Living with Cancer

Cancer isn't always a fight. It's a quiet, sneaky ninja. It's a chase. It's a nagging feeling. It's a slow steady marathon.

For the past year and a half, I've felt OK. On good days I try to pack in as much as I can tolerate and on bad days I try to fit in what I can. Some days it's a few emails and just hanging out in the online support group. Other days its a challenge to get out of bed and the normal is overwhelming. Most days are good. Or at least that's how I choose to view it. There were some times in the past year that the icky days were starting to outweigh the good and we re-evaluated. Mostly I think it could be worse.

I am on a new chemo. Before, I took 3 different meds- all working in slightly different ways to keep the cancer from growing. The abraxane was tough- it's job is to stop cells that are replicating fast. Cancer cells replicate fast- but so do hair cells, and gastrointestinal cells, mouth cells. So the hair falls out, the stomach is upset, digestion just isn't the same and sometime you get sores that don't heal well. The other 2 were monoclonal antibodies- meds that specifically target a certain marker on cancer cells. These markers are on some other cells in the body too- but there is far less collateral damage than with conventional chemo. I think of it like a door that has a regular lock and a dead bolt. The Herceptin is the key to one lock, the Perjeta fits the dead bolt. The herceptin works by binding to the receptors- making sure other proteins can't bind to the cell and tell it to grow. It's basically piggybacking on the cancer cell - hopefully wearing it out until it dies. Therefore you don't have to worry about toxic effects like hair loss.

The new chemo is like a big fluffy rabbit foot keychain on the Herceptin lock- there is a chemo molecule attached to the herceptin- so instead of just interfering with the cell's signals- it is bringing some actual cancer cell killing action to the party. TDM-1. Touchdown Molecule 1 as Phil calls it. As we sat over a year ago discussing options- this was on the table. Phil wanted to go there- if this is the best- let's use it.  And that was how our oncologist eased us into the approach of buying time.  Because most meds only work for a certain amount of time, and you want to work your way up the ladder.

Well my friends- that is one of my beefs with cancer care right now. (pulling out soapbox)The standard of care for cancer is a great big bomb to the system. Sometimes that bomb is nuclear(radiation) but we mutants try to avoid that as much as possible. Radiation actually pisses our cells of and turns them into rogue little monsters. Ironically- stressors like toxins, radiation, viruses, injury are what cause damage to the body in the first place- when cells get hurt- we have various proteins that triage cells. If this one is too sick- it's digested and taken away- if this one is just messed up- it is given a rest and allowed to start replicating when it's all better. One of my mutant proteins- p53 doesn't respond to the damage like it should- it doesn't recognize rogue cells.  Many chemos operate off different principles of cell division- and since not all cells divide at the same time- the hope is to kill off more bad than good through chemotherapy cycles.

Standards of care are part of the medical world. It is how we ensure the majority of people will get the best or most successful treatment for any given condition(factor in cost- that's a whole 5 blog posts on it's own). Those of us with rare conditions usually learn that this one size fits all approach- although practical for the masses does not work for many. It is why it is important for things like radiation sensitivity to be known for those with Li-Fraumeni Syndrome- because with many cancers- radiation therapy is a front line defense. Unfortunately radiation works by inducing damage to the cell- essentially marking it for destruction. Some healthy cells get hit on the way- but with focused treatment there is less collateral damage than a systemic therapy- like chemotherapy that introduces chemicals to all cells. This type of radiation damage usually works by involving p53. Since my p53 is mutated- it doesn't always work.  Some chemos don't work well with mutants either. As research progresses- we find more treatments that work and eliminate those that don't. We are though- hundred of reasons why it is imperative to know as much as you can about your genetics and tumors- because why do a treatment if it won't work?

As treatments get more focused- like using monoclonal antibodies such as Herceptin- there is less damage to the overall being. That's a huge plus. But unfortunately Herceptin only works on Her2 positive cancers. As more tests become available and affordable- there will be more data and hopefully better access. The double edged sword is that the human body is amazingly adaptable and has fail safes. Some of it is sheer dumb luck. I am here today because my body spent 36 years with pretty functional p53. Now my body is struggling.  I am a reason why individualized medicine could not only make a difference in quality of life- it could make a difference in survival. I often use the analogy- gotta fight the shark closest to the boat. Living with LFS and metastatic cancer means the sharks are circling.  But there was a time not so long ago that the only sharks near the boat were breast cancer and sarcoma. I spent a lot of time researching and trying to figure out what the best option was for me- with not always the best database of information. Because despite p53 being one of the most studied proteins of all time- there is a difference between a tumor that has mutant p53 and a human that has mutant p53. And there are all of the other proteins and genes that work together and sometimes around these mutations- that make us into the one of a kind piece of art that each person is.  AND THEN we have our environment and all of the things we expose our bodies to, smoke, food, chemicals- and that is a whole other host of factors to consider. Sometimes the scientists start with cells and looking at them and how they react to chemicals and they realize a dish full of cancer cells just died and the normal cells lived- eureka. Yet as the research progresses- they find once they make this chemical into a pill- the body could break it down or change it and the chemical cannot get where it needs to be in high enough concentrations to do any good. Sometimes there are side effects that make it unbearable. And all of this research takes time and people and funding. The internet is closing the gap between people and the more people talk and share stories and compare notes- we will find what works and what doesn't. Of course science and research are businesses- but I see some exciting advances happening- collaborative efforts that mean a faster journey to important discovery.

