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!
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...
I couldn't remember if I had a previous post with this same title, but it doesn't even matter if I repeat it because there is no better phrase to describe how I feel lately. I am exhausted. Wiped out. Completely drained. I don't think all the effects of radiation hit me until the very end, and now that they have, I am reminded of what true fatigue really is. It is much more than feeling a little sluggish, having heavy eyelids, or wanting to kick your feet up for a few minutes. The fatigue I feel is the kind where I could fall asleep at a red light. I wake up with my eyes burning as if I never slept because even 9 or 10 hours of sleep isn't enough. It's a level of fatigue where I arrive at the gym feeling like I already worked out for over an hour even if I just woke up. It's hard to explain unless you have experienced it. I will admit, however, that I have also been doing way too much and trying to live my life like the "pre-cancer" Meghan did...and I guess I am realizing that I am just not ready for that yet.
Thankfully, Monday did end up being my last day of radiation. Yahoo! It is so nice to have this phase of my treatment behind me. Although I do love Karmanos and all the people there, it is really nice to not have to wake up each and every morning and drive there for treatment. Of course, I am still there a few times each week for other appointments, but the fact that radiation is now over is a huge relief and weight off my shoulders. I was a little fearful throughout all my weeks of treatment that my tissue expanders would rupture (a 20-30% chance), or that I would have a terrible skin reaction. Aside from what now looks like a pretty good sunburn, and of course the fatigue, I faired well through the entire process. I will continue to apply my topical steroid and Aquaphor on my skin three times each day and will have to wait and see how it heals. Dr. R (my radiation oncologist) informed me that the normal course of healing is that the skin will stay red for awhile, then turn darker and almost tan looking, until it finally peels off.
It worked out great that my last day of radiation was MLK Day and Mike had the day off. He came with me and snapped my picture as I got to finally ring the bell signaling the completion of radiation. All of the staff and patients clap, hug and celebrate you once you reach this milestone.
Instead of things calming down a bit once radiation ended, the exact opposite happened. I guess subconsciously I thought I could return to my old habits of running around like a mad woman, accomplishing a million things in a day. I succeeded at that for a couple of days but the reality of what my body is dealing with once again set in like a huge smack in the face. I doubt I will even get off the couch today.
Between Monday and Wednesday last week, I had 6 appointments to go to! I swear, you would think I have all this time on my hands since I am not working right now but managing my appointments and medical care is seriously like a full time job. But I also got to do fun stuff too like the weekly Monday take-out and reality tv show night with Katie, a lunch date with Elizabeth and her little Luca, and I spent the entire day on Thursday in Ann Arbor with Julie, Will, and sweet 6 day old baby Mae. Check out this cutie....
Last night we had a great family get together at my Aunt Erin's house with my brother, cousins and their spouses. It was so nice to spend time with members of my family that I don't get to see nearly enough. Before we knew it, it was after midnight and I was finding myself struggling to stay awake.
This week will include another few doctors appointments and my two monthly injections into my abdomen - fun times! ;) But most importantly, we have learned that Mike has to have a surgery of his own on Tuesday. It should be a very straightforward outpatient procedure to remove a cyst on his tailbone that he has had for a few years but has really started to become a problem. In true Mike fashion, my selfless husband has not really been honest with me about how much pain he has been in and how much this was bothering him, until recently. The surgeon said it will likely continue to get worse and that it needs to come out. Due to some travel plans and Mike's upcoming baseball season, he wanted to have the surgery ASAP. So it looks like we are going to have a little bit of a role reversal for awhile....Mike will get to be the patient and I get to play nurse. To be honest, I don't like it. I am so grateful that normally I am the one that's the patient because I would be such a nervous wreck if I had to watch Mike go through what I have been through these past few months. Even though this procedure should be smooth sailing, I am worried and don't want to see Mike in pain. The surgeon said that these wounds almost always get infected so rather than closing it up all the way, the site will be left open and I will have to pack it with gauze and keep it clean. Please keep us in your thoughts and prayers for a quick and easy procedure and complication free recovery. Although Mike is hoping to return to work after one week off, his surgeon said a full recovery should take 4-6 weeks, which means no running! If you know Mike and how many miles he runs every week, you know this will be a huge sacrifice for him. Say an extra prayer that he doesn't lose his mind, or drive me crazy with his restlessness. :)
ps - I forgot to mention that I did see my oncologist, Dr. F for my 6 week follow up since my last blog post. No huge news to report except that my scans are now scheduled for the end of February. I would appreciate all the prayers you can muster up that my scans continue to be as great as they were last time - progression free and healing taking place in my spine. Thank you! Thank you! Thank you!
