How...

How do I do this thing called life…

Now that I cannot reach for your hand

How do I reconcile these feelings…

The loss, the gratitude, the anguish...

The relief that your struggle is over

While mine has… changed

How do I wake in the morning...

Knowing that I can no longer reach out to you before my eyes even open

How do I laugh...

When your laughter no longer rings with my own

How do I not feel selfish in my sorrow...

While truly grateful you have peace

How do I … live… now…

When you are such a part of my definition of life

How do I adjust to this strangeness...

Of having you with me in such a different way

How do I move through this changed world...

Knowing that you have moved to the next

Time… I’m told… will soften the edge

We’ll see… we’ll see…

One Piece of the 'fix' for US veterans regarding access to health care....

One of the 'events' of 2014 was the spotlight that landed on the VA regarding health care, and the lack of it, for veterans.  I will not get into the details of what was exposed... but will say that systemic problems have been identified... and people are trying to work, from many angles, to try to fix the problems.  The goal is, or should be, timely access to quality health care for veterans... as promised.

There are many veterans who have never had any problems with the care they get through the VA.  That is important... there are many veterans who get timely appointments when they need them and receive very good care through the VA.

Acknowledging their successes does not excuse their failures and shortcomings, and bringing attention to those things that need to be fixed does not invalidate their successes.

For the veterans who cannot get a timely appointment, if any... for the veterans who get substandard care including, but not limited to, misdiagnoses and improper medications... for the veterans who have to deal with a system that seems to be set up to treat veterans as an 'inconvenience'... for the families of veterans who died while waiting for adequate care... those successes do not mean a thing.  It can even make the feeling worse... if it can be done well for some, why not for all?!

Problems of this sort are not limited to the VA.  Similar quality of care issues can be found, to some degree, pretty much anywhere, I'm sure.  However... the VA has publicly held itself to a different standard... has historically and publicly committed to providing the best care possible to veterans.

The private results often do not match that public commitment.  The most recent spotlights have shown that... and that spotlight has prompted some public moves to make changes.

I received a letter in the mail this past Saturday, Jan 3rd, regarding one of those changes.

The VA has decided that a veteran who lives more than 40 miles from a VA healthcare facility... or gets an appointment that is scheduled more than 30 days out... can make use of this new program, the Veterans Choice Program.

It has a nice ring to it.

The letter came with a card... and instructions to call a number to verify eligibility... the eligibility requirements stated in the letter are... a veteran living more than 40 miles from a VA healthcare facility OR a veteran who has been scheduled an appointment within the VA for more than 30 days out.

I am a US Army veteran with 100% service connected disability.  As such, I am eligible for complete health care through the VA at no cost to myself... but have found it nearly impossible to get my care at the KC VA.  My current VA doctor is at the Excelsior Springs CBOC (community based outpatient clinic).  That is fine for little things, but they have no specialists and just basic equipment.  For anything other than the bare minimum, I would have to go to the KC VA.  I live more than 40 miles from the KC VA Medical Center.  According to the way the letter was worded, I would be able to try to find a local provider who has agreed to participate in this program... and switch my care to them.

Having dealt with the VA, for myself, for the last 15 years, imagine my complete LACK of surprise when I called to confirm my eligibility and was told... no... I was not eligible... and no... that person could not explain the reasons to me... but I could call this other number and find out more.  *sigh*   

I called the number... and spent about 45 minutes on hold.  I explained my reason for calling to Paul, the VA representative.  His first response was, "What is this... Kansas Day?"  I told him that I didn't know... I'm from Missouri... but that it was Monday, and strange things happen on Mondays.  Thankfully, he had a sense of humor.  After asking if he could have my name, (I expressed my sympathies to him that he did not have his own), asking if he could have my birth date, (again he had my sympathy), and finally asking if he could borrow my social security number, (if borrowed, may be just fraud rather than identity theft?).  **Being on hold for an extended amount of time can be stressful... which often leads to the blatant abuse of humor as a stress relief tool**

After he was able to find my info in their system, we got to the program in question.

Contrary to what the wording of the letter implies, this program is NOT intended to allow veterans, who fit the stated eligibility requirements, to find health care providers, outside of the VA, who are closer to their home or have more flexible scheduling.

The way this program is set up to work is:
Once a veteran is given an appointment (with their own VA provider or VA specialist referred to by their provider)...
     IF the appointment is scheduled for more than 30 days out... OR
     IF the veteran lives more than 40 miles from the location of the appointment...
Then the veteran must notify the provider that they want to be put on the Choice Program List.
     -This list is generated weekly and sent to a third party entity.  Those people then go through the list, locate providers near the veteran's home, who A) have agreed to participate in the program (which often means getting paid at the Medicare level, as payment in full... said payments from the VA, prior to this program, often take 8 months or more to be processed), and B) have an opening in their schedule.
     -These people then call the veteran with the information regarding their appointment.

