So once again Breast Cancer Awareness month begins. It’s always an interesting month for me. Every time I’ve been diagnosed with breast cancer, it’s been in October. I suppose I just like to do things at the appropriate time. Lol!

So here we are again. After “losing my breasts”, finding them through reconstruction and thinking “Phew! That’s over!” I find I was quite incorrect.

So this October finds me having my reconstruction re-done. You see, I’ve been recalled. Seriously. The implants used for my breast reconstruction were recalled in July. They have been found to cause a rare type of lymphoma. The irony abounds.

But wait, it gets better. (Doesn’t it always?) As they still don’t know the exact mechanism by which they cause lymphoma, no one knows if after you remove them the risk is 100% eliminated. Are we having fun yet?

On Thursday morning, VERY EARLY Thursday morning, I reported to the “dealership” to have my recall addressed. My reconstruction that had turned out beautifully would be completely re-done. The shaped, textured implants would be removed and replaced with round, smooth implants. Sounds simple right? It’s not. You see, the reason the shaped implants are textured is to promote tissue in growth so they don’t move. I can’t imagine what it was like removing them. Then the “pockets” that hold the implants have to be cleaned out and prepared for the new implant shape. They also are sized differently. They chose to position them slightly differently as I literally have no more fat to graft. I’d already had five fat grafting procedures and I’m quite thin. Okay, VERY thin.

I was absolutely grateful to see my favorite nurse practitioner at the hospital. She would be assisting with the surgery. I felt confident she would ensure a great result. We had developed a great relationship over the past few years and she understood my goals. I would have an advocate in the OR. That was a great relief.

When I woke up, I was surprised to find I actually had more pain than the original implant surgery. But from what I can tell thus far, the result looks good. I’m sincerely hoping we may finally be done with my breast reconstruction. Three years and 8 surgeries later.

So, here’s my advice for Breast Cancer Awareness Month. PLEASE do get your mammogram. Early detection is still the best weapon for fighting this disease. If you are facing mastectomy, find a plastic surgeon that focuses on reconstruction if you are choosing reconstruction. You may be a candidate for an autologous (using your own tissue) flap procedure (I wasn’t). If you do need implants, DO NOT use the shaped implants. Even though Allergan is the only brand recalled at this point, all have been reported. You can speak to your plastic surgeon about fat grafting to help correct any remaining cosmetic issue.

If you have the Allergan shaped, textured implants, speak to your surgeon about getting an MRI and discuss the possibility of having the implants removed. While the FDA did provide language in the recall stating asymptotic patients did not have to remove the implants, I find that irresponsible. Do you wait until you develop lymphoma? The deaths and reported cases have increased exponentially since February of this year. I had no choice as I’ve developed hypogammaglobulinemia due to one of the drugs that helps slow my disease from progression. So the decision was pretty simple. However, I think even in the absence of that increased disease risk I would have removed them given what we now know. I find it inexplicable and reprehensible to ask women to wait until they’re actually sick with a potentially fatal and difficult to detect disease, to act. Surviving breast cancer only to develop lymphoma because of the implants used in your reconstruction is NOT an acceptable result. They also don’t know the exact mechanism by which they cause lymphoma. That means they don’t know if removing them completely eliminates the risk of developing disease. But it certainly reduces the risk.

I’m hopeful for yet another great outcome though not pleased about going through this again. I’d love to have an October come and go not thinking about my breasts. And I thought I was there. Thank you Allergan for taking that possibility off the table.

Now go get squished! It can save your life!

And again, if you have the Allergan shaped, textured implants, get an MRI and speak to your surgeon. It too could save your life.

#BreastCancerAwareness #AllerganImplantRecall

#BreastReconstruction

I decided to finally publish this on the one year anniversary of the day Matilda’s life changed forever. I do it as a way to honor her. Honor everything she is and provides me. After almost two years of training Matilda began working last year on her birthday as my service dog. And she is remarkable. Balanced, patient, fearless, loyal, fun loving and always willing to assist me flawlessly. So to honor her, I will finally tell the story of the past year in the hope of saving even one other dog the same fate of Matilda.

I live with MS, I have survived breast cancer multiple times and yet nothing can compare to the nightmare that began the morning of July 7, 2018.

It began with one, single innocent sounding cough. Almost as if she was clearing her throat. It was Matilda. My amazing, beautiful, 27 month old Great Dane Service Dog that actually had just begun working in April. She is magnificent. Everything you could ask for in a Service Dog. Confident, well balanced, unbelievably well trained, loves to work and just an absolute dream. If she has a flaw, it is that she is too friendly. I’ll take that any day. So it shouldn’t be a surprise that when she “coughed” I immediately grabbed my stethoscope. She is my life. My absolute love.

Previously in June she had been diagnosed with very mild Mitral Valve Dysplasia. I thought that was bad enough. However, it was very mild and there were no restrictions or medications required at that time. It would affect her later in life and I went through about a week of grieving what was to come years out. If I only knew what was to come in just thirty days.

Given that diagnosis I was even more “attune” to any changes in her breathing or heart rate. I would listen carefully. I heard perhaps minor changes but nothing alarming initially. She was behaving normally. Playing with Willow. And eating and drinking normally. However, I decided to find a new cardiologist. Her cardiologist had moved out of state. Finding a new cardiologist was no easy task. All the cardiologists were booked months out. This wasn’t helpful. After speaking to someone at Tufts I felt somewhat reassured. The weather had been extremely hot with high humidity. She explained that the weather could be setting her off. if she was not restless at night, most likely it was not a cardiac issue. She was sleeping fine. However, I made an appointment with our regular vet just to have her checked.

That night, well actually 4:00 am, she “coughed” once. More like clearing her throat actually. It made no sense. She had been playing with Willow the night before with absolutely no coughing or exercise intolerance. I once again took out the stethoscope. Now I heard changes that were more worrisome. VERY worrisome.  I called her vet as soon as they opened and explained I wanted to bring her in as soon as possible. Oddly, she was behaving normally. she ate breakfast. she went outside to potty. She was happy. she did not “look” sick.

Before loading her in the car I listened again with the stethoscope. What I heard now was absolutely horrifying. I heard an irregular heart rhythm and “crackling” in her chest. This was a dog in serious trouble. Yet, she still “looked” fine. I probably looked worse than her given my worry and stress.

We arrived at her vet and she walked in wagging her tail, looking every bit like the Matilda they were used to seeing. I actually said “Feel free to put me on a psych hold but, this dog is seriously ill.” I know they were skeptical. Dr. Kruse quickly examined her and I could see the look on her face. I asked if she heard what I heard. She said yes. We needed to do a chest x-ray. I knew where we were headed. I tried to steady myself for what was to come but I had no idea….

The chest film was terrifying. It was basically “whited out” meaning her chest was filled with fluid. She was in heart failure. I was beginning to feel physically ill. Dr. Kruse asked if I’d been feeding grain free. Oh god! Yes! And I also knew why she was asking. I’d just read the article by Dr. Lisa Freeman from Tufts.  “A Broken Heart” regarding grain free foods and DCM. I’d actually decided to change food. I was too late! I burst into tears. “I did this to her! This is my fault!” I had fallen for the marketing and chosen poorly and now my gorgeous, beloved girl was paying for my bad decision. Ironically, I received a notification that her new food was delivered as we were there. Again, too late. How was I ever going to be able to live with this? I had chosen and fed her the food that caused her heart failure!

Thankfully, The entire office flew into emergency mode as we tried to locate an ER with a cardiologist on site. It was a Saturday. In the interim, Dr. Kruse administered IV Lasix to begin off loading the fluid.

We found a cardiologist at Angell in Boston. They would be expecting us and I would drive like mad.

