Insufficient Breaks

Ah Life. The ups. The downs. The more downs.

Lily was looking for pictures the other day and stumbled across the blog. She read quite a few and we sat and talked. She had lots of questions, she didn't remember a lot. Part of the reason I started blogging was a journal-now reading back- I don't remember a lot and then the words crash around me. It's not easy. We've kinda dealt with a lot of shit. It's been tough to write lately- finding time, emotional energy and not be negative. Although as a good friend reminded me- you can feel the toughness and you don't have to be happy about it. Happy about it has been elusive.

Lily is doing the best of all of us right now. She and Kiera remind me a lot of me at those ages. Bella is truly a unique creature and dealing with being 11. Being 11 kinda sucks- in case you hadn't heard- she will tell you. The snark is strong with that one. Lily reads and reads and reads. real books. she prefers them to the kindle or electronic versions. I understand. She says she just likes the feel of the book and turning the page. We visit the library, a lot. She has friends at school and seems to be really happy.

Kiera is struggling with the challenges of the IB program as well as the time requirements for dance. It is so different than where we were with Phillip at this point. She is realistic and although she loves to dance- she does not think she wants to make a career of it. I just hope she will continue to dance, she would like to start a club at school. She is talking about withdrawing from classes after their Nutcracker performance. She really stepped up and became the little mommy for us last year, I really can't argue with her wanting just to have time to be a teen.

Bella is 11. not a little girl - not a woman- plain ol trying to figure things out. We just extricated Lily from this awkward place- or she grew out of it- so we apply miracle grow and hope for the best. Tomorrow is her arm MRI- finally-hoping to rule out some of the anxiety around that thing.

Dobby is like having a toddler. He eats things he shouldn't, poops where he shouldn't and needs lots of attention. Of course everyone gives him attention in their own way and that amounts to several hours of circus dog training for him each day. I walk him a bunch which is good for me physically and emotionally and he enjoys quiet naps in the sun while the kids are at school.

My sweet Phillip. He turned 18. And magically did not instantaneously gain the wisdom of life that adulthood promises. After being in a relationship for a year, young Romeo and Juliet were told they could no longer see each other. Although I don't agree with how many things have been handled, we absolutely respect her family's wishes. We lost part of Phillip last year, I thought it was me, I remember all too well being surrounded by sickness my senior year. I practically lived at Phil's house that year,  But it wasn't about me. Phillip was in love. All focus was lost, he started to lose himself in the relationship. His grades were the first indication, then he didn't apply to some colleges we had talked about, he stopped talking to us, he wasn't careful with his blood sugars- which made him angry, a lot.  He was going through a pretty normal thing with a bunch of not normal. We were trying to cope with a pretty normal thing with a bunch of not normal. Just when I'd see glimpses of him and think he was moving on, he'd slide back. My poor child - cursed with his father's loyalty and my passion for saving lost causes.  Oh to be able to share the insight on that and have him hear me.

Parenting is not for the weak. You lay the foundation and just pray it holds. I wish I could prevent him from heartache, but these are the experiences that break the heart wide open. With the right healing- the capacity for love will be even greater.

My adrenal glands just aren't recovering. I try to manage physical and emotional stress the best I can(I have a new dragon egg smelly thing- as the kids call it- a diffuser for relaxing oils)- we are the opposite of relaxing- even on our most laid back day. The night after my last chemo- I went into adrenal crisis.

I thought it was a headache. Which stresses me out- it could be the weather, it could be the stress- it could be more. So I retreated to my room with oils, tylenol, and ice pack then a heating pad. Within minutes the rest of the available Mallorys were sitting around, playing with Dobby, rubbing my feet. Everyone knew something was up. My stomach started hurting- again catch 22 stress- then the vomiting began. I tried zofran, I tried heavy steroids, everything came back up. I felt horrible. Phil decided I was not in fact contagious and needed the shot. He tried to take my puke bucket away. I cursed him- I think it would have made a great remake for the Exorcist. He finally gave me the shot, and we headed to the ER.

Of course the ER didn't know what to do with me, we enlightened them. It was slow going. The shot kicked in- iv zofran was lovely and fluids helped. I upped the steroids the next few days and then wean back to my regular dose. The dose changes are always tough emotionally. And life goes on and I make dinner because Phil has extra work to make up for the unintended day off. It's a reminder to take better care of myself for everyone's sake and well adrenal crisis really really fricking sucks.