The people who work for the third party entity are the people who make the calls to find the providers and set up the appointments.  NOT the veterans.  Yes, this reduces the potential headache for the veteran as they try to find someone who has agreed to participate in the program... but it does not allow them another thing that the program description and NAME imply... a choice of providers.

What this program allows is for a veteran to get a specific appointment scheduled with someone closer within a reasonable time frame.... as a potential one time visit with said provider... who will then communicate with the veteran's primary care physician regarding the results of that appointment.

I am not eligible to use this Veterans Choice Card... right now... as I do not have an appointment scheduled.

When I said to Paul, the VA rep, "So... I should keep this in my back pocket for possible future use, as any scheduled appointment could possibly be an appointment that would make me eligible to use the program... but I would have to be sure to specifically request to be put on the Choice Program List?", he responded with, "Eureka!  You are the first person who has gotten it!  You wouldn't believe how many people get angry and hang up before I can even finish explaining!"  Hmmm... I told him that maybe that should be taken as a clue that the letter that comes with the blasted card, as well as the name of the program itself, are so misleading!

Clarity, however, has not been the VA's strong suit... not in the time I've dealt with them.  

The program could definitely do a much needed job of filling a gap in health care service for some veterans.  It could be an avenue to care, tests, procedures... whatever it is they need... at that specific time.

However, it will make continuity of care even more complicated in a system where it is already so hard to get doctors (within the system, where they have access to all of the veteran's information, as it is all paperless) to communicate with each other... or even read any parts of a veteran's chart other than the part that is 'their' responsibility.

This program will give veterans a choice... for individual appointments... between traveling over 40 miles or not... or between being seen sooner or later.  It will NOT give them a choice of providers... as the scheduling of each appointment in question will be done by that 3rd party.

This program may assist in access... in a technical way... but it might not wind up to be a practical way.

This program will not do much, if anything, to address the quality of care.  Even if the outside provider happens to provide more knowledgeable or more attentive care... it would be for that specific appointment... and that provider would then have to try to communicate with the VA. There would be no guarantee that the next time the veteran needed a similar appointment that they would be able to see that same outside provider.

The name of the program is misleading.  The details in the letter sent out with the card are misleading.  That would definitely lead to angry veterans who may have been waiting for an opportunity like this... or rather, like the one loosely described in the letter.

The VA medical system is NOT the only health care system with problems.  It is, however, an extremely massive system that has, on paper, committed to serving this country's veterans.  Many of those veterans don't have much of a choice when it comes to medical care... they can go to the VA and pay little or nothing (after putting their lives on the line in service to this country)... or they can go somewhere else and pay out of pocket.  Not much of a choice for so many of them... us.

Do we call this a step in the right direction?  How many veterans will actually use it?  Or be patient enough to work through the fog to figure out how it is set up to work?  Or be able to remember when an appointment is made that there is even an option... and remember that they have to specifically request to be put on the Choice Program List?

Yes... this is a post written out of frustration... and many may not even have read this far.  I wouldn't blame anyone... ha ha.

There have been other ideas put forth that I hope are still being considered.  I hope that this is not the 'solution' that the VA has come up with.  If this is it... it is not good enough. 


**** Due to some responses I've received, I am adding this as clarification ****

I firmly believe that the majority of people who work at the VA medical facilities around the country actually do give a damn and are doing the best they can with the limited resources they have been allotted.

I have, however, had to deal with many who are burnt out... have 'taken the job home' for far too long... and, as a result, find it easier to be a clinical and detached as possible... for their own well being.  I do not fault them for that.  I've also run into people who just don't care... but those can be found anywhere and are not exclusive to the VA. 

The problems within the VA are very rarely based at the level of actual interaction with the veterans.  The stresses do trickle down, however, to doctors and other staff.  I've spoken to many who are frustrated at the limited resources they have to work with... the overwhelming number of veterans who are seeking care from facilities that are outdated (many, not all) and grossly understaffed. Bottom line.... it impacts quality of care!  For a veteran seeking routine care... no big deal.  For a veteran with a medical crisis or serious health issues, it can lead to devastating results!

The farther up the ladder the decisions are made... the larger the disconnect... the less common sense.

The cries about being underfunded only go so far.  There have been plenty of bonuses handed out over the years (though some of that is supposed to have changed)... and the vast majority of those did NOT go to anyone who actually works with the veterans and has a clue about what is really needed!!  The people at the top are not hurting for money.... I don't believe it is a lack of funding... but a lack of common freaking sense being applied when deciding how to allocate those funds!!

*sigh*

Pick any government agency... or large corporation, for that matter... and you will find areas of gross waste... you will find people who seriously care about the job they are doing... you will find people who only look at the bottom line without regard for the reality of the whole picture... you will find people who will try to get the most they can by doing the least they can.  You will find outstanding individuals... and people who should not even be allowed in the door.

The system is broken... flawed.  It is being highlighted now... again... and changes are happening.

This particular change... the way it was described to me by the VA representative I spoke with, at length... seems to me to be yet another decision made at the top with little regard to the reality of how it will work.  At the very least, it should be presented in a way that is clear and honest... instead of misleading and difficult to understand... then difficult to get it explained.  The way it's presented seems to add insult to injury... give veterans more credit than that.