So back to my sharks,  Kadcyla is throwing in some chemo with a specific target. I was lucky that I had a good response to Abraxane, Pejeta and Herceptin.  But over time- the cancer found a way around these drugs and we had to switch. This will be the chasing game from here on out. I will never be cured. There will always be sharks. This is metastatic disease. I will not have a few cycles of chemo and then be done. I will do as many cycles as my body can tolerate until I need a break or it stops working.  The first week after the last treatment I had stomach aches and head aches. Nothing entirely debilitating, but the what ifs were. The unknowns. Is it the side effect of the chemo or are tumors growing? Is this getting worse or normal my body saying WTF? There are women who are diagnosed at stage 4(aka metastatic or "advanced" cancer) There are women who never get 18 months of hoping the cancer doesn't metastasize before it does. Even though we all face the mortality of it when we are diagnosed with cancer, each stage has it's own layers of hope. There is a certain amount of luck to any of it. All it takes is time and one determined rogue cancer cell that can be the difference between a stage 1 and stage 4. No one woman is any less or more deserving of survival- or man- or child- in the eyes of cancer -we are just a host. We can be gracious hosts or bastards and like anything that is a personal choice. Just as that one cancer cell can survive despite the odds, so can anyone.

In the past year I have come to terms with the fact that I will never be cancer free. I have come to terms with I don't know how long I have here on earth.  I cannot spend every day "fighting". Nor can I spend every day "vacationing". SO I choose to spend my days living. In the often messy, chaotic and unglamorous way that I have become accustomed to.  And I will try to reach a compromise with the cancer in my body- because there will not come a time that I can evict it all. Some need to own cancer, some need to tie it up in bows, some need to fight. Those are their sharks, they have to deal with them as they see fit. We are who we are because of experiences. I lost my brother as a teen. He did not get to graduate. Fall in love. Have children. Be an uncle. So at times when I think of all the things I might not get to do, I think about the things I HAVE been able to do. And by choosing to live is to honor his memory.  He did not survive, but his memory does. When I laugh or smile through a tough situation, I honor my dad. He may not have lived, but our memories do. I try show my children that it is ok to have faults and it is ok to have grace.  Through some of the simplest moments around our dinner table are the magical moments that memories are made of and it is then I know- I am a survivor because they are me.

Immunity from Stupid

Vaxer's. Anti- Vaxer's. So much discussion lately about the merits of herd immunity- especially in light of the measles outbreak linked to Disneyland.

We were at Disney during the time frame in question. The news splashed across my mobile- and honestly I sighed and went back to trying to annihilate Phil's score in Toy Story Mania.

Common sense seems to be lost. I have quite a lot to say on vaccines. But it is just that- what I have to say. Each person really needs to find their own voice and what works for them.

Here's some background- after Lily finished treatment- I spent months researching family history, the history of cancer, p53, and Li-Fraumeni Syndrome. During the course of this research- I found myself on a tangential path into the world of vaccines. From Smallpox, to polio and the SV40 contamination link to cancer to Anthrax and Gulf war syndrome. It is fascinating to me how many scientific advances are driven by war and politics. Vaccines are no different.  Vaccines are intricately related to illness and viruses with an undercurrent of social policy. For years it was refuted that viruses could possibly be linked to cancer. Then gradually there is a shift, as data and needs collect- the view alters. One of my more recent research topics- the HPV vaccine- and the evidence of a shift in thinking as the HPV vaccine is to prevent viruses that cause cancer.