My adrenals are quitting, my platelets aren't bouncing back- nothing transfusion worthy- just bloody noses and bruises. Like anything- I know so many who are far worse off- so I dare not complain. But my gut says we need to strengthen my body again. So after meeting with my oncologist and some thinking- we are holding chemo- the idea was until we do a PET scan. IF there is no progression, or evidence of active disease- we can evaluate and come up with a balance. But of course the PET is not available until the week after Thanksgiving- which would mean skipping 2 treatments. No one knows the right call. SO it's mine. Choose your own adventure cancer style.

SO I go with what I know versus what I wish. I know that I have aggressive cancer that keeps trying to find a way to thrive. I wish No evidence of disease meant I didn't have to worry- I will always have to worry- it's just at what level. I know it could be worse. I wish it was easier. I know I am tired. I wish I wasn't. I know that chemo is keeping the cancer at bay. I wish it didn't damage the other systems in the process. It's time to mitigate damage before it's too late, while not letting the cancer get ahead and this is what managed care is. It's not a cure. Other things go wrong, you have to roll with it and hope to keep ahead of all the bad things. And sometimes you just need a break.

So I will probably head to chemo next week and pound steroids like a world champion cyclist. Thankful for a little break, help the kids with the big ones, wait for the PET and hope for the best.

Day 1 of 21. Chemo Monday. A Day in the Life of Metastatic Breast Cancer.

My feed is already alive with Breast Cancer Awareness. We haven't even completed Childhood Cancer Awareness month yet and I am not the only one dreading Pinktober. The awareness of pink. Pink 5 hour energy, vitamins laced with carcinogens, donating about 5 cents per bottle to a breast cancer charity. We call that a self licking ice cream cone. Pink NFL, just ugh.

About 30% of breast cancers metastasize- spread to other parts of the body. There are certain places the obnoxious yet determined breast cancer cells like to get stuck- lungs, bones, liver, brain, but they can go ANYWHERE. Skin, yep. Bottom of a foot, sure why not? One of my kids explained to someone that I had lung cancer.  I have tumors in my lungs- but they are breast cancer tumors. I have brain tumors, but also breast cancer cells- well we think- we didn't actually biopsy them (THAT IS THE ONLY WAY TO KNOW FOR SURE) and well the whole brain surgery thing is pretty intense and knowing for sure didn't change this specific treatment(sometime it does) so we didn't do it.

Living Beyond Breast Cancer is a great org.  www.LBBC.org
Making changes for those living with mets. 

Like childhood cancer, very little funds go towards metastatic breast cancer. Most funds go toward pink campaigns and finding out how to treat these early stage cancers. Not nearly enough goes towards finding out why some metastasize and some don't. Almost all women with metastatic breast cancer DIE from breast cancer or treatment related effects. And it is usually in less than 5 years. I'm in a wonderful group on Facebook that has long term survivors in it and that is amazingly helpful. It is important to know it is possible and kinda how others managed to balance cancering and living.  This is important for how my day went.

So Every 21 days I have chemo. I live in 3 week cycles. I plan things around when I know I will feel ok and try to limit activities on chemo week. Generally I just try to make sure I keep the status quo rolling. Unfortunately I never know when I will feel bad- so sometimes I just have to roll with the punches or sit back and realize- I feel pretty good. I'm gonna try something new this cycle- time allowing. I'm gonna take you along on the 3 week journey. I'm gonna try to post daily about kinda what I feel like- some may be mundane(please, please lets hope for mundane- we LIKE mundane- not nearly enough of that- it's highly underrated. )

A week and a half ago, from Atlanta, the husband texts me- is Monday chemo? He had been gone for 3 weeks(the entire last cycle) home for a week then gone for a week. I wanted normal- and I appreciate Murphy taking the time to jam it down my throat. But for those quick ones counting along at home- that's 5 weeks. Which was kinda a relief because those chemo Mondays sneak up pretty quick. Like every 21 days. I had one more week before I was due back at the pink palace.

