Tuesday, October 30, 2007

Miracles DO happen!

When last where you in the first row watching a miracle happen? Let me help you out: right about now! If you've been following my posts the past few months, seeing an Infertility blog changing into one about breast cancer, you'd know exactly what I'm talking about.

We received my mom's test results from 2 weeks ago this afternoon. Her appointment was at 2 pm, and we all would've met afterwards at Linda's house where her youngest, De Wet, had his 6th birthday party today. I had to be back at school by 5 pm for the Annual General Meeting (yuck!) and by the time I had to be on my way, there still wasn't any sign of my parents. Their cell phones where switched off, and my frustration was mounting.

About 5:30pm, I sms'ed my sisters for the umpteenth time for news about my mom, and she phoned me herself almost immediately. I got up and walked out of the meeting (was sitting right at the back so I hopefully didn't disturb too many people) and got the best news ever.

The latest test showed that the cancer that was removed from her lung in February originated from ovarian cancer and did NOT metastasize from her breast cancer of 10 years ago. The newest cancer that spread to her stomach lining and backbone is also from the ovarian cancer.

So how on earth can I possibly say it's the best news ever? Metastasized breast cancer is not curable, and you won't go into remission like the first time around. Chemotherapy, radiation etc. will only lengthen the patient's life, and later on palliative care would enhance her quality of life. The ovarian cancer is a new cancer which means it can be cured, she CAN go into remission again: my mom isn't dying, she is going to get better!!

When my mom told me the wonderful news, I burst into tears. The dam wall broke at last. I have a terrible headache since the tears dried up, and there are still a whole lot of them needing to come out, but the worst is over.

I'm still trying to get my mind around everything, and I struggle really hard to not think of the fact that things could still get worse even though it's a different and new cancer. I want to believe that she'll get better, not sicker, even though it's stage IV already.

I choose to be positive and hopeful, and to rejoice in this miracle from God - He is truly awesome!

Monday, October 29, 2007

Decisions, decisions!

Decisions galore, but I've made up my mind. ("Good grief, at last!" she heard them sigh relieved.)

Last Tuesday the bunch of information regarding prophylactic treatments threatened to drown me. Before "maybe" became definitely, I played with all kinds of scenarios, but when I had to choose for real, things changed a lot.

I seriously considered each and every one of the treatments below. Not just how it would feel, the financial implications etc, but there was a time during the past week where I had my mind set on every single one of them.

These are my prophylactic options considering the BRCA2 mutation:
  1. Bilateral mastectomy, oophorectomy and hysterectomy. No need to tell you about the traumatic implications on my emotions as well as my bank balance. If I do all of these surgeries at once, it will only reduce my chances of getting breast or ovarian cancer by 90%. Yup, even if you go through all of this, you can still get the same cancer in the regions around the amputated/removed organs.
  2. Just the bilateral mastectomy. Uhm, no thanks. Period. Read more about reconstructive breast surgery HERE, if you dare!
  3. Oophorectomy and hysterectomy. Doc Greta (the oncologist/gynecologist at the familial breast cancer clinic) said it would be better not just doing one or the other, like 2 for the price of one. This option also scares the living daylights out of me, because it puts you into menopause overnight. BAM. No thanks, I'll go there as slow as I can!
  4. Tamoxifen. One of the more serious side effects of this medication is an increased risk for endometrial cancer, but since I use the Mirena, it seems the specific risk doesn't play that big a role after all. Another side effect is blood clots and hot flushes. Read more about the rest of the gory details regarding the side effects here if you're interested.
  5. Doing nothing at all, besides going for a MRI scan every 6 months in stead of once a year or less. Doc Greta prefers this kind of scan above the normal mammogram since it can spot cancer much earlier and deeper. (Seeing that it's much less painful for big-breasted woman, this is a big plus for me!) The downside is that it costs about $1000 per scan, and THAT is where the ouch comes in!
I decided on the Tamoxifen route. Normally you take this drug for 5 years, and thereafter you switch to something like Arimidex. (The wealth of information you can look up on Wikipedia is totally awesome!) Fast forward to the menopausal symptoms since I'm not there by a long shot, but I think I'll be able to handle that better than arriving at the post-menopause station overnight.

