Wednesday, October 26, 2011

A Slight Curveball

So here I am 3 days before my final c-spa trip fighting this cold that I have had for about 7 weeks now and digesting a lot of new information.

I have been looking forward to this day for a long time. It goes back to May 19th when it was my first trip to the C-spa which feels like a lifetime ago. I remember writing a blog entry the night before and being full of fear of the unknown and dread of what was to come. Now fast forward 6 months later and I have been through the worst nausea of my life, shaved my head and lost all my hair, managed to get 16 IV needles put in, struggled through all sorts of odd side effects and emotions and learnt to be fairly functional on extremely compromised levels of energy. I was actually walking to pick my daughter up from daycare a few days ago and literally had that “Aha” moment when the magnamity of the last year hit me suddenly. I couldn’t believe everything I had been through and managed to deal with. I mean I have been bald and managed to make it work! Go me! So as I look towards my last needle on Friday, I wonder how I will feel? Will I be relieved, will I be scared, will I be oddly sentimental? I mean this cancer business has been my life and there is comfort in the routine of it so I am unsure of my reaction to the conclusion of it. My daughter will be joining us for this final c-spa trip and I am ordering the cake today! I want to make sure the nurses know how much I have appreciated all their support through this process. The cake will say TUSEN TAKK CANCER SUCKS. For the non Norwegians reading this, tusen takk is Norwegian for thank you. I thought it was cute and hell it rhymed too! I really think sometimes we need to laugh about cancer as it has already had too many tears shed for it. And let’s face it cancer does well and truly suck!

Now Friday’s celebrations have been tainted slightly following my appointment with my oncologist yesterday. I seriously find these check ups terrifying and nearly started hyperventilating once we were in the room waiting for him. Once you are told you have cancer once, you can never truly rest easy when meeting your doctor because the unimaginable has already happened. I gauged his face as he walked in to see whether he would tell me something good or bad, however I think oncologists must have the best poker faces in the world. I couldn’t tell anything and he sat down and asked me how I was. Hmm… how I am? Sick of cancer, tired, frustrated and wishing none of this ever happened, terrified! We talked through the next phase of treatment which will involve 25 radiation sessions and what side effects to expect. It will be much easier then chemo in my mind as there are no needles! Radiation involves trekking to the hospital every day for 25 days straight (weekends are off) for a zap of radiation to the area where my lymph nodes were. It is an extra treatment to give you the best chance of killing off any remaining nasties lurking around the area. So according to my calendar, I will get my get out of jail card on December 20th! There will be lots to celebrate this Christmas.

Our discussion then shifted to hormone therapy which I had been dreading. In the beginning, my diagnosis was a non hormone related cancer which is one of the most aggressive but has one bonus of not requiring the five years of hormone therapy that comes with most hormone related breast cancers (which make up the bulk of breast cancer diagnoses). It was a small break amidst a lot of crap and also meant I could go on to have another child two years after my treatment had concluded. But now the fact that my cancer had a slight progesterone receptor (I don’t understand all the pathology or chemistry behind this!) meant that it was advised to do the five years of hormone therapy! I was upset to say the least as it meant taking a pill every day for the next five years, dealing with more side effects and this whole nightmare not being entirely over. Now I of course know hormone therapy is not the end of the world and the side effects are minimal compared to everything I have been through, but it feels like a continuation and it also means I cant have a baby any time soon. And when you have had cancer, time is your most precious commodity and you never know when it will be taken away from you again. I was also angry. Angry at the crappy deal I had been dealt of having this aggressive cancer whose only break was not being given to me!

And our final discussion surrounded the genetic testing of the BRCA genes which I have mentioned in an earlier posting. I bit the bullet and decided to have the test done on Friday. No sense in waiting now as it is there or it isn’t. I am getting a fast version of the test and if it is positive I will know in two weeks. If it is negative it still doesn’t mean I don’t have it but will require further genetic testing. Now the implications of a positive test are pretty major for me as the gene is passed through families. Children of parents with the gene carry a 50/50 chance of having the gene. If I carry either of the genes (there are two BRCA1 and BRCA2 with 1 being the more aggressive of the two), I will need to have another mastectomy imminently and lose my ovaries by 35. Yeah it sucks the big one people! Does this roller coaster ever stop? In my mind I was calculating numbers and 5 years of hormone therapy would take me to 36 and then the possibility of another child seemed to be slipping through my fingers. I hope I don't come across as greedy when I talk about my anger over not being able to have another child because I know many people never get the chance to even have one child. I know how lucky i am to have my daughter! Of course my husband and I want my health to be the number one priority and we are prepared to do everything possible to ensure I remain in remission. But it is a lot of information to process for anyone especially after having already been through what we have. I am praying that I don’t carry this gene but if I am then of course we will deal with it just as we have been dealing with every curveball so far. And how lucky am I to have this gorgeous little girl in my life! The doctor discussed again how strange my case was and the fact my cancer was undetectable which he hadn’t seen before. It made me thankful again for her in the fact that she truly saved my life and that I was in fact able to have her in the first place. She is my little angel and I will tell her every day how I am here because of her.

