My journey through breast cancer. Thoughts. Links. Fellowship.
In 2014, I was diagnosed with breast cancer. The following is my journal of thoughts I had along the way. Hopefully, this page will help or give fellowship to other women going through cancer. If you have a cancer blog you'd like to share, add a link in the comment section below. Let's learn and survive together!
11/19/14 I have to admit to say "I have cancer" seems at this time to be like saying "I have been abducted by space aliens". Maybe that is because I am in the "denial stage". But if it is, I don't mind the out-of-body surrealism of this mind set because it helps me dive into what needs to be done with a decent attitude. I'm ready to take on the task that lies ahead with a smile. Going for tests, meeting with doctors, and telling the news to family and friends has been smooth and easy running. Seeing people getting emotional over me is kind of weird. I understand what is going on and why people react the way they do, but I, personally, feel fine and in good humor. If my great attitude is because I am living in denial, then keep me living in La La Land through this whole event and wake me up when we're done! I believe that in all things in life we really have control over only one thing : our attitude. Whatever happens, we can choose to be happy or miserable. If the only thing I can control right now is my attitude, then why not choose to be happy and look for the silver linings in everything that happens?
11/28/14 A co-worker gave me this quote below. I agree with the sentiment.
"The longer I live, the more I realize the impact of an attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than success, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company ... a church ... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past ... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude ... I am convinced that life is 10% what happens to me and 90 % how I react to it. And so it is with you ... we are in charge of our attitudes."
- Charles Swindoll
12/3/14 When I went on for my mammogram last year, we had to do a double check for a very tiny spot in one breast. Turned out to be "fibrosis" which was just non-cancerous scar tissue. No need for further investigation. In hind sight, we should have asked "why is there scar tissue where we never had it before". If I had a time machine, I would not have accepted the answer that it is just part of the aging process in some women. As it turns out, it was scar tissue forming because cancer cells were starting to leak out of a duct. The cancer cells were too small to show up on the mammogram. We needed an MRI. But who knew with no family history to warn us? I guess some times it is good to keep asking questions and not accept the usual answer.
FREE HUGS! Chemo Hat #1 kept the rain off the curls coming home from my first round of Chemo yesterday. The day could not have been more wonderful. I woke to e-messages wishing me luck & love. The staff at the D'Amour Cancer Center were friendly and welcoming. Had a wonderful time with my Mom and a surprise visitor. My friend and survivor Lisa popped by to chat. Hearing her story first hand really helped ease my Mom's fear of the unknown. Caregivers need lovin' and help too, remember!
The after hours passed without any major issues. Thanks to all the prayers and healing thoughts! Keep them coming! I think the fear of the day was the worst obstacle to pass. If you have to go through this, trust your caregivers and don't worry about what you can not control. Take everything one step at a time. Relax!!! ... And drink your 8 glasses of water!!!!!!
The night after my first chemo round I awoke with some irritation (very minor pain) in my breasts. My friend Rose told me of another friend who handled her pain by imagining that it was the chemo fighting the cancer. Then I remembered an old trick for fighting migrains that another friend, Sue Kroyer, told me way back in the eighties. Find the pain and follow it to where it begins. Focus hard on that center and the pain will dissapear. As it dissapears, imagine it leaving the body. You know, I tried this and the discomfort did dissapate. Not completely. But enough for me to relax and keep the pain under control. If you look at this scientificly, pain is the warning signal the nerves are sending to your brain to tell you there is a problem. Focusing on where the core of that problem is helps locate where that emergency warning button is located. Once located, it seems like the brain knows what's up and no longer needs the alarm to sound. So, the pain message is turned down. In short, mind over matter does work. It may not cure the problem, but it will help you COPE with it. And being able to cope - then relax - will in turn help you heal.
The problem of being prepared is you enter the arena armed with knowledge of all that could possibly happen as a result of your current task. Your brain instantly imagines the worst and replays scenarios of how you will be affected. I think those little mind games are harder to handle than the actual reaction that does accure. But you can not be unprepared. You have to know what to do. The trick is not to let the unknown overwhelm you and just focus on dealing with reality only.
I was warned that the chemo drugs will make me nauseous. I was given various pills to take if I do get really sick to my stomach. But wait... I am not the least bit nauseous! Actually, I am the opposite. I am super hungry!!! Painfully hungry! All the worry and mental prep I did ahead of chemo was for naught and I had no idea what to do. Come to find out, my doctors said that sometimes increased stomach acid could make me feel hungry. So, they gave me a pill for that and - behold - tummy is fine. I've always been that one percent that gets the flu when they take the flu shot. Meds don't always hit me the "normal" way. So, talking to my doctors was a great idea. No worries. They have it all under control. Just put down your reading and open your mouth and talk. There's no dumb questions here.
Make The Ordinary Extraordinary! That is a lesson I learned growing up in my family. Easter meant bonnets and lace gloves as little girls. The Fourth of July Side Walk Coloring Contest had us dressed in home-made colonial outfits. On Thanksgiving, we would dress as pilgrims and indians while performing sketches on our hearth. Christmas? You bling yourself out like a Christmas Tree! No tee shirts and casual wear here. We always look for ways to make a day more than special. And why not? You remember the special days and I want to remember everything! If I am going to have only one life, I want it to be SPECTACULAR!
So when I woke Christmas morning with the first falling of fluff from my head, I knew we would have to make a party out of this little gift. On the 27th, I pulled out my sheep decorations, (doesn't everyone have sheep lying around their house?), and had Momma Sue's Sheep Sheering Party! My kids enjoyed the show but refused to take hold of the razor. My husband took the reigns with a side assist from my Mom as my Dad took photos. We all had a great laugh making my hair doo look funny on its way out. Now, I look like my gorgeous, bald, hubby. BONUS! Now, let's see what else we can do... maybe a temp-tattoo party! Let's have fun while we are here!
Have a WONDERFUL New Year! My New Year's resolution is to get better at separating imagination from reality. It's good to be well informed before starting an adventure. Before starting chemo, we learned all we could about what may happen - side effects and the whatnot. We were ready for whatever might come and knew how to handle ourselves. Of course, my imagination kept playing scenarios over and over in my head. When reality hit, I was relieved to find the worst did NOT happen. I had an easy time with minimum side effects. The worst thing that happened was my imagination. Worrying about what might happen was a waist of time. I need to relax and trust that whatever happens will be fine. Worry only when it actually happens and not before. So far, reality has given me nothing to stress over. So, this 2015 will find me being well informed about my adventure but not stressing over what is not yet reality. Live each day for the day and stay relaxed to let the healing take over.
I had to miss my dental appointment. The dentist office is no place for someone whose imune system is running on low from chemo. Get your teeth done before starting! The dentist told my husband that along with brushing I should use a mouth wash everyday to keep my mouth healthy. But not just any wash. It has to have the floride in it or it's junk. I was surprised at how few washes have the floride. Check the labels! Chemo has made my mouth sensitive. I find the rinse does help keep it healthy.
Chemo Fashion Tips: Everyone talks about the hair and how you should cut your hair really short before you begin. Even if your hair doesn't fall out or you are doing surgery first, you won't have to fuss with hair and life will be easier. When it does start falling out, buzz it down so your shower drain will love you. :) What no one mentioned before hand was fashion prep for the port-a-cath.
If you are getting a port in your upper chest (as opposed to the arm), you will need wide scoop-necked shirts that will expose the port for access during chemo. But if you don't want the kids or guests to see your surgery, make sure you have some high neck shirts to cover things. I have a ton of scoop-necked shirts, but no high collar. So, scarves are great for hiding things and they are so in fashion right now.
Now, here is a BIG note. The super glue they use to close things up in surgery is flexible and therefor a little tacky (sticky). So, wear a shirt to surgery that is close to your skin color. Do NOT do what I did and wear a soft cotton BLACK shirt. The cotton fibers stuck in the tacky glue and I had to walk around with black spots until the glue wore off. Nasty!
Also something to think about... They said it might be more comfortable coming home after the port-a-cath surgery to leave my bra off. Fine if you are petite. But if you are a ... um ... "husky" gal like me, you may want to keep that support on to keep the weight of things from pulling on your sensitive surgery spot.
They also warned me about how the car's seat belt over the shoulder will be aggravating and need to be adjusted so it does not sit on the port. But winter clothing can also be an issue. The weight of heavy sweaters and coats pushing on the sensitive surgery area is uncomfortable to say the least. I switched over to a light weight fluffy ski jacket. TONS of insulation with half the weight of a wool or fabric coat. After the surgery heals and you get use to the port being there, the irritation of it will go away. Just dress for comfort in the meanwhile.
