The waiting game....It's never fun, but in the midst of a global pandemic, it has been taken up a notch. It has been longer than expected since I have shared an update and that is due to the fact that I was waiting for more information to actually update you on.
Last week marked 6 weeks since I had been off treatment and over 5 weeks since the biopsy of my sacrum. Just as a little recap, that biopsy was completed in order to test whether my cancer has a particular mutation that would qualify me for a new promising drug, since we have come to another fork in the road regarding my treatment plan.
I was told the biopsy results would take two weeks for the independent lab to complete, but I didn't hold my breath knowing full well that everything is delayed these days in the midst of COVID-19. While I awaited those results, I completed 10 radiation treatments, started to have pain relief, got off the meds that made me feel lousy, felt super grateful and relieved...and then the pain returned. It's been a bit of a rollercoaster, which seems to be par for the course when I'm in the midst of a recurrence. The good news is that after re-introducing the nerve pain medication, I am feeling better with minimal side effects...bonus!
In all honesty, I have actually been surprised at how patient I have been while waiting for these results. (Patience is definitely not one of my virtues!) I have been able to let go of any stress or anxiety about it, knowing full well that it was entirely out of my control. But, come Week #4, I was hoping for some type of update. I called my nurse and was told that the lab had completed 3/5th's of the testing. Fast forward to Week #6, and I was starting to get a little antsy. I checked in once again to see if there were any updates, and that's when the rollercoaster ride continued.
The first thing my nurse said was, "the biopsy is positive"...and I literally said, "yes!" out loud. However, my excitement and relief were quickly dampened when she said the lab did not have enough tissue to complete the testing. The "positive" aspect she was referring to was that the pathologist reported that indeed this tumor is metastatic breast cancer that has spread to my sacrum - which is what we already assumed. The fact that there wasn't enough tissue to complete the testing for the mutation was devastating.
It has been very unsettling to be off treatment for 6 weeks; the longest I have ever gone in 9 years living with MBC. And now to top that off with feeling like that biopsy of my bone (which was not fun), and the subsequent 6 weeks of waiting...has all been a total waste.
The plan now is as follows:
There are a few other important considerations that further complicate things. The one that weighs heavily on my mind is that no one knows if this tumor mutation survives in tissue that has been preserved for many years. There is a great chance that even if I have a positive mutation, the test will be negative because the tissue they are testing is 3 years old. On top of that, what if there still isn't enough tissue there to test? Do we have to wait until my tumors grow large enough to have a painful biopsy yet again in order to have a complete test? All of this scares me.
To top it all off, communication with my treatment team has been poor and for the first time in 9 years, I have felt very in the dark and have been left with a lot of unanswered questions.
For now, I am focusing on the hope that being back on some type of treatment contains my disease and hoping/wishing/praying/pleading that there is enough tissue in my ovaries to complete the testing and that the result is positive.
I continue to practice letting go of what I cannot control and will continue to live, love, laugh and soak up every moment I can....despite remaining on this rollercoaster.
Mike and I enjoyed a hike last weekend and coming upon this tree felt so poetic to me. Sometimes we are forced to bend so much that we think we might break. It's amazing what all living things can endure.
I had a week to think about this latest news, to read the MRI reports and luckily have an impromptu appointment with my radiation oncologist last Thursday when I ran into him at Karmanos while there for blood work and an injection; all before meeting with Dr. F on Thursday morning.
The MRI report and meeting with my radiation oncologist revealed cancerous activity at more than one place in my spine and also elaborated on some of the damage that has remained there for the last few years due to cancer, radiation and other side effects. The good news is that over the last two weeks, the pain in my back has subsided substantially. So while my radiation oncologist said we can definitely radiate this area (even though part of it has already been radiated once), he would suggest waiting to play that card until I absolutely have to. And I agreed. Radiation to the spine carries a great deal of side effects, not only potential damage to the spinal cord, but also damage to surrounding structures. The last bout of radiation I had to my spine left me feeling like I was swallowing glass and resulted in dropping too much weight in a few short days from my inability to eat or drink. My radiation oncologist, Dr. M, assured me I can call him any day, at any time, if my pain returns and I need to get in for radiation. He is simply the best and I am so grateful to have him on my team...and grateful I don't need his care again quite yet!
