ch-ch-ch-changes … last chemo tomorrow!

I haven’t posted a blog on how I’m travelling for a long time. I guess I get a little tired of everything being about treatment, and cancer. My whole life just feels consumed by it. Everything feels so rushed.

So … tomorrow is my LAST CHEMO DOSE! Funny, everyone thinks I must be feeling excited and celebratory. No. I’m dreading it. Last time, they took 1 1/2 hours just to get the needle into the portacath in my chest/shoulder. By the end I was in woosie tears 🙂 And apart from that is the knowledge that I have the next three weeks getting over the revolting side effects, which get worse each time as a lot of them are cumulative. Three weeks later there are STILL signs of bruising where the portacath is implanted (under my skin). As soon as possible, I’m having the thing surgically removed again.

So why I am up so early when I should be sleeping? It’s always this way with the new drug (meaning for the first three cyclesI had three different drugs, for the last three one different drug). Steroids. Dexamethosone (or something). Called Decadron in the US. For the first three cycles, I had it as an anti-emetic, a HUGE dose in an iv bag. Along with two other strong anti-emetic drugs. They worked, no vomiting and hardly any nausea. Just all of the other revolting stuff. Then I have two days of tablets form of dex afterwards to help. I glow–lobster red and that is NOT an exaggeration. My face and chest burn. I hot flush. I don’t sleep. It has it’s advantages, I get a bloody lot done on it lol. But after those two days after chemo I totally collapse when the dex wears off.

Now, with this other drug, I have to have the dex BEFORE chemo starts, but not as an anti-emetic but to guard against allergic reactions. And they don’t give you any other anti-emetics. So I’ve found that the OTHER anti-emetics must have been essential to stopping the nausea from the dex (how’s that for freaking irony).

I now have a very fine fuzz growing back on my scalp. It’s nice and soft. My eyebrows and eyelashes aren’t fairing so well and I still have a silky smooth Brazilian lol!! Today, Liam counted my eyelashes. He says I have a total of 10, and that’s including both eyes *sigh*.

I have stopped menstruating. I have awful hot flushes, and oh the other ‘hormonal’ troubles that get joked about. I seem to have a permanent case of PMT. They can’t tell me whether I am actually in early menopause now (forced) or not. It remains to be seen whether ‘they’ come back six months down the track or something. Whatever — my ability to have any more children is PROBABLY nil. The sadness of that is incredible.

Once my three weeks of this cycle are over, I then start six weeks of daily radiotherapy (which Liam calls tv-therapy lol!). With breaks on the weekends. I will miss my little boy dreadfully but he seems FINE with spending the time with his Nanna Kay. My mother will be coming with me. So starts yet another different thing to deal with. Along with 5 years of hormone therapy tablets.

Really, apart from a couple of trips to hospital requiring stays of a few days, due to my immune system being in a bit of trouble, I’ve handled it relatively well. Chemo wasn’t the huge monster I thought it would be. It is doable, but I’d rather not (GOD I PRAY) that I don’t have to do it again. Ever.

Did you know, the only people who lose their hair with chemo are people with breast cancer, leukemia (sp), and lung cancer? There’s a bit of trivia.

So that’s the physical stuff.

Psychologically, it’s been tough. All of those things I was so positive about doing at the start–not been happening. The Black Dog has revisited in a big big way, and I’ve been having a hard time with depression. I’ve only just started having ‘therapy’ with a woman who has THE most incredible insight, gets me totally in a way that few RARELY do, in fact I don’t know anyone ever has, and only in two sessions. She is quick, we click, and she wants to use Mindfulness as therapy–which is JUST what I wanted.

Already with that, I have been dealing a lot better. I still have my bab moments, very bad moments. My self-esteem is totally shot. I look at my hair in this profile pic and, well, can’t HELP feeling melancholy over it. Most of my angst is totally over Liam. The other night I collapsed in a BIG way because I had a sudden wish that I could go right back to his birth. Cherish every single moment from then on, do it differently. Of course I can’t, I can only try and do the best with what I can now. I push and pull my loved ones way from me (huge attachment issues–fear of abandonment and rejection). I’m trying, trying to live in the present instead of wishing over the past and projecting fear into the future.