I believe in vaccines. I believe they work and I think they prevent a lot of devastation.  I believe they are safe and necessary for the average person. There have been missteps along the way. There were tainted vaccines. There were illnesses caused by vaccines. But there have also been many lives saved.  My kids are vaccinated. I am not a huge fan of the combo vaccines- I think much of our body's confusion(autoimmune/allergy/reactions) can be attributed to throwing too many things at it to build antibodies to at one time. I also believe heavily that the over processed foods we are eating- cause a lot of these problems as well so if you see an anti-vaxxer out there feeding their child a happy meal- please enlighten them there are more chemicals in that nugget than a vaccine. I'm not an immunologist- so my logic could be horrendously flawed- that is just how I feel. I think our bodies are much smarter than we are and we have to find the balance between thinking we know what's best through pharmaceuticals and giving it a defensive leg up.

I've always been on the fence about the flu vaccine. Every year that I've gotten it- I've gotten really sick. So I am of the opinion- I'll take my chances and hope for the best. Mind you- I am immunocompromised, I have 2 "immunosuppressed" kids. I do not weigh the decision to turn down vaccines lightly. Both Phillip and Lily get the flu vaccine every year. Pretty much their endocrinologist has the nurse come in and give it to them.  Generally Bella and Kiera do not.  SO we are half and half in this house. But in my mind- flu vaccines are not the same as other vaccines.

You have to find the balance between letting your body do it's job and the risk management of severe illness. Herd immunity keeps popping up in article after article- blogs-stories.. Social responsibility to get vaccinated to protect the weaker members of society. As much as I believe in this social construct- it is a flawed reasoning pattern to promote vaccination. Herd immunity is a good thing- but the problem is- it is being preached to a self centered audience. The same audience who feels everyone deserves a trophy-yet they can bend the rules to fit their individualized "needs"- that no child should be left out- that bullies should be publicly shunned. To promote vaccination as some philanthropic social responsibility to protect the weaker minority- yet neglect that much riskier every day behaviors put these immunocompromised populations at risk- is short sighted. And being preached on self centered ears.

There is an overwhelming lack of big picture. There is an absence of thoughtful consideration of the forest through the proverbial vaccine trees. Big picture- if an immunosuppressed individual goes to a place such as Disneyland- they are opening themselves to an international myriad of health issues- only a few of which are illnesses that can be vaccinated against. Do we screen international visitors and check shot records- No.  I believe everyone should live their fullest lives- and find joy and LIVE however they see fit. But where on earth did the over-riding belief that the general public is out there to protect you come from? When did we become immune to personal responsibility to protect ourselves or our children by doing what is best for them? And sometimes that means making unpopular decisions and facing the consequences of that.  As someone who has done Disney twice as an "immunosuppressed"(I use this lightly since my counts have been very steady ) and as a mom of a cancer patient on her Make A Wish trip- there are so many places where you are opening yourself up to problems. For one you eat out more- and although there are food safety standards- immunosuppression #1 sucky rule- no eating out. Why is that the case if there are food safety standards- because the standards are for the average masses who can fight off a bit of bacteria. And people are human. And sometimes not too bright and most definitely lacking common sense and hygiene. It is purely about risk reduction.

This absolute disdain and condemnation over the carelessness of antivaxers who exposed children too little to be vaccinated at an amusement park is ironic. At best.  I think if you have the means and desire to take a baby to Disney- Party on Wayne. Party on Garth.  Phillip was 9 months at his first Disney trip- a 50th birthday celebration with his grandma. Of course- phew- he was vaccinated at that time.  BUT you have to put it to the common sense test- it is a big place with lots of people and I don't care how many cast member trash ninjas they have popping up out of secret entrances- that leaves room for a lot of dirt and germs from so many locations. This past visit a kid coughed on my head. So other than taking airborne daily and hand washing like an OCD olympic event- I knew going in- getting sick was a distinct possibility. Heck Bella developed a cough on the plane there. Phillip's nose started running. Perhaps instead of earplugs and candy "I'm bringing my baby who is gonna cry" on an airplane gift bags- we should consider antibacterial, airborne and lysol . Because if you are taking a baby to such a place clinging to an expectation that humans there are all of a certain mindset or social aptitude for biological hygiene- you could be very disappointed. People get sick. The biggest threats are the people who do not know enough or care enough to be concerned outside of their infectious little bubble. How it it we expect a certain accountability of sacrifice from them yet are willing to not apply it to ourselves?