On the way, poor Matilda peed about two pounds of fluid out in the back of the Explorer. I had no where to stop and honestly, I didn’t care. My focus was getting her there. I knew she was at risk for sudden death. She was more bothered by it than I was. The car could be cleaned and/or replaced (both occurred), she could not.

Upon arriving at Angell, they were in fact not prepared. I had her chest x-ray and explained she was in heart failure. The first tech that triaged her dismissed us to wait in the waiting room. I flipped out. I went full Shirley McLaine from Terms of Endearment on the poor girl. I explained in no uncertain terms that I wanted a vet, not a tech, to triage her, NOW!! A vet (intern) appeared and very quickly realized she in fact, needed immediate attention. She took her to the back to begin treating her. I was now dismissed to the waiting room. I was a mess. I was sobbing uncontrollably. A combination of guilt and fear. I was also just ten days post-op myself. I was constantly on the verge of passing out from pain.

Finally. an intern came to retrieve me and take her history. I really tried to be patient. However, vet schools like human medical schools begin their internships and residencies on July 1. This was a recent graduate with very little clinical experience and I had a very sick dog. She fumbled through the history (and actually made a couple mistakes that were reflected on Matilda’s record) and had NO knowledge of diet related DCM. NONE. I lost it. I finally said “I’m going to give you a list of differential diagnosis as well as her cardiac history to take to cardiology. I wrote them down. “Now take it to them NOW! Run!”

Frustrated, angry, afraid and absolutely lost, I found my way back to the waiting room. I looked around at all the people with their dogs. I didn’t want to socialize. I wanted to be left alone. I spotted a guy who I thought no one would sit near. Big guy, huge pit bull. looked like he could snap you in two with one hand. That’s my guy I thought. No one is going to sit near him. I went and sat next to him. His name was Ovie (sic). Turns out, Ovie was hysterical and just what I needed. I spent many hours on a wooden bench with Ovie who seemed to immediately understand my fear, helplessness and utter sense of loss. He talked to me about Matilda, shared his feelings for his dogs and then made me laugh during this horrendous time with hysterical self effacing humor.

Finally after many hours I got to speak with the cardiologist. Matilda was in congestive heart failure with dilated cardiomyopathy (DCM). It made no sense. 30 days prior she had no signs of DCM. Yet, here we were. She was extremely sick. The cardiologist felt strongly it was diet related. My guilt washed over me. Had I killed my gorgeous, perfect dog because of a bad decision? The cardiologist want to run more tests including Taurine (diet) and other PCR vectors to rule out infection. In the interim, we would treat her as diet related DCM. Again the guilt came. She would have to remain hospitalized for at least two to three days. Thankfully, she was not in aFib. She just was so tachycardic you couldn’t tell until they did an ecg.

They wanted to begin Taurine supplements immediately while she remained in the hospital. Of course, they didn’t have Taurine. I would have to get it and bring it to the hospital. I also had to bring her food. As I was leaving to go get everything and bring it back my new friend Ovie stopped me. He asked if I would be doing these things alone. I said yes. He actually offered his assistance. I could tell he was genuinely concerned. I assured him I would be fine and thanked him for his concern. To this day, I’d like to find this man and truly thank him for helping me get through that day. I had been alone and more frightened than I had been in a very long time. This stranger made that day bearable.

Matilda ended up being released from the hospital early. After a day and a half, it was apparent to them she was more stressed being separated from me which was counter productive. She also had responded well to treatment and had off loaded much of the fluid in her chest. She would be coming home on cardiac medications and lasix. We would transition her diet to a safe food and supplement her Taurine. If in fact this was diet related, she could hopefully recover. Her cardiologist had treated other dogs with diet related DCM that actually had fully recovered. However, we probably wouldn’t see improvement for six months. I was devastated. She couldn’t run or play, no work and I had to closely monitor her respiration and heart rate. She would need blood work to check the affect of the medications on her kidneys and repeated chest films initially to ensure the fluid was not returning.

The first week at home was brutal. She wouldn’t eat because of the medications. I actually had Wegman’s delivering all kinds of meats and tuna in a effort to get her to eat something. Anything. I thought “what must the delivery person be thinking? 30lbs. of ground beef?” Finally, her regular vet had a great trick up her sleeve called Entyce. It worked! One dose and she ate! I also split up her medication so she wasn’t getting it all at once. Next issue? A Great Dane on lasix.

There is nothing like a Great Dane with fluid to off load, on reasonably high doses of lasix. Regardless of how well housebroken the dog, there will be accidents. Why? Because ironically, they need to constantly drink and they do. I stocked up on chux and began many sleepless nights of taking my full grown dog out multiple times to pee. It was probably two months before she actually made it through the night without needing to go out. By then we had also decreased her lasix.

However, I still wasn’t sleeping. I was constantly checking her heart rate and respiration to ensure she wasn’t going into heart failure again. I would listen carefully with my stethoscope for any sign of fluid. We had one “scare” a few weeks in when we believed she had some fluid return. Thankfully, her chest x-ray showed only minor changes that her cardiologist agreed we could handle with adjusting her lasix. Yet everyday was terrifying.

When I wasn’t checking her heart rate and respiration or taking her out, I was researching this issue like mad. I pulled all the research I could find. Matilda’s case was reported to the FDA immediately. That gave me insight into who was doing research and the fact that this was an issue to be taken seriously. I found work by Dr. Joshua Stern. He and Dr. Freeman had the most information published in recent literature. Then I found Dr. Joshua Stern. He was actually an admin of a Facebook group. Taurine-Deficient Dilated Cardiomyopathy. I joined immediately. The information was invaluable. However, the reality hit me as well.

There is a beautiful Golden Retriever named Oliver who is truly the face of what is now called NM-DCM. (Nutrionally Mediated DCM) Oliver was a gorgeous, playful full of life Golden that was absolutely loved by his owners Julie and Bruce Carter. At just four years old, Oliver had just received an encouraging echo and exam at the cardiologist. The next day this wonderful, gorgeous boy passed away just five feet from his owner. Sudden death. A very real symptom of this horrendous disease. I read Oliver’s story with tears flowing down my face. I knew that could be Matilda. It could be any dog with this disease. And that reality has never left me.

The first month was spent back and forth to Angell to check her progress. She was remaining stable. The fluid remained off loaded and she was cleared to return to work. She would still have exercise restrictions. That was going to be just awful for her. She absolutely loved to play. She was just over two years old and running the yard was one of her favorite things. She would have to adjust. I wasn’t going to lose her due to poor judgement. My bad food choice already got us here. Again, the guilt grabbed me by my very core. “It’s my fault she can’t run and play. I did this”

She also now would be subjected to frequent blood tests to monitor kidney and liver function due to the medication she was on. She has never minded going to the vet but I certainly didn’t want that to change nor was I thrilled at the prospect of her being subjected to that. Again, the guilt.

Finally at the two month mark she was seen at Tufts. I had decided to transition her care to Tufts as they were doing research on this issue and had the most experience. Her Taurine test had come back low and all the tests to rule out infection were negative. It certainly appeared diet related. We met with Dr. Cunningham who explained that at two months there most likely would be no change. This would be a baseline exam for them. I had brought all of her previous echocardiograms and records. They took Matilda off to perform the exams and I went off to the waiting room to wait and worry.

After what seemed like forever, the student working with Dr. Cunningham came and got me. I was actually dreading the results. Surprising to everyone she had already improved! She still had DCM but her heart function and size had both improved! I couldn’t believe it! She still couldn’t run laps but she could play in the house now. I felt like I could actually take a breath even if just for a moment. We would re-check her in two months.

November came and I waited nervously again while they examined her. Again she had improved. Not by leaps and bounds but there was improvement. We were trending in the right direction. We also could decrease her lasix further. We also decided to re-test her Taurine. Her Taurine came back high/normal so it was decided to decrease it somewhat. We would check her again in two months.