The alarm starts beeping at 8:10am and it's amazing how exhausted I feel. Wait, how is this possible? Didn't I just sleep for 7 or 8 hours? Ah yes, then I remember that the word "sleep" doesn't really have the same meaning to me anymore. Every night I crawl into bed and shiver in my pj pants and tank top, hoping that the chills will subside once I snuggle up next to Mike since he radiates heat like nobody's business! Once I stop shivering, my body starts to relax and I begin to drift off to sleep. Could be just an hour or maybe three or four and I awake to feeling like I'm on fire - hence only the tank top to bed. Sweating, wet, and feeling like I can't rip off the covers fast enough. Oh hot flashes and night sweats, how I loathe you. Thank goodness for my trusty remote to my ceiling fan because I honestly feel like I am sunbathing in the middle of the Sahara. Poor Mike usually wakes up to the cool summer breeze that I just created during the dead of winter in our bedroom and asks through his sleepy haze if I can shut it off yet. Sorry dear, grab another blanket because I am roasting over here!
After awhile the fire slowly dies down and I am able to curl back up in bed, pull the covers up and try to fall back to sleep. But, have you ever worked out, sweat, and then come home and sit around for a bit in wet clothes? If you have, you know that the next thing that happens is your body gets freezing cold and chilled. So here I go on the opposite extreme - shivering, slightly pull on Mike's shirt which he instinctively knows means to roll over and spoon me to try to warm me up. Do I get out of bed and put on a long sleeve shirt? No way Jose! Because by now you should see the pattern and realize that long sleeves will be my arch nemesis when I am hit with the next hot flash in another few hours. And so the cycle continues.
All the while, tossing and turning from one side to the other. No longer able to sleep on my stomach like I have for 29 years due to these tissue expanders in my chest. I am naturally more comfortable on my right side compared to my left but I often awake in the night worrying - "have I laid on my right arm for too long", "am I causing too much compression", "is this going to cause lymphedema issues", "crap, my hand is numb, better turn over". Then mix in the bouts of relentless itching across my chest that often happen in the night - but I'll get to that in a bit.....Ah yes, now I remember why I am so tired when that alarm goes off.
After a few minutes of hitting snooze, I drag myself into the shower, begin my morning routine, then off I go to radiation. I have completed 26 treatments so far, every Monday through Friday, and pretty much drive to Karmanos on autopilot at this point. It's my own personal "Groundhog Day". I leave at the same time every morning, take the same route, park in the same lot, am greeted with the same cheerful smile and "Good morning, Meghan!" from Felicia at the front desk as I scan my personal Karmanos ID card to check in. I immediately head to the private changing area for radiation patients and go directly into Room #2. Not sure why but I have gone into Room #2 for each of my 26 treatments and I am sure I will for the remaining 7. I lock both doors on either side of the room, place my purse in my locker, change into my gown, open both doors back up and head out the opposite side I came in - into a private waiting room just for radiation patients.
There is a row of comfy reclining chairs, a nice flat screen tv, and even a little basket of snacks. They treat us right at Karmanos :) For the first half of my radiation sessions, my appointments were in the afternoon so I often had to wait in my comfy chair for a few minutes until my name was called. Right before Christmas, I switched to the mornings when a spot opened up so I could just get radiation out of the way and get on with my day. Since making that switch, I rarely ever even sit down in the waiting room. The second I come out of Room #2, one of my lovely radiation therapists is standing in the doorway, greeting me with a smile and telling me they are ready for me.