Life is about risk management. The government issues safety guidelines and vaccine requirements. Not everyone fits into the nice neat little box of standards. People who have gotten vaccines have gotten the diseases they were vaccinated against. It happens. Recently a mom blogged complete contempt for whomever exposed her newborn to measles in the doctor's waiting room. First of all- most good clinics try to deconflict well baby exams with sick kid appointments. Unfortunately there are a myriad of germs that can survive outside the petri dish of humanity for quite some time. EVERY time my kids go to their routine endocrinology appointment- they end up sick. We go every 3 months and I did a dance recently when Lily got bumped up to 6. We go into the waiting room- they sit with their homework in their lap, we sanitize as we go.  But I hate to be the bearer of bad news- the sick people are the ones who absolutely NEED to be there. AS much as I promote prevention and wellness exams- a doctor's office is where people who are sick wait. A woman was diagnosed with mumps as I sat getting chemo in the chemo bay one day. Mumps. She had been vaccinated. But her immune system took a hit from chemo. And she got mumps.  I didn't feel angry at her. I felt really bad for her- she looked miserable. Sure I worried I might get sick, but I'm pretty sure she didn't want to be sick either.

There is a lot of misinformation and stupidity everywhere. You cannot fix stupid.  If only there were a vaccine for stupid. You can hope to educate and raise awareness. I do this daily for LFS. DO I think everyone should avoid radiation,oh well that IS a can of worms...let me rephrase. Mutants are especially sensitive to radiation. Sometimes it is the best option- but for screening- it should be avoided if possible. Many mutants have a tough time getting the screening they need or getting it paid for by insurance because the standards of care for treatment do not include it. As a group- we have different needs. Do we think every single person should have to follow our rules since it would be more convenient for us( the world would be a better place- but I digress).  Societal norms are in place to help the majority. When you get diagnosed with a rare illness you immediately ask why? Why is there not a cure? Why is more not being done? Well because the shark closest to the boat gets the attention and for the public in general- communicable diseases are some of the biggest and nearest sharks. You are the captain of your boat. You can steer it into the sharks- away from the sharks or keep it on land if you are that afraid of sharks. You gotta do you. You gotta be you.  Just remember sometimes you don't see those sharks at all- doesn't mean they aren't there waiting. And feel free to yell at the sharks and berate them for their lack of vaccination- I'm pretty sure they will weigh that heavily in their decision to eat you.

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

Pulling for Supermom

So here's the plan. Yesterday I had a super duper High Definition MRI of my brain.

We were referred outside of Tripler for the scan- which in all honesty was fine with me. It's nice to see how the other half lives from time to time.

We walk in- Koa wood decor- friendly receptionist- chilled water available for consumption. The familiar hum and rattle of the MRI machines next door permeate the check in process. The seats have cushions. There are not 1 but 2 TV's so everyone waiting has a view.  I get called back to my secondary waiting room- which is slightly smaller than my living room and I get handed a remote control to watch TV.  The plants and surroundings are neither sterile nor terrifying. Before I can even find something to watch the technicians are ready for me and lead me to the machine with headphone so I can have music to listen to since they noticed I marked that I am claustrophobic. Isn't that my luck - little waiting in the room that I wouldn't mind waiting in.

Some of the problem is that I was to have a PET scan last week. Well due to scheduling gymnastics associated with having brain tumors- it was cancelled and not rescheduled and there was a mix up. As it turns out- I came down with a nasty cold that afternoon and it is just as well that I didn't have to chase down guesses or repeat scans to determine if spots were cold or cancer.  I've had colds for scans before and nothing quite adds to the claustrophobic effect like thick mucus dangling down your throat and an MRI tech yelling at you to hold still. Yet the these techs handed me a special cough drop from Chinatown and I'll be darned if that thing didn't work. An hour later I was done- neither suffocated or coughing.

As we left the MRI suite, we noshed on a rather delightful salad from the coffee shop in the foyer of the building.

The MRI is important because is it going to help the surgeon and the radiation oncologist pinpoint the exact coordinates of my misbehaving tumors.  MRI gives the best resolution of swelling vs tumor and all the various structures in the brain.

Jen's toomah

Tomorrow, I go for gamma knife. There are no actual knives involved- it is not surgery. It is pinpointed radiation.  Around noon- the neurosurgeon will screw(yes- screw- and it is as terrifying as it sounds) a frame to my head. As terrifying as that is- the reason is to help zero in on the tumors and to prevent movement.  Then I will have a CT scan. 

After the CT scan- I will get to wait with Phil and my new frakensteinian head piece- while the doctors plot and plan the coordinates for treatment. They look at the MRI and CT and tell the computer exactly where my tumors are.  From there it is pretty much a software driven deal. When they are ready for me- they put me in the colander (which I think they technically call Collimeter) but potato/potato- see the round thing with holes in the picture below? That thing. And this is where the anti anxiety meds are worth their weight in gold. 

I then get pushed into the massive radiation machine which shoots tons of radioactive beams that individually aren't too scary yet when they converge in the right spot- ZAP! Then we hope hope hope that :

this works.

there are few side effects. 

I don't freak out. 