January came and this time I was somewhat optimistic. Bad decision. She hadn’t improved since November. In fact, there may be a very slight increase in size in the left ventricle.  Her proBNP was back up. I was devastated. But I immediately thought, Taurine! We had decreased it! I told Dr. Cunningham I was going back to the original dose. She wasn’t sure she agreed with my assessment but agreed it wouldn’t hurt. We’d check again in two months.

The end of March couldn’t get here soon enough. I was fraught with worry. She seemed stable but only the echo could tell the story. Once again I sat nervously while they took my girl off for her exam. When they returned I wasn’t sure I wanted to hear the result. But I did. She….had….improved! I immediately said “Taurine!” Dr. Cunningham still wasn’t 100% sure but she couldn’t disagree. However, something still bothered me. It always had. I asked the question I’d asked before. “How did this dog go from having an echo on 6/6/18 with no DCM to being in heart failure with DCM 0n 7/7/18?”

Unfortunately the answer was there all along. She actually did have very mild DCM on 6/6/18. We realized that when her measurements on her March Echocardiogram were actually smaller than the previous June Echocardiogram. It was so mild, it was missed. But it was an example of how quickly heart failure can occur. Literally 30 days.

So here we are a year later. During this year I’ve not only had to care for my beloved service dog, I’ve also been subjected to comments and attacks from people who don’t want to believe this issue exists. I’ve been told “she’s a Great Dane, they just get DCM and she won’t live beyond a year.” I’ve left groups on FB for the same reason. I’ve been criticized for scrupulously researching her pedigree for heart issues. (I should note, her amazing breeder has been incredibly supportive. She has responded extremely responsibly to all the information and has worked to become more informed and educate others.) I’ve also been fortunate to meet some amazing people. Brought together because of this horrendous disease. People like myself who believe this is a travesty that can and needs to stop.

And may I please just comment on these breed groups who wish to insist that the issue is only a hereditary one. You are doing a great disservice to your breeds. Responsible breeders should be trying to preserve their breed. That includes becoming aware of and recognizing all health threats. A breed having a predisposition to primary DCM doesn’t preclude them from developing NM-DCM. Wake up and stop preventing people from obtaining valuable information that may well save their dog’s life. It’s time to check egos at the proverbial door.

So one year later, Matilda had her check up. She continues to improve. Her heart measurements are smaller and her function is better. She’s stable. She actually even just underwent surgery to be spayed and did beautifully under anesthesia. Will she ever return to “normal?” Most likely not. But no one knows. What we do know is this is preventable. No one has to live through the nightmare we’ve lived through and continue to live with.

PLEASE feed your dog a food from a manufacturer that meets WSAVA guidelines until this is sorted out. Those are Purina, Science Diet, Royal Canin and Eukanuba/Iams.

For more information on how to prevent NM-DCM or what to do if you’ve been feeding a “BEG” diet, below are some great resources. I sincerely encourage you to take this issue seriously. It truly is a nightmare when it happens to you. And it’s a nightmare you’ll not wake up from.

For Matilda and all the other dogs fighting and lost to NM-DCM.💔

https://www.facebook.com/groups/TaurineDCM/?ref=share

https://www.fda.gov/animal-veterinary/news-events/fda-investigation-potential-link-between-certain-diets-and-canine-dilated-cardiomyopathy

https://avmajournals.avma.org/doi/full/10.2460/javma.253.11.1390

https://www.wsava.org/WSAVA/media/Arpita-and-Emma-editorial/Selecting-the-Best-Food-for-your-Pet.pdf

 

Three years ago a litter of magnificent Great Dane puppies was born. Black and Fawn, all gorgeous and perfect. All born to the care of an extremely responsible breeder. I had been searching for over a year for such a breeder and puppy. They’re hard to find. I needed a great temperament, health tested for multiple generations and an actual “track record” of the dog’s personalities to help me stack the deck if you will. You see this puppy would have a special job if it succeeded in training. It would be my service dog.

A ten page puppy application was submitted. Vet references were contacted. A phone interview conducted. We met in person and then I received the greatest news. Yes, I could have one of these wonderful puppies. I was elated!

The boxes of toys piled up, new crates arrived and the house was prepared for the new arrival. We also made multiple trips to the breeder trying to select just the right puppy. Oddly, it was an easy decision. Though I went in truly wanting a black puppy, there was a Fawn in a purple collar that just stood out to me and to my friend Terri. It was quickly decided the Purple collar girl was the one. I still don’t know exactly why but she was the one. There was something in her eyes. A wisdom if you will. She was Matilda.

The day came to pick her up. I was so excited! Her breeder and I spoke at length about the contract and her expectations. I promised to always provide her with love, proper health care, training, proper food, everything she needed for life. If I could not provide these things she was to only be returned to her breeder. If I ever had any questions, her breeder was there to answer them. I was committed to providing my beautiful little girl only the best life.

On the 2 1/2 hour drive home I actually talked to her and told her how much she would love her new home. How much she was already loved. All about her new “siblings.” How well she would be cared for. People have often remarked they would like to come back as one of my animals. I felt confident in the promises I was making to her.

Matilda settled in beautifully. A happy girl, always eager to please. She was an absolute dream to train. She was even funny. She provided great comic relief to our obedience class when at 95 lbs. she would proceed to “down” on top of Willow (my current service dog at the time) looking like Snoopy on his dog house. However, I should note she would do it on a hand signal. 🙂 Yes, she was brilliant. A comic but brilliant.

At two years old she began working. She had been vetted, proofed by our trainer and everything looked great. She was the magnificent girl I knew she was when I spotted that little Purple collar puppy. Until……….

On July 7, 2018 Matilda went into heart failure. What seemed like an innocent clearing of the throat led me to listen with a stethoscope and what I heard was terrifying. When we arrived at the vet, she looked normal. Happy, tail wagging, she looked like Matilda. But  quickly a chest x-ray revealed the horrifying truth. Her chest was filled with fluid and she was in heart failure. And then the question I’ll never forget “You’re not feeding grain free are you?” I immediately knew why she was asking. I had just read an article by Dr. Lisa Freeman from Tufts linking grain free diets to DCM (DilatedCardiomyopathy) in dogs and the answer was yes. I had been feeding grain free. I burst into tears. “I did this to her!”We found a cardiologist on duty in Boston, injected her with IV Lasix to immediately begin off loading the fluid and began the trip to the ER in Boston. In a sad twist of irony, I had decided to switch her food after reading Dr. Freeman’s article. It was delivered that day.

During the entire excruciating drive into Boston all I could think of was “I failed her.” I kept apologizing to her. It was my fault after all.  I chose to feed her that food. The food that now has her in heart failure. I knew the very real risk of sudden death. How would I ever live with myself? I had promised her I would provide her the best of everything including food and healthcare. Yet, I fed her a diet that may well cost her, her life. I failed her, is all I could think of.

When we arrived in Boston the cardiologist confirmed she was in CHF with DCM and agreed that based on her history, it was most likely diet related. Her Taurine test that came back a few days later was actually low. While encouraging in that diet related or Nutritionally Mediated NM-DCM patients can recover, there is no guarantee. Nor does anyone know to what extent. She would be placed on Lasix to manage fluids, cardiac medications, her diet obviously changed and Taurine supplements started immediately. She also couldn’t work until she was out of heart failure and would have strict activity restrictions. And she was hospitalized for two days. I had truly failed her.

Thankfully, she quickly responded to treatment and was cleared to return to work within a month. She was keeping the fluid off. She was drinking and peeing like mad and I didn’t sleep a full night for two months but it was after all, my fault. At two months she went to Tufts for an echo and exam. Much to everyone’s surprise she had actually improved already. Her heart had decreased somewhat in size and was functioning better. The same was true two months later and we were able to decrease her Lasix. In January her progress stalled. We had actually decreased her Taurine in November and I felt it may have contributed. We increased it again and her March exam once again showed improvement.