As I exit my cozy little waiting room, I head down a hallway that has a massive door in front of it. Plastered on the door are bright and bold "CAUTION" signs welcoming you into the wild world of radiation.
As I turn the corner at the end of the hall, I am greeted with this big guy pictured below - the external beam radiation therapy machine. He's not as intimidating as he looks, I promise. The tv screen in the upper right corner of the picture below has my lovely face plastered on it (a really hideous picture, I might add!) and it's at that point that I have to say, "Yes, that's me. Let's get this party started!" I untie my gown, jump up on the table and get myself in perfect position...top of head aligned with the top of the headrest, right arm out of gown, left arm at side with hand on hip, legs straight and uncrossed, feet together, right arm stretched out to side and supported in armrests, head turned to left side. Normal breaths, no deep breathing, no holding the breath. No itching, no coughing, no movement of any kind. Relax those muscles, let the shoulders come down, release the tension in your traps. Like I said, it's Groundhog Day - I have this down to a science by now.
The picture below allows you to see what is underneath the sheet that I lay on. The circular blue object is a headrest, and the two blue objects on the left are where I rest my arm in order to leave my chest and axilla exposed. There are numerous dials and switches, allowing for customization for each patient. They have this set up perfectly for me before I enter the room each day based on the measurements they collected during my very first visit.
Once I am positioned properly on the table, the ladies read off various numbers from the tv screen which list all of the parameters for my radiation treatment. They use those numbers to make sure I am in the exact same position for every single treatment. The table is elevated, pushed back towards the machine, and moved centimeter by centimeter into the right position. They then turn off the lights, which then allows green laser beams to become visible. These laser beams are used to make sure they line up with my radiation tattoos (yep, permanent ones!), so that they can ensure I am in precisely the same spot for each treatment. Once I am all lined up and ready to go, the therapists turn the lights back on, race out of the room, and close that huge door I previously mentioned in order to protect themselves from the radiation.
The first round of radiation comes directly head on while my chest is positioned exactly under the circular part of the machine pictured above. I know shortly after the ladies leave the room that a loud noise will begin, accompanied by a red light indicating that radiation is taking place. I close my eyes at that very second, as I have for each treatment session since the very first day, and I visualize the radiation destroying any last remnant of disease left in me. Not just in my chest, but everywhere. I visualize these nasty cells being vaporized and replaced with nothing but healthy and revitalized tissue. When the room becomes quiet again and the red light shuts off, I open my eyes. The ladies come back in and change the position of the table to line me up for treatment #2 which comes on an angle from the left side of my chest. The huge machine rotates around me until that circular arm is in place and after I am properly positioned, the process starts again. During the third and final round, the arm of the machine rotates all the way around to the right side and radiates from that angle. Within 10-15 minutes or so, I am hopping off the table and on my merry way.
Up until last week, I also received a bolus treatment every other day. This meant that a soaking wet towel was placed over the entire radiation field over the right side of my chest and axilla. The wet towel simulates my skin so that the radiation treatment ends up being more superficial those days, targeting my actual skin versus the deeper tissues in my chest. This was stopped last week once the skin on my chest started to become redder and more irritated. The week after Christmas I started to get more of a burn on my chest and then little red bumps appeared, similar to what happens when you get sun poisoning. Dr. R, my radiation oncologist gave me hydrocortisone cream to start applying on those areas in addition to the Aquaphor that I have to put all over my chest three times each day since radiation started. Over the next few days, my skin became redder, more itchy, more irritated. It was so bright red, like a very severe sunburn. Then on Monday I noticed a blister - uh oh, this is no good. I stopped using the hydrocortisone one day and swore I noticed that my skin looked better. Well, I have come to trust my gut instincts so much more these days and I started to feel like maybe I was having some sort of reaction to the hyrdocortisone. To make an even longer story shorter, although it would be extremely rare, Dr. R believed me when I told her my theory so we stopped the hydrocortisone and switched to another topical steroid. We also stopped the bolus treatments at that time to give my skin a break. Well, what do you know - my skin has become dramatically better ever since and it turned out I did have an allergic reaction to the hydrocortisone. I am so glad we figured that out and that my skin is a little less irritated.