One last note if you are out shopping for supplies before you begin... Buy plenty of tissues. Your nose and eyes will run nonstop. I also find my emotions to be a bit weepy too. I filled my car, purse, office, and bedroom with tissues and hand sanitizer.
I just picked up my wig this week. Excuse me ... my "cranial prosthesis". Isn't that a fantastic way to say "hair piece"?! I was ready to frame the prescription I received for it. Mark that up on the list of things you'd never thought of seeing in your hand. Anyhoo... I went to the Pink Petal in South Hadley, MA. Run by Donna Reed, the Pink Petal had a wide assortment of wigs for me to try on in the comfort of a private lounge. Wonderful ladies! Wonderful service! I was thrilled with the choice we made and the help I had in picking it out. If you are looking for some fashion from hair to shirts, hats, and jewelry, come see Donna at the Pink Petal.
I'm back and ready to party! Just finished the last A/C Chemo treatment and it feels GREAT to have finished a step toward wellness. Results so far have been very favorable. It occurred to me that I should probably run down my treatment plan for those survivors reading these posts. Most people I talk to have had surgery first before chemo. I am doing chemo first before the mastectomies. I'll need radiation after surgery. We finish up with reconstruction after the radiation. I'll run over my history to explain why we made this choice for treatment scheduling.
Originally, we found a 4.5cm mass in the left breast only. Grade 3 = meaning it is "undefined" or "a scattered mess" as I call it. LOL It is not a solid tumor (like a grape) that can easily be removed in a lumpectomy. They need to remove an area around the mass to make sure they get everything. So the mass to be removed was more like a 6 cm mass. We could choose to do a mastectomy first or do chemo first and see if we could shrink the mass and get away with just a lumpectomy. Theory being that doing more surgery than needed puts an added strain on the body that could be a problem. We decided to do the shrinking first with chemo. That way when we were done, we could see if we are good for just a lumpectomy or should go with a mastectomy. We had choices to play with depending on how treatment worked.
Before we started treatment, My husband and I went on a business trip to CA. While there, we received the results from the MRI. It showed more than originally seen. Not only was there several other grade 3 masses in the left breast, but the right side had several areas as well! The original mass was more than expected (7.5cm) and now both breasts were in trouble. We could put chemo on hold and do more biopsies to figure out exactly what the right breast was doing and how it should be treated. But we decided not to delay any treatment. We opted to go for the bilateral mastectomy (remove both breasts) after doing chemotherapy first. Since the mass was grade 3 and seemingly spreading rapidly, we thought it best to kill the growth and catch anything that might have been missed before it travels anywhere else. (Chemo goes through the entire body - not just the breasts.) Once we told the doctors our decision, we were told (by several doctors) that this was really not just the best but the ONLY decision to take in my circumstance. Every diagnosis is different. Every person needs to make a plan based on their own issues. We referred to several opinions and tests and were satisfied with the choice of treatment.
Now that we have finished the A/C Chemotherapy, The masses have shrunk very noticeably. I feel calmer knowing that we have stopped any advancements. Even if we can not see every bit of cancer, we can feel safer knowing that we probably have killed the things we didn't see. Knock on wood! In February, I will begin the Taxol Chemotherapy treatment. Should be easier than the A/C. So we are excited about that. We lost hair and had to watch our food and beverage intake to keep tummy troubles down. My allergies have been more sensitive during treatment and had to battle some face rashes and mouth sores accordingly. But nothing I can not handle so far.
I have such wonderful support and love pouring in. I think when you have cancer, you are put into the same box as baby puppies and bunnies. Even strangers glow with smiles and love for you. It could be because you make them feel better about their lives. But I like giving people a reason to feel good about themselves. SO, now on to the next phase of treatment armed with positivity pouring from within and all around. This puppy is ready!
I want to take time to give praise out to the Rays Of Hope. I have enjoyed walking in the Rays of Hope fundraising walk. Such a beautiful outpouring of community as hundreds of people come out in the chilly Fall weather to support survivors and cancer research. I knew they were raising money for cancer research and diagnosis. Now that I am in the program at Baystate Health, I find they do more than just raise money. When I was first diagnosed, I received all sorts of information packets, calendars, and helpful items to answer questions and start me on my adventure with the feeling that someone has my back. Each step of my treatments had more help packets and support numbers to call if I needed to talk to someone. While sitting in my chemo chair, a Rays of Hope volunteer would come by to "raise hopes" by offering friendly conversation while they massage either my back, feet, or hands. It wasn't just a quick back rub and 'good luck'. They stayed and kept you company for a while, making you feel like they were there for you and nothing else. The emotional support they offer is right up there with the fund raising they do. They help form a community that makes you feel that you are not alone and can reach out to fellow survivors whenever you need some emotional help.
Please check out their Rays Of Hope web site and join the Rays of Hope walk they do each Fall. I'll see you there!
Entering the voyage of cancer treatments can feel like you have been swept up and thrown into this bizarre new world like Dorothy into OZ. It can be a whirlwind of activity like riding a frightening tornado. You don't know what is going on. There are people flying all around you in a buzz of activity that seems foreign and questionable. Everything is changing and you feel you do not have any control. Yes. You have the right to be scared. But to keep from losing you mind and going to the dark side, keep a hold of your vision on life. You control how you look at what is happening - however strange and unknown. Remember there ARE 2 ways to travel to this new land of OZ. You can look through dirty, depressing windows of a broken home riding a scary tornado, or you can look through rose colored glasses and float comfortably in Glenda's Pink Bubble. I may not understand what is happening around me or to me. But I would rather float in a comforting bubble knowing that what is going on will eventually take me home to where I belong, than scream in a falling house.
I trust my team at the D'Amour Cancer Treatment Center. They have done this over and over and know what is going on. So, when they tell me to do something (like Glenda telling Dorothy to put on the shoes), I may not understand what exactly it does but do take comfort that they know and wouldn't ask me to do anything that would harm me. Glenda never explains how the shoes work, but they do. I wish it did take just 3 clicks of my heels to be done with this adventure. But as time goes on, I do know that I am being helped. And in that knowledge I find comfort and fear floats away. Every now and then a wicked witch pops up in my mind whispering fears. I just need to remember that a glass of water melts away problems and fears are only fears - not reality. I will make it home AND home will stay in technicolor!
Any change is scary. Cancer is especially scary since so much hype has been spread in movies and tv shows about how horrible it can be. But I have found that my reality has not been the melodrama expected. Yes, it is not a fun holiday. But it aint no scary tornado! I am greeted by a team of wonderful and supportive staff when I go for my treatments. They answer my every question and instantly address any issue I (or they) have. The D'Amour Center is warm, well lit with windows, and supplied with a kitchen filled with yummies. We can have guests keep us company as we eat popsicles and pudding. I am checked on regularly and offered beverages and massages. Even my fellow survivors are friendly and happy to chat. If you need privacy, pull the curtains around your chair. It really is a ride in Glenda's Pink Bubble. Very comforting. So, if you are afraid you might have to come to Oz with me. No worries. You are in good hands and just need to relax and trust the ride. You will survive. You will be fine.
I want to thank everyone who has been supporting me and my family during this adventure. Even with insurance, the treatments can be financially overpowering and stressful. But thanks to several guardian angels coming out to help, our fears have been lessened. Helen starting the Booster.com tee shirt event and Brenda and Tina starting the Give Forward fund raiser, while St. Michael's Parish is hosting a Drive Through Dinner, has all brought people together to see to it that we only have recovery to stress over. People who I thought no longer remembered me or even know me are donating to the fund raisers. Dinners have been sent to the house. Hats have been flying in to keep me warm. I can not believe the generosity pouring in! We are very, very touched and blessed.
Most importantly, I am honored by the well wishes pouring in. I read the comments people send over and over. This is a long journey. And at times I do find my spirits dropping. Reading the notes of love help me to keep going strong and not drop off into depression. It is amazing how healing a hug can be.
So if you are about to start this journey too, remember to not be frightened. You will find there is a support team out there ready to pop up when you need it. Embrace the love. Hold on to it. It will help carry you all the way. And at the risk of sounding even more corny, I leave you with the song of Gerry and the Pacemakers:
Happy St. Patty's Day. We are looking for good luck this week. Since we are nearing our end of chemo, (1.5 more months), we are starting to talk about what to do for surgery and reconstruction. Met with both the surgery team and the plastic surgeon. Filled our brains with information. Now to think things over and plan the next stage of attack. Chemo takes 5 months of infusions followed by one more month of recovery before we can begin surgery. It is a long time, but it feels good to be nearing the end of one of the steps.