Mom and I headed to my appointment Thursday morning, where we came with a handful of questions, but also a lot of faith in Dr. F and his opinion. Dr. F shared that there are plenty of arguments to support changing my treatment at this point, but just as many to support watching and waiting. These are some of the main points of our pretty long discussion together:
When the study was published in 2016 about the combination of drugs I am currently on, it was hailed as a huge success because the "progression-free survival" rate was 9.5 months. I have been on this treatment for 22 months now so I am extremely grateful for that! And if I can squeak out some more mileage on it, all the better!
On another note, I will be meeting with the Phase 1 Clinical Trial doctor at Karmanos in a couple of weeks to see what trials they have. It is a scary thought for me because the phrase "clinical trial" has also felt like the words "palliative" or "hospice"....words you hear when things are extremely dire and there aren't many options left. But luckily, Dr. F explained it to us in a way that made a lot of sense and didn't feel nearly as terrifying.
Aside from meeting with the clinical trial doc, Dr. F is going to watch me a little closer for now. I will still have blood work every couple of weeks, injections every 4 weeks, see him every 8 weeks and get scanned again in 3 months instead of 6.
I feel in my gut this is the right plan for me at this particular time. I feel good about it - as does Mike, mom and my doctors. So we wait...and we watch...and pray that the pain doesn't return and that these rogue cells chill out and hibernate for a good long while.
In the meantime, my blood counts have plummeted once again (never seems to be any rhyme or reason), so I wasn't able to restart my treatment on Thursday. It does explain some of the additional fatigue I have been feeling lately. I will have repeat labs done next Thursday and hopefully restart then.
I think that about sums it up.
Thanks for all the love and prayers!
It's not quite the exciting package one hopes for that appeared on the front porch today. No fun new pair of shoes from Nordstrom or random gadget from Amazon. This package is filled with potential to cause a range of symptoms from nausea, vomitting, diarrhea, fatigue, low white blood cell counts and mouth sores...just to name a few. But, this small box of 21 capsules is also filled with hope, potential stability and the return of healthier days. The only thing I do know for sure is that this package is filled with a whole lot of uncertainty. And although I am used to living with a great deal of it, this time the unknown seems a bit scarier.
This new medication is one of two new drugs I will be starting this week. This oral medication is called Ibrance, and is also known by the generic name of Palbociclib. Ibrance is what is known as a "targeted therapy". In very simplified terms, targeted therapies aim to attack the cancer cells without harming the body's normal, healthy cells. Therefore, targeted therapies, while they come with their own list of side effects, aren't as toxic as traditional chemotherapy agents. Ibrance is a targeted drug that blocks proteins in the cancer cell which in turn helps prevent the cells from dividing to create new cancer cells.
I will be taking Ibance daily for 3 weeks, followed by 1 week off which will allow my body some time to recover and for my blood counts to bounce back up. Due to the high risk of my white and red blood cell counts dropping significantly, I will have blood work drawn every two weeks to make sure I am safe to continue on this treatment.
Not only does this week mark the start of Ibrance, but it will also be my first time receiving Faslodex. The drug has the generic name of Fulvestrant and is the intramuscular injection that I will receive every two weeks. The two of these drugs together have shown very promising results in recent studies. You could read about that here. Faslodex is known as an "estrogen receptor downregulator" which means it binds to the estrogen receptor site of cells and causes the receptors to break down, thereby preventing the normal cellular responsen to estrogen. This is important since my breast cancer is fed by estrogen. Even though I am in medically induced menopause, we want to make sure there isn't any other way these cancer cells can by fed by any stray estrongen that may be floating around.
I will receive my first injection of Faslodex on Thursday, along with my monthly injection of Zoladex that keeps my ovarian function supporessed. On Friday I will meet with a gynecological oncologist at Karmanos to discuss my surgery to have my ovaries removed.
Fingers crossed that I tolerate this treatment well with as minimal side effects as possible. And of course, that this treatment plan is successful! I have blood work next week to check how my counts are responding and will then see Dr. F the week after that to see how I am tolerating the treatment. It sounds like I will have scans in about 3 months to see how things are looking.
As always, thank you so much for the love and prayers. Please keep them coming!
ps - We just got back from a trip to California where I was invited to the Dr. Susan Love Research Foundation Metastatic Breast Cancer Collateral Damage Project. I am really looking forward to sharing more about that soon. But until I have the energy to write that post, enjoy these little snapshots of my free day spent with Mike. :)
There is no doubt about the fact that cancer is one sneaky beast. Lurking in the darkness. Slowly creeping up through the shadows and rearing it's ugly head at any time.
