My "Mamm"wars: Fighting to Survive Stage 4 Breast Cancer

This is Matt unfortunately Melissa did not get finish her last entry so I will take it from here.  I will try not to have any typos or grammatical errors.  Melissa would really not like that, but she was my official proof reader for all important documents. Melissa and I always strived to look for beauty even in the darkest of times.  It is not always easy but it is always there when you look hard enough.  Our situation the last year and half have not been ideal there were lots of tears and dark times, but the beauty was overwhelming. Whether it was a note, meal, flowers, or text a a low point or just the love we felt from family or friends.  The beauty was there.  We had so many people praying for us and for Melissa to beat cancer once and for all, but I also prayed that Melissa would be pain free and if it was God's will that she passed peacefully.  Melissa was in so much pain last year.  She did not let her slow her down but she was hurting.  She packed more into a year with

While not much has changed medically, I feel my whole world has changed over the past few weeks. The routine is the same; wake up, take meds, and wait for whichever hospice person is coming that day. The boredom continues. The fact that it probably won’t change is setting in....big time. Monday is blood day, Thursday’s are results day. The tears are coming easier and more frequently, I’m tired of needing help to do anything and everything. It’s getting harder to stay positive. Reagan’s Birthday was this past Sunday. This was my second big goal. It was so bittersweet......I made it, but it’s most likely the last one I will. So I’m giving myself a reprieve of being all perky and optimistic and I’m taking some time to process my emotions and just be sad. Hopefully this will shake soon. Next goal is to see Chris in 2 weeks!

In all honesty, this hasn't been a great week, Neither physically nor emotionally. Everything is  changing and I can't keep up with it all. There's the physical side of things where I can see my body deteriorating daily. I can barely move my legs, everything is swollen and bloated and, in other words, completely disgusting. I can't dress myself, I need Matt to help with everything, and it's become both comforting to know I have him and yet so embarrassing. No matter how long you've been married, or with a partner, it's definitely still not a look you want them to see in your mid 40-s. So there's that reality I can't escape. The appointment with Dr. Adler went in a similar pattern to the past few weeks. The bilirubin went up to 4.8. That's not a huge increase but big enough to not allow for chemo again. Life is getting boring....I lay here and watch "Grey's Anatomy," read, try and blog and just try and get through the day. Emotiona

Another week has past and things have largely remained the same. Hospice came Monday to check all my sores (namely the hole in my  forearm), and take blood. They make sure I'm set for meds for the week and off they go.  Then my home health nurse comes in and does a wonderful sponge bath that I quickly get over my embarrassment from. Thursday is the big Dr. day where we get the blood numbers and are told the fate of my imminent future. This week, the bilirubin came down again!!! It isn't low enough to do chemo but we're getting there. It went from 4.4 down to 3.5! He said if it gets below 3 we would discuss chemo. I'm soooooo close. Except I am scared to rock the boat. I've been doing "ok" lately and don't want that to change. But we all know I'd do anything to hang on as long as possible. Emotionally the past two weeks have been really hard on me. I've fallen, pretty badly, a few times. In fact, Friday night my head played ping pong agains

Here we are again. I feel like I can just cut and paste a post. We saw Dr. Adler today and it was basically a "no news" appointment. Which, don't get me wrong, is WAY better than a "bad" news appointment. My bilirubin went from 4.4 down to 4.1. Down with the bilirubin is always what we want, we just wanted it down a bit more in order to convince Dr. Adler to treat me. Which is where "Groundhog Day" begins. We follow the same schedule yet another week. Hospice will do blood on Monday, Dr. appt on Thurs., and he said hopefully if the bilirubin is in the 3's I can convince him to do treatment. I trust all the prayers and positive energy and good thoughts are pushing me forward. The numbers are coming down on their own without treatment. I understand that at anytime this can change, but for now...it's not. For now.. I made it to my first goal. Back in June was when Dr. Adler first mentioned hospice and said I had "weeks to months."