Some veterans are having no problems with the VA.  For the ones that are... the vast majority of those problems are systemic problems... and there is no excuse. 

Perhaps the changes will keep coming.  I can only hope so.

To all of you who DO work within the VA and who DO give a damn... thank you!!! 

I am painfully aware of the fact that the VA does not have the market cornered on 'expectations exceeding the staffing'.  Tim had a bone marrow transplant last year as a treatment for Multiple Myeloma.  At the time of his transplant, this particular facility had gone through some changes... they had become listed as one of the top bone marrow transplant centers... and they were scheduling over 5 times the number of transplants they had done the previous year.  The decisions at the top resulted in a sharp increase in the number of patients... without increasing the staff accordingly.  This led to so many mistakes.  The entire staff, from doctors to aides, were overwhelmed.  They continued to care and to do the best they could with what they had.... but there was NO WAY that it could not impact patient care.  I witnessed many mistakes, some of which meant the difference between a good chance of survival and very little.  I was able to stop several when it came to Tim... only because I was present, informed, and fast. 

These problems did not happen because the staff didn't care... it was a systemic problem... and they have worked hard in the last year to address the problems.  They added space and staff... a lot of both... and it made a difference to new patients coming in.  The changes there have been positive.... but that doesn't matter to the people whose loved ones suffered as a direct result. 

I would have appreciated knowing the truth of the situation prior to walking into it.  Tim and I could have better prepared ourselves and not been caught off guard.  THAT is why I wrote this piece.  Getting caught off guard, frankly, sucks.  The letter that came with the card for this program was grossly misleading.  Considering I know many vets who would love to be able to access care outside of the VA but are unable to afford it... it just adds insult to injury to be sent something that 'looks' like it could be an answer to a prayer... but turns out to look like something that could just be another difficult step.  

So... to all who care enough to do all they can... no matter what the job is... thank you.

The Importance of Second Opinions!

There is no other way to say it... a cancer diagnosis is terrifying!  No matter the type of malignancy, if a diagnosis includes the word 'cancer', part of the initial reaction is raw, blatant, fear.

Thankfully, with the amazing advances in treatment possibilities, in many cases, the fear is tempered by a great deal of hope... a treatment plan that will offer at least a fighting chance. 

Many types of cancer can now be treated in ways that not only minimize the blasted mutant misery causing cells... but in ways that allow a person to continue to live a full and active life.  (We look forward to a future that holds actual cures!)

Often, a treatment plan involves a more intense initial treatment plan followed by a gentler maintenance medication regimen... and frequent follow up testing to make sure to catch and increased activity in the disease. 

When one gets to that point, they have usually been on the 'roller coaster' for some time.  That initial blatant fear... followed by trying to build a working relationship with medical professionals... coming up with a treatment plan... getting through the unavoidable difficulties that go along with, essentially, subjecting one's body to something deadly, (albeit something that is increasingly specifically targeted)... dealing with all of the side effects (which we are told about but cannot grasp the reality of what it will be like until we are smack in the middle of it). 

They have been through the wringer... and come out on the other side... cautiously optimistic but, most likely, not daring to believe too easily in the 'good' results.  There is nothing like a cancer diagnosis to bring one's mortality front and center! 

The long term follow up testing is so important!  Reality does not go away... the person is painfully aware that there may come a day when the results start going in that frightening directions... but each set of positive results help to bolster one's spirit... helps to make it easier for one to focus on LIFE... not worrying about what their loved ones are going to do if they have to, again, undergo intensive treatment... not worrying about trying to help organize their own final arrangements.

We need to be able to trust the medical professionals who are helping to track our health and health risks. 

We should be able to trust them... each of them... from the doctors and specialists themselves, to the lab techs, the pathologists... all the way to the nurses.  We should also be able to trust in the technology that is used.

But...

Every single one of those people is human.  Most of them are strongly dedicated to what they do... they have a personal reason that drives them to help people.  Most of them are doing the absolute best they can do for the people they care for.

Not a single one of them is perfect. Anyone can have a bad day at any time.  Some people are burnt out.  Some are so arrogant that they refuse to be open to anything other than their own view.  Some simply lack a level of compassion that is absolutely necessary in the medical field. 

One of Tim's nurses told me... "Every class has someone who graduates at the BOTTOM of the class... "  At the time, that was one heck of a reality check for me... but it was one that, as Tim's partner and advocate, I needed to hear.

Recently, someone very dear to us got the dreaded news... the latest results were pretty ugly.  He was told to prepare for surgery and chemo... as the cancer had returned in force.   He's a pretty tough cookie... and was wrapping his head around all of it... getting ready to do whatever was needed.

He had gotten these results from the place he had been going for treatment for quite some time.  He had no reason to doubt them.  Why would one take the risk?  Why would one NOT believe it when they are given such news... after being in the fight, on the ride, for so long already?  Once one is dragged onto the roller coaster, no matter how well things go for however long... one learns that they have to be at least partly ready for that other shoe to drop... for the ride to skip the rails.