That week goes fast. Sunday nights before are a mix of dread and snap yourself out of it kid- enjoy what time you have. This past Sunday we took the boy child out to dinner for his birthday because well- weeknights are hectic. He actually invited 3 friends. To come out to dinner. With us. It also gave Phil and I a chance to visit with his brother and sister and law and their boys- it was a great big family dinner. It was the perfect distraction with my favorite people.

I have issues with insomnia. Whether it's anxiety or chemo or hormone changes or cancer, I don't know. I'm learning my way around it. It's the constant battle of- if I don't get sleep, I'm going to feel worse and then I stress and can't get to sleep because my brain is on, so I read or listen to music until my brain is tired enough to try sleeping again.  So some mornings are difficult. Which is weird because I have always been a morning person. This Monday, I rolled over and it was 6:37. Which is 7 minutes past when we are supposed to be on the road. We try to open up the clinic or else it becomes a day long affair and I have to call in favors to have the girls picked up from school.

I shower, grab a banana, a huge flask of water, and my Phil and we are out the door. Lily's teacher lives down the street and is kind enough to grab the littles on her way to school for me. Kiera helps wrangle the girls. Phillip does not speak unless spoken to in the morning. He inherited that from his dad. The bigs are then on their own for getting to school. We sit in traffic. For an hour. Sometimes more. Sometimes less. but not usually less. If we take the HOV lane- we exit this way to Tripler...

We usually valet, when we are this early though we don't need to. Sometimes we bring Phillip with us for his appointments- we did not have him this past Monday.

We walk inside, to the left and go to Medical Specialties Clinic. It is right next to OB GYN. Which is sometimes hard. But also a reminder of new life. The waiting room is shared with the GI clinic and Infectious Diseases. Whoever decided Hematology/Oncology should share anything with Infectious Disease is not my favorite person. I love the weird window mural. I have no idea what's on the other side, I'm pretty sure it's a wall.  We check in at the desk and wait for Brenda to call me for Vitals. Sometimes Brenda isn't there and Un Suk takes vitals. Brenda and I have a better rapport. I actually look forward to seeing her.

If we are early enough, after the dreaded weighing in and vitals, we mosey down the hall to the chemo bay. When we are lucky we get the corner chair. We are lucky a lot. Early bird gets the corner chair. The corner chair is red. The surrounding walls have handprints from all the chemosabes who have finished chemo. Many sign their names and write thank yous or inspiration. I'm not sure how they handle forever chemo patients like me. I've never asked. It seem unlucky and presumptuous to ask.

Nurse Jacqui or Nurse Cindy then come over and access my port. They are awesome. It rarely hurts anymore. They draw blood from my port and hook me up to a saline drip while we wait for the lab to run my blood. It takes forever.  I apparently have alien blood. One time they actually called and said it came back as non human. We had to draw again. I suddenly became human. I've tried problem solving this- going in early to get blood draws, going to a local lab. It never is more efficient. So we just go and wait. I take a book, we play scrabble, if the signal is ok, I play on the inter webs. Phil usually kisses me and goes to get us coffee, or tea, or whatever sounds good. Pumpkin spice sounded good this time. There was no pumpkin spice. That was sad. But I will live. 

While Phil is procuring coffee, my oncologist usually walks by and stops to chat. There is NO privacy in the Bay, none. Everyone knows everyone's business. Some people pretend to look away, turn up their tvs or sleep. It is what it is. I'm not overly social, but I get very distracted by all the comings and goings. My onc wants to know how I've been. I tell him I'm not sleeping well and it freaks me out and the anxiety is pretty bad. See October is kind of ground zero for these latest adventures. October is 2 years since I've been on chemo. 2 years is also about the average life expectancy of someone with mets. No stress trying to beat that number or anything. So I mention I'm taking more ativan than I like. Oh and I need a new Physical therapy referral- shit now I look totally ADD.  My onc is mellow- which I love.  He asks if I'm seeing anyone - mental health wise. I must look offended because he back pedals and says- I only say this because they might be able to prescribe something more appropriate than I could. It's what they do. He gets me. I don't like taking stuff and I sure as hell don't need to add any appointments to my life, but well I also kinda like sleep and sometimes a healthy means to an end is a good plan. We make a plan for a referral. 