So after a bit of a shock yesterday, I had a cry while talking to Captain AC and let myself have one day of feeling upset and angry. Then I woke up today and just picked up where I left off. Life keeps going and you either decide to stand still and lament or look forward and continue walking. I want to keep walking because who knows what is around the bend. I am hoping it’s a big glass of champagne and some fabulous cake!

Thank you again for all your support through this journey.

Love to you all,


  1. I know in the whole scheme of things this may not make you feel better, but I had Sarah at age 36 and Jack at age 38. So everything aside 36 is very doable for having another wee one. I am praying that you don't carry either of the cancer genes.

  2. Oh Kate, I'm so sorry to hear this news. I am so glad the little miss came into your life as an unexpected blessing before this whoe crappy cancer business. You are lucky to have her, yes. But I also understand the desire to have another and I feel for you in (possibly) being robbed of that opportunity. We're all thinking about you here. xoxo

  3. I was so upset to read the new information you've gotten, BUT I am a huge fan of living in the moment, and today is only about one thing: CELEBRATION!!!! Congratulations, Kate, for making it through a really hard treatment. You've done it with a remarkable positive attitude, and I love that even when you've been feeling down, you've been able able to spread positive energy to the people around you. I just love that you're bringing cake to C-spa today! And the words written on it are really spot on.

    I truly hope that today can be a happy day, free from dark thoughts and worries. Be proud of yourself because you've made it! No matter what happens in the future, you've made it through these rough months, and that's a huge job worth celebrating:)

    I really missed you yesterday, but we'll meet when I'm back on my feet again:)

  4. Hi Kate! What I write here is not meant to negate in any way the emotions and experience you are going through as your personal experience, however it will give you the perspective of one(two or more)who have been there before you, and are still alive and thriving.
    1) my sister had breast cancer at age 31. Hers was (1997) estrogen rec.negative, so no hormone therapy. AT the time she had a lumpectomy but after the gene discovery she got her (US) insurance agent behind her and had a double mastectomy with reconstruction- the best looking breasts I have ever seen! She did go on heavy duty chemo, lost her hair and wore a wig for her wedding which was that very year, and had radiation, probably only 2 zones. 14 years she has been cancer free, tomorrow she will have a new lump removed from under her arm, but the good news is it has not spread!!
    2)Our aunt had cancer between the two of us (same year as me in 1998), then later again, but she is fine and has been working continuously as a music teacher. She has the gene but her two daughters DO NOT HAVE IT!

    part 1

  5. 3)I carry the gene and as it turns out my 19 year old has it too. I had a mastectomy in 1998-Radium H found cancer in ONE NODE. I had SIMULTANEOSLY chemo (7 months worth) and 25 - 5 zone radiation sessions, at the end of which- a year later I had my ovaries removed due to that gene and my age. I also went on Tamoxifen for 5 years. About chemo- I hated it, pure and simple, but praised the anti nausea drug and partway through they gave me valium to break that association of feeling nauseous just thinking about and entering Radium H. I loved and trusted my oncologist and as of this year declared I am graduated from that place. Radiation: Due to spreading to one lymph node I had FIVE zone radiation, which was done on two machines. One of my worst problems was actually baby sitting as I had a 3 and a 6 year old, had no capable family here and none of my own family. My daughters school taxi driver stepped in and took care of my son (my daughter was in 1st grade) while I waited for those rad machines and I am forever grateful to her. The skin gets tender, and the drawings remain on your skin for 5 weeks, but I discovered chiffon scarves to cover the drawings, and I use still them to this day. I love them- to cover my neck, to keep me warm. I felt like a helicopter landing pad and used humor, humor, read alot, crafted- anything to make me buoyant. Radiation is not the worst thing at all. Drink a ton of water and take chlorella algae pills, something I started then and still do and believe in, to boost the immune system and wash out toxins. Gene testing: by the time I was doing mine I knew the answer because of my sister and aunt's results. Today I am glad we KNOW my daughter has the gene(not glad she has it), because she can be followed up at Radium from the age of 25.

    part 2

  6. Babies: I had had mine by the time I had my ovaries out (age 38)- but we considered having 3 at one time. We have two, both with other diagnoses within the system as well- a challenge, but we have become very closely knit from all the adversity and use HUMOR HUMOR HUMOR. I am still alive, kicking, thriving- even after cancer and genes, chemo and radiation, aspergers and bipolar in the family.