I have always known this. I have lived this while watching relatives and friends face the disease before I did. But it is another thing altogether when cancer sinks its fangs into you.
I have been neglecting the blog so much over the last couple of years because truthfully, all has been relatively stable for me since my recurrence at the end of 2014. Life has been full and busy - just like I have always liked it. Work, photography, travel, family, pups, friends, cooking...fitting as much into each day as possible. This summer I was feeling the best I have in years. One of my bff's and I devoted ourselves to a morning bootcamp class before work and I faithfully attended for about 12 weeks. It felt so good to finally feel more like myself - energized, strong, and comfortable in my own skin. It never ceases to amaze me how quickly that can all change.
On September 15th I awoke around 2am to excruciating back pain...the kind that is impossible to describe unless you have experienced bone pain from cancer. I have felt this before and know it all too well. I felt like my back was going to shatter in a million tiny pieces. I woke Mike up and asked him to please try to rub my back in the hopes of some relief. To make a long story short, after suffering through the work day and barely getting through it, I ended up in the ER that night. This started a cascade of events which have led to where we are today. At the risk of skipping some details, but saving some energy, here is the "highlight reel".... ;)
-Completed bone scans, CT scans and spine MRI's the last week of September
-Learned on Sept 29th that I had progression in my spine at multiple levels which also caused my T8 vertebrae to be fractured
-Underwent high dose radiation treatments to my spine every day before work for two weeks which concluded on October 14th
-After initially only feeling some fatigue and slight nausea, I encountered severe side effects the week after radiation ended. My esophagus was an innocent bystander caught in the crossfire of radiation and the damage was unexpected and extremely painful. It was not a sore throat due to the radiation burn that you would expect. It was more like trying to swallow glass through a tube that had narrowed down so tight that even water caused ridiculous pain and coughing. It become so bad that I avoided food and liquid altogether; resutling in a 8 pound weight loss over 4 days, along with severe exhaustion and overall feeling like crap.
-Could finally start eating towards the middle/end of last week and have been feeling MUCH better!
So, that brings us to today. I went in this morning for a follow up with Dr. F, my oncologist. It is too exhausting to detail right now but basically, I thought he wanted to stay the course on my current treatment because it has been keeping the rest of my body free from disease and limiting the disease to my spine. I was taken by surprise this morning when he immediately stated he wants to switch my treatment plan completely to two targeted therapy drugs. I had been feeling in my heart that it was time to switch treatments but I guess I just didn't expect it today and I wasn't prepared. It unleashed a flood of emotions and uncertainties about the future....
What will these side effects be like? Will this change my quality of life? Will I be able to maintain my normal busy schedule? Will I feel nauseous? Fatigued? Lose/gain weight? Will this work and for how long? What if I have another progression soon and blow through yet another treatment option? What if it doesn't keep the disease limited to the bone? What will happen if this fails?
I have been beyond blessed these last 5 1/2 years to maintain a pretty great quality of life despite all I have been through. I don't want to lose that. I don't want to start to head down that road of jumping from one treatment to the next because things have stopped working. I don't want to hear, "there is nothing else we can do for you". I learned tonight that another young friend with MBC was just told those exact words yesterday. She has entered hospice and it's just heartbreaking.
The other tough part of today was making the decision to finally have my ovaries removed. My disease is fed by estrogen so my ovarian function has been medically suppresed since I was first diagnosed...first through chemo and immediately following through that lovely shot of Zoladex I receive every single month. Dr. F has always said that there is no real difference between the Zoladex and having my ovaries surgically removed. I told him to tell me point blank if it would better my chances for survival to have them removed and he said the research can't prove that. So, we decided to stay on Zoladex and not rock the boat by having surgery.
Well, today he finally said, "If it was me, I would have them out." That's all I needed to hear. I know it will be a pretty straightforward laproscopic procedure, and I am not worried about the surgery itself at all. But it just feels like another huge punch in the gut. Another glaring reminder of all that cancer has robbed from me. I feel like I have been dismantled piece by piece of all that makes me a woman - the loss of my hair, my eyelashes, my breasts, my ovaries, my ability to bear children. It is a pain that runs so very deep and having my ovaries removed opens that wound up...a wound I have tried so desperately to close up and allow to heal.