She remains on cardiac medication and Supplements. She also still has restrictions no three year old dog should have. She can’t run laps around the yard. No “zoomies.” She can play in the house but she’s watched for any signs of exercise intolerance. Will she ever recover fully? There’s no way to know. Some dogs do, some don’t. The only definite in this equation is that I failed her. And that is something I will forever live with.

So on this her third birthday when she should be running outside she lay next to me as I write this. She looks at me with those same eyes that Purple collar puppy had that seem to know all. And I know she like myself, does not want another dog to endure this nightmare. Another owner to feel the guilt of failing their dog. This disease is preventable. Matilda’s case was reported to the FDA and is being followed by them along with many other cases that have been reported. Dr. Joshua Stern published a study in December of 2018 regarding this issue. I beg you, if you have been feeding your dog a “suspect” diet (boutique, exotic or grain free) PLEASE have them examined by a board certified cardiologist. Echocardiogram is the ONLY way to truly diagnose DCM. Unfortunately, DCM is silent until it’s not. By then it may be too late. Also, sudden death is actually a symptom. If your dog is diagnosed and was on a suspect diet, please report to the FDA. It is so important the FDA have this information as they proceed with their investigation.

AND please change your dog’s diet to a safe food! That would be a food that meets WSAVA guidelines. Right now that’s limited to Purina, Royal Canin, Eukanuba and Science Diet. And regardless of manufacturer, until this is sorted I would avoid grain free. Also, that AAFCO statement you read on the bag? Turns out it’s pretty meaningless with most manufacturers. For example, Matilda was fed exclusively Taste of the Wild. A Diamond product. It had an AAFCO statement. Did they do feeding trials? NO! Did they do any trials when they changed the formula? NO! Do they employ a veterinary nutritionist? NO! Nutrition is so important. It’s also not costly to feed a safe and balanced food. In fact, those boutique brands are charging premium prices for what may cost you the ultimate price. Your dog’s life.

So on this, Matilda’s third birthday, I can’t undo my failure. But I can try to help prevent others from falling prey to the same mistake and also failing their dogs. I am providing links to a number of great resources. The first is the Taurine Deficient DCM Facebook page. I normally eschew any medical advice given on FB but this group is unique.  It’s admin’s and moderators are actually veterinarians, veterinary nutritionists and other extremely knowledgeable people. The information on the site is all scientific and research based. I highly recommend it.  I’m including the original FDA warning and the follow up. Dr. Freeman’s articles. as well.

I hope you find this information helpful and most sincerely, I hope you won’t fail your dog.

I love you Matilda to the moon and back a thousand times over. And I will be forever devastated that I failed you.

https://www.facebook.com/groups/TaurineDCM/

https://www.fda.gov/AnimalVeterinary/NewsEvents/CVMUpdates/ucm613305.htm

https://www.fda.gov/AnimalVeterinary/NewsEvents/CVMUpdates/ucm630991?fbclid=IwAR1DC55jvuS58AO4wXB3UrmvZ1bSpn44bH-tcpcK_gIMJaXiZXs2yNfsS9M

https://www.fda.gov/AnimalVeterinary/ResourcesforYou/AnimalHealthLiteracy/ucm616279.htm

http://vetnutrition.tufts.edu/2018/06/a-broken-heart-risk-of-heart-disease-in-boutique-or-grain-free-diets-and-exotic-ingredients/

http://vetnutrition.tufts.edu/2018/11/dcm-update/

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209112

https://www.vetmed.ucdavis.edu/news/update-nutrition-services-concern-between-diets-and-dcm-dogs

https://www.mspca.org/angell_services/linking-diet-to-dilated-cardiomyopathy-dcm/

https://www.wsava.org/Committees/Global-Nutrition-Committee

https://www.wsava.org/guidelines/global-nutrition-guidelines

#DietRelatedDCM #GrainFreeFood #TaurineDeficiency #BEGDiets

#TasteofTheWild #DiamondPetFoods

It’s times like this I really miss my “word nerd” partner Renee the most. I could go sit in her kitchen and she could help me figure out how to best articulate what I want to say. It’s funny too, because this is a subject Renee and I have spoken about often. You see we both rely on HUGE service dogs just to navigate our daily lives. Great Dane service dogs. They’re not easy to hide and you see them coming from afar. They draw tremendous attention but then, so does any service dog. Renee and I have often said we long for the day the dog just becomes invisible and we can just live our lives. I’m not sure if or when that day will come but let me try and explain what that means.

Over the last year, I’ve had to engage the assistance of a number of other people to help me as I’ve traveled this breast cancer journey. I’ve had to use alternate handlers for Willow during my biopsies, surgeries, MRI’s and during my hospital stays. It’s given them a glimpse of the world through my eyes. More so than before when I still would would an alternate handler on occasion. This has been much more concentrated.

Yesterday was a great example. I had a MRI and brought my friend Terri for Willow. Terri has actually been with me and Willow since the beginning so none of this is new to her. We of course were met with the usual “beautiful dog”, etc. and led to the waiting room. I was also handed 2 pages, front and back, to fill out of what seemed like my entire medical history. As I’m attempting to fill out what I already find a frustrating form, I’m now being peppered with questions from people in the waiting room. “How old is she?” “They don’t live that long do they?” (my personal favorite) “How long have you had her?” “What’s her name?’ “Wow, she’s big!” “Is she always that good?” In my head I’m screaming “CAN I JUST FILL OUT THIS F*&*ING FORM?!” Thankfully, Terri was running interference. Then the bystanders begin to regale us with the tales of their dogs. How they feed them scraps of chicken (Terri could see me scowling), or how they “just don’t listen.” Kudos to Terri who actually said “have you tried training your dogs?” I of course, wanted to laugh as I’d heard this a million times. This continued on. At one point they were going to test the fire alarm in the hospital. A tech appeared and said “oh, she’s not going to like this!” I looked at him and said “what?” he explained the fire alarm. By now I was thoroughly annoyed and admittedly snapped. I said “Her? Trust me, she does fire alarms all day long IN fire houses. It’s not a problem. Oh, and she’s a service dog. she’s bomb proof.” Terri pointed out I’d been a bitch and owed him an apology. Fair enough.

I got a respite as I got to lie in the magnet for literally 2 hours. I’m still not sure who suffered more. When They had Terri bring Willow to get me from the magnet she (Terri) was visibly worn down. I could see they’d gotten to her. On the ride home we discussed her experience. She told me that she had been treated to stories of everyone’s dogs and how poorly trained they were. How spoiled they were. Their schedules and basically their life stories. I then said “do you see why I was a bit of a bitch?” That’s my life everyday. Every time I go the grocery store, the drug store, the doctors office, even awaiting my double mastectomy, EVERYWHERE! I can’t just go and “be.” Sometimes I want to just sit in silence, sometimes I don’t feel well and just need to get in to the store and get out, sometimes just like the average person I may be just having a bad day. I just want to live my life such as it is. Terri pointed out that she noticed I don’t make eye contact like I used to when I’m out.  She said she now does this when she’s with Willow. I laughed and said “that really is rule one. Don’t make eye contact.” Rule two is try not to engage by keeping responses brief. She commented that she really understood now what it must be like everyday. The dog/people part, yes.

I compared it to one of the guy’s sneakers. What if I had suddenly fixated on his shoes? “oh, I have a pair of sneakers!” “I wear them walking.” “I LOVE my sneakers!” “I wash them twice a week” I sleep with my sneakers.” “I bought them special laces” I’m guessing he’d tune right out. You also wouldn’t do that with someone’s wheelchair. “Oh I LOVE your chair!” “You know, I was thinking if I ever needed a wheelchair, I’d go with a TI light.” “What kind of pad is that?” “Is it comfortable?” “I’ve heard those tires wear out quickly.” “Can I pet your wheelchair?” you get my point.