Aside from the skin issues, the fatigue is really getting to me. I am still staying super busy but I feel exhausted by the end of the day - sometimes even by the middle of the day actually. :) I have also headed back to the gym so that wears me out a bit too, even though I know it's worth it. Katie and I were always gym buddies before I was diagnosed - we are a perfect pair together because when one of us doesn't feel like going, the other one makes us go and get that workout in. Well, my gym membership has been on hold all these months during treatment but I knew I wanted to go back right after the new year. Katie just had sweet little Alice this fall so she was just now ready to go back too. It was perfect timing for us to get back into the groove together. We made it to the gym four times together last week and we plan to do the same each and every week - and it feels great! I am taking it slow and not being too hard on my body but it sure feels good to be exercising again and I am more motivated than ever now that I know my health truly depends on it!
That's the latest and greatest with me. Threw a lot of info at ya this time, huh? Well, if that wasn't enough and you would like to learn more information on exactly what radiation therapy is, the purpose and how it's administered, please click here.
Addendum - After writing this post I just found out that some things may change and Monday might end up being my last day of radiation. Yay! It's a long story and a little confusing and I won't even know until I get there on Monday if it's my last day or not but that would be great to finish up a little early. Keep your fingers crossed. :)
Before I wrap up, I would like to wish my big bro a very HAPPY BIRTHDAY! Jeff, I know I was the annoying little sister that followed you around, bugged you and your friends, and always got on your nerves as kids. But I am so grateful that we have grown up to be such great friends. You have always been there for me - sticking up for me to an elementary school bully, driving 5 hours to pick me up in college just to immediately turn around for the drive back just so I could come home for a visit, to bringing me dinner and hanging out when I am not feeling like getting off the couch these days. You have been so supportive these past 10 months, and I hope you know how much that means to me. I love you very much and I hope you have the great birthday you deserve. Looking forward to celebrating with you tonight.
ps - please don't kill me for posting these pictures of you...I couldn't help myself! :)
We've come a long way from our curly little afros...except I happen to be rocking an afro again these days - darn it ;)
This week has been filled with all sorts of up's and down's which has led to this post being delayed a bit. It seemed like every time I would sit down to write, I would feel a certain way and when I would come back to finish it later, I would be feeling a completely new set of emotions and delete everything I had previously typed. So, where to start?...
We had a wonderful Thanksgiving, followed by a great weekend in Chicago to celebrate our friend Mike's wedding. We had a really fun weekend and it was nice to catch up with some old friends that we don't get a chance to see too often.
On Monday, I headed back to see Dr. M (my plastic surgeon) and after one more fill of my tissue expanders, he gave me the okay that we could be done with this step so I could move on to radiation. So, come Wednesday morning I was back at Karmanos for a couple hours getting all geared up to start this next leg of the journey.
I met with Dr. R (my radiation oncologist) for awhile to talk about how I have been doing post-surgery, and to go over all the potential risks and side effects of radiation. Oh you know, just the unavoidable scarring down of up to 1/3 of my right lung, potential demineralization of my ribs putting me at risk of fractures, possible rupture of my tissue expander, lymphedema, fatigue, and burning/scarring of my skin...just to name a few. No biggie, just another day in the life of a cancer patient...being constantly faced with choices that bring uncertain and potentially dangerous outcomes no matter which way you go. Radiation brings many risks, but I feel that lingering cancer cells pose an even greater risk...therefore, the choice is to let the radiation begin! I will have radiation treatments every single day (Monday through Friday) starting this Monday, all the way through the end of January. However, we have decided to hold off on radiating my spine at this point. This is a much more dangerous area of the body to radiate, and a place that we don't want to radiate unless we really have to. Right now, I am not really having symptoms of back pain due to my cancer. I have an achy and sore back most days, but it is more due to deconditioning and fatigue, rather than the metastases. So, for now we will wait and see how I feel and if the time comes when pain becomes a bigger issue, maybe we will radiate.