The big cry still didn't happen, but I feel it coming closer every day. All in all I'm coping and doing well when life goes smoothly. The moment I hit the slightest of speed bumps, my tear ducts open full force for a few seconds, only to close down again before the flood can get it's foot in the door. This can be quite embarrassing you know! The man behind me at the pay station in the mall today must've thought I'm totally crazy when I started crying when the stupid machine didn't want to take my money. At least I can still see the humor in it - may it stay that way!

Thanks SO MUCH for your incredible feedback on my previous post. This is the one place where I can say what I want, cry when I want and still know you won't think I went off my rocker. If my surname was Gates, I'd flew you all over for an incredible spa weekend at a 5 star Safari lodge! And those of you who asked for more information about you-know-who, just sit tight till you forget about him again. *grin* Besides, I don't have a nice nickname for him, and that won't work. :)

Thursday, October 25, 2007

Reality check

Please tell me part of being strong is to know when to acknowledge that you're not always as tough as you thought you were!

Because I really need to do something to get rid of the rising panic inside me.

Have you ever thought of the predicament cancer patients are in? No not the illness, but their coping skills. You SO often hear how strong they are, how absolutely awesome they cope with being so sick - shining examples of survivors, heroes, people to be admired for their sheer strength of fighting the disease. Have you ever thought that these cancer patients aren't really all that strong and positive? That all the sick people before them set such high standards of coping well (even if they were just really good actors) that it is kind of expected of them to be strong and fight with everything they have? That if they just express what they feel that healthy people might think they are losers? Not that they wouldn't want to fight to survive, but do you get my drift?

I'm not even sick, I just have a silly, not-so-perfect gene that might make me sick some day, and my emotions are rising in my throat to the point where I'm nauseous and fighting back the panic. The truth is starting to sink in, and the harder I try to concentrate on the positive things, the harder the pounding in my head.

It really might be my imagination, and no it's not you guys reading here, but the people in my life outside the blogosphere, that seems to expect me to take this in my stride. More especially my close family and the man in my life. Ok, I haven't mentioned him yet on this blog, guilty as charged. We're not planning on getting married in the near future, so children aren't an option at all, and uhm, ok, well, now you know about his existence!

What I'm trying to say is that maybe we're trying to motivate each other, positive thinking and all that jazz, while we're hiding our fears. Maybe not. Maybe everyone else, my sisters included, really are coping. Linda said it's been a reality for her for a few years now, having dealt with cancer 5 years ago. She initiated the genetic testing, so I guess she had more time to think this through. Wilma said she is OK, we haven't spoken much since Tuesday, but she surprised me with her insight and summary of what she felt like, only hours after the results.

My mom has to focus on her health, even though she cried when she heard we all had the mutation. She acknowledged that she felt guilty in a way for passing it on to us, but we quickly assured her that even if we had to choose between having her for a mom WITH the mutation, or another mom without it, we would take her a million times over with it, again and again.

Today I'm finding it really, really hard not to crack up emotionally. This is NOT the end of the world, and it's NOT a death sentence, but I'm SO scared. My mom's suffering and pain the past 9 months has been a serious wake up call. Cancer is BAD. VERY bad. I never EVER want it!!

It's not that I don't pray to God to comfort me, to give me peace of heart and mind. It's just that I'm praying without words because I'm holding myself in check so hard that I'm scared to let go, and maybe that's not enough...

You know, the funny thing is that in a few days or weeks I'll be reading this post again, and by then I'll be stronger and calmer about everything. Right now however, I'm fighting the panic while feeling paralyzed at the same time.

My blog isn't going to be a fun place to visit during the next few weeks, so I won't blame you at all if you choose to skip it, or not to comment. It's really OK, I do understand. I need to get this out, I need to write about everything, even if it's not remotely related to Infertility. That's where I started, this is where I am now...

Wednesday, October 24, 2007

Facts & Feelings

I wanted to wait before I wrote about my feelings concerning the outcome of the test, mainly because I thought I'd be more clear about them. Not so.

