unfold in it’s own way, on it’s own clock and I will be there ready for it.

As I said yesterday it’s not a step back or forward, and a dear friend chimed in “It’s a side step” and he was perfectly right. I picture myself on both knees, the news made me stand up, but I was wobbly and needed to step to the side to firm up my balance. I am now facing forward, balance is good and am ready to take that step forward and mean it. xo.

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Serenity Now.

My clinical trial is scheduled to start March 3rd. Radiation finished several weeks ago. I have had every test under the sun to get ready for this trial, cat scan, pet scans, echocardiographs, blood, urine, brain mri (YES I HAVE ONE) and blah blah blah.

I had my last pet scan Friday, hopped on the go train and when I got home I got a phone call. It was the clinical trial people, there was a problem the drug company won’t accept me based on my pet scan results. I started bawling, I was confused I didn’t understand. There is a good side and a bad side to all of this so I must sit and wait until Monday to speak to a doctor to find out what the hell is going on.

So I leave you here sitting with me – not assuming the worst and not assuming the best (shhh secretly I am) I will do my best to remain calm until I can have some factual answers Monday.

 

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Change 238758596596

We were all expecting my biopsy to come back as Hodgkin’s Lymphoma however because of my new diagnoses my treatment plan changed for the 100th time. Now my radiation doctor wanted me to have radiation immediately twice a day for 3 weeks for a total of 30 doses. This would be followed by a Stage 1 Clinical Trial. Had they known I had diffuse large cell b lymphoma in the beginning  I would have been given this double dose radiation as it is supposed to work better for what I have.

This radiation would be a bit different, no face mask, more tattooing and I would have a snorkel and a nose clip – that’s right you read that right. They would only radiate me while I was holding my breath – this was less damaging to my body as when I take a deep breath my other organs pull away from the spots requiring radiation. It’s basically like snorkelling minus everything fun about snorkelling lol.

I won’t lie these 3 weeks damn near killed me and then I caught pneumonia on top of it. Total balls. My friends came to appointments and stayed which helped me to get through it. After week 1 I just lost my mind. My radiation had to be spaced a minimum of 6 hours apart and not being from Toronto I wasn’t going to drive in, drive home and back again. I would get up catch the 6:30am train to Union, hop on the subway to Queens Park and walk the short block to the hospital, have my radiation, hang around, sleep in a chair, have my second appt and do that routine for the way home. I was exhausted. I got home and had a melt down. I was sitting infront of the fire and Adam was asking what was wrong and I just began to yell and then cry, of course this was all while eating an egg roll and do you think I could put it down? No, I continued to eat it and have it fall out of my mouth while yelling and crying lol – this poor man how does he even like me?! Lol.

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Biopsy Results Are In….Place Your Bets!!

I escaped with my bf to St. Lucia for a week in December. The day I got back I was to have the biopsy. As we sat in the airport in St. Lucia and learned of the ice storm at home I started to freak out – I can’t miss this biopsy I fought so hard to get this date. I arrived home at 3am and was in day surgery by 7 🙂

I met with my doctor who informed me that the biopsy from my chest revealed that I had Diffuse Mediastinal Large Cell B Lymphoma. Craptacular. An aggressive lymphoma (evidently) that happens more so in the elderly. They suspect this is what I have had all along but because I seemed to have a mixed bag of lymphoma (grey zone) it presents as other much like the Hodgkin’s I had. Friggin hell.

My doctor looked at me and said “I want you to make me a promise”….. Fine I’ll behave down there. “Nooooo you’ve never behaved here don’t start now,” I laughed. “I just, I need you to get through this, I need you to be okay and give this all you’ve got.” My eyes started to well up. My doctor felt as defeated as I did, he hated his job today and with good reason. I will I said, I don’t know how but I will. He put his head in the desk and said “Erin there are just soooo many douchebags in this world and then there is you sitting here I front if me”….. Is it possible for me to love this man anymore? I smiled hugged him and we walked opposite ways down the hallway.

I would be doing everything at Princess Margaret from now on, as the treatment I needed could no longer be offered where I lived.

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