Afterwards they put corks in the screw holes and I am bummed it's not october cuz I am the bride o Frankenstein.  Kidding. Apparently they put bandaids on the holes- which are just flesh wounds- but we all know how much the scalp likes to bleed. And we go home and hope for no complications. 

And hope the tumor dies. 

and hope my brain does not swell. 

and hope for minimal side effects. 

When I was 17 my dad had a brain tumor. 3 years before my brother did. Brain tumors- I am familiar with them and they scare the shit out of me. They can take away who you are, what you can do and your future. They are angry little bastards. Mine just happen to originate from my breast, we think- so here's to hoping they are boobs. The only way to know for sure would be to biopsy- and biopsying brains is pretty tricky and if you are going to biopsy you might as well do surgery. Gamma knife radiation is "less invasive". It is the best option for the situation. It would be the best option no matter the tumor type. 

I remember vividly sitting in a cold room, very much like the MRI waiting room at Tripler- listening to the humming and bustling of nuclear medicine- trying to read Anna Karenina for IB English and failing miserably.   To say that this process brings back a lot of hard memories is an understatement. 

Yet I remember how far we've come since then. How far I've come since then and I know- what will be, will be. I have more to do and am confident this is yet another step on the path I am supposed to be on. For years I had been terrified of chemo because it almost killed my brother. Yet it worked for me. For years I have hated radiation for making my dad's tumor angry. Yet here I am facing down yet another fear. 

It's tough because with exception of a nasty week of vertigo- I feel pretty OK. I keep being told this procedure is tolerated very well and I've read reports that it has been successful in LFS patients. Of course I tolerate a lot of things that I feel are bullshit- so this might be more of the same. Worst case scenario- it doesn't work, I have side effects, swelling and end up having to have surgery to control swelling. Best case scenario- the tumor dies and I can control things with my mind. 

Tolerates well= go home and have a headache and maybe some nausea. 

not too bad a deal if it works. I could have residual damage- hearing loss, vision loss, and others tumors could pop up. But we are going to hope for the best and pull for Supermom!

SO pull out your Team Mallory Shirts or your MUTANT tees if you got em- we need some extra good juju tomorrow.  Do something tomorrow you've been wanting to do for awhile but haven't or just do something fun- in your shirt and send me a pic! Many hugs from Paradise. 

What a Trip!

Its hard not to feel like every time we plan a trip, something goes drastically wrong. But then again, if I step back and look at it- things do happen for a reason. We had a wonderful week in California and by far the best part was all the love we received from family and friends who jumped on planes or in cars and made the trek to come spend just a bit of time with our chaos.

It did my soul so much good. Living on an island makes us pretty inaccessible at times- so our trip gave us the much needed reprieve from island fever and the whirlwind of scheduling that swirled around us. It gave us time to just be us and reminded me of how important people are in my life.

We took the kids to play in snow and build a snowman.

A very tiny snowman.

Despite a cold and the cold- Bella still had fun- even taking a nap on the side of the slope. 

The littles were content playing while the bigs enjoyed snowboarding at Mt Baldy. yep we chose the spot exclusively because of it's name. 

But most importantly we got to visit with our friends the McCormick's- the type of friends you can fall back into conversation with like no time has passed and thoroughly enjoy just hanging around with. 

The next day- our friends since high school Rob and Ang brought their 4 beautiful kids to hang with us in Newport Beach. I loved seeing our past and present connect and form these new relationships based on our friendships from long ago. 

We laughed and learned there are people who will refuse to take your picture for religious reasons but  that didn't stop us. Again my heart was happy.

We then headed to the happiest place- not because of a mouse- but because of family. We got to spend time with grandma and had the amazing bonus of some cousin time!!

There was ice skating at a rink in Downtown Disney- so they got to check off another winter event!

My mom got to see that I was in fact OK!

It IS a small world- Best group pic ever!

The minions. 

And finally, ended the trip with an amazing dinner with new friends. 

Back to Chemo!

Facing it Head on

A few months ago I took the girls to their open house at school. As we sat in Lily's class the room, everything started spinning. This had been a side effect of chemo- if I overdid it, sometimes I'd get dizzy.  But this was different. As we walked out the door I felt like I was falling over.  I grabbed onto Lily and she steered me to the car. I sat there getting my bearings and finally called my neighbor to come pick us up.

Last month I woke up and felt a similar dizziness. I threw in a load of laundry and within an hour the room was spinning. I laid on the couch- if I held really really still it was almost bearable but the nausea grew. Shortly I was vomiting. It became an ER trip and I felt too horrible to even panic when they refused to give me an MRI and did a CT instead. The CT didn't show a problem- so I was given fluids, dramamine and sent on my way. It took a week before I felt like the dizziness wasn't going to pop up. My mom suffers from vertigo, so I really just chalked it up to another win in the genetic lottery for Jen.