This is what I know:
  1. Having the mutation just means I have an much bigger chance of contracting breast and ovarian cancer.
  2. It's just a pre-disposition to cancer, not the Big C itself.
  3. Without the BRCA2 mutation I have a 7% of getting breast cancer somewhere in my lifetime. With it, about 80%.
  4. Without the BRCA2 mutation my chances of getting ovarian cancer is about 1,4%. With it, 50%.
  5. Women who never have had children may be at greater risk for breast and ovarian cancer.
  6. There are numerous prophylactic options available.
  7. I do not have to decide right away what I should do.
This is how I'm supposed to be feeling:
  1. Happy to know about the mutation: now I can be extra careful.
  2. Thinking of knowing about it as something that empowers me.
  3. Concentrating on living here and now, making the most of every day.
I'm worried about:
  1. My medical scheme. It's not going to pay for the MRI the oncologist wants me to get without avail. Nor does it have adequate oncology coverage. An upgrade is needed ASAP.
  2. If I do upgrade, and they ask me any new questions, I'll have to answer truthfully about the mutation, and then they might not allow my upgrade.
  3. I can only upgrade in about a month's time, and it will only start January 2008.
  4. So many more things are going through my mind, but I'm way too scared to write them down.
This is how I actually feel:
  1. Watch this space, the jury is still out on this one.

All in all I'm doing ok. A really good cry is long overdue, but I find all kinds of excuses not to go there. So until I am brave enough to allow my tears to flow, I'll keep super-busy.

You know what amazes me? The strength I find in myself. I knew it was there: Infertility was a hard task master, but where I thought it would only have limited resources, it's like the widow's oil well. So far at least! But that is a whole different post altogether.

We're still waiting for my mom's results. She's doing OK under the circumstances. Positive and upbeat despite the pain and tiredness. Will let you know what happens as soon as we hear anything.

You all are super wonderful - your comments bring tears to my eyes, your love and encouragement makes me feel warm and cared for. I know I've said it a few times already, but you don't cease to amaze me with your non-stop support. Thanks again!

Tuesday, October 23, 2007

It's Official

Seems like the little mutation has been quietly (so far!) sitting there for the past 40-something years. Both my sisters tested positive too.

Well, what do you say when the words are still all jumbled up and running riot in your mind? "Talk to you tomorrow" might be the best option right now.

I'm not as OK as I wanted to be, but at least I know the sun will shine again in about 10 hours' time!

Sunday, October 21, 2007

Pulling an Ostrich on myself

You all know about the phrase to "Bury your head in the sand". Fortunately for their species, ostriches aren't that stupid, but it works for me!

I wouldn't hide my head. Some other body parts of mine most definitely.

Tuesday is looming, and I'm really scared. Confused and emotional. Trying to work, but concentration is not on the menu today.

The day we got confirmation that my mom had the BRCA2 gene mutation, I thought I might go with the oophorectomy but nothing more. Maybe, (can you see how small the maybe is?) a hysterectomy too so I won't have to handle the bleeding side effects of the hormone replacement therapy. Not to mention the fact that that in itself can cause breast and ovarian cancer - between the devil and the deep blue sea it seems!

Well that was then. I discussed it with two really good friends, and both of them said NO to surgery at all. For various reasons, all sounding extremely good and convincing at the time. I was calm and sure: I'll deal with breast cancer if and when it happens to me. Until then I'll do my self-exams, go for an annual mammogram, and change my lifestyle for the better.

Again, that was then. When my mom almost died two weeks ago, everything changed. Even though the doctors don't want to confirm our suspicions (due to professional ethics I presume?) we are almost certain the pleural effusion was caused by her chemotherapy (taxotere). She suffered from extremely painful rashes on her hands, her nails (hands and toes) was equally painful and started falling off a few weeks ago. Not to mention her shortness of breath and utter exhaustion.

Yes she is very sick, and yes chemo is everything but a walk in the park. But seeing her suffer so much, has changed my mind yet again. Right now I would cut off and out everything that could remotely increase my chances of getting breast cancer. IF I have that damned gene mutation.