In the meanwhile, the Taxol chemo is playing with my heart rate. Speeding it up randomly. Sometimes going up to 180 or 200 just while I am sleeping. Not good. But fortunately, not constant. Mostly happens when I am coming off of the weekly infusion - 3-4 days after the chemo day. So right now for a month I will be wearing a heart rate monitor. Taking things slow. Going for grandma strolls instead of full-out exercising. But if it is a side effect from the drugs, then my rate will improve after the chemo is gone. Yay! A cardiologist is checking things closely to make sure I didn't inherit an A-Fib or something. It does not look like I did. Heart looks healthy. But they like to make extra sure. Me too. Knowledge is good. :)
Just a quick thought: I really miss my nose hair. Nose hair filters particles from entering and helps bring moisture to the nose. In the dry winter, you really need that moisture. My nose bleeds all the time from being so dry. I really miss having nose hair more than the hair on my head. Funny that. The things you don't think about until they are gone.
Everyone is different. Every cancer is different. Every treatment is different. If you are afraid of getting cancer or going through the treatments, then take heart and worry not. You can read the lists of reactions people have to the chemotherapy. Get to know what lies ahead to be ready to handle it. But at the same time, do not worry over the reactions. You may not get them or at least be afflicted only in a small amount as I was. I was not bent over with nausea for five months. I did feel lousy and have to watch my diet to keep my stomach under control. But I could control the reactions. What we were not anticipating was having a reaction that was not on the list. Tachycardia is unique to my cancer and treatment. Some people do have their heart race as they tire and need more strength to move about. That type of heart racing is normal. What I was experiencing was a racing that would occur out of the blue with no physical action to kick start it. I would wake up in the middle of the night with a Heart Rate of 200. It would last for 12- 24 hours sometimes. Nothing started it and nothing would end it. I would just have to ride the racing out and hope that this time it would only last for a few minutes. I wore a heart monitor for a month and finally managed to dial in the correct dosage of medication to keep the rate to a healthy level. I have to move slowly and monitor what I eat and how I move until my chemotherapy is over and the drugs are out of my system. Tests showed that my heart is physically healthy so the odds are that this is a drug induced tachycardia and nothing inherited nor physical. We could not have guessed that this unique reaction would occur. But since it has, we can treat it.
I have learned to deal with issues as they come and not to spend time worrying about them before hand. Everyone is different. Every reaction is unique. The best medicine is to keep calm and worry not. Trust that when something happens, your team will have a way to fight it. Relax and travel the path you are put on knowing that you CAN deal with whatever comes your way. While you wait, do not worry about the 'what ifs'. That is a waist of time. Spend your time enjoying life and building energy to win!
Happy Spring!!! It feels so good to have warm sun on the skin again! I just have to remember to wear my hats outside with a little sun screen too for my poor little naked scalp. LOL My muscles and joints ache as the chemotherapy works its way out. But I am being a good little soldier and working through the discomfort to go for daily walks and do my yoga stretches. I have the month of May off to gain my strength back before my mastectomy in June. I napped alot during chemo to help make me feel better. But now, I need to regain the muscle strength lost from that. I'll need it when I go in for the surgery. I knew when I was sleeping so much that I would run into problems later. But I chose to deal with the problem at hand (the chemo side effects) rather than worry about what is down the road. I could have pushed myself a bit more. But I do have a month now to work out. My advice is to deal with the problem facing you today... One issue at a time so you don't drive yourself crazy worrying about everything at once. Take time to stop and smell the dandilions. :)
Keep distracted. It can be overwhelming to spend every minute of every day thinking about the Big 'C'. It can be down right depressing - which is not healthy. If you find yourself getting stressed over your treatments and starting to worry about having - well - your breasts lopped off, then it is time to find something else to think about. My surgery is coming up on June 3rd. Fortunately, I have a marvelous and all consuming distraction to keep my brain off of the mastectomy: My beautiful step-daughter is graduating just days before the operation! After all those years of preparation, we are getting to see her walk down that isle and receive her diploma - a symbol of our baby girl becoming a woman of intelligence, strength, and wonder! I am so proud of all she has accomplished and can not wait to celebrate her. Before that event, I get to indulge in the distraction of readying my camera for 1001 shots of her gang in prom outfits. I am soooo excited! I get to partake in the age old tradition of parent embarrassing their child with a camera. She can not refuse or I'll pull out my 'Cancer Card'. Can not refuse the 'C' Card. LOL! See... It can be a good thing at times. LOL! But seriously, having such a marvelous distraction at this time has been a blessing. I have been told that chemotherapy is the hardest thing to get through in the healing treatments. So I should not be worried about the surgery. But it is normal human behavior to fret over someone coming at you with a knife to remove parts of your body. Thinking about something else has been a great help to keeping my sanity. That and looking for humor in it all. I joke with my husband that the part of the breasts that do not get donated to science I will have saved in a Ball Jar for him to keep. Hee. Hee. We joke about how we will reconstruct the beauties later. Maybe go for something bionic. Where does Madonna buy her bras? Can I get snap-on boobies so I can switch out shapes depending on moods? Any suggestions? FB me with some! LOL
Keep laughing, people! We have only one life. Enjoy it!!!!
I am really fighting to keep my eyes open here. Ever since my bilateral mastectomy on Wednesday my body wants nothing more than to suck down water, pain pills, and sleep. But I know many people have been asking me for updates so I better get one down before I sleep for a hundred years. Good thing my Prince Charming is by my side waking me with kisses and more pain killers to keep me healing happily. God bless the care givers of the world. I can not imagine going through this without someone by my side. I was told that the mastectomy is easy compared to chemo and since I had no problem with chemo then surgery will be a breeze. Well.... For me personally, I think this surgery has been the hardest yet. Very painful. But we'll heal quickly. So in that, I guess it is wayyyyy better than chemo for 5 months! I will have to keep you posted more as we go. But for now, forgive me if I go back in for another nap. :)
Yesterday was my grandmother's 100th birthday. She was a loving, caring woman who passed away softly in her sleep one night when she was 96.
I would like to be like her. I use to wish I had her wit and patience. She had the lovely ability to make people feel at home and welcomed. I wanted to have her smile. As I wait for my fight with cancer to finish, I add to the wish that I will someday be able to go to sleep one night when I am 96 and pass away filled with calmness and love. There are so many stories out there about lives destroyed early by this disease. Even if you survive the first round, you may not survive a second. Cancer is serious. It is threatening. It can ruin dreams.
But as I fight my own battle I see that it is MY OWN battle. What stories I have heard were not MY stories. I am still writing mine and I have no idea how it will turn out, Currently the adventure rides well and we are winning with flying colors. I have a strong army supporting me and not letting me fall. I have lost friends and loved ones and seen other people close to me finish with success. Each story has its own adventure. Its own ending. I may not make it to 96. I may not fall peaceably in my sleep. But I know one thing... I will have my Grandmother's smile and open arms. No matter what happens in life, we succeed if we can face our battles with an honest smile.
My Pathology Report has arrived! I have had the bilateral mastectomies completed. Afterwards, they examined the material removed to see what exactly we had growing in each breast.
When first diagnosed, we knew about the left side and planned out treatment before we even received the report from the MRI for the other breast. We were surprised to find more questionable material on the right side. However, to stop and biopsy those new areas would have delayed our planned treatment for well over a month. Even if the worst diagnosis came back, the treatment would not change. So we decided to forgo the biopsy of the right and continue on as planned with chemotherapy.
The chemotherapy worked marvelously and drilled holes into our clusters! The right breast’s areas of intrigue all turned out to be negative of infiltrating carcinoma (aka – cancer free)! The chemo did help cure the nasty bits growing there. They just were not life threatening. Amen!
Now all of the “infiltrating ductile carcinoma grade 3” on the left side was reduced significantly with the chemo. 5 cm down to 4 cm. It originally grew and spread very rapidly. So it was great news to hear the growth stopped AND shrank. You could feel that happening during chemo without having to wait for surgery. But surgery did reveal in the pathology report what stage our cancer was in. Since our cluster was growing so large and quickly, we were afraid of the possibility that it could have been a 3 or even 4 = not knowing how long it had been living inside the duct before spreading. Now for those who do not know, the older the stage, the older the cancer and the higher the probability that it will be difficult to cure or that it might return. Stages go from 1-4 (4 being the oldest). Well… Our cancer turned out to be stage 2 – and an early 2 at that! It was just a fast spreader! Hooray! Now we removed it all so it cannot spread any more nor worry us about what might be. Great news! Thanks to all those who have been sending their support through prayers, well wishes, dinners, hats, and lovin’ vibes! It al worked!!!!!