One thing I have to stop insisting on is that I believe that my love/sex life is over.That no-one will ever be attracted to me again or want a relationship with me at all. I don’t want to spend the rest of my life alone. I am becoming sure I will end up a crusty, sad, bitter spinster. If I live that long. We all want to love and be loved. We none of us want to be alone forever, with no-one to share our lives with. That’s a huge thing to overcome. Because what we think we create. Everything in creation was thought first. Our minds really are that powerful. Laws of attraction and all of that (and I REALLY feel a need to do a blog about the bodginess of “The Secret”–opportunistic materialistic crap).

Anyway so that’s where I’m at. Battling demons, feeling anxious at yet ANOTHER ‘new and not so pleasant thing’ though radiotherapy will be a snatch after chemo. Hopefully the most I can expect is more fatigue (but hey I’m VERY used to that now, and a ‘sunburned’ boob’. Sunburned SHRINKING boob. *feels like chucking a tantrum*. I’m travelling. I’m learning. I’m trying to become a better person through it-reading lots of inspirational books and the like. What else is there to do?

This year has gone so FAST. Another 6 weeks and it will be “huh? what now? what do I do now?” Relax. Recoup. Convalesce. Whatever.

So… *sigh* I have to stop procrastinating over sleep 🙂

Thank you to those of you who have been SO supportive and loving and caring this year. You have no idea how I appreciate it.

A long overdue update

Well, here I am nearly into my third week of my second chemo cycle, and I have to say I think I am handling chemo extraordinarily well (touch wood, cross my heart, etc etc).

I’m having six cycles, three weeks apart. For the first three treatments I am having FEC (which are initials for different drugs, so I am having three different chemo drugs). Then for the following three treatments I have D. Whatever that is. Just another drug to get used to. After that, I pretty much immediately go south for four weeks of radiotherapy (three weeks plus a booster week). I had the option of having it in four or six weeks, with the same amount of treatment. Being that I have to stay down south while I’m having it done my radiation oncologist suggested I have the six week treatment squashed into the four weeks. More uncomfortable, but less time. After THAT, I go onto some form of hormone treatment. Probably tamoxifen, but it hasn’t been talked about yet.

So. Chemo. It hasn’t been the awful big scary monster that was looming over me in my brain. I’ve had absolutely no nausea (except for a tiny bit here and there) and no vomiting. The feed you three mega strong anti nausea drugs (one of which is a steroid)  while you are sitting there having chemo, and you continue them over the next two days. Takes care of it all. The first treatment made me glow bright red like a lobster for a week, and I felt as hot as I looked. I also had hot flushes. Fair dinkum hot flushes. (This chemo forces you into early menopause and infertility.) Lots of other really unpleasant side effects which I won’t go into, about the digestive system and reproductive system.  I was burping like a redneck the entire time, which was really embarrassing, with awful heartburn and reflux, but again … some prescription drugs have taken care of that. You get side effects from chemo, they give you drugs to take care of the side effects, which gives you more side effects … I’m scared for my poor liver!

However, the fatigue is the killer. It’s impossible to explain the extent of it to someone who hasn’t been through it. You tell someone, and they say back to you “yes, I’ve been tired lately too”. Nooooo idea. Getting up to have breakfast is too much for the body. You eat, then have to go straight back to bed again, out of pure exhaustion. Having a shower makes you shake hard … it’s like running a  full marathon. I’m not kidding here. I’m out for the count for the first two weeks of each cycle. The third week I feel quite a bit better, though still get tired VERY easily.

This second round of chemo has been so much easier. Basically all I’ve had to deal with (besides my bowels not being able to decide whether they are constipated or, um, a storm water drain), is the fatigue, which was even worse this time around. What were disgusting side effects the first time around settled into minor side effects. Still get the hot flushes and the night sweats, I lose my appetite the first week, but it’s all okay. Oh except that my mouth is starting to break down. My tongue and mouth feels burned most of the time. Lots of brushing and bicarb soda mouth washes helps. And I’ve got a great big box of lemonade iceblocks for the next cycle *nice to have a reason*.

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Behind the darkest, heaviest clouds …

… the sun still shines.