My new treatment plan will consist of two new drugs I will write more about later. They are extremely expensive so I have to wait to start them until I receive insurance authorization and I don't know when that will be. I will take an oral pill daily for 3 weeks and then have 1 week off, then repeat. The other drug is an intramuscular injection that I will receive in the good ole' tush. I will receive it every 2 weeks for the first 3 rounds and then every 4 weeks after that.
There are side effects of these new drugs that are highly likely, including a significant decline in my blood counts which will place me at high risk for infections as well as cause fatigue. There are many other possibilities but these are the most likely. I will have blood work completed every 2 weeks to make sure my counts stay in a range that is safe enough to receive the treatment.
So this is where we are, friends.
This is the plan until this disease starts crawling back up from the darkness and threatening to rock our world once again. But, with each attack it wages, I will beat it back down and chase it right back into the shadows...running it out of the sunshine where I choose to live my life.
Please keep me in your prayers. I am feeling a bit overwhelmed and down right now, which is not a place I like to be. Please keep Mike and my family in your prayers. Spefically, please pray for wisdom for our medical team to help us to make the right choices for my care; for strength to endure whatever may come our way; and for faith and perserverance while remembering that we are in God's hands and are loved and cared for every step of the way.
I promise to write more soon and keep you all updated.
Thank you for always being the most incredible support system anyone could every ask for. It is appreciated more than you will ever know!
Have you ever had one of those out of body moments where you feel like you are floating above your physical self and somehow watching what is unfolding rather than truly experiencing it? That's how I felt on New Year's Eve during my first radiation treatment. It was almost exactly three years ago that I first laid on that radiation table. I have said this before but it's true in this circumstance as well...some days it seems like yesterday that I was diagnosed and first went through radiation, and other days it feels like a lifetime ago. As I laid on my back in that lovely hospital gown and looked up into the bright flourescent lights, reality struck me and I almost couldn't believe I was there. It hasn't necessarily been smooth sailing, but all in all, I have been doing amazingly well throughout the past three years since I last had radiation. And although I had a sneaking suspicion that something was wrong, it still takes me by surprise sometimes that I am in the thick of things again..waging a full out battle against this disease.
Once again, I have nothing but the best things to say about the amazing Karmanos Cancer Institute where I am treated. My radiation oncologist, Dr. M has made me feel very confident in this process and I am grateful for that. Originally Dr. M stated that he really wanted to do a special targeted high dose radiation called Stereotactic Body Radiation Therapy - also known as Cyberknife or Gamma Knife treatment. You can read more about it here but basically it would be a higer dose radiation that only requires 3 treatments and has less side effects. We did the entire simulation for this which required a custom molded cast of sorts of my body which would ensure I wouldn't move during radiation, as well as a bar across my abdomen so that I couldn't take a deep breath which would cause too much internal movement. I had the tattooing done as well so I could be lined up perfectly on the radiation table. During the simulation they also do a few CT scans to determine exactly what the radiation field will be that will receive treatment.
Unfortunately, the night before I started radiation, Dr. M called me to say that once he completed the planning after the simulation, he realized that too much of my spinal cord would be within the radiation field. The spinal cord is able to take some radiation, but not at the intensity that the Cyberknife would be. So I have been receiving more tradiational radiation treatment like I did to my chest 3 years ago but thankfully, I only need 10 treatments. I head to radiation each morning before work or on my way home from work and truthfully, it's a super easy and straightforward treatment. It's pretty similiar to what I wrote in my previous post 3 years ago about radiation so if you want to read more details about the entire process, check that out here.
I have completed 7 treatments so far and I am so happy to report that I am definitely feeling relief. My hip is feeling much better and although I am not painfree, the difference is truly noticeable and has restored my ability to sleep and relax comfortably while sitting. I am barely taking any medicine for pain and my overall quality of life is significantly improved. So cheers to that!!!
Thank you for the continued support. The calls, texts, flowers, blog comments...it all means so much to me.
Hope 2015 brings continued happiness and good health for us all!
A glimpse at my Groundhog Day routine at radiation....
Here I am! Did you think I forgot about you?
A little sneak peek of our adventure in Maui....
A new addition to our family! Meet Gracie!
On Tuesday I had my radiation simulation, including another awesome tattoo...