Thankfully, another cherished person convinced him to get a second opinion.  That meant traveling to Houston... and that kind of thing can be very hard to fit into an already stressed budget... so he also helped pay for the trip. 

The results from MD Anderson, in Houston, were shocking.  We often think of a second opinion as an avenue to fine tune a diagnosis or treatment. 

His local specialists had told him that the cancer had returned... strong enough that he had to prepare for surgery and chemotherapy... and there was also some lymph node involvement. 

The specialists at MD Anderson told him that he had NO SIGN OF ACTIVE CANCER.  The slides looked great... there was no indication on the slides that there was ANY reason to do anything other than continue to do what he was doing. 

That is a truly terrifying discrepancy.  Had he not been able to make the trip to get the second opinion, he would have faced going through some seriously life impacting treatment.  He would have done it... he would have had his strength and the love and support of his family and friends... and he would have gotten through it... if he needed to.  He was getting ready to go through all of that.........

.... because someone made a mistake.  A mistake that was not caught by anyone else along the line.

We have to trust these people.  Without trust, it is so much harder to have hope.... and without hope... how would anyone get through the hell of these treatments?! 

But... please.... do not trust blindly!!!  Ask questions!  Never go through this sort of thing alone... as another set of eyes and ears will bring up another set of questions... and, perhaps, different answers. 

Never be afraid to trust BUT VERIFY!  If your doctors get offended by someone wanting to do whatever it takes to verify the information that will have such a huge impact on one's life.... get different doctors. 

In this case, it wasn't the doctor that made the mistake.... it was the pathologist...

Getting a second opinion is a way of double checking the work of everyone involved... and no health care professional worth their weight will have any problem with that. 

We are grateful that this person so dear to us did NOT wind up having to have the surgery and chemo at this time.  We know that it may happen in the future... but not now... not yet.

We are terrified to now have to wonder, though.... how many other people have suffered because of someone who may have had a bad day... may have had a bad moment.... may have been distracted by the 'rest of their life'... may be in a job they could care less about... may have graduated at the bottom of their class.  There is no way to tell why the mistakes were made.... but we cannot UNknow that a terrible mistake was made... and wonder how many others ....

Please.... trust but verify.  Get second opinions.  The reality of the need is sad... and scary as hell... but it is reality.  It is your life... mine... the lives of our loved ones...

The battle against cancer is so hard.  Empower yourself with information.  Give yourself permission to question... everything... and keep questioning until you get the answers you need.  They are often enough not the answers we want... but sometimes... sometimes... the right interpretation can make all the difference in the world. 

Grace Moments

In the past several years, there have been so many of what I've come to call 'Grace' moments.  I call them that because I simply have no other way to explain them.  One of these days, I'll sit and write about those... but, right now, I'd like to share the latest...
Tim has had a rough time with his lungs.  He's fought through several rounds of pneumonia, several COPD 'flare-ups', blood clots in both lungs... and more.  Some of those fights were intensely rough... but he has always come through, often surprising the doctors with his speed of recovery.  *smile*

In August, we found that his lungs were taking a bit longer to recover.  The oxygen levels in his blood were too low, which puts a person at risk for all sorts of delightful things... ugh.  He started wearing supplemental oxygen pretty much all of the time, which annoyed him to no end... as it really got in the way of the blacksmithing!  He wanted to do everything he could to help speed the healing process, so, after talking with the respiratory therapist, he started getting on the treadmill as often as he could.  That would be great exercise for his lungs and help to get him back into the workshop more quickly.

While walking on the treadmill, he would wear a fingertip pulse oximeter to track his oxygen level... if he was dipping too low, he could turn up the tank.  One day, he noticed that his heart rate dropped while he was walking.  It isn't normal for that to happen, but we weren't sure how reliable the fingertip oximeters are for monitoring heart rate.

That led to questions for his oncologist... as the chemo that had done such a great job during the first part of the year does carry a heart risk for a small percentage of people.  Before he restarted the chemo, we needed to get his heart checked out.

A trip to a cardiologist led to a stress test, which did show an area of blockage in Tim's heart.  The degree of blockage couldn't be determined without a heart catheterization, though, so that was scheduled for Oct 14th.  They would run the catheter in through his femoral artery, up to his heart, determine the level of blockage... and we would go home with either medication, a stent, or both. 

Insert a change of plan.  (And yet another 'Grace' moment)

Sunday night, October 12th, Tim was having a lot of trouble breathing.  I called his oncologist's office, and we made a trip to the ER.  They checked out his heart, to make sure he wasn't having a heart attack... (he is not allowed to have one... and he has already hit his quota of 1 stroke)  His heart was okay... it was his lungs that were the issue, as we thought.  He wasn't running a fever, which was great, and his lab work showed that his body was responding as it should to whatever was going on.