Phil is back with coffee. He also scheduled October appointments. Nurse Cindy checks on me- I ask about a notice I got (EOB-Explanation of Benefits) about generic Kadcyla vs Brand- according to the $$ there is a huge difference and I want to know if she's seen that. She was pretty sure there is no generic Kadcyla but checks for me. She hangs a second bag of fluid while we wait. When I get dehydrated, I feel icky and the chemo dehydrates me.  The chemo I'm on is not cheap. About $9500 per dose. I am worth it. Not sure Tricare thinks so. But I am. We hang out and my onc brings in a new patient. She has the shell shocked look you tend to get when you are told you have cancer. One of the long timers- who is in purple checked matching button down and shorts hugs her on his way in. Nurse Jacqui sits with her- but chemo bay is buzzing- machines are going off- they are perpetually short staffed.  The new patient doesn't know where to look. I get up and go sit next to her. We talk.  She doesn't know if she should call her husband, she didn't expect this, she was just a little tired, but not this.  Call him. Just call him, you aren't alone and he needs to be given the opportunity to help. But the kids, how do I tell the kids and the family...they will worry. But they will also help I tell her and take my advice- accept the help even if you don't want to. We chat, onc comes back- I shimmy back to my seat and give her a modicum of non existent privacy. 

A young man finishes his last chemo. He started a few months ago. He hugs everyone and is out the door. I feel that twinge again. I won't have that moment. New lady waves as she leaves. I feel for her and the whirlwind her life is about to become. One of the old timers rolls in. He predates me by A LOT. He doesn't look well. Well no shit- everyone there is not well- but that's the thing about cancer- it's sneaky. His face is gaunt. He does not feel well. You can tell. And I think I am not there either. And it makes me sad for him and way more introspective than I like to get in the chemo bay so I am relieved when Cindy brings by my magic meds. I really want them to keep working- generic or not. 

My bloodwork is always fine. It's 11:20. We've been here for over 3 hours. That's part of the frustration. BUT it is important to monitor it and we are really lucky to be by Tripler. I don't have to fight over insurance, usually. I don't get bills, usually. And I get good care. There are not a lot of perks of fancy cancer centers, but I'm banking on the perks I so far have been given- good competent care. This bag takes only a half an hour to run. I get two shots after that- one to keep my bones from breaking down and a B12- because I like it.  We pack up and head to the car. 

We usually grab a salad, enjoy a "date lunch" at the kitchen table before Phil runs off to begin the after school drill. I usually nap. Hospitals wear me out. I throw together 20 breakfast burritos for the kids this week so I don't have to hear every morning- what's for breakfast. Or if I do- there is an answer. Phil calls- the girls have student council, we forgot, he's early. Dang. I lay down for just a minute.   I hear the kids tiptoeing around with their complete lack of ability to be quiet. Phil is making dinner.  I get lots of hugs from the kids. That part is great.  Kids kind of drift in and out for dinner. It works out- we get a little time with all of them.  Even though I feel kinda ick, these moments are some of my favorite. The are my no rainbow without the rain kind of moments. 

We watch football and new shows. I am so tired but I know the second I get into bed, the insomnia hits. At 10, we call it good and go to bed. At 10:30 I am back downstairs reading, as to not disturb Phil. He comes and checks on me. I never know when he's flying so I just got in the habit of trying not to disturb him. Plus I get a little achey. Finally I feel sleepy and give sleep another try. This time I sleep. 

Gamma Knife Experience

I figured I should probably talk about the experience before I forget- although really I could just blame it on my brain tumors or the fact that I just had radiation on my brain.

It really was completely and totally as advertised. I spent too much time looking at cancer forums and trying to reassure myself that it was going to be OK. But that is part of the process- that is why forums and support groups really do provide an invaluable service during these experiences. Sometimes you just have to hear from someone else that they survived. And sometimes the forums can be a scary place because it is a cross section of the optimists and the pessimists and the optimistically realistics.

I think any time you mess with the brain- things could happen. It is such an integral part of who we are. You wait and wonder- hoping that you are wondering for nothing. You wonder what you should be doing in the case that everything changes and you superstitiously try not to do anything in hopes that it won't.

I was pretty terrified. The jittery nervous making hugely inappropriate jokes kind of terrified. Better living through pharmaceuticals kind of terrified. Knot in stomach, jumpy.