What a bittersweet summer this has been. I'm dying. There's no denying that. I get weaker every day, I rely more and more on Matt and others. I sleep in the hospice bed in the living room, and yet I am loving every minute I have with Matt, the girls, my incredible family that is traveling in from all over the country to care for me, and my super close and amazing friends here. I definitely feel LOVED. All this grief that is surrounding us seems to have a forcefield of love that is keeping it somewhat at bay. Don't get me wrong, I have a witching hour every day from about 3-6. It reminds me of when the girls were babies and they would cry every day from 5-7. Then it passes and life moves on.  From 3-6 every day I need an Ativan and a nap and to reframe my head and my soul. The reality is I really do not want this happening. For as bittersweet and as much fun and love as we are sharing, I DO NO WANT TO DIE. IT'S NOT FAIR! This week has been emotional in other ways too

The past two weeks have pretty much been status quo around here. Hospice comes Monday and takes blood, and does a general once over. They replace prescriptions and take care of everything we need. Then on Weds, I go to Dr. Adler's office for the results of the blood and see if I qualify for chemo for the week. Dr. Adler says it's only a few more times he'll let me go back and forth between chemo and hospice. It's like a ticking bomb, where I only have a few more tries before I have to fully commit one way or another. In the meantime, we're trying to continue creating memories and having fun. We get out once a day whether it's to a movie, a walk on the trail or a trip to  Target. It feels so good to get dressed, put a little make up on and head out. Like I still do have things to do before I leave. Sometimes, like this past week, it's almost hard to come to terms with fact that I'm dying. I feel so good most days. So instead of laying around feeling s

One of the many benefits of hospice is that they can take blood from my port from  home. Last Monday, my lovely nurse, Lena, took blood for Weds appointment with Suzanne. I went in to the appointment all tough and bad, like I was going to TELL THEM that I'm not done. You can't force me to quit trying, blah, blah, blah. Well, I went in with my argument and Suzanne, Matt and I had a nice discussion. Apparently in my horrible chemo haze last week I don't even remember our visit to Dr. Adler. Regardless, the bloodwork shows the bilirubin is going up. Not good. That based on my behavior last week has Dr. Adler worried. So the question is, is the chemo helping to prolong my life or not. I cried. A lot. I explained that I have little girls, I can't just QUIT trying to save my life. Final results are hospice will take blood again next Monday, and I see Dr. Adler on Weds. It's this revolving door of wait and see, wait and see, etc. But how long can a person go on like

What a roller coaster life has become lately.. and not the fun one that grabs your heart and spins you around having fun all night long.   This is a grab you by the seat of of your pants and make you hold the pee in while fearing for your life. I've been in great fear for my life recently and have no clue when the train will stop. I've lost two days of my life this week out of sheer use of medicine and hiding out in fear. So apparently my one chemo infusion worked and the bilirubin was on its way up again so we nipped that in the bud. Dr. Adler said it was a Hail Mary pass and hopefully the chemo will keep it down. Monday we have more blood work and then we hopefully wanted, but it'll show if we can continue or not.  We'll I'm not giving up easy so I know I'll be doing another round. In other hospice news, this organization is vital to the family right now.   Tess, the social worker, is beyond amazing.  The girls adore her. They LOVE when she comes, they spe

Well, the shit storm continued for a few weeks more. I was admitted to the ICU on May 30 with a bactierial infection called C Diff. It was incredibly painful. I stayed in the ICU two nights, went to the step down unit for a few nights, and spent the last few nights in a regular room. It was during this stay that a lot of reality sunk into my head. I became very peaceful, which is something I hope will stay with me now. Since I left the hospital, my liver functions keep going up, and my bilirubin (jaundice is 3X what it should be at.). There's basically no hope. Treatment has been stopped as my liver cannot handle processing any more drugs, chemo, whatever. Dr. Adler put me in touch with Mission Hospice and they already came out yesterday. I''ll have my first case visit with a nurse on Tuesday. Hospice does nothing to cure the disease, only to make myself and my family comfortable. They already were scrambling to get me a wheelchair yesterday as it is impossible for me to

