The fear

Living with 'the fear' is one of the hardest things when you deal with cancer. You take nothing for granted any longer and you realize how carefree life used to be. The 'what if' pops up regularly, but you try to avoid going there when you can. Because at some point you have to take back control of what once possessed you and your entire world.

I think every person has these alarm bells, but after having to deal with cancer let me tell you they start to ring a lot louder. We can never be sure if the fear is grounded, but it's real and happening. Just as we were landing back on our feet we get hit by the fear. It consumes you. It's like a bad deja vu. A serious mindfuck.

When I started to have breast pains in my other breast this week I thought the cancer might have come back. The scenarios in my head were endless and the fear was creeping in. I think it was for the first time in three years I seriously thought something could be wrong...

I visited my home doctor the same day and she reassured me it was probably nothing. She felt no lumps and everything seemed normal. Just to be sure she made me an appointment at the Mammacare poli at my hospital. What do you mean deja vu?! So the next day I saw a nurse, a doctor and a radiologist (which sounds like a bad joke). They made an echo (because I had my mammogram like three months ago) and told me I was fine. I learned a little more about breast pains and such but I'm especially very very thankful for the way they handled things. They took my complaints very seriously and they were very sweet and gentle. I have to come back in like 6 weeks for another check-up and I think this puts me at ease. I can breathe now.

For me this was a serious reminder though. How scary and lonely this disease is. How fragile our lives are. We really need to slow down and go with the flow.. really see things and breathe. Enjoy and be thankful for the tiny treasures. Sometimes things don't work out, or you're having a rough day.. that's okay because you can try again tomorrow.

Love & light.

Beast of burden

I'm exhausted. I spent the afternoon at the hospital yesterday. Today I had to see my radiologist. In other words; another trip to my favourite place in the whole wide world.

These appointments are still hard for me. They make me feel so sad. You think you would get used to it, but really you don't. Because #1 they are confronting you with your disease. And #2 there's always something new around the corner.

I spoke with a nurse about Osteoporosis because it runs in my family. My test results from the Dexa scan weren't that upsetting but it's very likely I will develop Osteoporosis later on in life (a lot of people do). So in order for them to make a plan and keep monitoring me I had to do more blood tests. Best of all, I get to do a 24 hour urine test. Really. I have to collect all of my pee for 24 hours. Sigh. Really makes you wonder where it will end?

All these appointments and tests are such a heavy burden. It's so hard to forget and just continue your day. I can't do that. Which brings me to my psych. I talked to her again and time fly by this time. Which is a good sign I suppose. I can also officially say, I think she's a good match for me now. She understands me. My character. She gets it. 

I don't know if I mentioned this, but I currently use Lorazepam for my anxiety and she wants me to talk to a psychiatrist about different options of medications. I have very mixed feelings about using an anti-depressant but then again... if it could make my life just a little easier right now. It seems worth checking into. 

We talked about being in the now. Which is very important for me because I'm struggling so much with the Herceptin and everything else (all the bears). We also talked (I cried like a baby) about chemo. I told her about my photography and how I feel it got me through chemo. She was very curious so I gave her my card and she said she would take a look at my work. I hope we get to talk about it next time. 

She told me that photography got me through rough times. The hardest part is over. I have to find my strength back. Things that inspire me, that give me back my drive. Things that make you forget the C-word for a while. Block those thoughts (and no there's no button). I have to start the count down on the Herceptin. I have to promise myself fun stuff, I need things to look forward to. So I will be able to finish this chapter of my treatment as well.

I try

Did you know there is a direct relationship between the lack of estrogen after menopause and the development of osteoporosis? After menopause, bone resorption (breakdown) outpaces the building of new bone.

Although the results of my Dexa scan and blood works were okay. My onc gave me a call and told me he wants me to see a Osteoporosis nurse anyway. I think he wants me to be on Calcium and vitamin D supplements or something like that. He told me it's because I still have such a long road to go with the Tamoxifen and all. So it's all a precaution.