At my next chemo, we talked with my onc who said a brain MRI was probably a good idea. Then I ended up with the flu. Fever, chills, sniffles, overall misery. By the time I felt better it was time for chemo again.  I figured I was in trouble for not getting an MRI when the nurse took it upon herself to schedule it for me. The appt was 2 days later,  Christmas Eve.

Perhaps forces aligned to allow us a peaceful, happy Christmas. Phil and I are horrible with surprises and secrets. Both of us have been really feeling the weight of permanent chemo and it had been a rough couple of months, so we decided to plan a family trip and surprise the kids with it at Christmas.  Since I don't fly well- it had to be close and the closest stop is California. So California it was. I bought each kid a cold weather outfit and printed out a card that let them know we were going to Disneyland and to play in snow- I wrapped them up in boxes and put them under the tree. The excitement when they opened the presents was totally worth it.  But the next week was going to be one of the toughest.

On Friday I got a call from a radiation oncologist. Unfortunately I have 2 tumors on my cerebellum, the part of the brain that controls balance. So we now know the cause of the vertigo. My cancer is misbehaving.  We can't know for sure if it is breast cancer metastases unless we do surgery and that could have some pretty big repercussions- but the docs feel pretty sure it is breast cancer.  This week we met with different radiation oncologists, got to see the pictures. Never a good feeling to see a grape size spot in your nugget.  Neurosurgery was consulted and pretty much decided that surgery is too risky.  The recommendation is gamma knife radiation.  We got to see parts of Tripler we'd rather have not visited. We also got to see the Cancer Center of Hawaii- since they have the fancy gamma knife machine. I really like the rad onc we saw there, she even cited an article about gamma knife results in patients with LFS. As much as I dislike the idea of radiation and worry whether or not it will work in my already mutant cells- it seems to be the best option at the moment.  But no plan is set yet. Friends called in favors for me for second and third opinions. My brother in law graciously consulted his bosses at Mayo Clinic. I've read papers. I've lost sleep. Rehashed symptoms in my head- pun intended.

Today is the first day of a new year with a lot of new unknowns. I know this- I love my family and friends dearly.  We will need some support in the next few months, I just don't know what or how yet. We're not sure what's ahead but we will keep facing it one step at a time and living along the way. So today we leave to try and relax(ha!) and gear up for some pretty big hurdles. But I've heard some positive things from some respected docs and we will face it head on.

Sometimes.

Sometimes it's hard to be Positive.

I've tried to write dozens of times, but I like to keep it positive and I've been struggling.

Sometimes when you have chronic illness you teeter between wanting to be seen and how utterly invisible you become.

Sometimes when you are sick, everyone around you learns to function in the disappointment.

Sometimes when you don't feel well, you think of all the wonderful things you want to do when you feel even just a little better.

Sometimes you are crushed when that time doesn't come.

Sometimes I feel bad that my family is impacted by this crazy lack of energy.

Sometimes I feel bad that me friends are called in to help more than to play.

Sometimes Bella runs around chanting that she believes with a bell that does not ring. sometimes she hits the wall.

Sometimes Lily makes me books and tells me she hopes I feel better- every time she sees me. Her moods are like a yoyo.

Sometimes Kiera cleans the entire house. I hear from other parents that she is constantly helpful and offering to help back stage.  She understands. Or at least is acting like it. She washes her hands 50 times a day.

Sometimes Phillip will hug me and fills my water. He'll play piano for hours and switch gears every time I yell a new song at him. He hides.

Phil is my everything. He cooks, he shops, he cleans. He is exhausted yet he gets it done. He comes home with new rank sewn on his flight suit and a printout that says it's so.

I wanted to be there. I want to pin the silver leaf on his shoulder. But there was no ceremony. Such is our life these days.

Parties and pomp and circumstance swirl around us. And yet somehow the important bits get glossed over. It makes me sad because he works so hard. At work and at home. He notices. He would never say anything.

Sometimes my heart breaks most for those around me.

Sometimes I feel like it's my fault.

Sometimes I try to write and find the positive. But sometimes it's just too hard.

So sometimes I just stay quiet.

Mut-landia

We just wrapped up the girls' production of Little Mermaid Jr. It was fabulous- and since it is my favorite of all time- I could have watched it over and over and over- but all good things must come to an end.  Kiera played Carlotta, a jellyfish and a lilypad. Lily was Arista, a mersister and a lagoon creature and Bella was a sailor, an unfortunate soul, and a butterfly.