Now, I am draining from the surgery. Since I had chemo first, I am taking a bit longer to drain. Once the drains are gone, then we can plan our schedule for the radiology. Since the left side had such a large tumor when we started it doesn’t mater how much it shrank, we need to continue with radiation anyway. Once the skin has healed from radiation, we can begin with the reconstruction. That will be several operations. We may not be done and healed with everything until the Fall. Oh well, as long as we can keep those pain pills coming, we’re good. I’ve never been one to use pills. I prefer the natural way to heal. But in this case… Ladies, take the pain pills! Go for them with pride and let the calendar pages flip quickly by.
As I continue on, so too will my breasts. They will be traveling on to a lab for scientific study. Hopefully they will help play some small part is finding the cure for a future Pink Sister!
I started radiation. All is going well. So much easier to do than chemo since it lasts for only 15 minutes where chemo was 3 hours. You don't feel a thing. The only difficult thing here is lying on the hard, flat, radiation table with my crooked back. It does force me to be diligent with my therapy stretches to increase my core strength for my back. I find if I go for a power walk and do my stretches before the treatment, my muscles won't lock up when I have to lie still during the zapping. Note to people with arthritis or other back issues who have to do radiation: If you have a problem being flat on your back, make sure you place proper supports under you BEFORE they mark your registration tats. Once marked, you have to lie that way every time. So get comfy before your start. No adding pillows later. Just saying.
It is a well known fact that I am no mathematician. That's one of the reasons I became an artist. So it is no surprise that I messed up the math for my radiation treatments. I was told I had 30 days of radiation. So, I jumped to the conclusion that 30 days minus weekends would mean I would finish after 4 weeks / aka 20 treatments. Welllllll...... Ladies, do not mix up days with treatments like I did. I do not have 30 days, but 30 treatments / aka 6 weeks. And just as predicted, as I finish up week 3 I am starting to look pink. They predict a redness by week 4. I wonder if I will glow in the dark by week 6. That could be fun!
Radiation is still super easy to deal with so far. My chest has been tender and sore to the touch since the operation. So, having a burn doesn't feel all that different. There are good days where I don't notice a thing, and bad days where I want to grab more pain pills than I should. Definitely have to wear support with the spacers. Keeps the girls from getting too sore by day's end. I recommend a cotton support bra that opens in the front. I find it easier to "button" up first then slide your garmet over your head. (Reaching around to grab it behind me and pull the arms up is a task.) To remove, undo the "buttons" and don't try going back up over the head. Let gravity be your personal assistant. Cotton breaths and helps keep the chest cool. The lighter the fabric, the better it will feel on your skin.
In short, my bad days come when I have done too much lifting. Watch how much you do with your upper body, ladies. The discomfort and pain I feel is nothing compared to having osteoarthritis in my feet and other joints. You know that joke about how you can make your finger stop hurting by stomping on your foot? I think that's what I am experiencing. My arthritis is keeping me distracted from my chest. I'm not sure if that's a bonus. But at least my chest isn't bothering me too much. Yay. Final word: Ladies, slather that lotion on at least twice a day and stay out of the sun during radiation. It will go by quickly. Stay strong, my Pink Sisters!
Hello! I am almost done with my 6 weeks of radiation. I have a lovely dark red rectangle across my left chest. Good thing I am very use to sunburns. I am familiar with how to handle the discomfort of being burnt. I apply a scent-free lotion twice daily (sometimes three times) to keep skin moist. Ibuprofen is great for helping to keep inflammation down as well as pain away. Loose fitting, light weight, cotton shirts help too. (I don't think the kids would like the view if I wore nothing over my burn. lol) My friend Michelle gave me armpit pillows for my surgery which I now use to prop up my arm when I lie down. The burn reaches around my side and is irritated by the rubbing of my arm. Never fall asleep at the beach with your arms above your head. A burnt armpit is no fun. But no matter how irritated my skin gets I have one thought to keep me happy... to quote a current toilet paper commercial: "At least I am not Constable Bob". I'm not that forgotten toy waiting for someone to come and sit on them. As odd as it may seem to imagine yourself a toy on a toilet, this add actually helped me feel better about the pain and nastyness I was going through. It made me laugh and start thinking of all the things I have to be grateful for and have going for me. When you are having a bad day, sometimes it takes something silly to remind you of what good there is in your life. And focusing on the good helps you make it through the not-so-good. Find your silver linings!
I completed radiation! The final week of treatments went very quickly. They made marks on my scar line and used an attachment to the radiation machine to shoot a small, more precise area. There was just a very quick zap. It took longer to line up the registration marks. The larger rectangle began healing its burn before we finished. It is less than a week after completely finishing and most of the burn has healed. Yay!
If you have had a bad sunburn, then you know what radiation effects are like. Healing from the burn, your skin darkens, cracks, and peels, leaving tender baby skin exposed. Skin on skin rubbing (like under your arm) can cause blistering or extra peeling. Keep skin moisturized but dry. Living in a humid area, I had to walk around with my arm up to keep the burn from getting sweaty and rub too much skin off. It is tempting to wear sleeveless shirts so nothing is touching the burn. But soft, lightweight cotton sleeves helped keep the skin away from skin and reduce the sweating and rubbing. Ibuprofen helped keep swelling down as well as coping with the sting of burn. I also took Benedryl allergy medicine. I am no doctor and don't know if that really had an effect. Check with your doctor before taking any. But I know a sunburn is an allergic reaction to the sun's radiation. So, I tried using the allergy medicine to curb how badly I was burnt. The nurses taking care of me did compliment me on how well I did - burn wise. So maybe it helped. I took it only just before bedtime, so if anything, it helped me sleep and deal with seasonal allergies.
A side note: I met with my cardiologist this past week. I have not had any tachycardia since 2 weeks after chemo finished back in April. (I kept having several reactions to the chemo for two weeks after stopping. I still have random side effects of sorts from time to time.) My doctor wants me to stay on the heart medication until after I am done with all my treatments including reconstruction. So, even though I can reduce the dosage, I still have to keep going with it. They still have no idea why I had that reaction. Fun.
So, in short: Radiation was harder for me to deal with than chemo since the burn was hard to ignore. The final two weeks found me questioning if I can make it through all the treatments. But it went much faster than chemo and in that was much easier to do and finish. Just had to take each day one moment at a time and keep moving forward. Naps helped. Naps always help. :) When I finished, I felt and looked so wonderful. I think I radiated with the joy of knowing that no more toxic stuff - be it chemo or radiation - will be pumped into me. From now on it is healing the natural way. I'm over the hump!!!!!
Just a quick note today. I am doing well. The radiation burn is all gone. It healed very quickly. No worries! I am walking and slowly regaining strength lost from sleeping and sitting all the time.
I am coming up on the one year mark next month. We will be doing some treatment or therapy of sorts well into next near. I am taking a drug now that I need to take for 5 years (yes, YEARS not months). It takes a long time to complete treatment and rehabilitation of breast cancer. I never realised until I was in the thick of all of this how invested one is - time wise. Even after this trip is done, I will still need to change my life style and live to be a survivor for the rest of my life. I do not want to give cancer any reason to come back. I now wear pink proudly. It is the badge of a warrior who has AND IS fighting forever to keep cancer down. I wil not hide my relationship with cancer. I will shout to the mountaintops that I have fought and WON this battle and will win too the long war.
If you are wanting some details on grades and stages of breast cancer, here is a nice website:
HAPPY BREAST CANCER AWARENESS MONTH!
How can we use "happy" and "cancer" together in the same sentance? Because anyone who has been touched by cancer is happy to be a survivor. Cancer's attack on one's life is such a life affirming experience that everyone touched by the challenge feels happy, proud, and strong. Caregivers have their lives turned upside down too. Let's not forget to celebrate the spouse, parent, or loved one who walks the path with the cancer patient. I know how emotional my journey has been for my husband. It is, afterall, OUR journey as we truly have one life togther. A tramatic event really makes us happy to be together and have the love we share. This October I celebrate, not only my relationship with breast cancer, but my husband's survival too. So, Survivors hug your parents, siblings, children, and significant others and celebrate your life!
Just a little update: I had follow-up appoitments with both my post-op people and radiology. Everything looks great and is healing well. So, I have been officially cleared from both departments. From now on, my follow-ups will be with just my oncologist every 6 months. Next step is to go back to plastic surgery for reconstruction. Hopefully, I will get a game plan when we meet tomorrow with that department. I will be thrilled when I get rid of the spacers implanted to stretch and prepare my chest muscles for reconstruction. They are very aggrivating. But with all the experiences so far, I must admit the forced menopause from taking the tamoxifen is the hardest to handle. I don't handle heat well. You can't take a nap until it goes away or stuff a bra or put on a wig to pretend it isn't happening. The metallic taste in my mouth from the meds, nausea, and hot flashes are in-your-face annoying. My research tells me I have 3-5 years of this if I'm lucky. Oh, joy. Good thing the cool Fall weather is hear. God bless all the ladies who are going through menopause!