Do we know when we choose a service dog that they will attract attention? Yes. It’s actually something you have to consider when deciding if it’s right for you. And honestly I appreciate the passing compliment. “beautiful dog” is always wonderful to hear. Working now with Matilda in public people can’t believe how well trained she is and still a puppy. I love hearing “she’s amazing.” I even don’t mind answering the well meaning question about service dogs as I’m always happy to educate. But honestly, if you see a service dog team in public remember they’re just trying to go about their lives as you are. If you have questions you may want to preface it with “Is this a good time?” It may not be and they may be happy to get back to you. What we really want is to just sit and fill out our two pages of forms uninterrupted with our service dog lying quieting by our side. Just as if we had set a cane there. We actually spend many hours training so our service dogs essentially become invisible. To lay quietly, do their jobs without disturbance. They are our partners and while yes they are gorgeous, we honestly don’t have them for a conversation piece. We have them so we can simply try to live our lives as any able bodied person does. Please be mindful of that.

And guess what? We also are more than our dogs. We may be disabled but we still are people with other interesting aspects of our lives. Sometimes when you do speak to us, you may want to wander into those areas. For example when I first met Renee I didn’t see the huge dog at her feet. I saw these amazing arms on a woman. I just had to know how in the world she got those arms. In fact, my first words ever spoken to her weren’t about the dog.  I tapped her on the shoulder and said “Hey, where did you get those arms?!” Turns out, there in fact was an amazing story and person behind those incredible arms. So be mindful of that as well. We are not our disability or the tools we use to assist us. We’re still us. And some of us are pretty damn interesting like Renee.

As for the tech I needed to apologize to? I did. I told him I was extremely sorry for biting his head off. He actually laughed and said he now understood. I said I still was very sorry.

The upside of the day was we did get to speak to a woman who’s husband was a quadriplegic and would really benefit from a service dog. We were able to provide her with information and resources. THAT is a conversation I will always have regardless of what I’m doing or how I’m feeling.

~Willow and Matilda’s Mom

#Servicedogs #MobilityDog #MS

It’s Breast Cancer Awareness Month. I don’t think it’s a coincidence that I was diagnosed with breast cancer in this month both last year and actually exactly twelve years ago today. During those intervening twelve years I would celebrate every October along with every other survivor. I would make my donations to the walks, tell every one who would listen to get a mammogram and breathe a sigh of relief that I had done battle and won. I wore my radiation tattoos like a badge of honor. I would see them and remember “that year.” That year of surgeries and treatment that I got through and put behind me. I was a survivor. Little did I know…….

When I was diagnosed last year, I again was very fortunate. Although already invasive, we had caught it early. However my only choice was mastectomy. It’s been a year of mixed emotions and an incredible amount of surgery. I think even I was naive in thinking that the reconstruction process would be simpler. It’s not. Not if you’ve been radiated previously.  Yet, the results they are able to achieve are nothing short of amazing.

I will be having what will hopefully be my final surgery for reconstruction in the next month or so. By the New Year I should finally be recovered and putting this, once again, behind me.  I am again, a survivor. Again, the clock begins.

So I will do what I do every October. I make my donations. I will implore all of you to get your mammograms. One in eight women will be diagnosed with breast cancer. Early detection is absolutely key.  If fear is holding you back, bear in mind that the people who love you would be devastated to lose you. So if not for you, do it for them. If you have a lump or a concern and feel your doctor is not taking it seriously, seek a second opinion. If you have a family history that suggests early screening, do it! Please don’t fall victim to “it won’t happen to me.” We are so fortunate that we actually CAN screen for and treat this disease in so many cases. Please take advantage of that.

As for my radiation tattoos? Because I had skin sparing mastectomy, they’re still with me. I still see them every time I shower. I look at them and my new scars and think “Yup, you’re still a survivor” and even with MS it’s so much better than the alternative.

Now everyone go get “squished!”

http://www.nationalbreastcancer.org/breast-cancer-awareness-month

 

On May 11th, I underwent surgery to have my tissue expanders replaced with ‘permanent’ implants. They’re actually not permanent as the recommended life expectancy is about ten years. You then have them replaced.

The surgery also involved fat grafting and breaking up the scar tissue from the radiation on the left side. I went into it knowing that I would most likely need another surgery to do additional fat grafting as it’s impossible to know how much of the grafting will actually take.

Because my original plastic surgeon jumped ship mid way, I had my surgery in Boston which is something I would not have originally chosen. However, after meeting with this surgeon I knew he “knew” his stuff. His approach was exactly what I wanted and he was confident in his approach even though it was technically more challenging. He also was honest about the risk associated with the radiated side and implant reconstruction but, he had a plan should it fail. He was thinking ahead and I like that. He also loved Willow! Not a requirement but, it always makes me feel better to be with a dog lover. Empathy. He also agreed to let me go home rather than spend the night in the hospital. This was key as all my friends seem to be “directionally challegened.” Seriously. I explained to him that to have people coming into Boston to care for Willow would cause multiple search parties being dispatched to look for her caretakers. Going home would be easier for all concerned. 🙂

The day of the surgery was a bit odd. We arrived on time and despite having told everyone ahead of time about Willow, there was a brief glitch. The hospital had a policy regarding service dogs that was absolutely illegal. I calmly explained to the nurse with the five-page policy where they went wrong and what the ADA regulations were. I went further and explained that they would be liable should I fall because I did not have my service dog. Within five minutes the issue was resolved and we were on our way to pre-op with Willow. They had found a room for us that would serve as both pre-op and PACU.

Things got a bit stranger when anesthesia arrived. I’d had my pre op exam a week prior and given them my history from my prior surgeries. This anesthesiologist began by asking the standard questions then…..”have you ever had any experience with Ketamine?” Huh? “no.” Then the really odd question…….”Have you ever experimented with acid?” He asked as if it were just another question. “What?!” I then laughed and said “God no!” But, I started to wonder what in God’s name is this guy going to give me?! After he left I looked at the person with me and asked if that really just happened. Yes. Well that’s new.

I awoke feeling as if I’d gone a few rounds with a MMA fighter. To achieve the fat grafting, they do liposuction. You may be thinking “Wow! Free lipo!” The reality is OW! Lipo! It hurts! To the credit of that inquisitive anesthesiologist, I apparently slept like a baby in PACU unlike my other surgeries, until it was time to wake up and get ready to move.

The next day I could not wait to take a peek at my new breasts! I pulled back the surgical bra and looked down. They were amazing! The right was truly incredible. The left, radiated side was severely bruised given all that was done on that side but, it still looked great. Best of all, they felt so much better than the tissue expanders! Unfortunately I began to run a rather high fever. I called the surgeons office. Could I email pictures? YES! Now I can really have a good look at my new breasts! Off came the surgical bra and a photo session ensued. They really did look great and only 1 day post op! I was thrilled! We agreed there was no overt sign of infection but I went on strong antibiotics. The fever subsided within a couple of days.

My healing was unremarkable. At my first post op visit it was already apparent we would need additional fat grafting on the radiated side. However, we will wait three months to really see what’s needed.  The non-radiated side looks amazing! It also feels amazing! You honestly can’t tell it’s a reconstructed breast.  The radiated side looks great but, definately needs more fat which is to be expected. As was explained to me, radiation and implants are not always the best of friends. However, because of my MS we really were trying to avoid doing a flap which would have been the ideal choice.