After meeting with Dr. R, I headed in for my CT simulation. This is when my radiation therapist and Dr. R used a CT machine to determine the exact location and size of the area to be treated. After a bunch of different marks and assessments, I received 4 permanent little blue tattoos to mark where the radiation beam would be directed at each of my treatments. My right chest wall will be the area radiated, so I now have one small tattoo under my right collarbone, one over my sternum, one near my waist on my left side and the last one near my waist on the right side. After this procedure was over, I received my usual monthly injection of Zoladex (the one that suppresses my ovary function), and also received my first injection of Xgeva, which is a bone strengthener that I will be getting every month from now on. Needless to say, when I left Karmanos on Wednesday afternoon, I truly felt like a human pin cushion.
Last Wednesday night, Dr. R called me which made me a little nervous to say the least. Luckily, all she wanted to tell me was that I needed to have some of the saline removed from my left breast so that it wouldn't interfere with the angle of the radiation beam. I knew that some of the fluid may need to be removed but I was completely shocked after leaving Dr. M's office on Thursday afternoon when they removed nearly half of the saline from my tissue expander. I had a "little" meltdown in my car while driving home - for the first time, I truly felt so sad about how I looked. I worked so hard to tolerate the quick expansion of my expanders and I felt that all of the discomfort I went through was for nothing. Now I am left with this stretched out skin and a deflated looking breast and it was just an emotional moment for me. I didn't realize how different it would look after having 150 cc's removed and for whatever reason, I just lost it. I rarely complain about all of the things my body has had to go through - how I have been poked, prodded, cut up and stretched. I know that it is not the biggest deal in the great scheme of things. But the simple fact is that sometimes it's just a lot to take. I know my dissatisfaction with the way I now look will only be temporary but sometimes I just need to let myself be upset and then I can move on and get over it.
Thankfully, immediately after pulling myself together from that appointment, I left to pick up my wonderful friend Meredith and we headed to our support group meeting. I always feel better after going to those meetings and it was just what I needed that day. We had five new people attend this time and I am grateful for the love and support each person brings to the group.
Friday I visited many of my old co-workers at the Rehab Institute of Michigan and it totally made my day to see them. I am grateful for the time I spent working there and the friendships I made because many of these women continue to be my biggest supporters as I go through this battle.
The real part of this week that has weighed heavily on my heart is hearing the news that a special friend of mine is not doing too well. This is a friend I have met along this journey, who is also battling cancer. We have so many crazy connections and similarities (not to mention we were born on the same day!), and she was diagnosed with advanced cancer just about a month after me. I have spent much of this week worrying about her, praying for her, and trying to remain positive about my own health while being faced with the devastating reality of what this disease can do to a vibrant, beautiful 29 year old woman like her. If you could please say some extra prayers for my friend and her family. Prayers for healing, decreased pain, strength, and peace as she bravely continues this fight. I would really appreciate it.
This upcoming week will be another busy one filled with daily radiation appointments, the start of therapy for my chest muscles and shoulders, holiday shopping, and a few special events in the evenings too. Please keep me in your prayers, because I know they are helping me each and every day. Although I make sure to enjoy each day and I am very optimistic about my future, it doesn't mean that there aren't daily struggles and it is your love, support and prayers that help me through those times.
Loved spending time with some of my favorite ladies the night before Thanksgiving
All dolled up with my handsome husband at Mike and Noreen's wedding! ....ps-can you tell the hair is starting to take on a life of it's own?!
My beautiful friend Julie and her husband Joe were at the wedding too - so glad we were able to spend some time in Chicago together. Love you, Poo!
We finally received the good news we were praying for! Thank you, Lord!!! And thank you to all of you, our amazing family and friends for your non-stop prayers and well wishes - it definitely paid off!
I am totally wiped out from an extremely long and exhausting day, so hopefully I include all of the important details. We had long appointments with both Dr. F and Dr. B today which meant we were at doctors offices from 9:45am until 3pm with a one hour break for lunch in the car while driving. It's all worth it though, for such great news!
We met with Dr. F first and he informed us right away that the test results looked great! He said that the CT, MRI, and bone scan showed the following...