Originally posted as a bulletin on myspace by a friend … and I just had to share it. And as I read it, I realised … I’m doing okay. In the last year I have … lost my job. Left a very long term relationship. Not enough money ever as I am unemployed. I’m not failing exams, but I think I’m going to have to defer study anyway. And NOW I have cancer. But it’s okay! I’m not ‘awfulizing’ I am rationalising. I’ve never asked ‘why me?’ because there is no reason. My job is to do what I can to deal with what I’ve been given, and in a way that will make me grow. A way to get back to a more authentic, healthy [physically and otherwise] spiritual way of living. Yeah … I’m okay … though tomorrow might be a different story as I’m off the three hugely strong anti-nausea drugs and just on maxalon. Tomorrow it might be … “To spew or not to spew? That is the question.” So tomorrow, my attitude might not be so great, and I realise as I get into the guts of treatment after the three surgeries, my attitude WILL be severely challenged.

But take heart … everyone … for whatever troubles you have.

Behind the darkest, heaviest clouds the sun still shines…

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It’s the little things that count

Like not pulling down the little sun visor thingy in my car this afternoon, even though the sun was very glaring, because it felt like a warm caress on my skin. Like giving up on waiting for the rain to stop to make the hike from the hospital to where I parked my car and getting rained on in the process, which felt delicious. So simple. So lovely … things we usually avoid. And other little things … a small loving text message. Just the thought of a man I love, which can warm me immeasurably. Bliss.

I spent nearly all day at the hospital today but for all good reasons for a change. This morning I attended a Look Good … Feel Better workshop. A workshop run for women with cancer focusing on skin care, makeup and hair(loss); run by volunteers. And the freebies are fantastic! Every bit of makeup you could need (well, nearly … no concealer unfortunately) donated by brands like Chanel, Elizabeth Arden, Christian Dior etc. And cosmetics. However, I believe the great value in these workshops is not the makeup lesson, freebies, or playing with hats and wigs. What was really important was coming into contact with other women living with cancer. I expected most of them to have breast cancer but I was wrong. There were ‘all sorts’ there.

All of the women there, bar Natalie, myself and another girl, were older. Nevertheless it was still great to meet the older ones as well. The woman to the right of me ended up being the mother of my gym trainer, who I’d heard about and she in turn had heard about me, so it was great to meet and she wants me to come visit her. But I think a made a really ‘important’ contact with the other younger woman. She is only 33 and her story is nearly identical to mine (cancer-wise anyway). She is a vegetarian, was a yoga teacher on a tourist island … just goes to show that it hits the ultra healthy people as well. She has come back home to her parents to live while she is having treatment, is single, has no children (at least I have Liam), is having nearly the identical treatment to me. She seemed very excited to talk to me, as she hasn’t spoken to another ‘young’ woman with cancer during her entire ‘journey’ so far. So we have exchanged phone numbers and though we live 45 minutes away from each other, and have treatment schedules that aren’t going to help, she is someone I think I will develop quite a supportive friendship with.

Chemo tomorrow. Valium tonight. And tomorrow morning. Though I do feel better about it after speaking to the oncology nurse in the chemo room today. My neck and chest feel a bit uncomfortable, where I had the porta cath inserted. The area around the porta cath itself (just under my tattoo grrr) is still quite swollen, but it’s my neck I can’t stand. You can clearly see a bump in my neck, where the tube is, and it FEELS gross. Well it is a foreign object in there that will take a while to get used to I suppose. Chewing and talking, and moving, you can really feel it. And the wounds themselves are still quite tender.

I thought I would take a book and my mp3 player in with me tomorrow, but today I was told “we have dvds here and a dvd player, and you can bring your own dvds if you prefer”. Bingo! I will take Dr Strangelove and subject everyone to that. Have to love that!

To spew or not to spew … that will be tomorrow’s question.

Amor

I have something lovely to share 🙂
Recently, while watching an arts program on tv, I ‘discovered’ an artist that intrigues me. And, unusually, he is a contemporary artist, and an Australian at that. Rick Amor is about 60 years old and lives in Melbourne, I believe.