How is it that time just passes in the blink of an eye? All of a sudden, here we are at the end of another year. It never ceases to amaze me at how fast life continues to roll on - no matter what we are dealing with. I suppose that is a good thing in many ways. It helps drag us along during those tough times, until finally we can feel the weight start to lift and the sun shine on better days.
As I sit here reflecting on this year, I feel such a mix of emotions and thoughts - all of which culminate to one overriding message. Perseverance.
The year has been filled with many up's and down's - which is true for all of us - although especially lately, it seems like the lows have been more frequent and deeper to crawl out of. We have had many blessings including a new home, continued good scans, and countless great memories with family and friends. But, this year has also brought many challenges for us emotionally which have tested our faith and trust in the greater plan that God has for us.
The past few months have been the most challenging for me emotionally since my initial diagnosis. Due to a variety of issues, I hit a new low and struggled to even find the joy in each day. For the first time, I truly wondered if I was being punished for something. I felt an overwhelming sense that we were continually knocked down and made to endure heartache after heartache, while it seemed like others around us, received abundant blessings and joy. It is a very dark and lonely place to be.
As I have worked through these times, I have simply resigned myself to the fact that our lives will forever be filled with pain and heartache. Living with this disease has impacted our lives in countless ways, many of which I am just now starting to fully understand and experience. The continued physical toll is heavy, but the emotional toll is often times unbearable. I have recently felt as though this can turn you into a pretty selfish person - focusing on how hard you have it - how sad you may feel - how your future will never look like what you always thought it would. I fell down a slippery slope of sadness and guilt and failed to see how I was pulling Mike down right along with me.
The one positive aspect of hitting your own personal rock bottom, is that you have no choice but to go up. To make the slow climb out of the darkness and back into the light. It allows you to take time to reflect, to evaluate, and to reset your life's compass back on the path that you would most like to travel.
I share these personal struggles not only as a cathartic tool, but to also help remind myself that it is okay if I am not able to feel grateful, positive and optimistic 100% of the time. I have struggled with guilt and feeling like a fraud when I experience these tough times because so many of you always think of me as being so happy and positive. I am trying to release myself of these chains that bind me to the sense that because I am alive, I must be grateful at all costs - because I have lost friends that would trade places with me in a heartbeat. I am learning that because I have been able to stay in remission, doesn't mean the collateral damage of this disease will leave me - and that it's okay and perfectly human to have moments of despair, sadness and even self pity. Yes, I am so grateful - for so much - but this life is also very difficult at times - more difficult than I would have ever imagined.
Life is about perseverance. It is about riding the waves of the good times, but being able to pick yourself back up when you get knocked down with your face in the sand. It's learning how to brush yourself off and get back out there to try to ride that wave of happiness once again. Because in the end, those moments of pure joy are worth every second of despair and defeat that may be encountered along the way.
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Seems like I have sand and surf on the brain, huh? :) Well, that's because Mike and I are leaving for California the day after Christmas. To say that I am excited, is definitely an understatement. We have wanted to take this trip and venture along the Pacific Coast Highway for years and I am so glad we are taking the time to do it. That is one gift that living with disease can give. It makes you realize that there is no sense putting off your hopes and dreams if you have the ability to make them a reality. Do it today. Do it now. We never know what tomorrow will bring. We need this time away together so badly and I cannot wait to see the ocean, and the Redwoods and watch the sunset with Mike by my side.
Not only will we be celebrating our 6th anniversary on this trip, and New Years Eve, but we will be celebrating another round of great scans! I saw Dr. F last week and found out that everything still looks great! He is very please and so are we - to say the least! I will continue with my current meds and 6 month scans - no need to change course. Thank you all so very much for your prayers and support. Going through those tests is such an anxiety ridden time, and your loving words of hope and encouragement mean so much to us.
Thank you for loving us and supporting us along this journey. We hope you have a wonderful holiday season with your nearest and dearest. We look forward to great things in 2014. See you in the New Year!
Can't wait to share our images from California in the next post. Until then, a few iphone pics of my beautiful friends, family, pup and yard. :)
Yesterday, I was introduced to NED! "No evidence of disease"!!!!
I saw Dr. F for my results of my latest round of scans and immediately burst into tears when they told us that the scans looked great and that I was still boring just like 6 months ago. :) But, what shocked me even more was the fact that the bone scan said there was no evidence of metastatic disease in my bones! Well, hello there NED!!!!