Waiting with the Tools.

We travelled to town. The gamma knife facility is the only one on the island. We walk in and are introduced to my nurse for the day, Trisha - which I take as a good sign since one of my best mutant buddies is Trishia. I like Trisha a lot- especially after she gives me 5 mg of ativan- to take the edge off.  It helps the screws and head gear that are sitting around me feel less ominous. 

The Gamma Knife Head Frame

Screws and syringes of numbness.

We sit for a few minutes, letting the ativan work and the docs come in and say hello. They had already been reviewing my MRI and discussing the plan.  In the few weeks between MRIs, a new, 3rd tumor popped up. It is small, but in my frontal lobe. I can tell this development freaks Phil out. This is a fast moving ballgame we are in. It's hitting him. Wish I could share the ativan- he looks concerned, I just smile so he knows it's gonna be ok. Better it shows up now and we zap it. 

They explain the process to me again. Dr. I is very generous with the novocaine he injects into where the pins will hold the frame on. 2 on my forehead and 2 in the back of the head. I can hear the weird crunching as the needle punctures the tissue, a little stinging and then numbness.  He starts screwing the screws in and I feel the pressure of it- but no pain. They warned me about the pressure and assured me it would pass in a few minutes and it did. 

 They spent a few minutes making sure the placement is correct and aligned.  This is pretty important so that there is a point of reference externally and internally.

 Once I'm officially screwed in- we go down to CT.  They do a brief head CT which is then overlaid on the detailed MRI I had earlier in the week. This helps them visualize all of the structures, tumors and frame placement in order to program the specific coordinates into the gamma knife machine.

We were told the planning can sometimes take hours, but it really felt like mere minutes. It's one of those strange moments that you wonder which is worse- the waiting or the wondering if they should take a little bit more time to plan. They assured us they had done the majority of the planning before we got there- once they had the CT data- it was pretty easy.

We headed down to the basement- to a big open room with a skylight. It's amazing how such a thing like that eases your mind. Well that might have been the ativan.  I did really feel a bit like Dead Man Walking.  But I took lots of deep breaths as they fastened my frame to the machine and tried to get comfortable. I had to be there for 65 minutes.  

 Through this door is where the magic happens.

 I was really glad that the back screws were numbed up good for this part- since my head is resting on  them. I felt a little pressure but the table tilted a bit to support my back, so it wasn't uncomfortable.

 I hoped that I would sleep. But I was awake the whole time. It was noiseless except when the machine changed coordinates. I got to listen to music- I just asked for something relaxing- the last thing I wanted was easy listening and to hear a song that would turn me into an emotional wreck. They chose classical. I probably would go more new age/spa in the future- classical scores tend to blend together and I couldn't gauge how long I'd been in there. Every now and again my back would try to spasm and I'd just breathe through it trying to be super still as I visualized the tumors going up in poofs and the healthy brain being protected.

My friend Cheryl said I needed to make sure I brought my spider along with me. Another friend said he envisioned it like Cerebra from X-men- actually pretty close. Phil said he preferred to think of it like laser cats- shooting the tumors.  I didn't feel anything but numb, yet I know that like a sunburn- radiation effects can take some time to brew. The idea is that with how specific the gamma knife is- the tumor would mostly feel the effects- not the healthy tissue.

When I was done, they unscrewed the frame. That was a surreal feeling.  One of the radiation oncologists gave me a written prescription for steroids. Sometimes the brain swells in response to the tumor dying. Phil looked at the piece of paper and looked at me- what do I do with this? I laughed. You take it to the pharmacy and they give you meds buddy- if you want to have the full experience we can take it to walgreens on the way home.  I still have some "in case" steroids- so we can wait til our next trip to the hospital to fill the prescription.

The holes healed really nicely. I had to keep the bandages on for the night, but I was surprised at how small they were. Bella and Lily were both nice enough to point out that I had zits that were much bigger than the holes. Thanks girls. I felt ok after. The screw hole areas were a little swollen and uncomfortable for a couple days, but nothing major. I had a few minor passing headaches and I notice if I get tired or stressed things feel worse- so I try to avoid that. 