His need for oxygen was up a bit... instead of the 4L he was on at home, he was up to 6L to keep enough oxygen flowing in his bloodstream.  Tests showed he had something brewing in his lungs, and though it wasn't causing a fever, it was making it harder for him to breathe.  They started him on some heavy duty antibiotics, to cover all the bases.

They admitted him that night and moved him to a cardiac section.  The next morning, they let us know that they would like to go ahead and do the heart catheterization that day, Monday.  Tim's mood was good... he wanted them to hurry up and do whatever they needed to do... so he could get back home.  *smile*

The procedure took longer than they anticipated, and Tim wound up being the proud owner of a shiny new stent.  It turns out that Tim had a vessel in his heart that was 80% blocked.  There were two other areas of very minor blockage that the cardiologist is not concerned about.

The main reason the procedure took so long... they ran into trouble getting the catheter through to Tim's heart.  The main branch of the iliac artery that feeds blood to the right leg (where they accessed the femoral artery to run the catheter)... was almost completely blocked.  The doctor was shocked that Tim had not had serious symptoms, or worse, as a result.  The blockage was so severe that they had a very hard time getting through... and had to do so very carefully.

They had to deal with the heart issue at that time... but Tim will have to go back in about a month and have that other artery 'cleared'. 

In addition to the stress test that Tim had, his doctor also ordered a 24 hour holter monitor... which records the heart's activity... checks for any irregular beats, etc.  The results of that, and everything else done, have shown that the only issue with Tim's heart was the blockage.  That means that the initial thing that raised the questions... was never even an issue. 

The blockage in that other artery would never have shown up on any test that Tim would have had done. 

Tim could have had a heart attack, or another stroke, at any time.  He didn't. 

I can't help but consider everything surrounding what they found, and treated, with Tim's heart and vascular system... yet another 'Grace' moment.  The initial question was such a fluke thing... or the nudge of a guiding hand...

Can't help being amazed, grateful, relieved... humbled... and hopeful.

That was Monday.  Tim rested for most of the rest of the day/evening.  Things were pretty calm until late that night.  The nurse came around to check on Tim and check his vitals.  His temp was 99.3... and, for Tim, anything over 99 typically means that his temp is on its way up.  She and I were talking about that... and Tim started having more trouble breathing.  She called in more people... wanted more sets of eyes... and there was a flurry of activity, tests, etc.  Tim's temp jumped up above 100 for a short time.  They bumped the oxygen up to 10L... but it wasn't enough.  They were talking about possibly having to move him to ICU and put him on a ventilator... but, first, they would try him on a bi-pap machine.  (This is often used for people with severe sleep apnea... it helps provide pressure with the supplemental oxygen... kind of a gentle breathing assist.)  After a very short time on the bi-pap machine, his temperature came back down, his blood oxygen level was high enough and stable... and he was much, much more relaxed. 

By mid morning the next day, Tim was off of the bi-pap machine... though he was still on 10L of supplemental oxygen.  It was progress, and we'd take it. 

When Tim went into crisis with his breathing, he had been getting heavy duty IV antibiotics for almost 24 hours.  They can take 24 hours to really start working.  Had we not gone in to the ER Sunday night, we would likely have been at home when his symptoms worsened... at it would have gone very differently. 

Yet another 'Grace' moment.

The doctors let Tim rest and try to recover a bit that Tuesday.  The pulmonologist, lung doctor, was pretty certain that a bronchial scope should be done, as Tim's lungs were really full of infiltrates, with no clear reason why.... and the best shot at being able to treat it would be to identify the cause... which would take the bronch.  However, Tim was a high risk patient for that procedure... so they waited until Wednesday. 

The docs were very clear with us that they felt the bronch was necessary... but that, because it would stir things up in his lungs, Tim may wind up getting much worse, initially.  We tried to prep ourselves for that possibility. 

Tim was cracking some jokes during the prep for the bronch... which really helped... us as much as him... *smile*  We waited... and wouldn't you know it... he spent a little bit of time (less than 20 minutes) on the bi-pap machine after the bronch... and did just fine.  He was cracking up the nurses... I think they might have tried to keep him just for the comedy relief... ha ha... but he was back in his room in no time.  *smile* 

Since then, his breathing has steadily improved. 

So much Grace... so many moments....

The cause of the latest lung bug is still a mystery... but he is improving... feeling better...

We are heading into more chemo treatments, and it is looking like he'll go in stronger than if he had started back up 'on time'. 

How can we not have hope?  How can we look at how things have gone.... yes, we are vigilant, sometimes driving the docs nuts, I'm sure... but that vigilance and knowledge, partnered with the right people and things being in place when they are needed.... combined with the impossible to explain 'moments' when things go the way they need to, in spite of every indication and expectation that they will go sideways... how can we look at that and not have faith?  

This ride is scary... and I dare not look too far ahead... but this man never ceases to amaze me with his strength and willingness to fight when needed...  and determination to live every minute.  

The ride continues... and I really cannot ask for more than that.  We'll keep fighting, living, loving, laughing... hoping... creating... making memories...


