Goals

My agenda today had 4 things on it – I only took care of 2.  One was with the Baltimore VA HUD/VASH caseworker (suitable/sustainable housing), and the other was my Business Employment Specialist, for placement in City, State, Federal, Government positions (sustainable/feasible).   When I got here, I was only supposed to worry about getting a good treatment team and taking care of myself, so I could be around longer (haha).   I missed my appointment with Dr. B at Johns Hopkins (poor-time management).  I have over 13,000 miles on my 2016 Nissan now…  I told G today, I do not want to think about cancer, I do not want to hear any more news one way or another.  I feel good, so I am going with THAT.  (she did not like my attitude at all, and said ‘pick up the phone and reschedule your appointment’) –  I did, but I felt pretty hard-core for running my mouth like I didn’t care).

What kind of job do I even want to be doing?  Can I commit to something without guarantee of an interruption due to health or personal complications?  Should I just get the best job I can, and work my butt off for several years, sock away cash, and attempt to sustain that way?  (missing out on life with the girls per usual when I work full-time) Do I trust Social Security to even be around for us if I pass away in the next 5-10 years or less?  Will the legal system catch up to what happened with my family in time?  Will Maryland put protections in place for the girls, if I am not here?  These are legitimate fears, that supersede all others on some days.  I would like to meet real life cancer survivors with these kind of thoughts… I made friends in the online MM Support groups, but I try not to go there often for anything other than treatment tips.  Losing friends you never met in person can depress the most optimistic cancer survivors.

My education background is Fine Arts, Human Services & Graphic Design – all over the place…  Taking stock of the records left behind from the last several decades…  I was not-blissfully-unaware of myself.  I can only say:  I think I know where my strengths and weaknesses lie (if that helps).  If you ask me what my dream has always been, or what my hope for the future is… it is easier to answer, but not related to ‘present day’ realities of life.  Metaphorically, I was caught in a hurricane for 14 years, then a tornado took the last 4, and we were left standing in a wasteland.  So I have been picking through the debris to see what is still usable, and what can be tossed, and what stuff is actually left over from a neighbors lawn that blew into my yard and I mistook it for my own… (make sense to anyone?).

A lifetime of not knowing my self, and little true idea, until this year.  Doing hard work on reducing negative self-thought patterns, behavior defaults, and even my speech…  This is difficult to quantify in words (although I attempt).

On one hand, I have this terminal cancer.  Realization alone…  from the day the doctor said “big C” , to seeing the X-Ray of the tumor…   Now 4 years into this…  I feel better than I have in almost 20 years (physically), and even mentally (in important ways).  However, as mentioned before, there is something that keeps disrupting our peace and our ability to feel free.

The animals seem to flock around me.  Last time I was really sick it was like this… so I often wonder… hmmm they know something?   I am suspect when l feel OK, as if I have no right to be pain free or healthy.  The 40 lbs+ weight loss since October, and still dropping… Sitting still is hard for me… and I work out.  I struggled with weight and stressors for the last decade.  Now the nagging feeling… (MM monkey) …difficult thoughts to turn off.  Missing todays appointment… subconscious maybe?  I do not want acknowledging the MM now, or the other main life stressor.  My brain cannot support another issue to ruminate on.  I no longer want to see lab work results alerting me to something.  Maybe it;s paranoia that the MM will pounce – as soon as something good happens for us.

I want to enjoy each day, I want to enjoy the girls, and the rest of life.  I wonder what it would be like decide on a career path, or school program, and not wonder if the time and effort spent on achieving a goal- will not be wasted because I may crash and burn, right at the finish line.  I so badly want to live and pretend the cancer is not a factor… I was a girl that wanted a life where she could help people for a living and just be happy with where that may have taken her.  So much time is lost due to how much scrapping and surviving can never be returned.  The more I try to ignore or process the source of the pain, to just live, the more obstacles present themselves connected to it.  I am trying to cauterize the wounds, but it is not just mine that I have to worry about.

Completing my Social Work program will put me in a better position to help others & still financially support my family.  However, if I spend the next couple of years studying, what happens if I get sick again?  Volunteering (ideally if I did not have kids to support), this would be ok.  What I do know is: being a Jack of All-Trades, and Master of None is not what I want to be anymore.  I want to be mindful of this before I make any decision.

I survived, so now what? Survivors guilt?  A chance to live semi-stress-free for a little while… not too much to ask.   Do survivors struggle with the sense of loss or twilight-zone in-limbo feeling when dreaming of a better future?  A modest self-sustaining life, a house, with a yard, and maybe my own workshop to create something… something to leave to my daughters.  My desire is to leave a legacy they can be proud of… I hope God hears my prayers/thoughts.

heroes

he·ro
a noun
1.
a person who is admired or idealized for courage, outstanding achievements, or noble qualities.  Synonyms: brave person, brave man/woman, man/woman of courage…
2.
another term for “submarine sandwich” @dictionary.com

I know enough of them to call myself #blessed. I have a friend who does not see herself the way my family sees her. I think we both know we are cool moms (I am nerdier, but still). We are similar in our self-deprecating ways, and we know if our kids needed anything, we could count on the other to show up and help out. Also, if we need to make an emergency Jimmy Johns trip… (maybe my American explanation to call the hero a sub sandwich?)…I will think on that later…

This friend knows if something is wrong – even if I am quiet, she normally has to fight to get a word in *if we are honest… However, I give her mad props for deciphering my brand of communication style. I refer to the unpredictable nature of my personality from week to week (depending on a success or failure of a current effort) in #adulting. Or if I am losing my faith in humanity, or under a stress or pain that is blinding me, feeling it will not end. She may say… Breathe,,, where are you standing? This is the way you were going, right? Where is your notebook/calendar? Ok, get back up and start walking …then falls in step next to me until my brain gets back on track. In PTSD therapy, it is a form of ‘grounding’ an exercise of a million possible ones you can use.  I get going like she pulled a zip-string, and I run so far ahead that I forget where I started. I may not get a ton of distance in one stop and start… but I’ll be damned if I didn’t just make it a few steps forward because I did not stand still. I am grateful for people like this.

We are low on funds, so we take scenic drives through Maryland. It’s “friendly mobile therapy” because I need to ‘verbalize-to-problem-solve’, and she needs to drive-think-problem-solve (she gets to talk too)… No particular destination… just to stop to take photos of a sunset, flowers, houses on landscapes, pretty animals, interesting or funny stuff… Sometimes, the ability to stop and appreciate beauty with others makes it cooler. I did this with Air Force buddies back in the 90s (in my 20’s), while stationed at Dover AFB in Delaware. Back then we had our mountain bikes on our car/truck racks, packed lunches, hiked or camped out.