--breast tumors demonstrate significant shrinking
--axillary lymph nodes demonstrate shrinking
--there is evidence of healing in the bone throughout my spine
--no new evidence of disease! BOOYAH! (okay, not exactly Dr. F's words)
Overall, this was the best possible news we could have received and we couldn't be more relieved and thankful! I am so grateful that these past five months of chemo haven't been for nothing, and that the cancer is actually responding well. Dr. F was very pleased and said that we are definitely headed in the right direction. He said that the imaging studies will always show abnormalities throughout my thoracic spine where there has been cancer, but now there appears to be evidence of healing. He even said that I may not have to have radiation to my spine, which would be wonderful!
The rest of my appointment with him consisted of formulating our plan of where we go from here. So, here's the latest...
--start hormone therapy (Tamoxifen) - a daily oral medication which will interfere with the activity of estrogen, which is what is feeding my cancer
--start Zoladex - a monthly injection to suppress my ovary function. This will shut down my ovaries and stop them from making estrogen so that the tumors cannot get the estrogen they need to grow. This also means MENOPAUSE! Just another "perk" of having the big C. ;) Who would have thought I would start menopause at the age of 29?!
--after surgery, start Denosumab - a monthly injection to strengthen my bones and try to protect them from further damage due to metastasis
So, today I started the Tamoxifen and received my first injection of Zoladex - a humungous needle which is injected into my abdomen = fun times! I will have a follow up appointment with Dr. F in 6 weeks and will be re-scanned every 6 months at the absolute latest - it could be earlier than that if I am having any new symptoms or concerns.
After a collective high five between Mike, Mom and I, we nearly skipped out of Karmanos and headed over to Beaumont to meet with Dr. B. After a physical exam and review of my imaging results, Dr. B also informed us that she was very pleased with my progress. She said that she didn't expect my cancer to respond so well to the chemo since it normally responds best to the hormone therapy. We met with Dr. B for at least an hour, discussing all the details of the surgery, what I can expect, and what recovery will be like. Dr. B's wonderful nurse, Linda then used this great new device to take some measurements of my arms in order to compare them to post-op measurements to track any possible lymphedema. Lastly, we finally set our date for surgery. Friday, October 14 is the big day for the bilateral mastectomy. I am definitely nervous about it but happy to finally have a plan and know when it will be. This will give me some time to get my energy level and blood counts back up since they are still pretty low due to chemo.
So, that's the latest and greatest news! More upcoming appointments on the horizon are...
--meeting with Dr. M my plastic surgeon on October 3 for final preparations before surgery and the start of the reconstruction process
--meet with another new team member, Dr. R who is a physical medicine and rehabilitation doc at Beaumont to take more pre-op measurements and assessments. He will also be the one to let me know what my restrictions after surgery are and when I can start physical therapy in order to get my range of motion back in my arms....good thing I have some connections to some awesome PT's :)
--meet with another new team member, Dr. R who will be my radiation oncologist. I will meet with her before surgery to discuss our plan for radiation to my right breast and chest wall, and possibly my spine. Radiation will start about 4-6 weeks after surgery.
As you can see, it's going to be a long road ahead. But what better motivation to forge ahead than receiving such terrific news, like I did today! I can't thank you enough for being there for me - for all of the texts, phone calls, emails, blog posts, and facebook messages I received in the last couple of days. It truly makes me feel better to know that I have so many people praying for me - you guys are the best! Keep the prayers coming because we still have a long way to go. But for now, I will bask in this great news. For the next five weeks, I am going to focus much of my attention on trying to regain my energy, slowly begin exercising again, and taking the absolute best care of myself in anticipation of surgery. And you know I will also be mixing in fun times like this Saturday at the U of M game (thanks Aunt Clare!), a friends wedding, taking my hubby to a great concert, many birthday parties, strutting my stuff in a charity fashion show, our fundraiser on September 25, trips to the cider mill...and much more! Thanks again everyone! And thank you God for answering our prayers!
In honor of the coming of my favorite season, here are some fall pics from a wonderful trip to the U.P a couple of years ago...
My blog to keep you all