They all had an amazing time with this production and with the cast and crew. Other moms would come and tell me how sweet they were( I try to avoid back stage- it is far to chaotic for me- which says a lot since our day to day livelihood is anchored in chaos.) One mom said Bella would rally the other sailors for a group cheer before each performance.

So on the Sunday evening after the last performance, Bella curled up in my lap and sobbed and sobbed and sobbed. Now Bella is just discovering her dramatic side so part of me wondered if this was overacting or actual heartbreak. Either way- I was glad it had been such a good experience for her that she would miss it.  Yet the next day I woke up with a headache and her nose was stuffy. Bella gets weirdly emotional before she gets sick. The little petri dish had snot bombed all over me! And here I was with 3 days to get everything together for a mutant meeting in Portland.

I chugged OJ. I took extra vitamin c and zinc. I rested and drank stress tea.  And I knew Monday when my head throbbed and my throat tickled that the petri dish had done it again. On Tuesday, I got the kids off to school and climbed back into bed. Somewhere around noon, I felt a hand on my head.  Phil grabs the thermometer and I try to yell no, but that would require energy I just don't have. 102.3. GDMFCSSOB. Not only have I lost a day of prep for the mutant meeting, I now am getting carted into clinic for a fever work up.  The up- side is that Lily has her endo appointment at 2, so somehow Phil is getting a 2 for 1 Tripler deal.

As I am trying to pull clothes over my hot shaky mess of a body- I get a text from my mom. Her mom radar is spot on- again. I text back yet in the fever haze- never hit send.  By the time I get to the hospital I hear my phone pinging and buzzing- apparently she appealed to the mutants to see what was up and they are now rallying in force. The nurses draw blood from several locations and plop me in a wheelchair to send me down for a chest Xray. Phil and Lily finish up with her appointment and come find me shivering in the frosty annals of radiology. Finally they call me back and the tech apologizes for the wait- she's the only woman around and didn't want to subject me to the boys.  She helps me out of my shirt and points out that I am seriously feverish. Yep hot mess- that's me. We finish and head back to clinic. I just.want.to.sleep. My counts look good, my onc comes in to talk with me.

We agree that it's probably just a virus, we do a strep swab just to be sure. He wants to know about this trip- THE TRIP- Mutants take Portland- Mutant mixer- Hugging mutants-Mutlandia and I can tell he is not keen on me flying. I ask him what his worry is- he says well- it makes them look bad to put a sick cancer patient on a plane. I laugh- OH I though you were worried they would freak out and think I had Ebola or something. His eyes get wide- I didn't even THINK about THAT. Oh great. Not to give him another reason to keep me locked down. He does not think I should go.  One of the team comes in and helps problem solve. We all decide that the decision doesn't need to be made right now- I still had 24 hours to miraculously lose a fever and open some airways. Lily finally gets to check out the chemo bay- and is pretty impressed with the little tvs.  We finally get a few scripts and head home.

By Wednesday the fever is gone and the congestion is trying to break. I lay under my neighbor's steam machine slathered in vicks.  Mutants are checking in at regular intervals. I can breathe out of one nostril- that seems good enough to fly in my world. Phil keeps asking me what I think, I keep asking him what he thinks-I am getting concerned texts from family and mutants alike.  My neighbor pops in and out and it hasn't even occurred to her that I might stay-plus she knows me- you'll get more rest on a plane and in a hotel room than you will here with 4 kids she says. Especially with the storm coming.  And that's true- my husband in his constant efforts to make me comfortable had gotten us first class tickets. Wait, what? Storm? Yeah- there is a hurricane heading towards Hawaii.

These two days were supposed to be dedicated to final meeting prep- and as somehow seems to happen with LFS and life in general, those days were pulled out from under me. My heart hurts so severely at the thought of missing my friends, I can barely breathe- but that may just be a virus.  One of my very dear mutant friends will not be joining us at the meeting because shortly after she filed some of our incorporation paperwork she was schwacked with a cancer diagnosis. As she lays recovering from major surgery- she texts me comfort- when she is personally feeling the loss of not getting to hang out with all of us after being the driving force behind bringing us together.

My cousin - who has been an advisor, a friend and an inspiration during some of my roughest times- chimes in that there is no stress- I can cancel at the eleventh hour. But I don't want to cancel. I may not be much use for a couple of days- but I'm pretty sure Phil needs this as much as I do. SO I throw a few items in a bag taking more time to make sure all my medications are packed than toiletries. And we head for Portland. Because this is what it's like Living with cancer, Living with LFS and just LIVING. I could not do it without the support system I am lucky enough to have around me- and sometimes the best medicine is just Living.