Now, let me please explain that Dr. F doesn't put a whole lot of stock in those words. He said he doesn't get "overly excited or impressed" and that these scanning machines are not perfect. He says it's much like looking down from an airplane and trying to see a dandelion in a field. It's near impossible to spot just one but if there are a lot of them in a big patch, you can see them easily. So, he basically means I still could have little isolated cancer cells in my body but right now there isn't enough of them to be detected on the scans. I have always understood this and I am okay with that. I understand that sometimes people hang their hats on "NED" and then they have a scan a few months later that shows a change and they have a huge let down after feeling like they were as close to "cancer free" as possible.
I truly understand that and I have always been happy to hear that I am "stable"...but for right now...for just a few days (or months)...I am going to be extremely thrilled that I am hanging out with NED! I know it doesn't mean I am cancer free or that I am cured. It means that right now my medicine continues to work and keep me in remission. It means that I can continue with my current treatment. It means that my bones, although still damaged, are healing. And most importantly, it means that I can continue having a really amazing quality of life. The few side effects I experience from my meds (hot flashes, fatigue, joint aches) are so minimal in the scheme of things and I don't let a day go by where I am not grateful for that.
There are still little things we will keep an eye on. My platelets are on the low side and I have been having a lot of issues with bruising. If those continue to drop, I will have to have a bone marrow biopsy to see if my meds are impacting my body's platelet production. There are a few other minor issues I have been having but nothing big and nothing that Dr. F is really worried about.
THANK YOU, THANK YOU, THANK YOU for all of your support, love and prayers! I couldn't be happier and couldn't be more grateful. I do believe in the power of prayer - I believe in God's ability to work miracles and I am not giving up the faith that maybe there is one in store for me. It has taken me this long to truly be able to even put those words out in the universe, but maybe - just maybe, I could live a long, healthy life in complete remission without this awful beast robbing me of my future.
For now, I am believing that this can happen for me and I will continue to fall asleep each night with a smile on my face...dreaming of NED. ;)
With a grateful and overjoyed heart,
New favorite word #1.....STABLE! The scan results are in and everything looks good! Stable...no evidence of active disease...nothing new...continued healing of the affected spots throughout my spine. Can I get an "AMEN!".....Woohooooo!!!!!!!
Second favorite word..."Boring". That's what Dr. F called me today and I take that as the biggest compliment I have received in a long time. I have yearned to be "boring" - medically speaking, anyways. Although Dr. F doesn't get all excited and enthusiastic, he did express his satisfaction with these results and said we will just keep the course since it seems to be working well and keeping my disease dormant...and that's what we are hoping and praying for, for a long long time!
No other real news to report - I will continue with my two injections into my abdomen every 4 weeks, follow up with Dr. F every 8 weeks and continue to be scanned every 6 months.
I wish there were better words for me to use to truly convey my appreciation and gratitude to all of you for your love, support and prayers...but really there is nothing else I can say except for a HUUUUGGGEEEE, "THANK YOU!" Thank you so very much for everything. Truly. You have no idea how much comfort and hope it brings me to know so many people are thinking of us, praying for us, and supporting us. It really does make a huge impact on Mike and I, and I hope you all know how immensely grateful we are.
What an incredible start to 2013! If these results are any indication of what this year has in store for us, I think it's going to be an amazing year. Happy New Year to all of you and I wish you all nothing but health and happiness in 2013!
I'm having a tough time getting into the Christmas spirit this year. I don't know why or what that's about. I think I just feel tired. I keep waiting for the day that the fatigue is gone, but it just seems like I will never feel the way I once did. Maybe I just need to come to terms with that, huh? Everyone keeps reminding me that it's normal to feel this way and that my body has been through so much - and I know all of that - it's just frustrating at times. Dr. F says that for every round of chemo you have, you can expect 1-2 months of fatigue....so, 15 rounds of chemo x 2 months of fatigue/round = 30 months! 2 1/2 years of lingering fatigue - sheesh! I know things could be worse and I don't mean to complain, there are just times where feeling this way starts to bum me out. It has been very hard to come to the realization that I just can't do things like I could before. It has hard to realize that putting in just a 6 hour work day can leave me feeling totally drained. It makes me wonder, if we were somehow able to have children one day - would I truly be able to care for them the way a good parent should? It breaks my heart a little bit to think the answer to that question might be "no".