(Added note 11/25/15: Never mind 3-5 years. I read that menopause could last up to 10 years! I know someone who is in year 13! With drug-induced menopause your hot flashes can be preceded with chills. I get a chill that is internal and no amount of clothing helps warm it. At least it lets me know that a hot flash is around the corner. Silver linings. Gotta look for 'em.)
The Today show lead me to this page and I thought I'd pass it along. It is a site for cancer patients who have more than enough bills coming in. They can go to this site and find free stuff from hats and wigs to help getting through this journey. If you want to give back, you may also contact this site to add your freebie to their giveaways. Check it out.
I met with the doctor who will do my reconstruction and made our game plan for the next move. They like to wait 3 - 6 months after you finish radiation before doing reconstruction. This gives your chest time to heal, muscles to stretch in preparation, and skin to regain some strength. My last day of radiation was on September 1st, so we are hoping for a December date. It will be 3 months by then and we want to get one more thing in before the year ends and our insurance starts over with the co-pays on January 1. We were waiting for the insurance sompany to give the go-ahead for the operation before the office could set the surgery date. After a month of not hearing from them, JR finally told the assistant to book the operation anyway. We can always cancel if the insurance says "no" - but they're not going to. When she looked for the earliest available date, we found there was only one left available in this calander year. We grabbed that date. Now let's cross our fingers that no one gets sick or stuck in a blizzard. We are guessing that the insurance company was probably dragging its feet so as to let the dates fill up and we are stuck paying in the new year. If you need to set a date, then insist on setting it right then and there. Tell them to get their approval after you set the date. Do not let them give you a run around. Speak up!
Thank you, Cancer. Because of you I reconnected this year with friends, family, and even people I never met but they reached out to hug me anyway. My internet and office is plastered with letters of love and encouragement that keep me strong. When you took my hair you gave me hours of good laughs. The looks on my family's faces when we shaved my head were priceless! I always wanted to know what I would look like bald, so thank you for that. And even though chemo turned off my immune system so no one dared paint my scalp for the Patriot's Superbowl Game, I did go crazy with the hats people sent. Over a hundred hats and one very special rainbow wig kept my head warm. My belly was warmed by all the dinners people delivered. And the amount of people who participated in our tee shirt, art auction, and Drive Through Dinners fundraisers warmed my heart big time! You introduced me to a new group of people and showed me where I belong. You have given me something to do now that my baby birds are flying the nest and becoming self sufficient. You gave me a new battle cry, a new purpose for my life. Knowing you will always be a part of my life now is the kick in the buttocks I needed to take on a healthier life style. You showed me how to not stress over the things I have no control over and relax if perfection is not achieved. So what if I forget to put make up on when I go to the store? I also am missing boobs and hair, yet no one gives a damn ... so why should I? My hubby still thinks I am gorgeous even with the scars. Thank you for showing me that. You really have shown me how fantastic my life is. I really have no reason to be depressed. Ever. Thank you, Cancer.
...Just one note... Please leave my family alone. Seriously. I appreciate all you have done for me, but when you mess with family you are not welcomed. I wish I had a time machine to make you leave earlier. You can leave now. Thank you.
I finally received my date for reconstruction surgery! Hooray! I am on the final lap at last! Right now I am wearing the stretchers that, well, stretch out my chest muscles to prepare a space for the implants. You can't just place them under the skin. After radiation, the skin can be too weak to hold the implants. They place them under a layer of muscle to better hold them in place. The stretchers are hard and rectangular-ish. They are so not comfortable and are hard to ignore. I am told the implants will feel wonderful in comparison. So Happy New Year to me! I'll be entering the final lap for the holidays. :)
I had my reconstruction stage 2 surgery done yesterday. They removed the hard, square, rough stretchers and inserted the round, soft, comfy implants. My doctor also had to do some creative work on the left side to smooth out an unatural fold and make one side look like the other. I am excited to see how it all looks. I currently am wearing all the hospital bandages under a support dressing (looks like a corsette with pretty pink flowers and ruffle - very girly). After tomorrow night I will be clear to remove the lot, clean it up a bit, and see what prize I won for being a good girl all year. This surgery was very, very, very much easier than the bilateral mastectomy. Less than half the time and no drains installed. Having no drains is a blessing in itself! My throat is sore and scratchy from having a breathing tube down it during surgery. Have a handful of hard candies or lozenges to suck on to make it feel better. I will do some breathing with my Incentive Spirometer to clean out the anesthesia in my chest. That will help my throat too. The staff were all very happy and helpful. They kept things merry as I eased into the Land of Nod with the anethesia. I don't remember too much coming out of surgery. It was a good thing my husband was there so he could hear my instructions for what to do with the dressings and drugs. He took a family leave of absence from work to take care of me this week. Very nice and very helpful! I highly recommend you have a second pair of ears with you when you get instructions. I had a list of questions to answer for each nurse/doctor that came to see me. So the other brain in the room helped with the questions and answers too. I heard everything and responded to all - even signed papers. I just don't remember any of it. JR is putting me on my schedule today and helping me get back on my feet. I feel great and am ready to be done with it all. I can not tell you how happy and excited I am to have finished this step. It takes a while to get here, but ladies, be strong - it will eventually finish and feel fantastic! Go Pink Strong!
Today was my one week follow up with the plastic surgeon... or at least his assistant. We are healing very well and are clear to not have to wear the binder bra (a very tight wrap to support the surgery site). Still need to wear an athletic bra with no underwire. Must have support while healing. I'll go back in two months to make sure I am still healing well. I can start massaging the surgery areas to keep implants from freezing up or scars getting too hard. In 3 weeks, I'll start applying a gell rub to help keep the scars from growing too thick or red. At that time my inscisions should be healed enough to try these rub-on nipple tattoos I got today. Yup. That's right. Nipple tattoos. The next step will be to think about what to do about nipples. I lost them to the mastectomies and have to decide if I want them recreated in surgery or just do a flat tattoo or nothing at all. In six months, I go in to see how things settled and healed and make a plan as to what needs to be adjusted. I know I'll need some work and anticipate another surgery this summer. Not done yet.
I think most people think I will come home with porn star boobs when I say I am getting implants. But they're only porn boobs for Frankenstien's monster. This type of plastic surgery is not the same as just getting a cosmetic boob job. Right now, we are just focusing on removing damaged areas from the cancer and mastectomies and getting the implants in the correct spots. In six months, we'll look at making things more balanced and prettier. They'll never be porn star boobs. We're just hoping for two breasts that fit in the same cup size bra. There will always be scars and lumps and no real nipples. Something to get use to. But better to have a healthy ugly chest than a pretty one that will kill me.
Since all I have to do for the next 6 months is heal from surgery, I thought I would go back into bits that I glossed over that might prove helpful to other Pink Sisters wondering about this journey. Today, I'll start with the stretchers I have been journalling about. They actually are called "tissue expanders". I just could never remember that term. Blame it on the Chemo Brain. So if you are Googling these things don't look for 'spacers' or 'stretchers'. I won't lie. They are not comfortable by any stretch of the imagination. But I was not, however, in constant pain either. Just uncomfortable and sore. I had to watch how I moved and could not sleep on my side for a long while. Bending over was a chore too. Bend as much as you can with the legs to avoid stressing out the chest. When I was just out of surgery, I really could not pick things up off the floor nor trim my own toe nails. Have a friend (or hubby) give you a pedicure and go buy a claw to pick things up with. If you go to the Drug Store where they sell walkers and geriatric supplies, you can find those sticks with a claw on the end to grab your socks off the floor. It also comes in handy when you need to reach up higher than your surgery will allow. Watch those stitches! Do not over strain yourself and pop a stitch. Your expanders and implants can move if mistreated. You need to baby them at least for that first month so they have a chance to settle in where they need to be. I may have 'rested' my reaching a bit too much though. Now that I have been cleared to start reaching above my head for simple stretching, I find my shoulders are super sore and week. My upper arms are huge. Definitely need to move more and work those puppies out. 2016 will be spent trying to regain strength and get back down to a decent size. I know it will take time. I do not want to push things and ruin the reconstruction work already done. It has been over a year of me getting weak and fluffy, so I know it will take that much time to get back in shape. I got a FitBit HR for Christmas and am keeping track of my movement. It helps remind me to move. With this Chemo Brain, I look for anything that works as a reminder.