I was drawn in by the first images I saw. He was doing a series of paintings that were based on a recurring dream, about being on the end of a very long pier in the middle of a sea storm and it disintegrating. The paintings were moody, disquieting and just my thing…

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Facing mortality – life is forever an unknown from this point forward

Just popping in to update you all. I’m sorry I’m unable to reply to messages/emails/comments etc right now, I’m just not up to it.

I had surgery on Wednesday. It was meant to be day surgery only, but the ended up keeping me in overnight. I’m in more pain again of course, which is starting to make me angry because I’m sick of this pain/over sensitivity/itchiness/limited movement. The only reason they kept me overnight was because they left a drain in – nothing serious. To look at my breast makes me sad. It is hideously scarred, and there is a substantial bit missing. Now, apparently, the cavity where the tumour was taken out, and the cavity in the armpit from having the lymph nodes take out, are one huge cavity. Not that you can see it or feel it like that. But that’s a substantial part gone.

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post-op update – more surgery

Just popping in for a quick update. I’m not able to spend a lot of time on the computer at my parents’ and it hurts too much anyway, at this stage.

Yes, I’m still staying at my parents’ house. I thought I would be home next week but it is not to be. I saw my surgeon this afternoon for my post-op visit and it wasn’t good news. Apparently the tumour was 3.5 cm not 2.5 cm, and he took out a good lot around it, but there wasn’t enough of a clear margin at the back of it, only 1.5mm, and he took it down nearly to the chest wall. So now, I have to go back into hospital next week to have more taken out. This time he will go down to the muscle in the chest wall and take the membrane off that. Depending on the results of that, I may have to go back a third time for a mastectomy, but at this stage he is still trying to save my breast.

In addition to the tumour, they also found cancer ’in situ’ in the surrounding milk ducts, where the majority of tumours start. And the cancer in one of the lymph nodes they took out. The tumour tested weakly positive for being receptive (ie fed) by oestrogen and progesteron (sp), but not enough to warrant hormone treatment. And I still don’t know whether it is HER2+. Whatever that means.

So … surgery next week. The week after that I have an appointment with a medical oncologist for chemotherapy, and a couple of weeks after that I go down to a city south of here for a visit with my radiation oncologist.

I’m still in a lot of pain. Not from my breast scar (which is a good 4 inches long) but the surgery under my arm/armpit (where I have a good 5 inch scar). I thankfully no longer have the feeling of a have a cattle prod constantly being shot in my armpit. But my upper arm and side on the right side feel very very weird. Numb, yet very sensitive and painful. Like I have been grazed the entire way.

I have been having some surreal dreams, which are very telling. All about being lost and alone and unable to reach out for help or any way to help myself, about being in the land of the dying and very very ill. Even during the last dream I thought “this would make a fantastic surrealist painting”. There’s also been a slight psychic element to an occasional dream … communicating through dream.

I spent last night at ’Nanna Kay’s’ (Liam’s grandmother on his father’s side). It’s good we still have a good relationship, because I was able to sleep there the night. Liam kept saying, all night and this morning before school “isn’t this fantastic (wonderful/fun/great) that we are together?” And it was the best feeling in the world. Especially having him crawl into my bed when he woke up this morning. It’s a shame my parents don’t have the space (or patience) to have him stay here with me. I will sleep there again tomorrow night and have dinner with them and my ex. Then next week is school holidays and Kay is taking Liam down for a week’s trip to Sydney which he will love … trains, ferries, etc. I’m having surgery anyway so it ends up being easier.

It’s needless to say I’m very very frightened now. That’s a given. And I’m particularly frightened for my son. THAT is where the fear and sorrow come in. For his sake.

Between diagnosis and prognosis – breast cancer hell

“When you’re in the midst of the diagnosis and staging process, and the tumor information is coming back in bits and pieces, at many different times, it is an extremely stressful time in your life.

Uncertainty really stinks! But you will feel SO much better once you know what you’re dealing with, when your treatment plan has been worked out, and you start your treatment. Only then does much of that dreadful uncertainty lift, and you finally feel that you are doing something to get rid of the problem.” —Marisa Weiss MD



Well that’s good news. ’Extremely stressful’ is an understatement.

So far, all I know about the cancer is that that it IS cancer and that it is 2.5mm big.