I can see it for the emotional reaction it is. But I also understand for the first time why women would gladly get rid of their breasts, uterus and ovaries to be safe from cancer. Despite the trauma the surgery undoubtedly cause. Not to mention the financial implications and the physical pain. The loss of all the body parts that makes them female. (Being infertile I've been through the argument that your femininity doesn't lie in your body parts or ability to procreate a million times - this post is not about that)

Lately my body feels more like an enemy than anything else. My ovaries, uterus and I have made friends even though I felt they let me down years ago when I needed them, but now I'd rather not think of them. It's not all that difficult. The Mirena helps me to forget that they're there.

My breasts are a whole different problem though. God has blessed me with a little bit more (uhm too much if you asked me!) than I wanted in that region. But with age came acceptance, and I actually started to like them. They are full of flaws but they are mine, and even though I never wear anything in public that would announce my cleavage to the world, I secretly adored that part of me.

It's October, and it's breast cancer awareness month, and just about everywhere I look the message shouts out: "Look at your breasts, touch them, feel for lumps, look for changes, go for a mammogram etc etc etc."
(While we're on the October month subject - when last did you have a mammogram? Make an appointment TODAY. And don't do as I do, do as I say!) But I don't want to touch my breasts. I don't want to see them either. I want to ignore them, and maybe, just maybe they will go away quietly.

Forget it. They are in my face. Not literally, thank goodness no, but it's as if they have a life of their own lately. Asking for attention. I'm sure they expand on purpose just so I'd brush against them whenever I move my arms. So I'd be reminded they're still there. And then they get smaller again just to make me worried that something is really wrong. They take turns you see. One day Lefty itches, the next day Righty. Innocent itches don't worry, just like my nose or some other body part. I covered them in body lotion, quickly, so I could put them back underneath my clothes and try to hide from them again.

On Friday they started a new game. A nasty one. Sharp pain shooting through them. Like a thunderbolt (no not THAT painful!) - quick and gone again. Never in the same place twice. Happened about 8 times. But I'm not stupid. I know it's my mind playing tricks on me. This is absolutely psychosomatic. It's because they are the center of my worries and anguish waiting for the results on Tuesday.

I probably won't go for prophylactic surgery if it turned out I do have the BRCA2 mutation. (That's how I feel this second, but I retain the right to change my mind as often as I want to on this one!) On the one hand because I'm too scared (and maybe because my medical aid won't pay for it) and on the other hand because I really believe that God is the captain of my life's ship. He will take care of me, and give me the strength to handle whatever rough seas He steers me through.

Thursday, October 18, 2007

Holding my breath again!

I'm somewhat at a loss for words at the moment. My mom had an appointment with her new oncologist this afternoon, and I just got off the phone after speaking to my parents.

The oncologist ordered special tests to compare the breast cancer from 10 years ago to the new cancer that was removed from her lung in February this year. He wants to make sure that this new occurrence is breast cancer. According to him, the breast cancer 10 years ago was so small and so insignificant, that it wasn't supposed to recur.

He said that this might be totally unrelated to the breast cancer, that it might be related to ovarian cancer (even though there is no sign of it) and that it might not be cancer after all.

Did you read that? My mom might not have cancer. "Might" is the word we use to express possibility, so lets get this straight: There is a small possibility my mom might not have cancer after all. Can you believe that? God is amazing!

I'm realistic enough to know that the "might" could also go the other way. But you know what else? Doc S (oncologist - the newest angel in the fold) said he wants the results first, but he suspects that there wouldn't be any need for more chemo. If it turns out to be cancer, hormone therapy would be enough. No more chemo, and certainly no radiation.

I'm holding my breath; scared that if I exhale I'd get too excited and forget that we have to wait for the results. But I'm also praying harder than ever. God knows what He is doing, and whatever the results, He is holding us in His hand. Three business days stands between us and the results. Never before have I wished a weekend away, but this time I'd give it up in a second! So Wednesday here we come.

Talking about results. The Familial Cancer Clinic phoned and made an appointment with us for next week Tuesday. They have the results. We will get them on the 23rd. I'll talk more about that tomorrow, maybe Saturday. Seeing that I said I'm going to be blogging less, it looks like I've got more stuff to write about than I thought I'd have! And I'm SO behind on visiting your blogs *blush* - watch out for me over the weekend girlfriends!