Something spiritual happens when outdoors, stopping at a river bank, walking trails, skipping rocks. Sitting still listening to what surrounds us… The action of “Just Being”.  It reminds me how important the moment (NOW) is.  It helps me understand what I work so hard for…    More of this.. My soul settles a little more each day… Later that day I may thread more words through the tangled web that is my ‘story’. (she called my life a big ball of threads once, We are going to untangle this shit – one thread at a time, I promise it is will keep getting better, I just KNOW it). I probably made some snarky ‘whatevs’ comment, but I believe her. This friend is a hero because the threads she helps me untangle are made of these materials: hyper-anxiety-emotion-riddled-frazzled-but-strangely-focused-intense-but-funny-haha-mostly-but-adventurous-fun-but-tragic-garbage, and a lot of it can be tossed out. That is the part that seems the hardest for me, time spent taking out the trash. Making room for the good that will come our way when the trash is out.

Everyday I come across heroes at the Baltimore Veterans Administration, and they work in various capacities. I have rock-star-hero social workers on my team, and the words I have been trying to communicate and ‘be understood’ are landing on ears that hear, with tools to help me. To help me see a way to a place where I am able to do the important things for my family. I just need the possible and sustainable in this life. I must not lose hope or faith in my abilities to accomplish the goals set (its knowing what goals to set first).

I have been inspired by one of my new VA buddies. My case landed on his desk by a stroke of luck. Not sure if HE feels lucky, but I feel #blessed – he also seemed to comprehend my special brand of communication style. Somehow, in the tangled state of me, I had things his team could work with. This rockstar keeps handing me tangible information I can use (not just a brochure). It is a painstakingly-slow-slow-slow process when dealing with the mountains of paperwork required to do anything in the field of human services or government agencies in general.

Veterans are fully capable of being hard on themselves over their stuff #adulting. In fact, for me, it is a very humbling, and pride-sucking process when you have to go and ask other veterans to help you when you have reached the end of your rope and are hanging on by the knot you tied poorly, although still works… (Navy vet shows the Air Force vet a proper knot configuration). Most veterans I meet are surviving, hard-working, self-motivated people that want a way to live and enjoy a little slice of the American Pie they fought for. Preferably before they die.

I call human services workers heroes when they do their sometimes thankless jobs with enthusiasm, personality, and a great sense of humor. 9 times out of 10, a veteran does not want a hand-out, but a hand-up, and reminded they are not alone. Give them a compass, point them in the right direction because they fell off the marked trail again. (oh, and some food, and financial help during emergencies). Anyway, I have met some AMAZING people in Maryland so far, and I hope get more opportunities to pay the human kindness forward.

keep going

There are many valid excuses to pack up, shut my mouth or walk away from a fight or two right now.  With the cancer, unfortunately, not much can be done besides more self-care.  Must stay alive and don’t forget… stay toxic-environment + stress-free so survival lasts a little longer.

I’ve grown much, yet this one thread of darkness keeps pulling at us.   I heard My personality presents with strength and survivor skills.   But who would choose to spend life scrapping and surviving – with knowledge of some thing/one with ill-intent looking to make it difficult?   I often ask the universe how long we will experience this storm?

This cancer is (from my perspective)…  brought on by intense life stressors and toxic relationships over time.  I do make every effort to improve, and I can see progress.  Some issues are just an invisible REALITY for 19 years.

Thinking about the last half of my surviving life…

Anyway.  I have it on good authority:  any person seeking to destroy another person or group, won’t give up trying.  The silver lining is… I can find ways to manage my own stress and emotions.  I can breathe. I can walk away. Ground myself.  Storms do not last forever.   Life goes on, with or without us, but our attitude must be checked daily if we want to keep going forward.   I am mindful to not lose faith, hope, or strength.  It is important for me to forgive myself for things I cannot change.

Cancer… I have to say… thank you.   Thank you for showing up and giving me 2 full months of hospitalization…. (alone-time-rest) aka- only real vacation I had in 14 years during that time.   Multiple Myeloma… thank you for putting me in terminal illness category.  Without those social security benefits, I would have struggled more to care for my kids.   Cancer thank you for letting me face real fear and survive. Thank you for almost killing me… Through fighting and beating YOU… I found strength to defeat the other monsters in life.  It is impossible to wrap my brain around the depravity of some humans in this world.   Fighting Cancer has been a cake walk in comparison!

Survivor, unexpected…

I know prolonged stress can raise a person’s susceptibility to illness, but cancer never crossed my mind as a possibility … until it did.

The plasmacytoma squeezed a spontaneous fracture and crushed the bones holding my head up… parts removed, stuff added, then fused  🙂 bionic-like, with a titanium plate.  This was October 19, 2012.  I was diagnosed on Multiple Myeloma, stage II, at 37 years old, on December 4, 2012. MM is the invisible beast, the sleeping monkey on my back. MM affects bone marrow and bones, and becomes aggressive … with stress.

Just 1 mm away from paralyzation -expert doctors could not see it. They sent me home after 1st ambulance ride to ER. By 2nd trip a week later… the doctors quickly sprang into action to stabilize me.  For the first time in 40 years of life, I hold my head up, and look people in the eyes.  My mind, heart, and soul were (fortunately) rebooted as that small wrecking ball hit me in the throat.

I am still alive and breathing against all odds. I try to live each day mindful of that.  I recognize the physical and mental recovery needed, and act in forgiveness of others, to include myself.  Unfortunately, psychology & stressors create fearful uncertainties in a person blindly navigating life as an adult.  Grateful for ‘logistical timing’ during difficult moments.  I became the strong captain of my family’s life ship through the worst of storms.

Spiritually, I said the prayers and accepted christian salvation at age 14, and at age 18 committed my life to service before self.   I became a missionary willing to travel in pursuit of serving others in Jesus name.  Mother Theresa and Michelangelo were my role models.  Ignorant of catholicism, and identifing as southern-baptist, with non-denominational tendencies, but finally resting with the united methodist church.  I have studied world religions, participated in most traditional & contemporary styles of worship, many healing services, blessings, baptisms, christenings, and STILL feel unease about some religious organizations.  I was a Jesus freak passing out tracts to happy drinkers on Bourbon Street during Mardi Gras in the 1990’s with my Baptist Student Union friends.   Internally I was a God-chaser in search of some great Revival.  I also naively dreamed of ways to connect to the rest of the planet in a real way.

I am among many, mindful-spiritual-beings- + follow the basic teachings of Christ and Buddha + positive others.  My Faith is personal and intellectual…  Not every person is ready to hear things I say.  I do not judge how a person chooses an internal belief system, unless… they personally have a proven history of harming others or to impose control on others.  I choose continued education in Human Rights and Social Justice because these are issues I am passionate about.   My internal struggle is, the faith I claimed, never quite made sense for 25 years.

Happy. Hopeful, Yes… but No, not Content-  a work in progress. Hoping for ‘remission’.  (I’m classified as in Partial-Remission?)  Not Cancer-Free, but chronic pain free & mentally clear :).  Not enough money in the bank, or having the house I wanted, or the college degree level I desired (but that is only a temporary status update).   The Good News:  Physically, emotionally, and spiritually I am tALIVE and AWAKE. What I know, is the more I do not know.  I am grateful for the opportunity to keep living.

The title survivor, unexpected, is due to fear in my brain, 5-7 years away from death. (The spine fracture, spinal chord injury, and fusion) …Sprinkled with 4 years of chemotherapy/radiation.  Possessing corrupt mental data, made some calculated choices and decisions.   The results of Best Intentions not realized, but finding new ways to solve life problems. I was always  poor at math, so… not surprised.  I think it is wrong to assume I can ‘blindly follow my bliss’ in the world as it is today.  We are all connected and what we do and say to others matters more than how much stuff we want.