But for me it's another appointment at the hospital. Medications I have to take related to my cancer. I fucking hate it. I'm so tired. I have 4 hospital appointments scheduled in September, one at work... and this Friday it's Herceptin nummero 10/17.

Waking up in the morning is the worst. I have never been a morning person... but there are times I don't know how I'm going to cope with everything. I try. Man I try. To be positive. The stuff I tell myself... but it just doesn't always work. You're just happy to make it through another day. 

I still get so sad sometimes. About everything. But also about the lack of understanding from other people, especially when they're close to you. Words that can hurt so much. I tell myself they haven't walked in my shoes, so they don't know. They can't possibly know.

I did visit work again, which was good. It still feels weird and uncomfortable being there. But it's important for me as well. To interact with my colleagues. I get so overwhelmed though, when I'm in a room and all of a sudden six people show up and they all want to know how I'm feeling.

Of course there's lots of comments about the hair. There are days I love my hair, I love every single hair on my head. But when I look in the mirror I'm also reminded of the story and the pain behind it.

Another ER visit

My last post was published at 7:28 p.m. (Central European Time) and one hour later I found myself once again in the ER.

Seriously. After my appointment with my oncologist I had enough excitement for a day... but no I spent 4 entire hours at the ER before being dismissed.

I had noticed this burning feeling while peeing the last couple of days but didn't give it much thought. Even my oncologist mentioned it that morning, it's just one of the many side effects of chemo. Completely normal!

Then when I took a shower early in the evening I all of a sudden felt the need to urinate even right after I emptied my bladder (no not in the shower). The pressure and cramping became worse and worse so I called the Oncology department and they told me to come right away and bring a pyjama just in case I had to stay.

Then the torture started. I am absolutely not afraid of needles but I really felt like a pin cushion this time. The first blood tests were incorrect so they needed more blood. My veins didn't agree and well I'm poked all over. They even tried my finger and it took forever to fill a tube.

Then I had to pee in a pot. Three times! Three freakin' times! But I delivered!

Finally after all the test results came back and it was determined I had a bladder infection I got antibiotics in my IV. When the doctor told me I could go home I did a little happy dance and a big cheer. Still have to take crap tasting antibiotics for 7 days though. Ugh.

Hospital horror

Two weeks ago I had my first Taxol/Herceptin treatment. It already seems so long ago because a lot has happened. But this is the story. Uncensored.

I was incredibly nervous. By nervous I mean having to puke in the hospital's parking garage. By nervous I mean having to puke in the car six hours later. It was the first time I had to stay that long and I hated every single bit of it. The smell of chemo department is just... obnoxious. It's just so disgusting, even now.. when I think about it I feel sick to my stomach.

The first few days I was very tired. I slept a lot. Then I started to have the famous flu-like side effects. By the time it was Wednesday I had a very sore throat, nose bleeds and muscle pain. On Friday it got so bad I could barely swallow and I also had a fever. We called my doctor who dropped by that afternoon and told me to go to the ER for some blood tests.

I was under the assumption I would leave there with some antibiotics but was told right away I would be admitted to the hospital because of my fever. They also did a picture of my lungs. When the blood tests came back it was obvious my white blood cells were way too low and I had a throat infection. I was given antibiotics through an IV right away.

When starting chemo you know it isn't going to be easy. You know you're going to get sick. But at least you're home. In your own bed. I'm not much of a hospital person. I already knew this. But it was very hard for me to accept that I had to stay there. So I cried my eyes out. I felt so out of control.

The first two days I had the room all to myself - thank god. On Monday I got a roomie who barely spoke any Dutch. I'm all for privacy in hospitals. And big screen TV's. I really had a hard time trying to keep calm but as days passed I more and more started to adapt to the situation. Being admitted to the hospital once was my worst nightmare when this whole breast cancer story started. So all and all considering I didn't do so bad.

The not knowing part drives me crazy though. Not knowing when you get to go home. Not knowing when you're having lunch, when it's pill taking time, when the doctor will see you... you have to depend on so many other people it's frustrating! A couple of the nurses were really sweet for me though. One even brought me ice cream for my throat.    