A friend of mine told me that I should talk about my experience with Chemo Brain, so here I go. Chemo Brain, first off, is an actual, real side effect from chemotherapy. It refers to the confusion or forgetfulness brought on from all the drugs fighting cancer. For years people with cancer have worried about, joked about, and been frustrated by the mental cloudiness they sometimes notice before, during, and after cancer treatment. Even though its exact cause isn’t always known, and it can happen at any time during cancer, this mental fog is commonly called chemo brain. Patients have been aware of this problem for some time, but only recently have studies been done that could help to explain it. If you are going through cancer treatments and think you are going crazy... you're not. Relax. This is real. Get use to putting the peanut butter in the freezer and the car keys in the sock drawer and just have a good laugh. You're okay!
Now, I have had problems with idiot brain silliness related to being over stressed. Working a freelance career where you do not have financial steadiness can cause great stress. When I lose my mind and forget things due to stress, I can shake my head and snap my brain back into focus. I just need to relax and refocus to get my brain back working. I also have experienced mental fuzziness from depression. Here, I feel a cloud wrap over my brain and I feel like I am at the bottom of a swimming pool. I need a little vitamin D and a balancing of my body's chemical health to wipe the heaviness from my brain and float back up for air. Like Stress Brain, Depression Brain just needs a refocusing to wipe away the cobwebs from my mind. Not so with my Chemo Brain. No amount of refocusing will help restart my brain. Probably because my brain is focused and feeling very clear. No cobwebs. The information I am trying to remember just is not there. I have to really work to get the thoughts to come back. I remember taking a good two minutes (which is an eternity) to remember what the word was for the writing utensil in my husband's hand. He was a very good therapist and did not help me. It's like all the other unused muscles on my body, I needed to give it a work out. It felt great to come up with the word "pen" on my own. Scary too. I should not forget something that simple. Right? Nope. My memory recall comes and goes at random times. I have good days and bad days. The farther away from chemotherapy I get, the more good days I have. Hopefully, Chemo Brain will eventually go away. In the meanwhile, I make sure I have a pad and pen near by to jot down things I'll need to remember ... just incase I later forget. I take my time and ask people to allow me to come up with the words on my own. The more I work my brain, the stronger it grows. Sometimes I blame regular silliness on Chemo Brain, so it can be a blessing when you need an excuse. For now, I relax, breath, and keep laughing. I hope you will too.
I was noticing the other day how much clearer my thinking has been lately. I feel like most of my Chemo Brain finally has left me. So there IS light at the end of the tunnel! And speaking of the end, I am scheduled for the first week of June for what I hope to be my final operation. I'll let you know how that goes. The same week I met with my surgeon to set this date, I also met with my cardiologist and had things made a little clearer with my IST.
Inappropriate Sinus Tachycardia (IST) has little to do with heart health. My heart is perfectly healthy. The nervous system that sends messages to and from the brain is what's screwy. For no reason at all, it will randomly send the wrong message and start my heart racing. Kind of like having a toaster that works great, but the electrical cord keeps sending wrong bursts of power to the machine. My medication, in this anology, is my surge protector. Makes sense. I should have seen this problem coming. My pain sensors have always had this issue - not getting the correct messages sent to and from the brain - causing a really high tolerance level to certain types of pain. My ears have had issues with messages being translated incorrectly. They hear sound fine and always pass the tests. But sometimes my interpretation of the sounds are off. I wonder what other kinds of problems can be caused by scrambled signal relays? Funny how the body works!
Hopefully, this is the final operation. Today is another reconstruction surgery where we work to get the chest looking somewhat normal again. When you recognize the staff and have the routine down, you know you've been in too many times. Well, I do like to be proficient at things even if it means having to keep redoing the activity until I get it right. But I think I can pass on bettering my hospital etiquette for now. LOL We did some 'fat sculpting' which involved moving some of my jiggly to areas to make my "breasts' look more normal. When I woke up, there was still way more fat left for sculpting than I was hoping for. (hee hee) (The Tamoxifen has been making it hard to not gain weight despite my work-outs.) I am bound up tightly from below the belly/hips up past the chest. Glad I have the grabber claw to help me pick things up off the floor because bending is out for now. My husband had shoulder surgery done 2 weeks prior. We make quite the pair trying to dress or wash. Team effort rules! The hardest thing about this stage of reconstruction is the waiting. I had my first operation (port-a-cath insertion) in 2014 and we are still going in for more work. We really hope this will be the final visit to the OR. We have to wait for everything to heal and settle again before determining if we are done. Keep fingers crossed that our road is over.
Yesterday, I had my 6 month check-in with my Oncologist. He checks my lymphnodes - neck, pits, chest, gut areas - for signs of cancer. We are still Cancer free! One year on June 3 (when I had my bilateral masectomies in 2015). An excellent thing to hear, indeed. That first year is a scary one filled with 'what-ifs'. But we made it through! Whoo hoo!
Today, I had my surgery follow up. All is healing nicely. I have been approved to remove the binders and to start moving again (within reason). I still have to be careful for 2 more weeks. After that, I can do my pool arobics and scar treatments. I will meet with the surgeon in 2 months for one final check-up. Barring any complications that might arrise from now until then, we should be finished with all our surgeries and treatments. By the end of August, we will be able to call this episode DONE! (Ignoring, of course, the 5 years of Tamoxifen... oh, and possible starting up some physical therapy.) It feels so good to know we will not have to be cut again!!! I was so thrilled to hear that, I almost cried. Time has been the most difficult beast to conquor. But we made it with a little bit of gas left in the engine. :)
I am done with all my treatments and surgeries. Next week I begin physical therapy to help me regain strength and balance lost over two years of 'taking things easy'. As I come on my 2 year anniversary, I want to help the organisazion that helps me through all of this with support, information, and even research (they took tissue samples of my cancer for research). The Rays of Hope is holding their annual Walk/Run Toward the Cure for Breast Cancer. I have formed Team SMacDown to help raise money to fund their work. Please donate - or join our team and help raise funds. Raise over $100 as a team member online and I can give you a Rays of Hope Tee Shirt! Save the date October 30th for the walk! Also: NOW until OCTOBER 8th - Buy a Smac Down Cancer tee from Booster.com to show your support!
I am a little behind in checking in, so I'll try to catch up here. In December, I had another 6 month check-in with my oncologist. Two weeks prior, my husband and I found a tiny lump inside my right breast along the surgery site. We held our breath and prayed that the cancer had not returned. It was good that we did not panic or let the fear overwhelm our daily lives. The doctor found that the bump was only scar tissue and nothing remotely canerous or worthy of worry. What a relief!! The return of cancer is a dark cloud that hovers in the back of my mind always. I do lose some sleep and fall into worry from time to time. I'm human. I can not keep thoughts completely sunshine and lolipops. But I have found that if it is something I have no control over (like cancer), I have to drop the worry and find something positive to meditate on to refocus my mind. I can put some control in my hands by eating and drinking good, cancer-busting food, lower stress, and increase physical movement. I can have control in my life. I may need to work on keeping level headed and on the right, stress-free track, but what in life does not need a little effort. Anything worth having is worth fighting for.
Okay. What else. Continuing on with the theme of control and mood, I have been feeling time's weight lately. I may be done with the big stuff like surgeries, chemo and raditation, but I have 5 years of taking drugs to keep cancer away. The pill is an estrogen blocker to deprive breat cancer from its main source of food. I use to take one every morning, but have switched to taking it just before bed in hopes to sleep through the initial burst of reaction to the drug. I feel nautious and achie on this pill. I feel like I need to eat or drink something to sooth my belly. I feel like I have the munchies all the time. But eat anything and my stomoch regrets it imediately. My energy levels are challenging. Probably because my sleep is irregular. With estrogen blocked, I have entered menopause and enjoy the hot flashes that accompany that stage in life. So all night long I am tossing blankets off or hunting them down to wrap back up. If I am not sweating up a storm, I am freezing cold. I am about 2 years into that fun since Chemo also can begin menopause. Being tired, hungry, and nautious all the time makes it difficult to stay on track with my healthy diet and keeping weight off. (This pill does have the side effect of weight gain.) My wardrobe no longer fits. It can be depressing and difficult to keep smiling when every day feels like a struggle. But at least it is only 5 years of this pill - not a lifetime. There is a light at the end of the tunnel. I just need to teach myself how to keep chugging along on the right track until I'm there. Forcing myself to move and do yoga breathing does help. My Fitbit sends me reminders. I need to keep listening to it and take the time to take time for my physical health. I have a little under 4 more years of this pill fun, so I am hoping by the end to have trained my subconcious to move and breath regularly so I will continue the life style long after the side effects of my treatments have gone.