Here we are, in Maryland, it’s summer of 2017, and my intent is to remain mindful and positive, no matter the circumstance.  Reality can be dark and twisty, humor may reflect it in my stories.  I am a thinker, choose different paths, and consider myself a Patriotic American Veteran.  However, some born in USA do not appreciate the rights they inherently possess.   I think, those who have to fight to be here… get it.  Sadly, the Mean Girl culture of exclusivity, and belief that He who has the most toys Wins, does not paint the best human picture.

I live and die for the right to know truth, no matter how uncomfortable it may be to know, and help as many people I can along my journey.  My desire is to be a fully plugged in.   Politically, I am Independent (thinking).  I believe living things desire and “deserve” to be treated with respect, and that humans need a moral compass to help do the least harm to others while attempting to live. Differences in size, shape, color, mental, spiritual, physical or emotional status should be celebrated, and not problems to solve or eliminate. I see no point in being so politically correct as to encourage or allow other humans to behave in ways to offend or traumatize others without a consequence for those actions.

It would be odd if I said that my life was not changed while going through my first stem cell transplant, and then the second one.  June 2013, my rebirth year.   I started writing about the journey.  Sharing my stories with humor was always therapeutic but fun, but the message I intended was not what was presented at first.  If you were to ask any person that knows me… My brain processes data and energy 24/7, and faster than my tongue can translate.  Talking a blue streak while nervous and joking inappropriately when scared, socially awkward and over-confident in defense of others but not myself.

In the past, I trusted unsafe people and daily, experience consequences of those choices.  Fear infiltrated my soul from as far back as I can remember, and it disrupted life utterly. Today, some irrational fears (or working on those) are gone as well as some of mortality ones, even with that mm monkey.  I write thoughts in order to process it all and not break down from the weight of it.   Real life has afforded me stories to share and hopefully it will inspire others still struggling…. Becoming a warrior via cancer is not the worst thing, if you really take a look at the bigger picture. 😊

Stem Cell Transplant Day

Second Auto Transplant – Siteman Cancer Center, Barnes Jewish Hospital, Missouri.  Dr. Ravi Vij

Hello Everyone! Completed day 2 of my mephalan & dexamethosone chemotherapy cocktail. Tomorrow will be stem cell transplant day. October 17th will be my newest re-birth day and hopefully the last one I will ever need. I am not having any migraines yet, not heavily medicated, my anxiety level is low, I have different nurses & doctors this time around, but everything seems about the same. I brought books & art supplies this time, the hope is I can create something, which would give me something to show for all this alone time. Residing at Barnes (haha) has its perks, ie: not having to cook meals, unlimited ice water, chocolate ensures, auto adjustable bed (it shifts all night long to adjust to my movements) & unlimited wi-fi…. but at times it can feel like a very sanitary prison with a creamed corn or tomato soup air freshener. lol Fortunately I get to use the art room downstairs whenever I want to escape, as well as the exercise room… I really want to lose some of this weight and get stronger, but they are giving me steroids again… ugh! I figure I will whine & obsess over it, & work out anyway… worst thing that could happen is all the endorphines will make me a cheerier hairless chubby girl with muscles. Hahaha

Anyway, I am hopeful about this transplant. The first one did its job, but I was disappointed. I knew chances of remission were small because the chemo did not work before & my myeloma is harder to treat. I prefer to have this heavy hitting chemo over a short day period, than chemo over months & months, because when this chemo washes out of my system… I get at least 3 months of clean & free living… After this, they will put me on a very low-grade chemo for about 3 years, or they find a cure… That is the goal of all this body-punishment. Knocking the myeloma back, so it does not create more tumors or deteriorate more bones anywhere else. Chemo, although it kills cancer, brings with it lots of nasty little side effects. For me… a person that already had issues with memory the older I got, the worst thing is the residual ‘chemo brain’ … I used to laugh at it, but now it worries me a little because when this is over, I am praying that I can go back to work at least on some level, & do not want it to affect my productivity.

I have gotten to the point where I have to write everything down & set alarms in my phone for EVERYTHING… if I forget to do that… it is like whatever my kids tell me was never said. I journal a lot of things, like conversation details, just so I can recall them later. Pretty sad… haha I can remember things in the past, or movie lines, or song lyrics… but tell me a phone number, or your name… 9 times out of 10 I will immediately forget it. I also have nueropathy in my hands and legs… the legs are not too bad, just besides the overall weakness, there’s a creepy electric shock-feeling when I walk… but my hands are something entirely different. They are weak and I have difficulty grasping things tightly or holding onto things. I drop things ALLLL the time… and you can ask my family or my friends who served with me in the military; I already had a tendency to trip and fall and drop things before all of this… so radiation and cancer treatments seemed to magnify my flaws as if I got anti-superpowers. I do have a lot on my mind. Strangely, the cancer is not the center of my worries any more. I have put it in a place where I fully recognize I have no control over it. I can change my diet, my activity level, my thoughts about it, who I allow in my life, & attempt to stay in the best treatment plan… but that is all I can do. I literally have put it in Gods hands, & I do my best to live and walk in my faith, when honestly I do not understand it.

However, the divorce process is a whole other thing.  Still hoping it will come to some kind of resolution…

My worries have to do with my girls and their futures. I have been separated from my spouse almost 2 years, and we stopped getting any small amount of financial support over a year ago. This would not be an issue, if a year ago I had not gotten the neck fracture, got cancer, started treatments, and had to quit working temporarily. Who knows if the best doctors available to treat me will even be taking whatever crazy insurance our country has in the future. I am depending on the kindness of friends just to keep us together while I am in the hospital, and I will even need help when I get out. I do my part to contribute wherever I can, and my having these ‘feelings’ are not intended to be ‘prideful in the wrong way either’…. I am human and I get frustrated with life at times, even when I feel most of what I go through happens for a reason (sometimes I know things happen for no reason, they just ‘happen’). I feel that when this is over, for my own peace of mind and sanity; I need a game plan for how I am going to move beyond this situation so I can enjoy my life more fully and so can my children. In the beginning, I was hopeful for just a minimum amount of financial support… at this point, I would settle for anything, but my attorney says these things take time.

I have the option to go back to school when this is over, but all I am doing is accumulating more student loan debts just to pay bills. It seems so very pointless and avoidable. This situation is precisely why people do not get divorced in situations, because there is so much more involved with children… Anyway, it has been said my girls will see this as an adventure, and we should be grateful we have friends willing to help us, and my wanting a place of my own is by no means saying I am not grateful for the kindness of friends. I am eternally grateful for everyone that has offered through this entire journey. I moved my children on the promise of a safe haven, our own healing space, to finally decorate our own rooms, start collecting special things without fear that they would be sold or given away, and that I could take care of them… and… I feel I renigged on promises.   Without these necessities, how can I can train them to be the strong young ladies they will need to be in this harsh world.