I cannot publish this post without thanking you all again. Your caring thoughts, comments and emails feels like a warm, comforting blanket around me - thanks SO much for being there!

Tuesday, October 16, 2007

I met a few angels today...

Yup. Actually more than a few. They were almost everywhere I looked. Dressed like human beings, walking and talking like us. They talked to me too.

No I'm not bonkers, I didn't take any illegal substance, and I didn't fall on my head since I last blogged. God is working miracles in His way - and they are everywhere. Small, medium and the large ones we are still praying for, if it's in His plan for our family. Since last Monday so many things happened.

Let me say firstly: my mom is doing SO much better. She is driving around, visiting friends, and went to a coffee shop with my sister Linda yesterday. I even caught her doing some weeding in the garden over the weekend!

No, I didn't exaggerate her condition and illness last week. Everything happened exactly as I told you. She almost died before she went to hospital Sunday before last. She said she felt it, my dad saw it happening, and the doctors were very worried. On Friday she went home, not needing any oxygen or pain medication. She was still a bit tired, sometimes short of breath, but I haven't seen her looking this good since January this year, before she got sick the first time.

I went to visit my parents on Sunday, totally ready and prepared to cook for us all. When I got there, everything was done, I only had to make the salad and lay the table! And mom flatly refused my help to pack the dirty dishes in the machine. Here is a picture I took of her and my dad on Sunday:

Her face is a bit puffy from the cortisone, (my dad's is puffy because he is a big teddy bear!) and truth to be told, this picture doesn't do her justice. (They might just hurt me for posting this picture!)

Back to my story. She had an appointment with her oncologist Dr D today. We're not very happy with the way he treated her, allowing her to get so sick without doing something to help alleviate her pain, but they trusted him. Today he informed them that the radiology dept at the hospital where they are, couldn't help them with the radiotherapy mom needed - broken machine or something. So they have to go to a different hospital 80km away. My dad asked if there was a possibility for them to rather go to a hospital about 20km from them, they phoned, and got an appointment for my mom immediately.

Doc D didn't like this at all and said if they don't want to go to his choice of hospital, then he would rather not treat my mom any more. (Good riddance I say!) In less than 30 minutes my dad got all the necessary reports, x-rays etc, and drove my mom to the other hospital. Let's call this one LA - Los Angeles - the place of Angels! (Now don't get confused - this is South Africa - this hospital was where I met the angels!)

My mom was almost swept off her feet by caring, helping, supportive nurses at "LA hospital". They were there less than a minute when the new doctor, Doc P, met them and discussed everything in detail with them. She sent my mom for a CT-scan and a bone density scan. That took a few hours, and while my dad went home to rest a bit and get some reports they forgot at home, I popped in to say hello. It's 5 minutes from my home where the old hospital was 20 minutes' drive away from me.

I was just in time to give my mom a hug and a hello before she went in for the bone density scan. We thought it was best for me to go home, since the scan would take about 45 minutes and by the time that was over, my dad would be there again. Just as we kissed goodbye, one nurse told me:

"No don't go, come in with your mom, you can keep her company. Come sit here, everything will be OK."

That was just one of the darling things they did for us. When my dad arrived 30 minutes later, another nurse called me to go get him and show him where my mom was, and brought an extra chair for him to sit on. They were so thoughtful, efficient, just wonderful! I left them a few minutes later with the promise of coffee at my place after they saw Doc P again.

There were a few minutes during the time I waited for them when I almost panicked. The news from these tests might not be good at all. But then I realized how calm I felt when my mom told me everything that happened before I arrived at "LA hospital". When they told me later that the scans showed my mom's cancer had spread even further than her lungs, it wasn't a shock. Not good news at all, but we felt cared for, safe.

The bad news is that the cancer has spread to the membrane around her intestines, her spine as well as some lymph nodes in her chest. But the good news is that these cancer cells are small, and treatable, they do not have to operate. Realistically it might never be operable, but we still have lots of hope. And her lungs are clean!