    My sister had a baby some years after her cancer and after chemo was out of her system. That boy is so intelligent and athletic to boot! And my daughter's previous assistent (whom is now a close friend) is expecting a baby in one month's time and she is 44.

    Breasts- because you have the gene does not mean you have to remove your breast. I still have one and chose so far not to have reconstruction. My sister chose to remove both and reconstruct. I am for minimal interference, she goes for surgeries she doesn't have to have (works at hospitals). You can also choose to wait, and do it later, think about it, wait for new better methods.

    Tamoxifen/Novaldex: I took it, my sister didn't. My doc told you me have better chances at long term health if you are on it. I have not had a return of my cancer.I did not have alot of problems being on the drug. There can be some weight gain- varies in various people, some lose their periods. I was having all my treatment at once so it was hard to distinguish what was what but I had my period every 3rd month regularly during all this til my ovaries were out.

    My life is not your life and we all have different challenges. When bad things happen I remind myself "this too shall pass." Use lots of humor, do things you enjoy, absorb all the LOVE around you, and believe in your caretakers. Seems like you are doing all those things already- so you don't even need my words. I just want to say- I have been through it myself and I have lived to see my children grow to near adults, lived to be a part of all sorts of things, witness, feel alive, love, and I even turned 50 the other day. I never saw myself as this old- and I celebrate every silver hair and every wrinkle. Birthdays are to be celebrated! Next Sunday my son turns 17, and I am here to celebrate that too- the treatment did its job and I thank God and my doctors.

    I wish the same for you.

    All the best for LOTS of LOVE and LIFE,
    Sue (USA, Canada-sort of,& Norway)

  7. Dear Kate,

    I am glad that the day that you have been looking forward to for a long time has finally arrived. Your "first trip to the C-spa which felt like a lifetime ago" was already in history. You now have a whole lot to do: new thinking to consider, new knowledge to be embraced, new fears to conquer, new measures to take,new steps to walk on. Of course,I hope, new inspiration, courage, and belief, which should help you move on as you step into a new legacy in your precious life!

    I truly understand it's not easy for a young mother like yourself to undergo all these fears, struggles, treatments and pains in fighting cancer. But you've said it so honestly before, "life is fragile", and surely, vulunerable too. As cancer patients and survivors, what we can do is keep on ACCEPTING the challenges which are and will be ahead of us: accept the destiny (if you so called it), or misfortune (if you lament over it),or frustration (if you are angry over it),or the unexplained (if you're scared of what the future would be). However, one thing I am sure: this path has given me a lot of chances to contemplate and understand real messages unfolding in my eyes, my personal defects, and a stronger desire to be a better person.

    I sincerely pray that the result of your genetic testing would be a favorable one. Whichever the outcome would be, it looks like you are quite prepared: "pray if I don't carry this gene but if I am, then of course we will deal with it just as we have been dealing with every curveball so far." And "how lucky am I to have this gorgeous little girl in my life!" Well,try not to speculate the worst, just wait what will happen, then face it, discuss measures with your medical caretakers and family members, and dare the challenges. You have done it, you can do it.

    No,you are not greedy to hope for a smooth path, but does this roller coaster ever stop? Who knows? Nevertheless, only you yourself must gather all necessary courage to ride on it,if you have to. It's wonderful of you to realize that "many people never get the chance to even have one child" but lucky that you have a gorgeous little girl in your life before your cancer hit you. Good also that your husband and you want your health to be the number one priority and you are prepared to do everything possible to ensure you remain in remission.

    I don't have the experience in dealing with radiation and Tamoxifen treatment. But a lot of my breast cancer survivor friends have had radiation and found it easy to handle,except the fatigue part. Also, it seemss like the 5 years of Tamoxifen treatment has given them a guarantee of 5 years longer life span at least(I would say,it could be my misconception),as they are all surviving well. Anyway, the previous post comment from Sue has a lot of valuable information and feedback regarding this aspect.

    Take care dear! Be thankful anyway for having gone so far, so courageously, and so successfullly. Keep embracing HOPE and BELIEF! Together we can conqquer. You are not alone!

    Hugs and Prayers.