My liver ultrasound and chest x-ray both came back looking clean (except for gallstones—oh JOY now there is something else to look forward too lol!). Finally a happy surgeon visit.

It’s been an entire month since I first saw my GP about the lump in my breast. A month. People keep asking me ’How did you find it?’ I can only stare at them blankly and say ’Well, you can’t miss it. It’s this big [show them with finger gestures] and it’s right there [point at breast]’.

A month. A month of waiting. Waiting in doctors offices, waiting at the imaging place, waiting at the hospital today, waiting for results. Waaaaiiiiting.

I finally have surgery on Tuesday afternoon. I have to wait until Monday to find out what time they want me in there on Tuesday. I stay until probably the weekend, well as soon as they take the drains out of my armpit and breast. And then I wait until the middle of the following week (at the earliest) to hear the results of the operation. How invasive it is, how aggressive and fast is it, is it ductal or lobular, has it reached the lymph nodes. And will I need a mastectomy? On Tuesday my surgeon is giving me breast conserving surgery (meaning lump plus margin plus axillary lymph node removal). If things don’t come back as nicely as we like, I go back in to have my breast removed.

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Oof, where did that come from?

I am an ex-welfare worker, and know all about the stages of grief etc but today was … strange.

I woke up (at 4am after 2 hours sleep) feeling much better than yesterday, emotionally at least. I was calm, I was peaceful. I picked my mother up at 8.20 to go to the imaging place to have a chest xray and liver ultrasound done (to check for secondaries). My appointment was for 8.45. When I arrived there was only one woman before me, and nobody else in the place. 9am came and neither of us had been seen. People started flooding in and going in for their xrays!! After ½ an hour I was highly irritated and was about to stand up and say ’excuse me?!’ when I finally got called in. Had my ultrasound, came out to have to now wait for my chest xray, having to go back to the back of the queue. I was pretty pissy by the time I got out of there.

Driving from there to the gym I got pissier at all the stupid drivers around me. At the gym I was pissed off because someone else was behind the curtain part of the change room – getting changed – which was cool because I just quickly got changed right there in the change room. But … she had left some of her shit on the only chair in the main part of the changeroom so I couldn’t sit down to put my shoes on. Getting pretty agro by now.

Had a long talk with the manager of the place as it was my day to be measured and weighed etc, and she wanted to know what the latest was with my situation. Her mother is going through the same thing. I told her I would have to stop gym fees coming out of my account because it was probably going to be at least 12 months before I could even think of coming back. I told her that really pissed me off because I was getting so fit and healthy and now I had to give it up.

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How I REALLY feel

Exhausted. In one word. Emotionally and mentally wiped out entirely, which then translates into physical fatigue. Although this is most likely going to be nothing compared to when I start radiation and chemo. I’ve barely been sleeping … the mind clicks away a mile a minute. When I do fall asleep I’m awake again soon after. It’s like my astral body does not want to leave. Like it wants to stay in the physical and etheric bodies as much as it can. Why I wonder. Is sleep too scary? All I want to DO is sleep. Sleep my life away right now, sleep forever. (And NO, before anyone takes that the wrong way, I don’t mean I want to die!!) Sleep is oblivion. Oblivion is bliss (and avoidance). And I’m just flat out, bloody exhausted.

I’m so exhausted I can barely move a muscle, even to type, but type I must to journal this out.

Everyone has exclaimed at how brave and strong I’ve been. I wonder do all people with cancer get this comment when people first find out? Yes, I have been calm, and peaceful, and happy even. Cracking jokes about it (which my sisters thought funny but my parents weren’t amused at yesterday’s Easter Sunday get-together lol!). This twilight time between diagnosis and prognosis. This interminable waiting. I just want it out. It’s there, the tumour, hurting, physically hurting and aching 24/7 (that scares me).

But it’s starting to get dark. I’ve crawled up to the edge of the abyss a few times, peered over, and scrambled back in a hurry when I’ve caught glimpses of the horror that lies in it.

“I have breast cancer” is now a fact that is lodged in my brain and I can’t forget it, not for a minute. Waking up sucks. That moment when you remember ’oh, that’s right, I have breast cancer. Fuck.’

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