The spots on the back of my head are still sensitive.  I don't lay on them because it feels kind of like a sunburn. But all in all I feel Ok.  I started the Arimidex last week and so far haven't really had too many side effects. Some joint stiffness and GI stuff. I had my new chemo, Kadcyla yesterday and it was entirely uneventful- which we like. It was an hour and a half infusion, but in the future it should only be about 30 minutes plus however long it takes the lab to come back with bloodwork.  I will have to watch my blood counts and for bruising. The nurses say they see low platelets a lot with this chemo. But they also said they have quite a few ladies who have been on Kadcyla for years and doing well. I would very much like to be one of those ladies. 

PET Scan Results- the Adventure continues!

I got THE call.  The call you don't want after your PET scan. No news is good news. There is news.

The first thought.

DAMN. 

Second thought. 

GDMFCSSOB.

I cut to the chase- How bad is it?  

It's not horrible but we have progression and we need to discuss options. I can tell you right now what I'll recommend. 

Yes Please. 

So what we know... the short story is I have some new growth and we have to switch up our chemo to get the cancer to knock off it's nonsense. Metastatic Breast Cancer is a chasing game. We treat, we hope it works, we rescan and hope it's still working. Most chemos for mets last for a short time before the crazy cancer misbehaves and works it's way out of time-out. Our job is to be attentive and keep it in time out for as long as possible. My cancer needs to be put back in time out. 

15 months ago I had lots of round spots in my lungs, bones(femur, iliac, spine, arm). In March- most of those spots had disappeared(major yay!)- except for a shadow on my femur. That is called complete response- all those misbehaving cancer patches- had the chemo and went into time out. So we continued because it worked. 

My cough is back, which is a daily reminder that I am not as healthy as I pretend to be. I do feel pretty ok. Which I am really grateful for. Although there is still activity in my lungs of cancer cells- the old spots are pretty stable. That is good news. Unfortunately there is a new spot in my hilum(middle of the chest- part of the lungs) that's bigger than I'd like, a bunch of new bone spots-in new locations- and the right femur spot of old is pretty angry. On top of that there is a little adrenal spot- which adds yet another organ affected- not good- but also reminds me of Lily kayda's adrenocortical carcinoma and freaks me out. Breast cancer can metastasize to the adrenals- but it could also be new tumor. So that is something we will have to watch carefully and evaluate. For now we treat it like a met- because it is small. 

When new spots grow- there has to be a change in plan. If what you are on is working- there should be no new spots. Mind you the stress of the past month's brain mets- physically and emotionally- probably are weighing heavily on my body. But we have options. We hoped for stable- but we deal with what we have. 

We need to throw some more at the hormoniness of these tumors- they are hormone positive meaning they love estrogen and progesterone -which women's bodies make. I got rid of the organs this summer- but the amazing body has many ways to do things- like creating estrogen from other molecules. There are pills that I can take daily that will stop this conversion- to make sure we have less estrogen feeding the cancer cells. Of course the down side to this is some crummy side effects and bone weakness- which is already a problem due to the mets. But looking at alternatives- you have to get rid of the biggest threats. So I will be starting an Aromatase Inhibitor(AI) called Arimidex.  It's a pretty standard hormonal treatment for breast cancer after the ovaries are shut off(post menopausal).  SO plus side- no extra trips for infusions with this med. 

Since I have new bone issues and will be adding the AI- I keep taking the Xgeva- which helps my bones hold on to calcium and prevent breaks from the weak spots. That is a shot and will still be every 3 weeks. 

Then we have to address the new growths. We will be trying a chemo called Kadcyla(TDM-1- which Phil has taken to calling Touchdown Molecule 1). It is a drug we seriously considered doing first- but  recommended that we keep it in our back pocket and give the other chemo a chance. It's a buying time proposition and we try and eek out each step. We got 15 months out of my cocktail- I would have liked a bit more but am so grateful for this past year- ups and downs and seeing new milestones for my kids and the together time and reconnecting with family and friends. There was a time years ago where there were not these options. I hope for my children's sake and all other fighters out there- there will be even more down the road. 