Everything happens for a Reason Land

I got my basic results back for all the tests that were given (all 35) last week and I got 15 more today. The first 35 results showed everything within a normal range and obscure tests with scores of positive or negative, with negative being ‘good’, showed my results all in the negatives. It seems as though ‘overall’ things look good and I am responding to treatment. With the new results, I’ve got a red blood cell count, and a low mean platelet volume… still very anemic, and I still have cancer in my bone marrow (long story short) haha. I started with 40% cancer affecting my bone marrow, and after the transplant, I am now only showing 10% of my marrow affected.

I will be checking in to the hospital for my second transplant on October 15. I have mixed feelings about it because for a few days after my biopsy I had some hope that the doctor would call and tell me that by some miracle I was in remission. If that happened, there would be no second transplant and we could at least attempt to move forward in a world where myeloma treatment did not play such a crucial role or pose such a hindrance in my goal of giving the girls a place of their own that they so badly want.

I did my best for 3 months and have pushed out all negativity surrounding the lack of success from my previous 4 cycles of chemotherapy. I have spent that time doing my best to better myself mentally and spiritually in efforts to be more balanced. My role as the mother of girls; I have been waging an internal battle with myself, trying to understand what I need to do to make things better for all of them and realizing that whatever is happening is bigger than I can see right now. I live in ‘Everything happens for a reason…‘ Land, because I can see connections in everything… but at the same time, the questions of ‘Why me?‘ and ‘What happened?!’ and ‘How do I change this?!’ still very much resonate deep in my mind on a daily basis. Someone once said that I should be ‘grateful of what I do have because at least I am in a country where they have nice shelters, and I at have friends willing to share their homes with us.

It would be a gross mis-statement to say I did not appreciate what I have, because I absolutely appreciate how a fortunate we have been to be able to survive the last 18 months under the circumstances. Never in a million years would I have ever imagined the sequence of events or the timing in which everything occurred and it is shocking I am even still here. But even amongst the amazement and wonder of what I can only describe as multiple cases of divine intervention, and examples that I have a Heavenly Father that touches people I come across and they show me kindnesses that remind me that there is a peace and comfort to be found by looking up and not so much at obsessing over things as they are because when I do, I feel as though the gravity of the uncertainty would make it easy for me to drown at this point. If I am honest with you, however, my situation still saddens me at times, because I am not alone in this journey…and my children that would like answers, comfort, and assurance that things will be ok.

Fortunately they have people that love them and want to provide comfort as well… but girls still look to me to ultimately provide it for them. The sadness is not about the size of a house or the fence around it (if it was, I would have stayed in the gorgeous home in Florida)… I just want things that I believe are my ‘God-given’ rights as a mother. The right to raise my children in an abuse free environment, provide for their basic physical and emotional needs whether I am single or not. I should not have to compromise what I believe to be right and true in my parenting style as long as I am seeking wise counsel. I think the world assumes that a woman can easily strike out on her own in the face of abuse, and the state will provide what they need, and/or the other parent will be required to fulfill their financial obligations.

Life is not always fair, and some expectations are incorrect, and it is the reason many women stay in bad situations. Being a single parent is hard, but it can be manageable if you are willing to work your tail off to provide; …throw a chronic illness in the mix, things become ‘almost’ impossible. It is not fun living on full display, open to every criticism and every opinion because that is the nature of any type of community living situation. In some ways it has caused amazing personal growth because living a life with transparency is normally something I am comfortable with because I do not have anything to hide (what you see is what you get). It can become disheartening and discouraging after a while, because no matter how hard I work or how far we come, someone always thinks they know me or my kids better than I do.

According to some; I ‘coddled’ my children with affection, or I spend too much ‘quiet time’ with them away from the chaos of the world. I am told that I am not preparing them for the harsh reality that they might not have me on this earth very long. My children are doing well in school, they are involved in church activities, extracurricular activities, and they have a couple friends they call besties. I enjoy spending time with them, and for the most part, they like hanging out with me, the more comfortable they get, the more they branch out and I encourage it. I do not keep them from the world, I provide them a safe haven when they want or need a break from the outside world.

I do not hinder their experiences, nor do I force them into experiences because this world has more than enough stimulation and distraction all by itself without my adding to their stress. If they have an interest, I try to provide access to it, if they are more introverted, I do not force them to be like me, in fact, I would prefer they be much different and make far better choices than me. When I see it on their faces that the world outside is caving in on them, I do pull them close or remove them from the source of anxiety and show them how to calm that inner fear. I also teach them that if they can lean on each other as sisters (not just me), they can overcome anything.

I am also teaching them the utmost importance of faith in our Heavenly Father. I pointed them to seek their identity in what Christ teaches, not the opinions of men or boys because they are human and will often fail to meet the standards they might hold them too. Having a knowledge of something greater can give them peace, comfort, and power to handle anything else they will encounter, because life is almost never pretty (but they certainly are), and it is not easy. I know that just because I am here for now to comfort them; I will not always be here. I need them to find peace with themselves and amongst each other, so they will be strong no matter who they are around.

I tried staying busy with activities as I was growing up to fight my insecurities, I tried to earn my salvation by working and serving others, and allowing others acceptance of me determine my worth and I was always left unfulfilled because that is not living to my full potential. Having a personal relationship with our God, and having ‘real’ relationships with our neighbors but not allowing them to ‘govern’ our lives is a much better way to live. Find your purpose and your passion, but first you have to learn to love yourself the way God sees us, not others around us.

I have 9 days left before entering Round 2 of this. The last couple of weeks I have spent time holding my girls individually as they shared their fears about the future. I know I cannot give them the answers they want to hear, so I just try to feel and absorb the pain they feel and offer solace by pointing away from our suffering to the bigger picture that this is all just a blip in time, and it will be over before we know it. If we can see each day as an experience, each new thing as an adventure, and each person we meet as a potential to learn something new… we will be less likely to resist the changes that are happening, and more able to adapt and overcome any uncomfortable feelings. They want the cancer gone, they want to be in our own house, they want to have their own lives, their own space, their own chance to express themselves without fear that they will be misunderstood. When I hold my child as they go through the ‘what ifs’, and tell them that no matter what happens, they will be taken care of, and that mommy is tougher than she looks… and she is going to beat this monster, even if she just beats it down to a manageable level.

cool kid on chemo

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Wow, it has been a little bit since I have updated this. I suspect it was the chemo cocktail  this month. The only thing about the Dexamethasone I miss is that burst of energy I would get for 3 days, So many thoughts. haha So much happened in my friends and families lives, but I was not an active part of it. On the 13th, a friend passed away after fighting (ductal carcinoma) which is supposed to be a ‘treatable’ form of breast cancer at age 33. What surprised me was we were corresponding over a month or two ago, and I had no idea that things had taken a turn for the worse… Even her blogs said they were confident that the double mastectomy had gotten all the cancer, but what I am learning about cancer is the younger you are, the more aggressive it can be.