 Dawn

Multiple Myeloma - the roller coaster

Just when you think life is getting settled...

At the beginning of 2013, my fiancee, Tim, and I were getting settled in our new home.  We were enjoying doing some wood and metalworking.  We had recently adopted Maggie, a little lab mix, from a local animal shelter.  (We had only gone that day to take a look, thinking that our 13 year old pitbull, Mohta, really needed a furry friend... but, with barks, yips, and yaps in the background, when this little lady just quietly stood up, her paws on the gate, and looked at Tim... it was over.  Decision made.  We had a new addition to the family.)  Tim's son and daughter in law were expecting their first child, a little girl.  (Tim made her the most darling swing!)  Tim's daughter was planning her August wedding.  We were home... finally... and loving it.

Tim started feeling more and more tired, though.  A trip to the doctor for a check up found that Tim was anemic, his hemoglobin was low... and that was causing the increasing fatigue.  His B12 was also low, and that is one of the common causes of anemia.  (Low iron is a more common cause, but his iron level was just fine.)  Tim got weekly B12 shots for a month or so... new lab work showed that his B12 level was fine, but he was even more anemic.  His doctor ordered a test to check some other proteins in his blood... and that test came back abnormal.  A referral was made to a hematologist/oncologist... and after more testing, Tim was diagnosed with Multiple Myeloma. 

Multiple Myeloma is a type of blood cancer.  To put is simply, it causes a type of plasma cell to copy itself, over and over.  This causes a decrease in the number of healthy blood cells, can cause bone weakness and fractures, can cause kidney failure, and more.  There is no cure for Multiple Myeloma.  At that time, March of 2013, 95% of the cells in his bone marrow were cancer cells. 

The day of the diagnosis, Tim asked his oncologist, "Is this going to kill me?  How much time do I have?"  His oncologist leaned toward him, looked him straight in the eyes, and said, "Tim, don't you ever let anyone put an expiration date on you."  Tim took a deep breath, and replied, "Okay... what do we need to do?  Let's get to work."  There was no question that the two of us were in for a battle, but it would be one that we would fight side by side. 

That work began with several rounds of one chemo regimen, which was not very effective, followed by a bone marrow stem cell transplant... which, also, was not as effective as hoped.  At the beginning of this year, 2014, he began a new chemo regimen... which was the key to, finally, achieving what they call 'very good partial remission' by the end of June. 

The last year and a half has been quite the roller coaster ride... and it continues. 

We have made countless 2 hour plus round trip drives to various doctors.  We have battled through several bouts of pneumonia, one of which resulted in an ICU stay when the infection got into his blood stream.   Tim became the 'proud owner' of an intrathecal pain pump... an amazing gadget that has allowed him to have very good control of the extreme bone and nerve pain, without the medication fog of pain pills.  His spine is full of compression fractures, many of his ribs have tiny fractures, and he has a mass of cancer cells in his sternum, as well as small masses in either shoulder.

He underwent an autologous bone marrow stem cell transplant... a process where they, first, ran his blood through a machine, where it was spun to separate out the stem cells, the remaining blood returned to his body... then hit him with some very strong chemo to basically kill what was left of the cells in his bone marrow, about 80% of which were Myeloma cells... then re-injected his stem cells back into his blood stream.  Those amazing little cells then found their way back to his bone marrow and began their job of getting re-established and back to the job of creating healthy blood cells. 

The risk of infection during that months long process of prep, transplant, and cell recovery was extremely high.  Tim had several more rounds of pneumonia... and blood clots in both lungs.  So many close calls... so many 'grace' moments.

It was a terrifying and exhausting time... but there was little energy to put toward feeling too much of that.  The focus was on the goal... and there was only one way to get through it... moving forward one step at a time.  We spent 3 months away from home for that process... had to be within 20 minutes of the hospital... to finally get home to our home... and our furry 'kids'... was a relief beyond measure.

But, we DID make it home... together. 

Testing last December showed that the transplant had not been as successful as hoped, so Tim then began a new chemo regimen.  This chemo was fairly well tolerated... the chemo infusion took less than an hour, so the drive to KC for treatments took longer.  Tim's white cell count rebounded very well, drastically reducing the risk of infection.  His red count and hemoglobin stayed low, though... so fatigue remained an issue.  He was also on a blood thinner due to the blood clots in his lungs last October. 

Overall, though, the treatments were well tolerated, and we got into something of a routine.  His energy level continued to increase, too, which was fabulous.

The last year and a half has also had some incredible moments... his son and daughter in law became parents to a beautiful little girl weeks before Tim was diagnosed.  Tim's daughter got married last August.  We have had so many great days.  We believe that laughter is great medicine... though we have been known to overdo it sometimes. 

Tim's courage, strength, determination, and flat out refusal to let this cancer bring his world to a halt have been amazing.  I do all I can to learn all that I can in order to not only support him through this, but to allow him to just relax as much as possible... knowing that I will be there to help navigate through all the 'stuff'. 