What I’ve learned on this journey is the importance of being your own advocate and participating in the decision-making regarding your treatment. Cancer is SCARY! When you first hear those words “You have cancer” your brain goes into overdrive. You begin to process so very many thoughts all at once and you often forget to focus on what choices do you have? It’s important to take a breath and ask for help if you need it but, take the time to have meaningful conversations with your doctors. What are your surgical options? Your treatment options? The upside? The downside? What is the actual data for the different options. Please use actual studies and NOT social media for your information.  I actually heard that one very large hospital system here does not offer “nipple sparing mastectomy” as policy! That’s unacceptable! Not every woman is a candidate but, for those that are, it should be an option. The same is true for the new Air Expander technology. While not widely available yet and not for every woman, it’s yet another option that should be available. It’s your body, your health, your future. Ask Questions and then ask more questions. Demand to be heard. To be included in the process that will determine your future and your outcome.

There is a light at the end of this tunnel but no one sees it as well as you!

#Breastcancer #Mastectomy

After spending the winter without breasts, I’d actually become used to seeing myself flat chested. There actually were even some advantages. Some of my shirts fit better, I could sleep on my stomach easier, I’m gueassing if I still golfed my swing would have improved. However, I knew I still wanted breast reconstruction.

On February 10, I began the process of breast reconstruction. Because of my MS, I was not a candidate for a flap procedure. Therefore, implant reconstruction was chosen and tissue expanders were placed.

Tissue expanders are used to stretch the muscle and skin after mastectomy to prepare the site to accept the implants. Expansion is done over a period of time by injecting saline into the expanders weekly or on a schedule that fits with your body and it’s response to the process. I’ll be frank, it’s not fun. While my non-radiated breast was much easier, my breast that had been previously radiated was beyond tight and well, it was simply painful to endure. Now you may be picturing a nice little vaccine sized syringe being used for these injections. Think again. For the horse people out there, think of the syringes you find in the barn. 50 cc and yes, it’s full. No, they don’t numb you.Got the picture yet? A magnet is used to locate the “fill port” and then they inject through the skin and muscle. Today I finished my 6th set of injections.  You may be thinking there’s got to be a better way! There just so happens a new expander called “The Air Expander” that just received FDA approval and is slowly making it;s way into use. Thank God!

The best part of the process was when my plastic surgeon came in to my 3 week post op visit to tell me he was retiring. BEFORE my reconstruction would be complete! WHAT?! There were so many issues to sort out! Insurance, our plan we’d put in place from the time of my mastectomies, finding a new surgeon. My head was spinning! Oh, and I was receiving my first fill injections. My first thought was to rush the process and have him try to finish what he could. I knew it wasn’t sound but, emotionally I just wanted it done. Once I calmed down, I began the search for a new plastic surgeon. Two actually turned me down citing that they didn’t like the idea of finishing another surgeons work. That actually is quite fair.

I reached out to my breast surgeon who referred me to a plastic surgeon in Boston. His secretary was amazing and understood my situation. I booked an appointment. I did however, have reservations about having surgery downtown.

Enter my cardiologist of all people. First, I have an amazing cardiologist. I’ve always loved him and now even more. During my regular checkup he inquired how everything was going. I told him about my plastic surgeon issue. He asked if I’d like another opinion. “Yes!” He explained there was a wonderful husband and wife team across the hall. Would I like him to text him and see if they’ll see me? “Yes!” He proceeded to text him my story and received an immediate reply. Of course they’d see me. He said when we were done he actually  walk me over and introduce me. He did and they saw me the next day!

I met with him and immediately felt comfortable and confident in his abilities. The downside was he was honest and explained the process would really require 3-4 more surgeries to achieve the best results. While I understood why, I’m just so ready for this to be finished. However, I do want the best result and the previously radiated breast does present it’s own set of challenges. I’ve honestly been so very fortunate thus far with no complications because we’ve proceeded slowly. Why push it now? Future surgeries will include fat grafting to restore tissue over the implants and “smooth out” any imperfections. Unlike breast augmentation, after mastectomy there is no tissue on top of the implants other than muscle. Fat grafting restores some of that.

The next step will be exchanging the tissue expanders for the final implants. That will hopefully happen in the next 4-6 weeks. The interesting aspect is the ability to somewhat select the “breasts” I want. Size (I don’t plan on working the pole so not too big), shape and even manufacturer.

If there is anything I would recommend after going through this, it would be do your research and be your own advocate. Ask questions, get second and even third opinions. I’ve been shocked to learn how many women didn’t know about nipple sparing mastectomy. Many surgeons apparently still don’t even discuss it as an option yet, it may be a great option for some women. There are many options for reconstruction. Each with it’s pluses and minuses. Explore your options and find what’s right for YOU. While yes, this process has not been a walk in the park, I expect the results will be well worth it. It’s so important to remember it’s YOUR body. YOU need to collaborate with your doctors when making decisions. If you’re truly not comfortable communicating with your doctors, get a patient advocate to assist you. It’s YOUR body and YOU need to be a part of the decision making.

I fully expect to be at Mardi Gras next year flashing “The NEW Girls” 🙂 and having all of this merely a faint memory. It always looks better in the rearview and this definitely will.

#Breastcancer #Mastectomy

 

 

 

On November 23 ,2016 I lost my breasts. No, I didn’t misplace them. Although I do have a couple of amusing stories of women with prosthesis who actually have misplaced their “breasts.” Eventually like so many things we misplace, they turn up in the darndest places. Mine however, were gone for good. They’d been surgically removed due to breast cancer. They would not be turning up in the dog’s toy box. (true story) I was horrified, terrified, angry and shocked. That quote about God not giving you more than you can handle? It’s crap. Life just hands out whatever it likes and you can either choose to deal with it or curl up in a ball. Or you can do both actually. Curl up in a ball for a day while the shock sets in then unfurl and go deal with it.

I actually wasn’t going to write about this at all. It’s not in my nature to whine about my health issues. However, while discussing it with someone else who was just diagnosed she suggested I do. She pointed out it may be helpful to other women facing the same diagnosis. To that end, I decided to share my story which is ongoing.

On November 1, 2016  I got ‘that’ call. You know the one. The call you know is coming yet, you pray never comes.  I’d had a screening MRI which led to a MRI guided biopsy a week prior. I had actually told the radiologists doing the biopsy (who I knew) “It’s malignant.” He assured me it most likely wasn’t. I should have had him put money on it. However, given I was watched so closely, I thought it would simply be DCIS.  You see, I was already a breast cancer survivor. In October of 2004 I had gotten ‘that’ call and proceeded to have a lumpectomy and radiation. I also had my ovaries removed. Given that I was high risk, I had continued to be screened every six months. A protocol of mammogram and MRI. So, when I got ‘that’ call on that November morning telling me I had Invasive Ductal Breast Cancer my reaction was “seriously? again?!!!!” DCIS, sure. But invasive? My background and my history afforded me some advantages. I knew what this meant and I knew what my options were and they were limited. “I’ll call Peter” (the plastic surgeon) I said to my breast surgeon delivering the news. I knew my only option would be mastectomy. I had also decided long ago that if this happened, I would have bi-lateral mastectomy because of my risk and I would have immediate reconstruction. I also wanted nipple sparing surgery wherein the skin and nipple is preserved. Thankfully, the location and size of the lesion made me an appropriate candidate for this type of mastectomy.

I met with my breast surgeon later that day. Yes, she’s that great. We discussed everything again and agreed on the approach. She wanted to speak with my neurologist (crap! that’s right! I still have MS!) to discuss my MS medications and any concerns my neurologist might have. I said I would arrange it. I also had my appointment set up with the plastic surgeon for two days later. We made our plan, got my lab slips and after meeting with a nurse, I was on my way home. Then it hit me. I would be losing my breasts! I liked my breasts. They weren’t the breasts of my twenties but, they weren’t half bad and they were MINE! Suddenly, I liked them more! They had been asymmetrical since my last lumpectomy. Actually, almost a full cup size difference. I never wore a prosthesis. Instead, I was able to disguise the difference thanks to some wonderful Victoria Secret bras. Suddenly though, they seemed perfect to me and I really didn’t want to part with them. Yet, I knew I had no choice. The cancer had to go and this was my only choice. I would have reconstruction and hopefully end up with perkier, symmetrical breasts. I focused on that and tried to move forward.