She was an amazing human being, mother, wife and friend, and as far as Christians go, she left a positive legacy of strength and hope. I was so out of the loop that I missed her relapse saddens me.  Fragile… Usually I can motivate myself at least to ‘talk’ to people, but lately it has been difficult. I use the word bizarre these days to describe my life and how I feel on any given day. I am now thinking of a different word to cover it… maybe ludicrous, outlandish? Absurd?

I am alive. I still have a head full of hair. Very mysterious painful bruises on the upper middle of my back for weeks. Got x-rays, but they saw nothing but buldging discs and hardware. I think of nothing to do around the house that would account for them… I wonder if maybe a cat (ILady Tubbington) jumped on me while I slept through it? I have a hand shaped bruise on my left wrist, and a couple new ones on my legs… I even started getting creepy blonde facial hair… AWFUL, but Rebecca and Colleen said… it’s ‘not that bad’… I love them both… but I see it in the mirror… even in sun… and my 8 year old PETs my face… so I know… it is THAT bad… lol

The doctor says it is hormones, a side effect of the Dexamethasone steroid where it gives you testosterone or something?… and that it would get better when I stopped taking it. I want to wax my entire face and when I start chemotherapy again… it will go away anyway. In a few months… if it is not gone, I am going to find a way.  All I think is ‘thank God I am single… These sorts of things are listed as ‘possible’ side effects to Revlimid, Velcade, & Dexamethasone, so there ya go…..

I did notice that I lost a section of eyelashes on my left eye tonight, right where I had a pesky sty… I guess the stye won the battle against my eyelid… though I tried to fight it with antibiotics and drops for weeks. Every week I had a total of three different styes on different parts of my eyes… each Tuesday they would seemingly clear up with the steroids, only to return on the following Thursday… BIZARRE… Yesterday, Kim came to hug and kiss me good morning… she said; “Mom, your eyes look really red… I mean… not ‘bad’… but puffy…. but you are still pretty mommy, it’s ok”… lol puffy and red for months now… I thought maybe they were getting better…. guess not.

I do not recommend ingesting toxic meds… they have undesirable effects on the human body. I finished my last round of chemo a little over a week ago and now the time has come to go and donate those life saving stem cells. I really wish I would have done a better job the last couple of months taking care of my body, but I confess, did not. I did fine with my eating habits, but the last weeks I found myself eating ice cream again… the sugar I am sure, did not help me any in the weight department… the steroids amplified all symptoms and my ‘derriere’ since the first fracture and surgery in October 2012 when I started my first round of steroids that were not even related to my diagnosis at the time.

Here is a funny story about my house to add to the rest… I now suspect my basement was used produce methamphetamine or at least lots of using it happened down in there in the past.

So… why do I suspect a meth lab? Well, I did some research.. Plus I was cleaning down in the basement, and moving things around… oh yeah, my Washing Machine decided to Break… and filled with water but no drain… I had to do too much physical activity, but I needed clean laundry.  (I now have a broken deep freezer, broken washer, and unusable dryer in my basement… basically a Thrift Shop) I was supposed to call and get it picked up a while ago… anyway… It took some work, but while down there, I noticed duct work still leaking cold air badly.  the guy never taped the stuff up. I took pictures because I had a tenants rights case.

As I looked, I noticed a LOT of random outlets and light fixtures all over the place, no reason. Upstairs we have multiple problems with electrical outlets, and things just do not work up there, so why are there so many connections overhead? Rows of cut off water hoses, there was a room in there, with a huge vent hole going up above ground, with yellow film on walls covered by some purple paint, not covered entirely… random brush strokes as if it was to cover something … Then I found little storage spaces built into the ceiling/floor, and one of them had about 30 empty boxes of pseudoephedrine inside… possible use for unsavory-ness.

The neighbor described an episode of “Breaking Bad”… sooooooo If we did not have enough problems… I get to hope and pray that the toxicity in the house has not done anything to us. I went to the ER a couple of weeks ago for breathing issues and extreme fatigue, but all tests showed me as normal… and I generally feel better when I am not in the house.   For the most part we are all ok… just some strangeness to investigate.  I have read, even if the house was cleaned, the chemicals still remain…

Anyway… moving on. I have been a little frustrated and down.  ‘relaxing’ is more difficult these days. I wonder if I try to get out of this lease, put my things in storage, send my girls to stay with different family members for the summer?  Then check in the hospital and not worry about finances in running an old, broken house. I figure maybe the girls could actually really enjoy the summer, someplace else… like little foreign exchange students staying with aunts and uncles.  Maybe that would be fun, and distracting for them… I need to be thinking, and someone will be help me come up with a plan that works.   The girls told me that I have been crabbier and it stresses them out because they worry.

Another reason for my frustration is I filed for divorce back in February 2012…  As of last night I was notified that my financial aid has been suspended due to my taking a lighter course load, and having to withdraw from multiple classes last October because of my health and hospital visits. It is reported as a ‘failure to progress as required’ for my degree program. I have 9 months of my GI Bill left to use, so I really need to crack down and complete these required classes…

I am trying to expect too much and things may not happen the way I want. I kind of depend on that money to pay bills.. I realize not a long-term plan… but it would hold me over until the legalities cleared up. I am on the look out for virtual or stay at home jobs that I can do in order to make some income, but I am told the moment I start bringing in even the smallest amount through a job, the sooner my current benefits will lower… which I guess would be ok if I knew I could count on a steady income.  With knowledge that everything will work out with the transplant and I will be back in a couple of months. I know I am complaining… Sorry.

I did got a new attorney, a sharp guy with experience in my type of family law cases. He was blunt when he told me that because we are still not divorced, if anything were to happen to me, the girls will have no other option but to go live with him… in fact he would be compensated via my disability if you can believe that!  obviously not an ideal situation. What I am reminded of on a constant basis, ever since my diagnosis back in December is… I have absolutely no control and NO CLUE what is going to happen next…  I either learn to ACCEPT this reality… or I go bonkers. Dealers choice… let it go…. or LET IT ALL GO…haha

Colleen is driving me to STL on Thursday, May 30. I will begin my pretesting for the clinical trial, my bone marrow biopsy, skeletal survey, EKG, and a host of other tests before I begin my first growth factor injection on Friday. Each day I get a growth factor, and the Mozobil injection, and on Monday I get the Central Line placed in my chest, and they will start harvesting the stem cells. I will be there until June 7th, unless they collect all the cells on Monday… then I will get to go home early. I get to stay home a week, then it is back to STL again for the transplant. I will put that process in the next blog in case anyone wants to know, or you can go to the links somewhere on my WordPress homepage.

ring that bell!

Today is the last day of my chemo cycles, but next week I get my bone strengthening infusions with Zometa. The conversation between my oncologist Dr. Ali (picture a lovely Indian Hindi accent speaking to me) and myself: (After some chitchat about my ER visit on Saturday, and the strange feeling that I could not breathe and the tests all came out fine… I felt like I was having a heart attack or asthma attack, but not quite… it was bizarre… Once I got the oxygen, I was better after a couple of hours. We are wondering if there is some air quality issues in my house causing me to feel winded… do not really know right now.) I said; “Dr. can you tell me ANYTHING about this treatment? Is there a reason the blood tests do not show a lot of changes? Should they not be changing a lot?”