So much time has gone by since my last post, so many highs and lows, so many tears and moments of hope and joy. In a nutshell, Matt and I left for Lourdes on May 1 and had the most intensely beautiful week of our lives. It was full of prayer, grace, hope and love. It filled us up with this immense sense of love for our faith and our fellow man. Words truly can't describe what we experienced. I cherish these moments because they were shared with Matt, my guy, my rock. He truly gets everything I am going through and we can just cry and be together with no words necessary. I'm not going to lie. I didn't expect there to be some outrageous miracle waiting for me when we left Lourdes, but I also didn't expect everything to kind of fall apart either. While in Lourdes, I was in contact with my oncologist at UCSF to get into a clinical trial immediately upon my return. We flew in Weds night and Friday morning I was up in the City getting bloodwork, EKG and Echos done. Somethin

Shit seems to be going south quickly for me. After two rounds of iBrance, we have to now re-evaluate the treatment and possibly change it up. The first round ended with me in the hospital with the flu. This second round didn't end as dramatically, but I have been having major leg, scalp and scapula pains lately. My latest round of bloodwork was far from good. The alkaline phosphotase (indicator of bone turnover), and liver enzymes were both significantly raised. This could be simply a side effect of the iBrance, or it could be that the tumors are growing. The pains could be side effects, or they could be that the tumors are growing. Everything *could be* one or the other. The only thing that is certain is that I am being driven mad here waiting. I had more bloodwork done today, and scans are set for Thursday. I'll be having a CT scan and another bone scan since I haven't had one of those babies for almost a year now. Results will be in on Friday. I feel certain the bone s

There aren't adequate words to describe the last three days of our trip. We drove from Sedona to Williams on Weds, stopping at this ridiculous place called Bearizona on the way. Anyone who knows me knows my incredible, irrational, insane fear of bears. So WHY would I agree to go to a "zoo" where you can drive through animal habitats and they are just walking around carefree by your car? Well, because I love my kids I guess. And I figured if we all die together at least we'll always be together. Kidding...kind of... But seriously, this place was crazy. We had lunch and walked through the caged animal part first, and of course went to the nasty old petting zoo portion. I get scared and my knees start knocking when a turkey comes within 10 feet of me, which always amuses Matt and the girls. Then we braved the driving portion. It was all fun and games at first...the deer and elk were fine and not scary. Followed by the rams and goats. Then the signs start appearing to rol

Wow... I have been meaning to write so many times over the past month, but life keeps getting in the way. Or being too tired. I finally recovered from the flu, and life went back to normal...somewhat. But all the stuff I had meant to write about doesn't seem important now. All that is important now is this week. This time with the family. This trip. With so much excitement, we spent last week packing and preparing for our Grand Canyon experience that the Fairy Foundation was beyond generous to gift us with. Then Easter came, and the emotions hit me like a train. Every holiday is difficult these days as I always think "is this the last XXX day I will have." So those normal emotions hit on Easter along with "Wow..we're going on a great vacation because I am dying." Thinking about it that way kind of sucks and takes the fun out of it. But then 4 am Monday came, and as we piled into our Uber to the airport I began to get excited again. Monday was tough physi

What a shit show the past few days have been. Everything was going great, I was feeling great, and then BAM! Tuesday after school I felt a bit run down but nothing too bad. I decided to stay home Wednesday just to play it safe. Well that's when shit spiraled out of control. My temp kept going up, I couldn't stay awake, I was essentially a giant mess. I found myself in the ER on Thursday after my temp spiked to 102.4. Within a few hours, it was confirmed I had the flu. The doctors admitted me to the ICU because my blood pressure and heart rate weren't stabilizing. To make matters worse, I had already infected Matt with my flu and he was in no shape to come be with me. It was a pretty scary time, but the nurses all made me feel very comfortable and well taken care of. They immediately started me on Tamiflu and antibiotics. They took bloodwork every three hours due to a fear of sepsis, and loaded me up with 2 liters of fluid. The next day I was moved out of ICU into a regular

I write often about how much I love my job. Besides marriage and motherhood, it is the most rewarding part of my life. Last Saturday was the annual dinner dance and auction where the 8th graders put on a little show for their parents. This year, the moms in charge tailored the 8th graders activity portion to suit them. That means less dancing on their part and more heartfelt tributes. They did a great job... as I knew they would. They wrote a very sweet thank you note to everyone who helped them along the way. When it came to the part where they thanked me, the DJ started playing "Fight Song," and I was called up to the stage. I knew they had something planned, but I didn't expect anything more than some kind words. I certainly didn't expect to be called up to the stage. They proceeded to gift me with a few of my favorite things: Diet Pepsi, Peet's coffee, Sour Patch Kids, and pink roses. I was too shocked to listen to everything that was said, but it was evident