At first they told me I would probably get antibiotics for like two days through an IV and then I would change to pills. However, eventually they kept me on the IV for 6 days. At some point my veins got all blue and hard and they had to give me another one. I had to do a blood test every other day. I still feel and look like a pincushion!

After a few days I my throat started to feel better and my fever went down as well. I got to enjoy the lovely hospital food. Insert sarcasm here. 

After six days, on my mother's birthday (Valentines day) I finally got to go home. I still have to take antibiotics for three more days. But I'm home. At last. Reunited with my furry bunnies.

The fact I have three more of these treatments scheduled make me feel very nervous. My oncologist will give me a call Monday or Tuesday and I definitely have a some questions for him and will tell him about my worries. For now I'm hoping to rest and gain back some of my strength because believe it or not, treatment is scheduled next Friday. Time flies... when you're busy being sick.

The one after surgery

While things still seemed a bit unreal the last couple of weeks, I can now no longer deny the truth. Just one look in the mirror and the scars will be there forever.

However there is positive news to tell! The sentinel lymph node did not contain cancer.

I had to be at the hospital at 7.15 a.m. and then they showed me to my private room. Perfect for this diva. I was being prepared for surgery right away. Not a lot of waiting in between so that was good. At 8 a.m. they took me downstairs. They kept asking me all sorts of questions and started to repeat them over and over again such as my name and my date of birth. I even had to draw a cross with permanent marker on my breast. A very nice lady gave me an IV. I got to talk to the surgeon and also met the rest of the team. Then I was taken to the OR. Again a big list with questions and they even asked me if I could describe the surgical procedure. Really had a small E.R. moment there. At 8.20 a.m. they started surgery and my mother received a phone call at 9.30 a.m. that everything went fine!

I woke up about an hour later and was told immediately that they removed the tumor and that the sentintel lymph node did not contain cancer. Such a relieve!

A couple of hours later I was already eating soup and even took a short walk through the hallway. Yes I was quite the diva, wearing my pink night shirt that my colleagues made for me. It had a print of my bunnies on it. To complete the outfit I wore my Hello Kitty bathrobe and my pink Birkenstocks. My parents gave me a pink cuddly bunny so my private room turned into a pink one very quickly as well.

On a less happier note, spending the night at a hospital really sucks! The pain started to kick in and I only slept for like two hours. Everything seems so much worse at night. I am now staying at my parents place together with the bunnies. Yay for painkillers and a home sweet home.

I got to take a shower 48 hours after surgery and removed the bandages. I have two wounds and the smallest one, underneath my armpit hurts the most. My breast is quite a work of art. The permanent marker is still on there and the rest looks really blue/green/black/yellow. I was very nervous about removing the bandages but in the end it didn't upset me as much as I thought it would. Obviously it needs time to heal. It's just a scar and it's a part of me now. 

I have another appointment next week with the surgeon for the definitive results.

The sentinel lymph node

Today I had to go to the hospital for the sentinel lymph node thing. A low-activity radioactive substance wass injected near the tumor. After a gentle massage (had to rub my breast in public) I had to wait for two hours. Then they took photos and marked my sentinel lymph node. A lovely blue cross is now covering my armpit. 

Tomorrow about 15 minutes before my operation the physician injects a blue dye in the same manner. One or several nodes may take up the dye and these nodes are designated the sentinel lymph nodes. The surgeon then removes these first lymph nodes and sends them to a pathologist for rapid examination under a microscope to look for the presence of cancer.

This is probably what I'm most nervous about. The concept of sentinel lymph node surgery is to determine if the cancer has spread to the very first draining lymph node or not. If the sentinel lymph node does not contain cancer, then there is a high likelihood that the cancer has not spread any further. But I try not think about it too much, it would not really change my path after all. Because I will still have to do the radiation, chemo and hormone blocking therapy.

I have to be at the hospital very early in the morning (as in you have to get up in the middle of the night). I'm not much of a morning person but this is quite a relieve actually. Better get it over with.

As Arnie always put it, "I'll be back!"