We have both been interested in wood and metal working for years.  Since meeting, we have spent a lot of time creating a variety of things.  The Myeloma effects and treatments put a stall in much of that... but this year, Tim has really gotten into blacksmithing.   He had built his own coal forge almost 4 years ago, shortly after he had a stroke.  That had piqued his interest, but we hadn't done much with it for the last few years.  This year, we've learned enough to really be passionate about it!  The coal forge was a concern, due to his lungs being more easily irritated... so we have added a propane gas forge to the shop.  It's amazing!  Not quite as much flexibility as the coal... but it's not a bad trade off. 

Tim finished his scheduled 6 rounds of chemo at the end of June.  At that time, the plan was to retest at the end of August, check his Myeloma numbers, and start on a maintenance schedule of the same chemo.... once every week or 2... to keep the Myeloma low.  There is no cure, so the goal is to find something that works... and keep using it as long as it works.  If and when it stops working, find something else... and so on. 

Testing showed that the Myeloma is advancing.  In June, the amount of cancer cells in his bone marrow was less than 1%.  The testing in late August showed the Myeloma had increased to 5-10%.  Instead of heading into a maintenance regimen, Tim will undergo 3 more cycles of treatment... retest... and go from there.  We are confident that the chemo will do just as well this time around as it did during the first part of the year.

Before restarting the chemo, though, the recently discovered issue of some blockage in his heart has to be taken care of.  That is scheduled for this week... one more test will lead to either a new medication, a stent, or both.  So frustrating... and, yes, scary... but cannot help but feel grateful that we caught it when we did.  Another 'grace' moment... there have been so many of those...

Once treatment starts, Tim's red count and hemoglobin should come back up a bit... reducing the fatigue and increasing his energy.  Hooray!  He had been waiting for fall temperatures to arrive... trying to forge in 90 muggy degrees is difficult. 

We've discovered a surprising number of blacksmiths in the area... professionals and hobbyists... every one an artist on some level.  We were able to travel to a national artist-blacksmith conference in August.  We have so many ideas!   We are even learning a lot of the skills needed to bring the ideas into reality! 

All we need now are some more relatively level days when Tim feels good enough to hang out in the workshop.  I know we will have lots of those days!

This roller coaster has become our reality.  The ups and downs can be overwhelming... but are much, much better than the ride coming to an end.  We are strapped in and ready to ride for as long as the ride will run!

No one knows how much time they have in this life.  We do know, though, that we don't want to waste a moment.  Every day is a gift.

Thank you for reading.
Dawn

Making Memories - Fighting Multiple Myeloma

Thank you for stopping by!  My name is Dawn, and I'd like to introduce you to Tim... the man who changed my world simply by stepping into it several years ago.

Tim was diagnosed with Multiple Myeloma, a type of blood cancer, in March, 2013, less than a month after the birth of his granddaughter. 

The stress related to cancer (of any kind) and its treatments (and side effects) is intense, and our hearts go out to all those who share the fight.  We are actively doing all that we can to fight it, with an absolutely stellar medical team and an amazing support network of family and friends.  Humor is often abused... but, hey, it's good medicine!  All we can do with the situation is fight the good fight... so we do...

The other stresses... medical bills, insurance deductibles, vehicle issues, etc... those can be overwhelming.  When they are, it takes much of the energy and time away from memory making.  Anyone who knows Tim no doubt has some great memories involving time with him.  *smile*  Some not fit for print, I'm sure... ha ha.  Now, though, it has become even more important to him to consciously take the time to make as many memories with family and friends as possible.  It is important to me to help make that possible.  I do all that I can to make sure that he has all that he needs... and that includes not only quality medical care, but time spent with the people he cares about and time spent doing the things he loves to do.  Those things keep him focused on something other than the Myeloma. 

There can be times, like now, when the financial situation gets overwhelming... and it eats into our days, stealing my energy and focus, further limiting what we can do to keep every day as positive as possible. 

That is what has brought me here, writing this blog post. 

Our vehicle is in the shop, again.  This time, it needs a new radiator.  It didn't leave us stranded, but it did overheat on the way to a doctor's appointment... we were close to an exit, so a detour for coolant didn't take too long. 

That is the kind of thing that worries me.  We are soon heading into winter, and we know we'll be making multiple trips a week to Kansas City for Tim's treatments.  The minivan has been a blessing, but being a 1999 Caravan, it's likely to need something else before we know it.  Not being able to get Tim where he needs to be is simply not an option. 

Luckily, we have the money to get it fixed right away... this time.  If we had a 'vehicle fix fund', that would help tremendously.  A new(er) vehicle is in the future plan... but it just is not possible right now.

Tim has a grandson who is graduating from college in late November... in Savannah, Georgia.  The two of them are very close, and have been since day one.  Not making that trip... and those memories... is not something I'm willing to consider.  I want so badly for the two of them to be able to share that day.  The cost won't be tremendous, as we'll be driving... but it means that is money that I will not be able to set aside for other needs.