I can't believe a year has passed since my last update. Without the 'excitement' of all the surgeries, days kind of blended one into another. 2017 was spent working on regaining strength through therapy exercises. I find that if I keep moving and exercising, my chest does not hurt. If I baby the sore muscles, they get more sore. My surgeon told me that since my nerve endings and muscles were severed and moved, they will always be tender or sore when touched. I will never be 100% as strong as I once was. But if I keep strong, I will be the best % I can be. Speaking of my sugeon, I had a 6 month follow up last week. My last one! I no longer have to come in for regular follow ups. Yay! If I choose to try to balance the sizes better, I can call whenever I am ready. But more sugery right now is not something I want. My body has been stressed enough and could use to time off before being cut again.
Physical stress could come from taking pills as well as surgery. I did not enjoy taking the tamoxifen. Since it forces your body into menopause, it hightened my reactions to this 'life change'. My nerves and joints ache. It is hard standing on my feet after sitting for a bit. My muscles seem to spasm quite alot. I always felt queesy. I seemed to always need to suck on candy or gum or gingerale to help me feel better. My weight skyrocked. Not good on your liver to be overweight. The drug also has a side effect of stressing your liver. As a result, my liver enzimes and blood sugar counts shot through the roof. I developed type 2 diabetes. Had to see a specialist to teach me the wonderful world of blood testing and carb counting. I (a lifetime sugar adict) had to cut out all sugars and startches. I dropped 10% of my weight and brought my A1C number down to a safezone. But then my weight stabilized - no more loss but no more gain. With Lent starting tomorrow, I will bump up my diet and excersise routine to see if I can't kick start my loss again. The more weight I lose, the less stress on my liver. I also was swapped off of tamoxifen for a new cancer-fighting drug that is not so stressful on the liver. I still have the hightened menopause symptoms on this new drug, but not the nausea. Maybe my muscles and nerves won't hurt so much once I lose the weight.
I am still on my heart medication. I find I have a bad day if I miss a dose. I need to stay on the drug. Probably for the rest of my life. But the tiredness I battled my whole life is gone when I take my heart medicine. So I am happy to keep going with it. At least I no longer have to go in for a follow up every 6 months. Only once a year.
2018 will be focused on losing weight and regaining strength. I am tired of having probelms whenver I go for a check up. Time to turn things around.
I apologize for letting almost another full year pass without checking in on my cancer journey. It has been a tough year but a fast year. I was removed from the Tamoxifen and enjoyed feeling well again in my gut for the first time since we started treatments in December 2014. My liver counts went from being Diabetic Type 2 to being normal. All of my counts went to normal. Mr doctor was actually surprised to see every single number in the normal range.
I was only 3 years into my 5 years of taking an oral chemo pill, so I was put on a replacement pill to finish the final 2 years. We had to wait until I was long enough into menopause before being taken off the Tamoxifen and put on a pill for post menopausal women. Anastrozole did not affect my gut and allowed it to heal and have my numbers return to normal. Yay! However, it did affect my joints and muscles. I began having occasional muscle cramping and stiff joints. Eventually, the joints began to hurt and the muscles cramped up or froze more regularly. Myalgia took over all of my muscles and joints. Pain became constant. I had difficulty sleeping for longer than a half hour at a time because I was in so much pain. The majority of the intense pain was focused on my right hip. What started as a slight limp, slowly grew into an inability to move the leg at all without the worse pain I have ever felt. Pain medication only seemed to help relieve only a tiny fraction.
At first I thought I should just push through the pain and serve my 2 years. Pain was better than having damage done to my liver. To make sure it was just a myalgia and not anything broken or arthritic, I had my GP do an x-ray. Everything looked healthy, so I kept pushing on. Then I thought that maybe my cancer had metastasized since the severe pain was focusing so much on my hip. But I met other survivors on this medication that found pain focusing more on one spot than another. It seems to be a normal reaction. But the severity that was increasing is not normal. When I could not function through the pain, I contacted my doctor. My oncologist removed me from that medication. I have 2 weeks to rest and recuperate. Then I will meet with her to discuss a new game plan.
I have been off the medication for a week now. I did not realize there would be withdrawals. Back came the nausea and some random dizziness. Pain seemed to stay as muscle spasm kept me up. It took over 3 days before I felt like the withdrawals had ‘broke’. Since then, the pain has decreased a tiny bit every day. The first thing to go were the muscle spasms and cramps. My joints still crack when I move, but all of the minor pain is gone. The severe pain in my wrists and knees still bother me a bit. Unfortunately the hip is still not working. I can sleep now. I have better days back. But I still have trouble walking, bending, and doing stairs. I look forward to the pain going down. I know it will.
Well. Well. Well..... So, my cramping and myalgia is all gone. I am getting up only once during the night to 'powder my nose'. I slept 5 hours straight for the first time in 4 years! Wow! I feel fantastic ....... as long as I don't move. My hip has worsened. But the pain is in just a very specific spot now. Not randomly all about as it was with the medication. I can not put weight on my hip without pain so my oncologist gave me some Perkaset to help with pain managment. It helps. (Not completely, but I'll take it.)
Note for fellow survivors: Pain should be reported to your oncologist no matter what you think caused it. I have a high tolerence for pain and am know for pushing through stuff that normal people would be floored by. If you report the pain, the doctor can tell you if 'pushing through' is the plan or if that pain is signaling something worse. Don't guess with your heath. Let the doctors do that for you. Real doctors and not what you read online. A real doctor knows you and your health specifics. The internet does not and can not choose a diagnosis for you. Keep good dialogue going with your oncology office.
When I visited my Oncologist after coming off the Anastrozole she looked at my hip pain and said that it was not from the medication but something else. After a Bone Density Scan and an MRI, we see it definitely is something else. We are waiting on results from a biopsy, but first impression looks like it is Metastatic Breast Cancer.
The pain in my hip has grown to a point where I can not put weight on the right hip. I am using a walker to move about. But it is with great pain and effort. I had a fall on Sunday that aggrivated my shoulder muscle. So now, I can not use that arm to take weight off that side of the hip when I move. I'm not sure the pain medication is working, but I don't want to stop it to see if I am right in case I am wrong. This week, I am waiting for the results of the biopsy we had on Monday by resting my arm and hip. Praying for the best results to come in.
Well. Results are confirmed. I have Metastatic Breast Cancer located in my hip. I go in for a head-to-toe P.E.T. scan tonight to see if the MBC has spread anywhere else. We start radiation treatment on the largest area on the hip to shrink it down. Hopefully, shrinking will take away the pain and allow me to move again. My shoulders would greatly appreciate that! They hurt having to lift my big butt everywhere. LOL
Thanks to my husband who helps me in and out of bed and waits patiently as I try to use stairs. Having an ocupational therapist as a husband is very handy right now. :)
I received a Handicapped Parking Plackard and a ramp is being installed from the front door. I feel old. But not old enough, I guess. I am too young to qualify for many free services. We'll have to look into how to afford all the things I will eventually need as I lose more mobility.
To all those who read this final entry it is the hardest thing that I have ever had to write. My name is JR I am Sue’s Husband. I regret to say that Sue lost her valiant battle against Metastatic Breast Cancer on September 1st 2020 in the comfort of her home surrounded by loving family and friends from afar. I washed her face combed her hair gave her a gentle kiss and told her “It is ok honey I will be fine, everyone will watch out for me. You go and rest be without pain.” At that my lovely Sue, The love of my life passed away. It was the hardest thing that I ever had to do next to writing this entry. It was about her not having to suffer anymore. She was so good up to the very end. She was alert and talkative. She was able to communicate through zoom with friends in California. Sue wanted to see anyone who wanted to see her and we did that. Even with Covid raging our country if someone came to visit she wanted to see their smiles and feel their love. To share in the joy of their visits. At times she was tired and closed her eyes and people would say “Oh she is sleeping I will let her rest and she would say I am just resting my eyes don’t go yet.” She was always wanting to please others right to the very end.
As I wanted to do this final entry for her as she wanted to try to inform others who were going through the same as she did not to give up and keep trying. Don’t just lay down and let this disease control your life. Be positive and positive things will happen. In March of 2020 due to the increased pain she was having in her hips she decided she wanted to undergo a Bilateral hip pinning. Which basically meant having metal rods inserted into her Femurs to stabilize them and reduce her pain which she was having with all of her mobility. She was in the hospital for two days and I took her home. She was able to walk with the use os a walker and was able to do stairs before she come home. The surgery eliminated her pain and she was able to walk in the house up and down stairs and ventured back outside. She did tend to overdo it some times as she wanted to be out in the gardens with her flowers and plants. The doctors were amazed at how well she did and stated this is how the surgeries are supposed to change life for the better.
Sue had two episodes of Hypercalcemia. This was caused by a build up of calcium in her blood from the breakdown of her bones from the cancer and also her taking a calcium supplement to increase her bone strength. She became very confused and unsteady and had one fall without injury. “Tigger's always bounce.” She was given injections that would take the calcium from her blood and push it back into her bones. Two trips to the hospital for that and one for an extended stay for a week as her Inappropriate Sinus Tachycardia was not under control also from the hypercalcemia. She required a short stay in rehab to increase her strength. She was unable to return home right away due to Covid and their restrictions at the facility.
