Deciding to kill the bad cells with poison

I know a lot of folks are probably curious about our decision to use chemotherapy, even though the cancer was no longer able to be found after my first two surgeries.  This may have been especially unexpected because I am adamant about eating a natural vitamin rich diet, and only taking medications when clearly indicated as beneficial. (Just to give an example:  I take about 10 pills every morning, 3/4 of which are naturally sourced vitamins and supplements.)

The chemotherapy that my oncologist recommended included Cytaxon and Taxotere.  Taxotere is known for causing rapid and complete hair loss.  This type of chemotherapy is so toxic, that nurses who administer it must wear a full body gown to cover their scrubs.  Children are not allowed in the room where it is administered, to prevent exposure that could injure them long term.  I've been asked by a few people if I could have opted out of chemo.  Technically, yes.  Would it have been wise, no! Like I had said in my last post, without further treatment after surgery, I had about a 30 percent chance of cancer reoccurence in the next 10 years (and closer to 40-50 percent over the rest of my life).  I've been reminded, lovingly, that God is not controlled by statistics.  I whole heartedly agree.  I also believe that God can work through scientists and physicians to cure and prevent disease.  He can choose to work within earthly standards and/or supernaturally.  I think that we have a duty to use the knowledge that God has revealed to physicians and scientists, and make the best choices we can with that knowledge.  This includes taking care of our bodies through healthy eating, as well as through medications for treatments.  I am not so naive as to doubt that when its my time to go, God will take me from this world, regardless of statistics or available treatments.  But God has revealed the current treatments to physicians for a reason.  From a scientific medical standpoint, my chances of survival with chemo and long term hormone blocking medication (5-10 years of treatment) are significantly increased than if I chose no further treatment after surgery.  This is even able to be broken down to chemo alone, or hormone blockers alone.  Both of these options would increase my chances of long term survival alone, but work even greater together.  With both chemo and hormone blocking medications my long term chance of reoccurrence is around 17 percent.

So why is the risk of reoccurance decreased with further treatment if the cancer was already gone?  For those of you that don't know, cancer was found in my right sentinel lymph node.  This means that the cancer made it into my blood stream.  It only takes one cancer cell to migrate, implant, and start dividing to cause a reoccurance.  Having had cancer in my lymph node, even though it was small, is more evidence that the cancer was extremely aggressive.  Many people have a larger cancer that doesn't migrate into the lymph nodes/blood stream.  The aggressive nature of the cancer is a factor in determining risk of reoccurance.  My type of cancer was the most aggressive type. This made going through with chemo an easy decision.  You see, when cancer reoccurs it is often more difficult to treat and more life threatening than the original cancer.  Statistically, less aggressive cancers are NOT less likely to occur with chemo treatment, but more aggressive cancers like mine are significantly less likely to return with chemo treatment.

Waiting for my treatment with wet hair!

Thinking about having gone through chemotherapy makes me emotional.  Chemotherapy is the treatment that affected me the most.  I will never be the same, physically or emotionally, because I had chemo.  If I had only had surgery (even though I had 4 surgeries!) this cancer would have been a small blip on the radar.  Going through chemo was life changing.  It was the hardest thing I have ever experienced.  I have never felt so bad, so sick, so tired, so weak and achy. Chemotherapy causes havoc on your digestive system.  I was taking two different anti-diarrhea medications and two different anti- nausea medications around the clock.    I have never felt so alone as I did while undergoing chemo and recovering afterwards.  People don't know what to say, so they often don't come around.  When I was out and about people thought I felt fine, because I looked "fine."  I felt terrible.  I didn't want to complain, but I did want folks to acknowledge that I felt pretty terrible. I didn't have the energy to participate in events the way that I had in the past and my friends went on with life without me.  I don't blame anyone, because its not their fault I couldn't go.  I do think that it should be socially acceptable to be having a hard time, and to be able to admit that things are NOT okay, but still have hope in God's promises.  (This is one reason why I was drawn to my newly acquired position as the Licensed Counselor at the Chronic/Complex clinic at St Joseph's Childrens: to help families grieve.)

Taken a few weeks after my last treatment, with my hair fixed to cover the bald spot.

I only had to have 4 treatments of the "poison" chemotherapy (December- March 2017).  I'm technically still receiving chemotherapy for another 9 months, but it is immunotherapy, which doesn't have the side effects that traditional chemo has.  The immunotherapy has man made antibodies that recognize the protein cell on the outside of the cancer, attaching to it and then causing the cancer cells to self destruct.  I am also receiving cancer vaccines injections that help my body to form its own long term antibodies, should the cancer try to return down the road.   You see, my biggest risk is not in the next 10 years, but rather in the next 20 years.  I also need to take hormone blocking medications for the next 10 years.  These meds cause symptoms that are similar to menopause, but more intense and for 10 years, rather than 2-3 years which is more typical for "the change."  

I wouldn't say that my life is getting back to normal.  It never will.  I need to grieve what I've lost and find a new normal, having hope in Christ, who is the ruler of all things.  It often takes up to two years for chemotherapy patients to gain their energy back.  I won't get back those two years with limited energy while my kids are young.  I can't imagine ever being glad that we had to go through what we have, and what we are currently going through.  Still, I pray that God uses it to refine us.  I can have hope that there is a reason, even if I never understand it on this side of heaven.

Out of hibernation (or is it cryopreservation?)