I also had concerns about the cancer itself. Had it spread? If so, how much? Those answers wouldn’t come until after the surgery and we had the final pathology from the breast and lymph nodes. Unfortunately even with all the advances in cancer treatment, we haven’t done away with the waiting. the agonizing waiting. I decided the best approach was to do what I always do when stressed. Break out the Comedy. I watched all the stand up I could find. Kathleen Madigan (highly recommend her!), Lewis Black, Eddie Izzard and then I stumbled across Tig Notaro. Imagine my utter shock and surprise as she began telling her story of having breast cancer and a double mastectomy. Then……She…..Took her shirt off! She actually performed the last part of her special with her shirt off and her mastectomy scars on full display! First, I burst into tears. Then I was fascinated. She looked great! Her scars looked amazing. I then thought about what I’d just watched. She was able to stand in this packed theatre, while being filmed and was completely comfortable with who she was. I was amazed and inspired. I relaxed a bit. I would be fine. Then I got the other ‘call’.

Just as I had started to accept what was going to happen I got another call from my breast surgeon. She had spoken with the plastic surgeon. Although my visit with him went well and we planned immediate reconstruction, he had reservations. serious reservations. He had expressed concerns to me about my increased risk of infection and failure due to both my MS meds and my prior radiation. Apparently now, he was deciding he didn’t want to do immediate reconstruction. My head exploded. This meant I would be waking up without breasts! I also would be waiting and hoping he decided to reconstruct me in the future. I was horrified. I was also angry he didn’t call me himself and actually voiced that opinion stating “you tell him to pick up the phone and have this conversation with me himself.” Yes, there were some expletives thrown in there. Did I mention angry and horrified?

To his credit and I’m sure the message was delivered verbatim so I give him a great deal of credit, he called. He proceeded to explain his grave concerns. Medically I knew they made sense. Emotionally, I was having a hard time hearing it. I decided to focus on the technical as a way to cope. I asked him to formulate a plan to provide the best outcome for the skin and nipple placement. Given there would be no tissue expander placed, there would be a risk of the nipples lateralizing (moving to the outside) during healing. He agreed to still be part of the surgery marking me for optimal incision placement and then “taping” the skin and nipples in place with a large Ioban bandage to fix their placement. (It worked beautifully)

The other thing about having breast cancer (or any illness) is you do have to tell people. You really have to tell them if you’re having a double mastectomy. Even the most inattentive will probably notice. Eventually. I told my friends and family and tried to reassure them. It would be fine. We caught it early. It’s interesting that you’re the one with cancer and somehow you become the leader of the cheering section. However, I couldn’t exactly say “this might not be okay.” There were a couple of people who did know the truth. They knew that my MS drug had  suppressed my immune system which not only put me at great risk for infection but, gave the cancer a big advantage. That wasn’t exactly comforting. I chose however, not to share that with everyone. Why should they worry too? We’ll take it as it comes. If I need more treatment, I’ll let people know.

The day of surgery came. Oddly, I was much calmer than I anticipated I would be. Perhaps, I had just accepted my fate or perhaps it was denial. Either way, I was nervous yes but, not a wreck. I had actually expected to be a mess. When we arrived at the OR we were greeted with “Oh, This must be Willow!” I was a bit taken aback. Yes, I had called ahead to ensure they knew I would have a service dog. My Surgeon had also made note of it on my record but, I couldn’t help wondering if they knew who I was or why I was there. The pre-op procedures are a bit lengthy but went well. If you’re having a sentinel node procedure as well, you get a tour of the hospital prior to surgery. First a quick trip to the procedure area where the radiologists injects your breast with the blue tracer that will identify the sentinel lymph nodes during surgery. Then off to Nuclear Medicine where you wait for a bit then they verify that the tracer has actually made its way to where it needs to be. Finally, you’re returned to pre-op holding. During all of this, Willow just did her job as if it was just another day. She pulled my wheelchair all over the hospital wowing all the onlookers.  Admittedly I kept thinking “when can I have the drugs?” Thankfully, the nice man from anesthesia arrived with that lovely syringe and off to sleep I went. Looking back, I never said a proper goodbye to my breasts. I’m guessing if I had, the people around me may have thought I’d already been drugged. Willow left with her alternate handler oblivious to what was occurring.

When I woke up I was not a happy girl. Of course, Willow had been brought back and was right at my side on the floor.  I don’t remember much from the recovery room but, I’m told I was quite vocal about my pain, a nurse who had told me “mastectomy without immediate reconstruction isn’t that painful”( IT IS! ) and a few other choice criticisms. All apparently done while pushing aside my oxygen mask and then falling back to sleep. I did however, apparently gush glowing reports about my breast surgeon. Thank God! I’m told she was standing right there. Once I really came around I was curious. Oddly, I really wanted to see what I had been so terrified of. When the nurses came in to check my drains and dressing I looked at my chest. I was amazed! I wasn’t horrified! I was impressed! I thought “wow, they really did a great job.” I didn’t see a body that had been deformed. I saw an amazing surgical site that was going to heal beautifully. Admittedly, it was different from the body I came in with but, it wasn’t terrifying. I thought “I can do this.” Of course, I also thought “where is that nurse with my pain meds?”

As I spent the night in the hospital, Willow was spectacular. She lay quietly on the bed we had made for her in the room. Only moving when asked to assist me with a nurse, to the restroom. Nurses, doctors, aides and visitors in and out all night and she lay perfectly quiet just watching. I had made arrangements for someone to feed and walk her at the appropriate times. She was the professional she is. Going out quickly and returning to her bed to wait and watch. I must say, the hospital was also wonderful. They placed a sign on my door “Service Dog in Use” to alert anyone to her presence. When we left the next day, Willow pulled the wheelchair down the hall. She obviously wasn’t aware but, I was leaving a changed person. My body would never be the same.

Thankfully, my lymph nodes came back negative. The cancer hadn’t spread. The pathology also showed that the lesion had been very small. we caught it very early. No chemo! Thank God for good screening! Now I just had to heal and start reconstruction. I healed beautifully. I had three drains in which all came out at different times. I will say this. If you EVER have surgical drains in for any length of time, go drugged to have them removed! The first drain was removed and I thought “oh that was easy!” Ha! That drain was a small, short drain. No big deal. The second drain was in my chest. As the nurse pulled it out, I honestly thought I screamed. On the way out I said to the person who drove me “I’m sorry about the screaming but that really hurt. It actually still hurts.” She laughed and said “you didn’t scream. You just sort of glazed over for a bit.” It was then and there I decided when the last one came out I would be medicated. I was and it did help. Immensely.

Over the last couple months as I’ve been recovering I will occasionally catch a glimpse of my profile in the mirror. It still surprises me a bit. It doesn’t scare me or bother me per se, just catches off guard a bit. I’ve not bothered with prosthesis while awaiting reconstruction. In this house, they would end up in a dog’s mouth at some point. While that would be amusing, it would also be a waste. They’re quite costly for the insurance company. I’m also very fortunate that this occurred during the winter as I can camouflage quite a bit with big sweaters. If I were to be waiting longer for reconstruction, I may well use prosthesis. Though I’m not sure. Oddly as time has passed, I’ve become more comfortable about my changed body.

Fortunately, I did heal well and the plastic surgeon agreed to begin reconstruction. In a couple of weeks I will be having tissue expanders placed to stretch the tissue and prepare it for the permanent implants. The process takes about four months during which time the expanders are injected with saline to gradually fill them and stretch the tissue. I’m told this is actually the most uncomfortable part of the process.