I think my cancer has made me more witty. I've been noticing over the past few months that my one liners are quicker, my ability to make puns has increased, and I am all around a more funny person than I was before. Although, "funny" is subjective, so not everyone may agree with this observation. Matt has always been the absolute most funny person I've ever known, so keeping up with him is difficult. If I can make him laugh, I know I've succeeded. I don't know what to attribute this change in my humor too...maybe it's simply that I just don't care anymore. I feel like having cancer gives me a pass in a lot of areas. I can get away with more.... So why not use it to my advantage. This past week both Matt and I have been able to use our wit with telemarketers. He told me his story yesterday by starting out with "You may or may not find this funny, but...." Umm, when you start out like that, I immediately become nervous. Then he tells me how a

Time is just flying by these days... I guess that's partly because I am feeling so much better now that the chemo haze is lifting. I just finished week 2 of my first month of iBrance. I am excited to report that there have been relatively no side effects. My energy is coming back, although I am still pretty beat by the end of the day at work. I am not sleeping all weekend, and have had a few really good, really busy weekends lately. I had my second round of Faslodex shots last Friday. It hurt a LOT more this past time. I think it's because the nurse pushed it faster than the first time. My poor sweet little ass is bruised and sore. The biggest side effect from the Faslodex is fatigue, which, compared to the chemo side effects, is totally livable. I CAN do this!!! We just have to hope this treatment works for a LONG time. In amazing news.... I was accepted to go to Lourdes in May with the Order of Malta. The Order of Malta and the Knights of Columbus take 50 people every yea

Looks like things are all starting to come together. I had my Zometa infusion along with my first two Faslodex shots on Friday. The shot is the biggest needle I have ever seen, except for the epidural needle. Interestingly enough though, it didn't hurt at all. It was just the tiniest little pinch in each butt cheek. Friday afternoon I got a call from the specialty prescription drug company. The iBrance has been approved and I will get my first shipment on Tuesday! The lady explained that every month I will get a phone call about 8-10 days before my drugs are shipped. They need to have a verbal confirmation from me that I am expecting the delivery. It's shipped via FedEx and I will have to be home to sign for it. It seems SO big time. Then, she says "After insurance the co pay is $2,000 a month," at which point my knees literally buckled and I had to catch myself from falling. She continued "so I already submitted you for financial aid from Pfizer and it has

Well, it's official. Chemo and I are on a break. I know the news is good and I should be excited, and I'm getting there...but this news is met with mixed emotions. What if the new meds don't work? What if the tumors grow? What if, what if, what if..... We met with Dr. Adler yesterday and he didn't have any new news regarding my scan. In fact, he said the decrease in the liver tumor was so slight that it pretty much "remained stable." I know that stable is good in my case, but I feel like he took what little hope I had away. That, and when I asked some questions about the iBrance he said "It may reduce the size of the tumors, it may keep them stable, or it may not work at all." I totally get that he has to say all of this, and it's his job, etc. but I am just feeling sorry for myself that he can't say I'm going to be okay. I know no one can ever say that to me now. And it sucks. The plan is to start the Faslodex shots this Friday. I

Apparently old rock music is my "thing" this week. As my favorite band from Sacramento, Tesla, sings, "Signs, signs, everywhere there's signs..." I am constantly looking for and asking for signs, and today I got a big one. The contrast dye from the scan on Monday gave me a terrible, horrible, no-good rash all over. I've been trying to not rip my eyeballs out for the past two days, and my skin looks like I spent a few hours in a fake tanning booth. I called Dr. Adler yesterday and he said to take Benadryl. It seemed to work for a little bit, but today around lunch time I blew up again. I called Dr. Adler's office again left  a message for my nurse, Suzanne, to call me back. I packed up and left work then. As I was driving past the church my phone rang, so I pulled into the rectory parking lot. Suzanne was telling me that she would call in a prescription for prednisone for my rash. At that point I casually mentioned that I really didn't want to wai