So much has happened in our family since the last post.  There's no way I could write about all of it in one entry.  For those that don't know, I did go through with chemotherapy.  It was  not an easy decision by any means.  I am a big advocate for natural remedies and looking at the risks vs benefits of everything, weighing carefully (because to only look at the risks would be unwise).  I plan to get more into the details decision making process in a future post.

Yes, I was clear of cancer on the PET scan PRIOR to chemotherapy, just from the two surgeries:  bilateral mastectomy and right auxiliary lymph node removal and dissection.  For those of you that have never been through aggressive reoccurrence prevention cancer treatment (ie never had cancer or had a slow growing cancer with a lower risk of reoccurrence): often times now days a longer treatment schedule is required to prevent the cancer from coming back, than even to get rid of the original cancer.  Its a misconception to think that the hard part is over once the cancer is gone.  Not always, but often times the hardest treatment is yet to come when the cancer is gone (particularly for small but aggressive tumors like mine).  This was the case for me for sure.  You see, I had an extremely aggressive, quickly dividing and very abnormal looking cell cancer.  My risk of reoccurrence of the cancer in the next ten years was 30 percent with no treatment after surgery, with a lifetime risk approaching 40- 50 percent.  This coupled with the fact that often times breast cancer that comes back, makes its next appearance in the lungs or bones (which is much harder to treat) made the risk of avoiding further treatment for prevention too high.   

Typically when this type of aggressive cancer is found it is at stage II or III (or even IV which typically can not be cured).  Mine was at Stage Ib when it was found and Ic (just under stage 2) 4 weeks later when it was removed.  (And the higher the stage the lower the chance of successful treatment, as well as the higher the risk of reoccurrence.)  My nephrologist said that I dodged a big bullet.  My primary care said that I've dodged a lot of big bullets. After he said that, I had a fleeting thought about getting a tattoo representing all the serious illnesses that I've had which are cured or controlled now.  Maybe a flower made out of ribbons for breast cancer, malignant melanoma, heart disease, and kidney disease?  But then again, its not like I beat all these things in my own strength.  I had nothing to do with it. (I didn't get the tattoo fyi.) God has gifted me with a thrilling life, never knowing what's on the next page of my suspenseful story.  I feel like a I'm the good guy in an action movie that is faced with dangerous situations and comes out unscathed by a hair over and over and over. 

Speaking of hair this is a picture of how my hair was "cryopreserved" during chemotherapy.   The type of chemo that I needed usually leaves patients completely bald after 2 treatments.  I needed 4. Lots of people have been curious about the caps.  There are a few brands but I used the "dignicap."  It has been in use for about a decade in Europe, but has only been used in the US in the last couple of years.There is a silicone and a cloth layer.  The silicone layer (underneath), fills with a gel that is below freezing.  The cap has a tube, which is hooked to a machine that continually cools the gel. This actually freezes your hair follicles and keeps them from absorbing the chemotherapy.  The cap must be worn for 1 hour before and 2 hours after treatment.

James getting in the fun.  Alas, no cap for him!

What does it feel like?  Think of wearing an extremely tight swim cap that is strapped under your chin and held as firmly as possible (painfully squeezing the ears).  Then imagine the cap filling with gel that is -20 degrees Fahrenheit.  Then imagine this giving you a continuous "brain freeze" or "icecream headache" that lasts for 5-6 hours while receiving, steroids and antihistamines, nausea medication, and a long chemo chaser.  Now, this cap worked amazingly and I lost minimal hair compared to most patients, so I am not complaining!  I feel so blessed that it was available, but I would never call having the cap on "easy."

This picture shows the first significant hair loss after my first chemo.  After my second treatment the chunks of hair that came out when I brushed my hair increased dramatically.   God has blessed me with a good head of hair, which helped camouflage what was happening, but my hair was (and still is) significantly thinner.

 My father-in-law "Bert" lovingly took a "twinsie" photo with me as my bald spot grew bigger and more difficult to cover.

My hair loss didn't actually get any worse than the photo with Bert.  Though hair is not the most important thing, feeling that I looked somewhat like myself during treatment, and more importantly looking like myself for my kids, was worth every penny of the cost of the caps (which are NOT covered by insurance and I was only able to utilize, due to generosity from my dear friends and family!  I can't thank you enough!)  Cancer treatments can bring families into such a low time, physically and emotionally.  Little things like having hair, can make an extremely difficult time feel not quit as hopeless.

Though the treatment time (5-6 hours every 3 weeks), was time when I got to relax and watch movies, work on journals for my child life practicum, and catch up on emails, it was hard to enjoy that valuable time to get things done and rare time to myself, as I knew three awful days were coming after the chemo (followed by a week of feeling really bad but not quit as awful).  I will write more about why we decided to go forth with chemo and the chemotherapy experience in the next post.  For now know that I am still in treatment every 3 weeks, but with another type of treatment that will last for about another year, which does not have nearly the negative side effects of chemo.  Our family is recovering, emotionally and spiritually. Please pray for my boys and I emotionally, spiritually, and physically, as well as for provision of continued help and support where we need it.  My support system has either moved or is over worked and over tired for the most part.  Supporting someone that has cancer means running multiple marathons.  My friends are worn out.  They have extended so much love, but need to love their families as well (and a few have developed health issues of their own).   My prayer is that by this time next year we will be refreshed, recovered, and find our new normal.  I look forward to having the energy to run marathons of support for others that need it.  We will never be the same just like my body will never be the same.  I can't imagine ever being thankful that it had to be this way on this side of heaven, but I do trust that God will use this to glorify Him, and I am grateful that my family gets to be refined with trials.

My sweet family on Cale's second birthday!  Its so special to celebrate these milestones!