Dr. Ali says… “He said, these are just standard blood tests, you must Please be patient, everything will come in its own time.” I said, “Look doctor., I have three girls, I live alone, I do not live near family because I am dealing with a divorce and custody battle, and I do not have full time adult caregivers on standby… I understand the need for patience, but I also have the reality of our situation, and need to know what to do. Like, what is your opinin as to whether this treatment working or not?” He said, “I cannot give you a yes or no answer to that question without a bone marrow biopsy, all I have are your blood tests, and all that measures is how well your body is handling the treatment and your overall health, not the growth or the remission of the myeloma cells.” So I said, “Will Dr. Vij be able to answer questions about my particular myeloma? Will he be able to tell me his estimation as to how all this is going to play out and give me some sort of a timeframe I can work with?” He said, “Yes, but we need the biopsy because without it, we will not know anything substantial” I said, “So I have to wait until May 7, go there for lab tests even though my nurse says they are ‘not’ giving me biopsy yet?

He says, “He HAS to do a biopsy, there is no reason for me to do one here, and have you get there, and he will want different tests run and do another one.” So I said, “So you are saying I will have to ‘wait’ for these new blood tests, and possibly get a bone marrow biopsy, and WAIT for several more weeks for results… just so I can find out IF this chemo is working?” He said, “Yes, that is what I am saying, and you have to be patient; Dr. Vij and I both want a cure and we both want you in remission, and he will find out exactly how you are doing and we will come up with a plan from there.” I said… “Waiting… that is my FAVORITE thing…” He said, “I do not think so… it seems quite the opposite.” I said,”That was sarcasm obviously, all this waiting is what is stressing me out the most...” He said… “I need you to Breathe, it will be ok, you have been doing very well so far, there is no reason that this treatment is not working, we are going to plan for the stem cell transplant some time soon, and it will probably be sooner than you think, but I just cannot tell you for sure anything right now.” I said… “Ok Dr. Ali… I will practice breathing again… I will try to be patient, obviously there is absolutely NOTHING I can do to speed any of this up…” He said… “No, there is not. Everything is going to be ok, I will see you next week.” 🙂

So, I know just as much today as I knew yesterday, and my level of persistance in trying to get answers really only serves to probably annoy my sweet little Hindi doctor. He is only 42 years old, and I am always so full of steroids on Mondays, which means my questions and speech are on rapid fire. If I am reading him correctly, he finds me quite silly and impatient… so I definitley do not disappoint. I am determined from this point forward, which probably should have happened weeks ago, to start being much more productive.

I let these treatments get the better of me, I have not worked out, I have slept more than I was awake, and I gained weight I could not afford to gain. So I need a serious rebooting of my brain and my attitude. I have been a sad shell of the gung ho fighter that I should be, especially when I am obviously doing pretty well. I have survived a neck fracture, a spine fusion surgery, 30 days of direct radiation, and 2 months of chemo therapy, I have not lost my hair, I have not been nauseaus, and my side effects have been minimal in comparison to others in my situation. This is not something to complain about, this has to be good in the overall scheme of things… at least that is my hope.  I should be living every day that I can accomplishing something, just ‘living’ … not sitting around wondering, planning, waiting, pondering, guessing, worrying… none of that has done anything for me except make me feel miserable. What good is it? I guess I was afraid to start anything for fear the doctors would say… “Ok, let’s go, it’s time, head to the hospital, time for treatment.”…

So instead of starting projects and being afraid of ‘Not Finishing’… I did NOTHING at all… so all that time is gone, wasted. I mean, yeah, I was feeling crummy, and no one blames me, or thinks I am lazy… but I have different standards for myself, and I am the one that ultimately has to live with ‘Me’ and my girls of course. I am sure they hated how much I was in bed this month, how much I did ‘not’ do around the house for them, or with them, and how unmotivated I was 80% of the time, and how every time we started a game or a movie, I had to stop to rest or head to bed… I am sure that was a total drag.

They have been handling it well, but the laziness has spread like a disease in my house, it is pretty messy (my standards), and everything that does get done by them is really not done well, so I walk around harping like an old lady and asking them to do it over again, and generally I get attitude that I am too tired to correct… or I get pouty complaining which is really fun. But overall… they have been really good kids. We are managing to get our showers, teeth brushed, we all get our homework done, the get to school on time, keep the house running, we have a clean kitchen, living, bathroom, and dining room, clean clothes, and everyone gets a meal at night, so I suppose that is a success.

But there has been not much of anything else… I mean… literally… we might get adventurous and go to the grocery store or even drive over to Rebeccas apartment and sit there… but that is the extent of life as of this past month. That is not much of a life… that is just getting by, and I feel like the kids are slipping through the cracks in some ways. I feel I am not giving enough affection, not noticing the right things in order to give praise, I am not checking up on their teachers as much, or their homework, and I am not following through with the rule enforcement consistently. So… there is that…. I did manage to type a 12 page paper this week on the five types of domestic abuse which highlighted the prevalence of ‘economic abuse’ and emphasized the importance of ‘empowerment.’ This is as well as all the other social programs that are needed to successfully break a cycle and get out of those situations permanently; I got really into that one.

Speaking of ‘economics’, I am pretty sure my case was picked up by the Legal Aid Services of Missouri, and I have an attorney, but apparently my file was so large, she is still in the process of going through it all and will be ‘calling me’?  Normally I would not care, but I am starting to care ‘a little bit’. Anyway, things will work out as they always do I am sure, and I am trying not to ‘worry about things I cannot control’ and that just happens to be something at the current time that I cannot.

I am hoping to find some type of work temporary somewhere, which would definitely help bring in a little living money. I will let everyone know when I find something. Oh! I also started painting my bathroom… it actually looks pretty good… it is much harder to do those projects than I remember, but I do have a sense of accomplishment and satisfaction when I complete certain parts of it. If it were not so expensive, I would paint every room in the house… that will surely keep my mind off of everything going on… The girls have been helping, so it has been very messy, but I think it is a good skill, and I hope they are paying attention to the details… Kimberly pays better attention to home improvement projects than Courtney, but they both helped, so it made me happy. One thing about my childhood I do remember is when my dad let me help with tools, or painting… so I know they will remember the silly days we painted a tiny bathroom… So… I can say I have started a project and hope I will have it finished by tonight. 🙂

So for today my report is this… this is my last chemotherapy of this cycle. I will be on a break from the Velcade & the Revlimid for a week, and the following week I will be in Saint Louis doing an unknown number of tests, to get some results that I hope are helpful, and also I hope I do not get told a bunch of “Run Around Answers”… or I hope they do not say they will call me in a couple weeks… and to SIT TIGHT AND WAIT some more… I think any more waiting or anticipating will cause my head to explode. My personality is not built for all this. I have Cancer – whoopitydoo… that is fine. I accept that fate. I even except the fact that it is some kind of creepy cancer that has no particular correct treatment, I even accept there is no cure… I even accept that I could have anywhere from 3 to 5 years to live (but I am open to 10 years + also) … but in the mean time…. Give me something I can work with. Give me a set of tasks, a set of treatments I can undergo… something I can put on my calendar, something I can say I am ‘Doing, to fight the inevitable… or Beat the Odds… give me an opportunity to do something besides more ‘WAITING’… that is all I ask. Or just tell me that ‘no treatment’ will make a difference, and I can just keep with the diet changes, the environmental changes, and maintain a healthy activity level and try live out of ‘whatever’ time I have left, without all the wondering…