Potty Humor

I'm not a thrill seeker. I never really have been. I love a laugh, but not much of a practical jokester. I can't stand surprises- perhaps because I've had my fair share. I'm a bit of a control freak.

Thursday was not an average day. It was day 4 after chemo. I was feeling shaky and over all blah. The constitution was questionable. My friend Wendy, who just lost her daughter to cancer 2 months ago was on her way over. She's been coming by once a week to cook for us. I am profoundly grateful for so many reasons although she continues to tell me it's good for her.  It gets her out of the house, we get a chance to talk and keeps me from cutting or burning anything. Which seems to be a real problem with me lately. Case and point....

The other night we were putting dinner together. Phil was leaning on the counter by the trash.  I was experiencing the post chemo, nothing tastes right phenomenon and was cutting up a piece of peach to put in my water because lemon or lime just sounded too acidic. Since you technically have to be careful with fresh fruits and veggies during chemo- I skinned the peach. I held the peach piece in one hand with the knife and skin in the other. Now I would also like to point out that skinning a peach when you have tingly shaky hands is probably not the best idea- but is challenging in and of itself as the little buggers are slippery. So I am concentrating on not letting go of the slippery little devil and go to throw the skin away- in essence jabbing my husband with the knife and dropping everything everywhere.

Phil yells ouch. One of the kids says "what the heck" and I experience that horrible sinking feeling you get when your body doesn't do something that you thought you told it to do. It flipping sucks. I stood there holding on to Phil sobbing(me sobbing- not him- he was fine and actually laughing- well despite a small mark on his finger- fine becomes a relative term the week after chemo)- because it's one thing when you burn the cabinets, or your finger or arm or cut yourself- it is entirely another thing when you stab your husband out of the blue. I've always been one to shoo the kids out of the kitchen when I'm cooking- there's less collateral damage that way- but especially now- if I am anywhere near the kitchen they make themselves scarce. It's self preservation really. Kiera wanders around doing Bon qui qui imitations whenever I go near the kitchen- I will cut you.

They quietly slide knives away from me. Or they jump out of the way when I open the knife drawer. It took a few days before I could laugh with them. But I'm back in the game now.  Perhaps it is because the shakies are starting to subside. Perhaps it is because sometimes all you can do is laugh and if you can't laugh at yourself- you shouldn't be laughing at anyone else. 

Recently the world mourned the loss of Robin Williams. It brought to light many issues about depression. Depression is a huge issue across the board. It's a huge issue with those facing cancer. It's a huge issue for those living with any debilitating disease. It's a huge issue for those who are depressed or love someone who is. I've struggled with it on and off my whole life and I know my parents have and I worry my kids will. Like any disease- it can be treated, it needs to be watched and sometimes laughter is the best medicine. But sometimes laughter is a bandaid on gaping wound. Unless you stitch up the underlying problem- it just won't cut it. No pun intended. 

Wendy's husband Pat started doing stand up comedy as a way to deal with their daughter Haley's illness. To me it makes perfect sense- but I am also someone who embraces finding the humor in less than funny situations.  To me, humor is the stitch that closes the gaping wound. In order to fix it- you have to uncover it, see it for what it is and attack it. The process can be painful- but at times laughing about the parts you cannot control is better than crying about it. 

I've never been to one of Pat's shows until the other night. We were just finishing up dinner- the whole family- in laws and cousins and the phone rings. It was Wendy. Bella was bopping around and tries to answer it- to no avail. She calls Wendy back, it goes to voicemail. I figure Wendy has had something pop up and needs to cancel our upcoming visit this week- so I was not prepared to hear her ask me if I want to come see her husband's routine- they are right down the road at the new lounge and they could use a few more audience members. Now. Or soon. But it's right down the road. 

Spontaneity has become a way of life. But Phil took one look at me and knew I was torn. Here we were finishing dinner with family, with my sister in law- who also is kind enough to cook for us weekly and then some and has been there to help with all kinds of less than desirable tasks. But also I know that there's probably a grand total of 2 people at the local lounge and I really would like to support my friend. Of course there is the dilemma of my constitution- but surely there is a restroom there. Phil has had an epically long week and decides what the heck- lets go- He finishes his last bites of dinner- delegates the after dinner chores and we go. 

Of course 5 minutes in- I know I need to use the restroom. Of course the restroom is right next to to the stage. And I realize why potty humor is so damn funny. Because it's a fact of life- everybody poops. Life is full of shit. Normal- runny- inappropriately raging at inopportune times. You can choose to pretend it's not there and go quietly about your business- yet at some point there will be no fighting it- you will have to walk to the bathroom in front of a room of people and hope that the laughter is perfectly timed.