When the fatigue really sets in, he seems to bring along it's good friend "Ms. Extra Emotional". I am just feeling a little bit more emotional and anxious than normal, but I am sure that also has something to do with the stress of the holidays and the fact that my scans are coming up next week. It seems like I am feeling more nervous about my scans this time, but I am sure I have felt like this before every other round of scans too. I feel a little scared that if they don't come out good, I will blame myself and beat myself up for it. I have felt so tired lately that I haven't been working out and I haven't been cooking and juicing as often as I usually do. I have still been eating pretty healthy, but we have definitely been indulging in some treats over here. I am well versed on how diet and exercise can affect my disease, and although I don't obsess over it, I have been beating myself up about it lately. I don't want to put blame on myself if my disease does end up progressing, but right now, I am worried I might feel that way.
There seems to be some misconceptions out there about what life is like once you are diagnosed with cancer - and I admit, before I was in this position, I was guilty of believing many of them. Like you have maybe a rough year or two and then your treatment is over and life is just exactly how it was before. Story over. Happily ever after. Period. Well, even though I have been blessed with good scans and haven't required changes in my treatment plan, life just isn't ever the same. There are always hurdles (big and small) that no one can prepare you for. I am guilty of thinking my friend, Meredith (who also lives with cancer) must have always been doing so great because "she looks wonderful in her pictures on Facebook". Ugh. How many times do we hear, "but you look so great" even though we might not really feel that way. Yes, I am thankful that I don't look exhausted or look like I have a throbbing back ache but that doesn't mean that those things aren't happening. We just don't post pictures on the days were we might look and feel pretty rough.
I guess that's why this transition has been so difficult for me. Although I knew this wasn't going to be one battle, but rather a very long and continuous war - I must have still thought that once the initial blast of chemo/surgery/radiation was over, that I would feel perfect again. I didn't expect to battle this much fatigue for so long. I thought I would be able to work more by now. I thought I would be able to clean my house, run errands, and cook dinner without my back throbbing by the end of the day. I thought I could go back to getting 7 hours of sleep and that I would wake up feeling rested - rather than experiencing burning eyes, body aches and exhaustion from the moment my alarm goes off.
I am hard on myself. I admit it. But that's just who I am. I have always held myself to high standards and have been able to accomplish anything I want - and this is a tough pill to swallow to not have any control over how this fatigue continues to plague me. Does it completely limit me and diminish my quality of life - no, definitely not. I continue to be busy and fill up my social calendar like crazy because I refuse to just lay down and hibernate. But, it's frustrating nonetheless.
I know I have said this many times, but I am truly BEYOND thankful for Mike. The bottom line is that I couldn't do this without him. When my back hurts, he massages it. When I am exhausted, he grocery shops, cleans the house, does the laundry, cooks dinner. When I am beating myself up emotionally, he reminds me to be gentle with my broken heart and spirit. He is everything to me.
I also want to give a little extra thanks to a few of my amazing friends. You know who you are -- the ones that shoot me a quick text to see how things are going or to say they are praying for me, the ones that make the effort to make plans so we can spend time together, the ones that let me talk their ears off on the phone or when we get together - even if it's about sad things like this damn disease. I truly feel so blessed to have such amazing, inspiring, and thoughtful friends in my life.
Please keep my family and I in your prayers this next week as I head in for my scans on Wednesday morning. It will no doubt be a bit stressful, but I pray that we are learning to navigate these waters with a little less anxiety and fear than we have in the past. I won't get my results until January 3rd. I could have tried to get them earlier before Dr. F goes on vacation, but I wanted to enjoy the holidays without the fear of bad news. So, please pray that we are too overcome with the holiday spirit and joy of being surrounded by family and friends to worry about these results.
Thank you for your continued love and support.
Addendum 12/14/12 - After going back and reading this post, I just want to add that I do feel very good most of the time. And, I don't mean to complain. It just so happens that I usually feel the urge to blog when I am a little bit emotional. It always helps to release my feelings and emotions this way but I hate to sound like I am complaining so much. I am grateful that I feel as good as I do and that I have a great quality of life - despite the annoyance of the fatigue. Thank you for understanding and bearing with me as I try to relay the realities of what my life is really like, while also expressing my gratitude for the many blessings that I know I have.
And because a post is always better with pictures....a quick glimpse into my recent happenings over the last couple of weeks, courtesy of my lovely iPhone....
My blog to keep you all