I was doing that before the neck fracture. I did not know I had cancer, I was working, going to school, I was doing things and I was not slowed down and that was with a bad diet, I would probably be a whole lot better with all the life changes I have already made. I know I would have gotten sick eventually, just like anyone else… but I would not be ‘anticipating’ sickness because of a bunch of chemo meds, or wondering about surviving a transplant, or coming back to a house after a transplant wondering if the house is clean enough, or if my kids can handle seeing me that way…. I just want to find something I can do with my time, with my girls… something. Wow… that was a rambling tyraid… I apologize for that…

I think I apologize, it seems like terrible writing, so I am sure the reading is not easy to get through. I am bored… and kind of sad this is my last chemo, because that was the only constant in my week. My nurse Molly is so sweet, and she does not mind my 10 minute rambling steroid sessions before she hooks me up to the machine, and I plug in my headphones… It is an activity that I now need to replace with something else… right now it involves writing, watching movies or television shows… not the most productive use of a human beings time… especially a human being with a more limited time on the planet right? Haha I hope everyone is having a good week. My plan is to “Intentionally be as positive as I can, to take charge of my thoughts a little better, and take charge of this body and drag it out whether I feel like going out or not.” If I do not, then I will continue slipping into a funk that I do not want, and no one wants to be around some cancer patient in a depressing funk… I know I would not. Oh… we tried on the wigs, the girls said the hair looks too shiny and perfect, so it does not look like me. I am going to take that as a compliment that I am ‘not fake looking?’…. lol If I wear a wig down the road, I will have to wear a hat, otherwise it just will not look natural. I do hope that all the rest of the hair on my body goes away with the chemo… that will be something along with the weight loss that I am looking forward too. 🙂 Just… please God, let me keep my eyelashes and eyebrows… I am not someone that has EVER drawn eyebrows… I am pretty sure that it will not matter if I know how to draw or not…. I seriously lack those girly make up skills… If I could just keep my eyebrows… everyone make sure to add that to the prayer list. 🙂 Thanks.

let us ‘stun the cells’

My last induction chemo visit was fairly uneventful. Next Monday is supposed to be my last one. But at the same time the visit left me with many unanswered questions and an uncertainty as to what to expect next. The information I have been had all this time was what I was given in February when I had my last Bone Marrow Biopsy which revealed that only 25% of my marrow was affected and the genetic screening revealed the chromosome 13 deletion and I was stage 1 at ‘moderate risk’ for treatment success. Then I was told that I would be heading to Barnes Hospital to have the last of the preliminary labs to determine if my body is ready to handle a stem cell harvest, with a stem cell transplant shortly to follow. Dr. Vijs office gave me dated estimates, they said May 7 for the testing, and the results, possible harvest the second week of May, and that would lead into the 1st week of June.

I have been obsessively trying to make plans with all this information. Now I learn that this process is not as simple as that, in fact it is very common for the doctors to give you a date, and your ‘actual timeline’ being months and months apart from your initial estimate. No one told me this; I had no clue, otherwise I would not have been making so many plans, such as calling family members and trying to set up summer trips for my girls while I thought I would be checked in to the hospital. I am not sure why they would give me dates if those dates were merely arbitrary. It would had been helpful to know that those dates would be changing as the treatment progressed.

The aggressive way the nurses and insurance companies have been pressuring me to get all the paperwork completed, led me to believe we were on a pretty strict timeline for getting this transplant started because that is all they talk about, the importance of tackling the myeloma as soon as possible before any more tumors develop or bones become compromised. Monday, Dr. Ali told me that he has looked over my test results historically since November 2012 until now, and here has not been any significant changes in my numbers. I asked him what that meant, and all he said was that my percentage of myeloma cells in my blood were so low to begin that there was not enough of a change to register and the only way he can tell me if the chemo is working, was to check my protein levels in my blood by doing a biopsy and protein test. This confuses me, because I have now been through 4 cycles of chemo, which in reality ‘should’ be showing ‘something’ significant on all of my weekly lab work, if it is going to show anything at all, and I am just wondering if he is choosing not to tell me as to not cause undue worry without having the results of the bone marrow biopsy first.

I just wish doctors sometimes would give me the cold hard truth, rather than sugar coat things, I would rather be prepared, than be given false hope about something. I asked him if a lack of response has anything to do with my chromosome deletion, because I was told the chromosome issues can make some types of chemotherapy drugs less effective in treating my particular myeloma depending on what type of genetic markers you have. And he seemed to avoid answering the question directly, he just said that he does not want to say anything until he tests my bone marrow and protein levels. I needed to do research about this whole bone marrow biopsy, and the meaning behind the M Protein levels, and what exactly this cancer is doing to my body because I have been confused about it for a long time.

Apparently the best way to get this measurement of the M Proteins is to get a good bone marrow sample and this will give a little more accurate determination of whether this current induction therapy is working (still not 100% effective, depending on what part of the marrow that is sampled). The goal of the induction chemotherapy is to put my MM into remission or just ‘stun the cells’, which is basically to stop the production of those Monoclonal plasma cells from reproducing and crowding out the good plasma cells. I have to be in complete remission before they will attempt to harvest the stem cells. The stem cell transplant is supposed to be the ‘knock out punch’ to the cancer cells. I did not understand all of this when the chemo treatments started.

There are still so many questions I need to have answered and clarified. I was able to ask someone in my support group and I was able to get this information: A breakdown of what Multiple Myeloma does to the protein levels in your blood: The M Protein is this: my body manufactures a spectrum of different types of proteins called globulin that are part of my immune system. These many different proteins help the immune system by identifying invaders and pointing them out to white cells that go in and kill the invaders. The essence of Myeloma is that bad plasma cells cause one type of protein within this spectrum to be over-manufactured. This protein, instead of being distinct within a huge spectrum of proteins, is duplicated millions of times over with the exact same makeup. And it doesn’t identify invaders. And your body can only hold so much protein so it crowds out the healthy or good proteins and plasma cells. Since this protein all comes from the same clone — the same original cell that duplicated itself — it is said to be Monoclonal…hence M Protein.

The Bone Marrow Biopsy is said to measure the M Spike which is the measure of this monoclonal protein relative to the overall protein in my system. Looking at my overall protein numbers is not totally accurate, but is the only way to monitor the progress of the cancer. Some people have systems that do not manufacture M protein in response to bad plasma cells. Because of the disease my bone marrow will be unable to produce the normal levels of platelets, white blood cells, or red blood cells because the raw materials that are needed for the manufacture of these cells (the process of which is called hematopoesis) is crowded out by the bogus plasma cells. Thus, I get anemic and it fluctuates the numbers of my red blood cells…and I can have issues with blood clotting from insufficient platelets…or I can get infections frequently due to insufficient white cells.