Kadcyla is essentially Herceptin- with the chemo attached to it that finds the Her2 receptors and latches on to the cancer cells. It is very directed chemo and they have seen good results. It will probably have a similar side effect profile to what I was on before- but we will see.  My doc called it the iPhone 7 of herceptin- kinda wished he had shot for iPhone 8- the 6 was released much too soon. But it will be an infusion every 3 weeks- very similar to what we have been doing. The nurse ordered it today- so we will wait to see if it comes in on time for me to keep on my Monday schedule. 

So the take away is that we have continued hurdles- but I remember how bad it felt to see all those tumors light up over a year ago and here we are today.  We take it a day at a time and live our best life and try to find as much love, comfort and fun along the way. I am very thankful for all the positive energy, love, words, juju, prayers and offers.  It truly makes a difference, for all of us here. I also want to say- if you feel like calling -call- or text or drop a message or a card.  Please don't be afraid to  reach out. I know it's hard to know the right thing to say- because sometimes there isn't anything that can help- but I can tell you how much it means to just even hear I'm thinking about you- and it gives me a chance to respond and let you know that I'm thinking about you too. 

And a HUGE HUGE Thank you for the Team Mallory Support- my friend Gina was kind enough to start the fund up again for a 3rd SALE!  If you are interested in grabbing this fantastically designed Tee by Hope Friedman - it will be up until February 8. There's a new ladies fit too! We've been using the proceeds to have the housecleaned every 2 weeks and tip the Valet guys at Tripler generously. Oh the difference it makes!! I still am completely in awe that we have a t-shirt- but adore seeing pictures of all of our friends sporting Team Mallory. I'm hoping to get to tell you about the gamma knife experience soon- I'm still waiting on my superpower to show up...as my good friend Trish says- I wish my super power wasn't sprouting tumors! 

TEAM Mallory Until FEB. 8

Home Field Advantage in the Awareness Game

We just returned home after a week on the mainland. There was little time to stop and breathe and it was not because of glitter or the tumors growing in my lungs. Months ago, I made a tentative plan to see some very special ladies I met in an online support Group for Li Fraumeni Syndrome. The meeting place was to be Boston, tagged on to a conference for LFS. Then I found out my mom was moving from Colorado to Ohio. I thought it would be a good opportunity to stop and see her on the way east. Then I found out my cancer was back and angrily invading other organs. Everything became difficult to plan.  Then I found out my aunt was diagnosed with pancreatic cancer. In my mind this was so much more serious than what I was facing- it was a gut check.  Then 2 of my cousins started investigating symptoms of possible oncological significance. So at a time I should have been researching and making plans for my own treatment, I was helping one into the trenches and another out.  I often like to handle things myself because I appreciate that other people are busy. I'm not talking about your run of the mill work and play balance- I am talking about the fighting the cancer beast busy. I am not the type of person to wave my cancer flag to garner attention or sympathy- when you see me carrying that flag it is because I have to.

Colorado is home. It has been home since I was 11.  I met Phil there, went to school there, watched Bob and Dad die there, got married there, had Bella there and this trip meant saying goodbye to that. Feeling the enormity of the emotional waves was not an option- it would have crushed me. Going into it knowing I have metastatic breast cancer also changed my approach. My mom has an acquired brain injury as well as several other health conditions that have medically made it impossible for her to work. It is hard being across an ocean when you have a loved one who needs help- it is also hard knowing you are in no good place right now to be able to help anyone. I think we both feel that way and it's crushing. But fortunately, in the way of our world,  time is a luxury we are not afforded to float along the emotional waves of major life change.

After a month of tests and biopsies and appointments- I knew I needed to go home. I could not do it alone so Phil, knew he became a part of this whirlwind package.  We spent far less time than any parent with 4 kids, 2 with medical considerations should arranging their care for a week. I don't even have time to think about the favors I owe my neighbors and in laws. All I know is that I trust them and am eternally grateful to be able to rely on them. My gratitude turns to dismay as we enter the airport and find that there are pink ribbons and pink EVERYWHERE. The counter is slathered in ribbons- there are pink flowers in vases, the flight attendants are wearing some various splash or bucket of pink.  I opt for tea instead of the pink lemonade on the flight which is just high fructose corn syrup and red dye. I wonder how much was spent on this awareness campaign. I wonder if those funds could have been better spent. Hell, give away a few flights to women with breast cancer- better yet- fly out a family member or friend to help them through treatment. I have lots of useful things people could do instead of just being aware.