In August she continued her treatments with infusions and oral medications. Still trying to find the right cocktail that would stop the progression. We had had discussions with our Oncologist in the past to let us know when it would be time for Hospice. I as an Occupational Therapist I always pressed the questions and ratted Sue out when she was asked questions. The doctor called me her manager, as that is what a care giver is and it is our responsibility to get the best care for the ones we love. On our last visit to the doctors in late September, I was not able to go in due to strict covid precautions. Only able to be present on the phone we received the news we hoped would not come. That was likely one of the hardens visits we had and to not be able to be there to hold her hand was terrible. Sue and I always held hands and it drove our family and friends nuts. They kept saying the honeymoon is over move on, but not for us. Every day was like we had just gotten married and to hold her was a true gift.
The doctor stated that it was time for Hospice. We agreed and within 24 hours we had all that we needed to take care of Sue at home. She continued to Zoom chat with close friends in California as we scheduled calls around her meds and nap times which she loved. Family and friends came to visit her which I encouraged. I hated to have to tell family and friends from out west not to fly and come to visit as it was not safe. We made the best of it and it seemed to work out. She received gift packages from her friends that she worked with at the Disney Studios. We received wonderful letters fro her Director friends. There is one letter that I received that I want to add in here. It is from our friend Brenda Chapmin writer and director. MAYA is a cat that we found three years ago on mothers layout in the pouring rain outside our kitchen. Sue was in the basement and heard the little kitten crying and we could not find the little kitten as she was black and was covered in mulch and soaking wet. Our daughter Stephanie who is in Vet school helped us to nurse her back to health. She had a near dysplasia and would wobble when she walked. Not willing to accept that this little kitten with it’s eyes still closed and unable to see and may not survive I set to work. Gave her therapy fed her with a bottle and Sue would carry her around in her pocket. Sue never had pets as she was allergic to them. However be it from her medications or sure will sue never had a reaction. They grew very close and she would snuggle with sue all the time never paying any attention to me unless she wanted to practice attacking something. Maya was the best therapist Sue could ever have for those three years. When I was away at work they were always together. She knew when Sue needed loving to have her lymph nodes messaged and just cuddle with her. That was her momma.
The cat’s eyes followed me. It was unnerving. “If you make a wrong move, I’m going to jump on your face and take you down,” she seemed to be thinking.
“It’s okay. I come in peace,” I said as I walked across the darkened room to the chair set up near the bed and sat down next to Sue. Maya sat dangerously still except for a threatening twitch of her tail, watching every minute movement I made. She slowly seemed to decide that I was okay and blinked into a contented squint. Sue flinched slightly then smiled weakly as Maya settled into her side, kneading down and purring.
I relaxed. I like cats, but you never know if you’re going to get love, hate or simple disdain. The latter two often come with a nasty scratch.
The room was warm and dark, a soft glow of light through the curtains all that illuminated. JR had made it as cozy as possible for Sue to feel safe and comfortable in her favorite part of the house. He had quietly stood in the doorway as I crossed Maya’s gauntlet, but had stepped softly away to give me some time alone with my best friend.
Sue struggled to open her eyes. She won the battle for a few seconds, her beautiful round brown eyes wide as she did her utmost to focus on my face. Then I saw the flicker of recognition, her eyes acknowledging my presence. I could just see the smile behind them. She was happy I had come. My heart lurched in my chest, and I had to gulp in air. She was emaciated. I hesitated, but I reached out and I took her bony hand in mine. It was neither cold nor warm, just soft and delicate, as if I could break it too easily. It felt so fragile, this hand that used to be so strong and firm and elegant, the fingers long and articulate. This hand that was the instrument of Sue’s abundant talent as it wielded a pencil or pen or brush or stylist… or even a glue gun. Now it lay listless in mine, my stubby fingers wrapped gently and desperately around hers… yet I felt a gentle little squeeze. My heart stopped for a moment in gratitude.
I struggled to keep the tears out of my eyes and forced my lips into an unquavering smile. No quavering allowed. Sue had carried such bravery, joy and love into her battle against this dark cancerous monster, willing it away with her bright eyes and giant smile. “When life gives you lemons, you make lemonade,” was her battle cry. No wiggly chin or trembling lips would I let her see on me. I wasn’t sure how long I could hold it, but she spared me by closing her eyes, again.
To see Sue like this was killing me. To even know that her cat would be sad and confused when she was gone nearly sent me over the edge. As it was, I envied Maya her ability to cuddle into Sue’s side, pushing her head comfortingly and affectionately into her “mother’s” armpit. I desperately wanted to do the same, silly as the thought was of sticking my big head into my friend’s armpit. Just the same, I wanted to be as close to Sue as Maya was.
I was so in awe of this cat that had won over Sue’s heart. Sue, who didn’t really like animals, at least when we were younger and back in California. She was allergic to dogs and cats, both of which I had in my house… two of each, actually. In my defense, I didn’t know she was allergic until after I’d brought them home. Sue would diligently avoid petting them when she would come over, which was several times a week, back in the day. That also meant that our puppy, Matilda, would dutifully pee on the floor when Sue walked it, so desperate was she for Sue to pet her. Sue would give Matilda that big smile of hers and say, “Oops!” and giggle as Kevin or I ran to grab the paper-towels. But she never really gave our pets any real attention or overt affection. When Maya showed up in Sue’s life, wet and mewling out of the rain, I was stunned to hear how Sue cooed and talked to her, and how much love was in her voice when she spoke about her. Maya brought Sue a joy and companionship I never thought she’d experience in loving an animal. I was happy for Sue, and loved Maya for it.
But at this very moment, all I could do was envy that cat.
I watched as Sue’s breathing went from labored to a little less so as Maya purred and rubbed her head against her. “You’re going to be lost without her, little one,” I thought.
Looking at my friend’s sunken face, I wanted to gather her in my arms and hold her and make it all go away. I would have traded places with her without hesitating if I could have. I wanted to let her know that I loved her so much… somehow. So, I held her hand and bent and touched my lips to her cheek. The corner of her mouth twitched into a fleeting smile…
All a wish. A daydream.
I couldn’t hold Sue’s hand in mine or kiss her cheek because our world is upside down in a goddamn pandemic with no foreseeable end. I could only watch on a screen from three thousand miles away as my best friend opened her eyes and struggled to focus on the screen… on me. The helplessness and frustration of not being physically there for her was agonizing. I thought I saw a slight brightness in her eyes, the corner of her mouth twitch as she looked my way. I hoped she could really see me. I hoped she could feel my love through that cold flat screen.
Maya was oblivious to my presence, as she persistently kneaded into Sue, purring. I could hear her purring. Oh, how I envied that cat, sticking its loving head into my friend’s armpit.
Brenda Chapmin 10-27-2020
Maya was with Sue till the very end she loved her momma so very much. I feel a piece of Sue is inside of Maya. She now follows me everywhere and cuddles with me as she did with Sue. She still attacks me when I am not looking, just to keep me on my toes.
The Loss of Sue was a great loss to this world. She fought every day to beat a relentless disease that shows no mercy on the Good Wonderfull loving people of the world. Why we can find treatments for a global pandemic and not for the cancers that plague the world is beyond me. For all those that are fighting the fight never give up be strong when it all seems at it’s worst, look into your children’s and spouse's eyes and draw from their strength and love, dig deep and fight. You are the strongest people in the world. You may loose your hair, a breast and even some friends but you are all strong beautiful people. Sue use to always say how can you love this deformed body and the answer was easy. I love the person inside the body. For better or worse in Sickness and in health. That is what love is. We never want to let it go, but if and when the time comes true love is being able to let the spirit fly and be free.
Sue past from this earth on September 1st 2020 and was laid to rest in the Veterans cemetery in Agawam, Mass. surrounded by other worriers that fought for our country and our freedoms. She is also a worrier as you all are. Be strong and remember as Sue use to say.
“When life gives you lemons make lemon aid. Sometimes it just takes a bit more sugar. “
LOVE TO YOU ALL AND GOD BLESS BE STRONG.
Sue has joined the Scantic River Artisans. Come see art made by local artists of various mediums. Find out more about SRC at this link.
Sue is now a Certified Gemologist by the International Gem Society! Sue became a gemologist to help better identify gems in jewelry bought and sold by the company she and her husband run, CSM Collectables. Find it on Ebay.
CSM COLLECTIBLES NOW OPEN FOR BUSINESS!
My husband and I are looking for a new career to pay for the kids in college. Check it out.
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