Last week this time we thought my mom was on the verge of dying. I was crying most of the time, even though God's grace gave me strength. On Tuesday she told me her cancer is terminal, and her response to the treatment will determine how long she will still be with us. In other words, she will be receiving mainly palliative care, making her last days as painless and comfortable as possible.

Realistically speaking again: yes, she might still be terminally ill, and the treatment she will be receiving at this new hospital might still only be palliative care, but it's as if the sun has broken through the rain clouds, and everything looks bright and beautiful.

Hope has shone through and filled our hearts to overflowing. Thank you dear God!

Monday, October 8, 2007

A memory for eternity

Today brought me the incredible gift of a very special moment in time that I shared with my mom.

I phoned her early this morning, to ask how she slept and how she was doing, but she was scarcely able to speak to me. She was so out of breath and in so much pain. When I said goodbye, we both cried.

A little while later my dad phoned, in tears, and when I asked how things are going at the hospital, he answered that it wasn't going well at all. When I hung up the phone, the dam walls broke and I started to cry uncontrollably.

The shock of seeing my mom so utterly weak and in pain over the weekend took it's toll. The heartache of having her crying against my shoulder when she was too tired to undress herself couldn't be held in check any longer. Yes it was rough being the strong one when my mom needed me, but it was so special to have been there for her.

When I got to the hospital, she was much calmer and restful and the medication started doing it's work. She was so strong and so brave: making jokes with two of our friends who drove to the hospital with me. After they left, she was too tired to talk, and I again realized how positive she tries to be for everyone else's sake.

I had some songs on my cell phone of Anne Murray's Gospel CD that I wanted to share with her, and after I plugged in the earphones for her and started playing the songs, I paged through the newspaper lying on the bed, holding her hand in mine.

Two songs later, she motioned to me to lie with my head on her tummy. She took an extra pillow and puffed it under my head. My very sick mom, making me comfortable to lie with her...

And there we were, my mom lying with eyes closed, me sitting next to her, lying with my head on her tummy. Her hand was on my head, her arm framing my face, and while she listened she stroked my hair.

A bit later she took one of the earphones from her ear and held it next to mine. The song she shared with me was "Bridge over Troubled waters" and the first words I heard was:

When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down

We just lay there, looking at each other, tears rolling down our cheeks. When the following lyrics were repeated in the song,

When you're weary
Feeling small
When tears are in your eyes
I will dry them all

she brushed the tears from my face and said: "I love you so much!"

We cried, we smiled, we loved. It was the perfect song for the perfect, most precious moment I've ever had with my mom, and I will cherish it in my heart for eternity.


Thanks so much for everyone's support and love in response to my previous post. You will never know just how much it means to me. Each and every comment was like a warm, comforting hug in real life.

My mom went to hospital yesterday when the pain and shortness of breath got too much for her to bear. The oxygen and morphine made her much more comfortable today. She suffers from malignant pleural effusion, a rather common occurrence with women suffering from secondary breast cancer that spread to their lungs, and they started the drainage earlier this evening. My dad said it was excruciatingly painful for her, but that it improved her breathing ability a lot. They drained about 2 liters of fluid within the first 2 hours! The fluid in her left lung (actually the pleural cavity) was starting to infiltrate the right one and pericardium (the membrane around the heart). Tomorrow they are hopefully starting radiation therapy, and her chemo will be adjusted to accommodate this new development. She is very, very sick, but it's going better every day.

My mom is the bravest, strongest, most positive person I know. I was ready to give up on Friday, but she is fighting back like a fierce lioness. She won't ever be cured of this cancer, but I believe that her strong will is going to help her heal.

Friday, October 5, 2007

Life is precious

It looks as if my mom's cancer has spread despite the chemo therapy. The fluid in her lungs was tested and the results showed its filled with cancer cells. She's not doing well physically: she is extremely tired, and has difficulty breathing and speaking. My dad's not doing so well either, understandably so. Please pray for them, for the rest of my family too.

I won't be posting very often: words seem few and far between. Besides, Infertility doesn't seem so bad when my heart is aching for my mom...

Life is so precious, and time is running out.