It’s interesting to me that I’ve actually had people ask me why I want reconstruction. It’s a complicated answer. Perhaps some of it has to do with how much we as a society still judge women by appearance. It’s not something we should be proud of but, we do it. It’s simply a fact. Some of it has to do with ‘balance’. I’ve always had breasts there and not having them there just seems odd. Off balance. I also don’t want to have to buy all new clothes. I’ve basically been the same size for as long as I can remember. So it’s also an economic factor. It’s psychological. I’ve always liked my body. I’ve always had breasts. I’d like to maintain that same appearance. There are many more reasons for wanting reconstruction but I’ve found when asked that question now I just default to the simple one. Because, “I lost my breasts.”

 

Afterthought: If you know someone battling cancer (or any debilitating illness) there are some things you can do that are helpful and some that aren’t.

Let’s start with those that aren’t. It’s not helpful to copy and paste anything on Facebook. No one’s cancer, MS, Parkinson’s, Ataxia, etc. was ever cured by a Facebook post. It’s also not helpful to share your story of “my aunt Suzy DIED of xxxx” As a patient, we’re trying to focus on LIVING. Also, while I’m sure you mean well please keep all your internet searches on bat crap crazy diets, the person who was cured by ingesting parasites (true story), etc. to yourself. Our brains are swirling with actual, real information delivered by medical professionals. We have many decisions to make. Don’t tell us “It will be fine.” Guess what? It may not be and we know that. It also feels patronizing. Also, NEVER tell a woman “they’re just breasts” if she’s facing a mastectomy. There is NOTHING you can compare this to and unless it’s you? You have no right to speak, so just don’t.  This one may surprise you but, don’t continually ask “how are you?” I made this mistake once myself with a friend who was terminally ill. Her answer taught me a valuable lesson. I asked and had my head handed to me. She replied “How am I? I’M DYING! that’s how I am! I didn’t plan on this and I’m pretty pissed off so stop asking!” I actually laughed because of her delivery but, I then asked her what a better question was. She said “How’s today going?” or something more relevant to that moment. I realize how much sense that makes. You become incredibly tired of hearing “How are you?”When you’re battling a serious disease.  There are many more “don’t s” but the point is, think before you speak or act. Ask yourself “Is this helpful?”

As for what IS helpful, SHOW UP!  Be present! Listen! Sometimes people just want to talk about how they feel. They may be frightened, angry, sad. Just listen. They don’t necessarily need answers, just to talk. Help them with daily tasks. They’re exhausted! Grocery shopping, house cleaning, laundry, cooking, pets, shuttling kids, anything that helps enable them to rest. Driving to doctors appointments. Visit if they’re up to it. they may be suffering from “cabin fever” and would enjoy some company. If they ask for help finding information, do your best to find vetted, factual material and encourage them to always speak with their physicians. The most important thing is simply be there. Even if it’s a phone call to tell them a funny story. Just be there. Who knows? One day you may get a call from a friend with breast prosthesis frantic, that says she needs your help. You’ll hear “I lost my breasts!” and off you’ll go to look for them………

#Breastcancer #Mastectomy

 

 

Willow here:)

So, it’s been almost three years that I came home to work with mom! Time does fly when you’re having a blast. You see, I love my job and I LOVE my mom. I get to go really interesting places, I help educate people (my favorite are the guys and gals in uniform with the big trucks), I have a really cool car just for me, I sleep on the bed, I have awesome siblings, great friends and I get to help mom whenever she needs me. I love being needed.

I also love that mom totally respects me and what I do. I’m not complaining but, I do work hard. Sure, I look adorable when you see me out in my harness with mom. In fact, a very nice man stopped mom just last night in the grocery store and simply said “you both are just beautiful.” Mom smiled and thanked him.

But here’s the thing, that was last NIGHT. Mom is so great about respecting the fact that I do have limitations! While yes, technically I am “medical equipment” I am still a living, breathing, being. I am not a walker or a wheelchair that is indifferent to environmental conditions! Lately, we have been having a heatwave. It’s been brutal! I know it’s really bummed mom out when she’s had to cancel or reschedule plans because of me. However, I love her even more for respecting the fact that making me work in 95-100 degree weather would be incredibly uncomfortable and dangerous to me. I understand my SD friends in the south wear “booties” to protect their paws when going from the car to their destination. I love that! They apparently have awesome moms and dads too!

I know mom tells people all the time that there are many things to consider when you are thinking about a service dog as a tool for your disability. Well, this is another one of those things. We don’t have screws you can simply tighten or tires you can fill when they’re low on air. You can’t fix our “squeaks” with a can of WD-40. We like you, have blood coursing through our veins. Only unlike you, we don’t “sweat”, we can’t take our “fur coats” off,  we can’t tell you we’re about to pass out from the heat or we’re  nauseated. It’s something to consider that while yes, you’re gaining an amazing partner (If I do say so myself) you’re also now responsible for another living being. Their welfare and in turn yours, depends on your good judgement and willingness to sometimes accept our limitations. Those limitations can impact your plans just as you not feeling well may cause you to change plans. It’s something that must be given thoughtful consideration.

As a team, we work with each others limitations. Mom has hers and I have mine. I don’t expect her to go running with me and she doesn’t expect me to work in conditions that put me at risk. She even is great about “checking in” if she thinks I may not be feeling well. She always gives me “time off” if she thinks I need it. We are partners who respect each others needs and…..

LIMITATIONS…….

~Willow- Woof!

Typing courtesy of Blaise (The Good Cat) he has those little kitty paws:)

I once accompanied a friend to her breast biopsy. The cheerful nurse, trying to be helpful said “some women go back to work right after the procedure.” WHAT?! You see, I’m a breast cancer survivor. I had that very same procedure and I can attest to the fact that even Iron Woman could not “go right back to work.” It’s painful and you feel like crap afterwards.You also have an ice pack on your breast.  Telling a woman that, sets her up for failure when she can’t go right back to work that day. She then feels like she must be that one weak woman who just doesn’t have the “metal” to get through this like everyone else. NO!

I pulled the director of the breast center aside and explained what had happened. I calmly said “DO NOT EVER say that to another woman.” I then explained why. As far as I know, that practiced has ceased.

The same thing occurs in the disabled community. It’s very easy when you haven’t “stumbled” or “rolled” a mile in our shoes or wheels to make judgements. Judgements as to what we should or should not be able to do. Even people living with the same disease travel very different paths. For example, some people living with MS do quite well while in the remitting phase. They may have very long periods of remission. Their symptoms may be minimal. Until they relapse.  Others, may have horrendous symptoms and be progressive. Either secondary or primary. The fatigue alone can be crippling at times. Heat? Well, that will just set you back a mile. Muscle spasms? They like to pop up out of nowhere and stop you dead in your tracks. The list goes on.

The same is true of Parkinson’s, MSA, FA, ALS and any of the other disabling diseases. They are a continuum and unpredictable. Most in fact, quite sadly are fatal and as of now have no cure.

There’s also the time constraint of doctor appointments as well as physical and occupational therapy to consider. Also, medication schedules. Some, are quite extensive and despite the latest claims on the internet or what some “friend” told you, these medications ARE necessary.  So much time is spent just trying to “maintain.” And don’t get me started on the time it can take to simply get dressed and out the door! When you have dexterity issues, getting showered, dressed and yourself looking halfway decent takes much longer than it used to. It can honestly be overwhelming on “bad days.” Some days, you simply can’t and that’s okay. I’m convinced now, that’s why God created sweats and yoga pants.

My point is, unless you have been me or the other person living with one of these horrible, debilitating diseases, please DO NOT comment on how we should live our lives. DO NOT comment on what we should or should not be doing. For only we and our doctors know our  limitations and what’s truly in our best interest. We in the disabled community deal with enough discrimination and judgement from the public. We honestly do not need more.

Because unless…… you do not know…….