Myeloma also eats the bones, so it is really important to monitor my calcium levels in the blood to make sure I am not secreting too much because it could become too much for my kidneys to process. I have been trying to understand what is supposed to happen next so I can plan, but I am learning now that there really is no way to plan, because even the doctors do not know how I am going to respond to the treatments because every myeloma patient responds differently. What he did tell me was that the regimen he has me on is 95% – 98% effective for all patients, so he ‘feels‘ the treatment he has me on will work. So, my confusion is this… why did he say that there has been ‘no significant‘ change in my numbers in 4 cycles so far? What is bothering me is all this planning I have been doing to prepare for a possible transplant in June might all be for nothing, if I get my bone marrow test results back and I am not responding to the current chemo regimin.

I have talked with people in my support group and they tell me that it is perfectly normal for the doctors to give me an estimate, and the timeline for treatment being many months farther out than anticipated. I have to take one day at a time and somehow figure out how to relax and wait for whatever they say comes next. I have spoken to some people, and they were put into such a stringent remission with their induction therapy, that the stem cell transplant was pushed back indefinitely until the myeloma showed itself to be more active again. My doctor tells me that will most likely not be the case with me, but again, there is a lot of ‘most likely’ or ‘seems like’ or ‘probably’ or generalities getting thrown around and I do not like that. I have been told that there are three different theories on when and why someone would get a stem cell transplant. One is to not do one until other drugs fail…this is the most conservative approach.

The other end of the spectrum involves doing two of them back to back (tandem) along with many other types of chemotherapy in the hopes of curing the disease completely. In the middle — mainline therapy for the moment — is the idea of doing the transplant after a period of “induction” with other chemotherapy drugs (which is apparently what I am on now). The reason for this is to “lock in the gains” achieved by induction, and prolong the remission beyond just the normal 2 to 3 years at a time, which is what most people experience after getting a transplant, hence why the disease is considered incurable, because it always comes back, even with something as aggressive as a stem cell transplant.

I have been frustrated this week because there is a great chance that my numbers are not where they need to be and there might not be anything I can do about it. I know there will be a transplant in my future, but knowing ‘when’ is not something I will have the luxury of knowing.  It is tricky, they have to tweak my treatments and my numbers to get them all just right, and right when the iron is hot, they schedule the procedure and they just get it done. haha. And the doctors really have not explained my myeloma with me very well, because I think I am still way too confused about my case and if he thinks that I will respond well to the treatment plan they have me on.

All the outside factors going on in my life have made it difficult to take charge of what is happening.  I thought I would be going in at least for a stem cell harvest in May, and I even called my mom and asked her if she wanted to plan to come out for that one week just to sit with me through it, but there is no guarantee of that happening at this point. Everyone tells me I need to relax and take this all one day at a time. I wonder if anyone else could be any more successful than I am at ‘not‘ thinking about these things? I realize there are things I cannot control, but can any of you imagine what it would be like to spend every day waiting to hear about test results, and waiting for information that you can do nothing about, and a future you cannot plan for? It is not easy.

I would like to have an idea of what to do for my house, my children, and my pets. I would like to plan for the classes I am taking, and to even see if I could work a part-time job because I still need to make some supplemental income. I am in limbo and unaware of what is happening next, I cannot do much of anything because I am in this holding pattern. In the beginning it seemed easier to deal with because, I knew I had the disease, I knew the basic protocol for treatment of the disease, and I thought I knew what to expect. I guess what I was unclear about was the timeframe in which all of this plays out. That is something I should have been better at pinning my doctors down about. Each time I ask them, they do not give me straight answers, they are always telling me to lean back and let the medication do what it is supposed to do, and ‘we will see what we see when we see it’.

This is not my favorite way of living, in case you all have not figured that out yet. This disease has so many different treatment approaches, and it is still incurable, so everything the patients are going through are largely experimental, and each success is great, but a successful treatment for one person can still not be a match for someone else. That is what is the worst part for me. You basically have to just take the treatments they throw at you, based off their knowledge of the myeloma, and hope the straw you draw is the right one for you. If it does not work, you draw a different one, and see how that takes, and so on and so on. There is no set standard, but the only protocol that is approved by insurance is the treatment plan I am on. The induction chemotherapy, followed by the transplant, followed by a regimen of maintenance chemo to keep he myeloma at bay for the rest of my life and treating it like a chronic disease.

like a toxic zombie

I think I slept through Thursday through Saturday and I do not even remember Monday through Wednesday because they feel like separate weeks from each other. I used to be able to fight against the urge to sleep, but lately, it just comes upon me and each week I feel like a toy with a battery that winds down. I will be sitting with friends and it is like I am not there at all because everything around me is hazy. I do not feel as if I am being a very good friend, because I cannot offer any substantial conversation on these days, and all that is left is a blank stare and yawning. Colleen took me to lunch but I know I was very dull company. She had a couple of stops and errands to run, and I fell asleep in her car for at least 30 minutes, she probably could have driven home and parked in her garage and I would have stayed asleep.

There is still so much yet to be done around the house especially before June.  Normal struggles with every day tasks of maintaining a home…  I know it is a normal side effect of the medications, but it still feels bizarre – like a toxic zombie. If you look at the sheets of side effects for each medication, it is difficult pinpointing exactly which medication is making me feel any particular way. Each one says something about neuropathy (numbness and tingly hands and feet make it difficult to hold on to things without dropping them), dizziness, drowsiness, memory issues, shaking, tremors, muscle weakness, irritability, and confusion… This stuff happens, but not all at the same time, which I am guessing is how I am able to still function.

Then the oncologist gives me a crazy antibiotic for an eye infection that I have had on top of all the other stuff. I eat the right things, I drink enough water…but I know that I have not worked out for real in weeks. I take about 20 pills a day, half in the morning and half at night. I wake up usually feeling energetic and have my coffee and eat a little something. Within an hour of taking the pills I can literally lie right back down again. As I lay there I have full awareness of what ‘needs’ to be done, but completely lack the energy and motivation in which to do it. If someone does not call, or visit, or ask me to get up and go anywhere, I could very well do absolutely nothing for hours. This is NOT LIKE ME at all…

I may have to hire someone to come over and drag my butt out of bed every morning, because maybe if I can get moving first thing, it will make the rest of the day easier to get through. I feel like a bum. I need a project or a job to do. I miss working, I miss having a life where it makes a difference whether I am there or not. Mondays through Wednesdays are different. I wake up, eat a little, take my meds, have a cup of Joe…but then my hands shake, my blood pressure raises, I talk faster than usual and I lack focus…basically it is ADHD on steroids. I am VERY exuberant about everything. I start to clean the house, and I start projects all over, and by the end of the day, you cannot tell that I did anything at all. I wish I could channel it into an art project, or paint the house, or clean, or something productive. I become so ramped up that I will stay that way for at least 3 days and sleep is merely optional if I remember to take something that makes me sleep… What I need to do is, make a game plan for myself. A list of things that must be done for the week, use those three crack-induced days to get them done. Even if it means I clean the house and do laundry all night long, at least the house will be clean and I will have clothes to wear for the rest of the week.

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