Tom Petty was so right, the waiting IS the hardest part. Today's scan was a much better experience than the last one was. We arrived at 8 and I had an hour to drink the disgusting gastrografin drink. It is seriously so vile, especially on an empty stomach. But if that were my biggest problem in life, I would take it... so I should just shut it and deal. I made sure I told every medical person I came in contact with that I have a power port, and funny enough, everyone said "I know, I read your file." I wonder if it says "Irritable when forced to wait three hours for no reason," in my file also. I had big plans to  go to breakfast with Matt and get some stuff done today, but none of that happened. By the time the scan was over I had a headache, my ribs hurt, and I just wanted to crawl back in bed. I'm sure it's a combo of the lingering chemo hangover, the gross drink, and the sheer stress of the scan. But regardless, I came home and slept for the rest of

Today is a big anniversary for me. 7 years ago today I had my DIEP flap surgery - double mastectomy where they used my abdomen fat to immediately re create my breasts. It was my long awaited boob job and tummy tuck; it just included cancer as well. 7 years ago my hell started. Every single decision Matt and I made about my illness was made together. We agreed on everything and kept saying that the more aggressive we were back then, the more chance we had of thwarting a recurrence. So I went big for everything. Mastectomy vs. lumpectomy, dose dense chemo, radiation, and then hormonal therapy to squash any estrogen left in my body. A year after my surgery, I took preventative measures and had my ovaries removed too. I did EVERYTHING I could. I was STILL taking hormone suppressants when this shit came back almost 7 years later. I've been fighting this fucking monster for 7 years today. I had moments of cockiness where, on this day, I'd even post a stupid fucking Facebook status

I had my appointment with the nutritionist at UCSF yesterday. The dismal rainy day should have been an indication of the imminent news I was to receive. Although, I can't lie... I can't say I was very shocked by what the health lady had to say. In a nutshell (get it... nuts are healthy?!), I was advised that ice cream for breakfast is frowned upon, and I need to trade in my Sour Patch Kids for pomegranate seeds. Actually, I'm fine with pomegranate seeds. They are absolutely delicious in my glasses of prosecco. But I'm not certain that's how she was inferring I should eat them. I didn't clarify this, so I can still play dumb maybe. Otherwise, I'm doing pretty well with my diet. She wants me to aim for 2,000 calories daily and 60-70 grams of protein. Honestly, these goals seem almost as unattainable as when I was trying to LOSE weight and I had to aim for ONLY 1,300 calories a day. Why is it that this food thing can't just be easy? I realize that eat

The past 6 months have caused Matt and I to have serious conversations. Conversations most people try to avoid because they are so morbid and REAL. When you are diagnosed with an illness where the median survival time is 2.5 years, you have to speed these conversations up. They HAVE to be had. Matt can't stand talking about this stuff half the time, but I think it's part of my processing the whole reality that makes me push forward and insist we discuss. There are a few things that I am having a particularly hard time dealing with. One of which is what to do with my body after I die. Normally there are two options. Burial or cremation. As I lay in bed last night and listened to the rain, my fear of burial rose to the top again. (no pun intended). I don't want to be in the cold, wet, wormy ground. Ugh. I can't stand being cold and wet. And the thought of bugs climbing on me just really creeps me out. The alternative is cremation. I equally cannot stand being hot. That

What an incredible few weeks we've had. The holidays were as fun and eventful as expected, and just as I thought, the January funk is starting to set in. Whenever I spend time with my brothers it takes a few days to come back to reality afterwards. I realize how much I miss them and I get all weepy and sappy after we part ways. Now that they both have kids that I adore, it makes it even tougher. Now that they have kids and I have cancer, it makes it ridiculously tough as I think that my nieces and nephews may not ever know me. Although I guess that's better than them knowing me and not liking me - but I can't imagine that would happen.... Anyway, the week before Christmas I was given a chemo reprieve due to lack of white blood cells. That meant that when I went in on the 29th I had had two full weeks off. I was feeling good. I was almost back to my old self energy-wise. I had been out walking a lot in Yosemite and all around Jamestown and Columbia... I had *almost* forgo