 As Phil and I landed in Colorado, we were surrounded by fall.  This is the time of year we fell in love. This is the time of year both Bob and dad's tumors were diagnosed. The falling leaves and the chill settle into my heart. Probably better than my lungs- those seem to be full at the moment.  As a mom, I know that my mom has been getting no rest- worrying about the unknowns. Worrying about what I am not telling her. The only way I can ease that a bit is by showing her I am Ok. We spend hours looking through photo albums and gently putting them in boxes. The symbolism and meaning are heavy. I know the emotions she is feeling. Colorado is home. And that is why home becomes where the heart is, you pack up the memories and carry them with you.  And sometimes those memories make your heart so full it breaks a little- but time heals those breaks- and that's how we become stronger.

We spend the next day helping move heavy furniture to the garage to either sell or give away. And by we I mean Phil and 2 of my dear girlfriends who merely stopped in for hugs and didn't realize hugs would be given while moving 200 pound bookcases down 2 flights of stairs. Friends who were are part of very different times in my life and yet it is so poetic for them to be there at this time. There were plenty of laughs as I went through boxes of old belongings. Memories filtering through the open garage with the sunlight.

As we do when the emotions become too hard to bear- we start to make inappropriate jokes and laugh our way through. Like when one finds what apprears to be a framed MRI from the early 90's. Most kids when forced to clean out their boxes of stuff- find locks of hair, teddy bears, maybe a letter jacket. Not in a mutant family- we find things like first brain MRIS and your mom says- Oh there they are- I wanted to send you those so Your doctors would have a baseline.  And that is just one little sparkly piece of awesome LFS memory lane.

We round out the work with other trips down different memory lanes- CU Boulder. I forget that Phil hasn't been here in years. Mom says it's been awhile for her too. The goal was to stop in and get a couple t shirts, but the second we parked- Phil started- oh I can see the stadium.  Look over through there you can see the stadium lights. I say nothing until he gives up the passive mentions and starts worrying that I am not hearing him. I'd really like to go see the stadium. I giggle and give him a squeeze- of course I will take you to the stadium- it's on the way back.  We find our shirts and continue on. CU was a safe place for Phil during his years at the academy- I would drive down and get him and find tickets for him to join us at the games.  One year a group of us saw an open gate and went and played on the field- running plays, building pyramids- it was what college memories are made of. I even arranged for his parachute team to jump into the stadium one year. The year Bella was born- a gate was again open and we snuck in for pictures.

As we get closer to the stadium, Phil is practically running. He starts at the first gate- clutching the bars, trying to get a peek. We have to pry him away to get pictures.



 
I turn around and he's off, checking each gate- he works his way around the building. I am standing there with mom- watching him try to squeeze his nugget through the bars to get just a little better view.  He smiles and looks over his shoulder- You are NOT going to believe this- Ralphies pink!  Oh god- even poor Ralphie at midfield is forced to don the color of breast cancer awareness. Mom gets a thoughtful smile- I'll be right back. She marches into one of the offices inside the stadium. Phil wants to know what she is doing. Who knows? Dad used to do this all the time and usually when he did- a magical story was being written.

A minute later mom reappears with a lady named Ann. Ann is my middle name, named in honor of my dad's oldest sister. She has always watched over us. She was the first sibling to die of cancer in my dad's family. In Ann's hand is a ring of keys. She walks us over to the big iron gate, unlocks it and lets us in. Phil is running down the stairs before mom and I even are through. This is happiness. Seeing the ones you love happy. I am in awe of my mom's magic. I can feel the angels wrapping their wings around us. We pose for pictures and thank Ann profusely. Turns out she is the women's golf coach. She hands us each a CU hat- which floors me- not only did she take her time to let us take pictures- she is leaving us with parting gifts. My faith in humanity is again restored.

As we walk back to the car, Phil is bouncing with happiness. I ask mom how she did it. Oh it was easy- I just told her that you went here years ago and you were just in town visiting before you started chemo on Monday for metastatic breast cancer and we just could not believe that Ralphie was pink and was there any way we could get a picture. 

I laughed and made a comment about being careful about burning our cancer card too soon. Phil turned to me and his grin was priceless- I'm pretty sure if that burned the cancer card- it was totally worth it!