We are so fortunate that Tim has relatively decent insurance, but after the first of the year, the deductible starts over.  That is nearly $2500.  We are whittling away at a pile of medical bills right now... but that is more manageable and less overwhelming than the deductible portion.  Tim has a long list of medications he must take, and those will have to be paid for at full cost until that deductible is satisfied. 

Keeping Tim focused on something other than the Myeloma is a priority, too.  He has become really passionate about the blacksmithing, and he is amazing at taking an idea and making it a reality.  We have quite a bit of scrap steel, and we have the gas forge.  He would be able to use the coal forge if we had the proper ventilation set up.  Some tools, we can make... there are some others that would make the process easier on him that we cannot afford to get yet. 

We're very good at making the best of what we have, and we are so full of gratitude and appreciation... as each day brings another opportunity to love, laugh, live... and make memories.

This is tough.  Both Tim and I have always been ready to help others in any way we can.  I know that we could get by... but... call me crazy... I want more than that for him!  The fight against the Multiple Myeloma is part of every day... but it's so important to me to make sure that Tim's days are filled with more... more love, more laughter, more joy... more memories.  Not more stress.  On days when he feels well enough to spend time in the workshop, I want that to be possible.  On days when he feels well enough to have lunch with friends, I don't want to have to worry about the gasoline budget. 

Tim has spoiled me rotten.  I have never felt so loved, cherished, and treasured.  He is my best friend, my partner, and I could not love him more. When he was diagnosed, I put in an order for 20 more years with him... and we are doing all we can to get as many of those years as possible.  The reality, though, is that, his Multiple Myeloma is aggressive and has proven to be resistant to many of the standard treatments.  We will work for those 20 years... but each day is a blessing, a gift.

I am trying to make sure that Tim can truly make the most of each day.  Asking for help is a very hard thing to do.  Prayers, positive thoughts, love, humor... those, themselves, are no small things.  We are grateful for every day, and will continue to take one day at a time, making the most of each and every one.  Any encouraging thing from any corner is always appreciated!   I have included a link, below, where anyone can donate to Tim's Medical Fund through PayPal.  We would also appreciate it if people would share this blog...

Thank you for reading!

Dawn

 Any donations to Tim's Medical Fund can be made through PayPal. 
Please click here to donate through Paypal

Please contact me for alternate ways, if uncomfortable with PayPal.

PS:  I will be posting more about Tim's Multiple Myeloma journey... and will post updates as the roller coaster continues.

This is us on our Colorado trip.... prior to Multiple Myeloma.

We all have them...

Everyone has a Story. Our lives are made up of little stories, chapters, which, put together, make us who we are... make up our constantly unfolding individual Story.

Most of our stories overlap with those of others... each impacting the other in ways ranging from completely unnoticeable to life changing. Some of our stories are private, held deeply within ourselves... sometimes a fear, a challenge, a belief, a memory, a feeling... something we don't share, but which still impacts how we move through our other stories.

Just as each of us differs in many ways, so do our stories. Some of us may be in similar places or situations... but what led us there can vary greatly. Our Story is our own... there is no one Story that is just like another.

All Stories are important and valid... every single one.

When I'm asked to describe myself, I can't help but stumble. General answers are usually all that is expected to a question like that... but in the past number of years, my mind continues after my mouth stops giving the 'expected' answers.

Who am I? I am the accumulation of experiences and my reactions to them, what I've learned from them... of choices and where they have led me... of emotions, judgments, and priorities that impact my choices... and more.

I am a daughter, a mother, a sister, a niece, an aunt, a friend, a lover, a complete stranger...
I am a survivor of a variety of abuses...
I am an artist, a student, a seeker, a (sometimes accidental) teacher...
I have challenges and triumphs...
I am a veteran...
I am less than I will be a year from now... and more than I ever dreamed possible...

Some of the things that have impacted my life, my views, my path, are... great teachers, humor, heartache, learning to survive and the coping skills that come along with that, adoption, love, loss... and so much more.

It's easy to forget, or simply not realize, that we even have a Story... and that others have theirs. We all have 'stuff'. What might seem trivial to one is extremely important and meaningful to another. My 'stuff', my stories, might mean nothing to most... but they are just as critical a part of who I am as another person's stories are to them. I might not understand another person's stories... but I do understand that they are just as important and valid to them as mine are to me.

I've come to realize, though, that we all have far more in common than we might think.

The advancements in technology have brought us closer to together... and kept us more distant at the same time.

Everyone's Story... or stories from within their Story... are valid, important, and so very worth sharing. I'd like to be a part of that sharing...

... So...

I'm extending an invitation... to everyone... to share any part of your Story with me. I would then like to, with individual permission, put those stories together and publish them. Anyone sharing their story with me would retain rights to those stories... and would be asked for input, as well, on the other 'what to do with the completed work' questions. I have never done this before... so it is new to me... and there is much I don't know yet.

What I do know is that the sharing of Stories has such great potential to make a difference... not only for others... but for ourselves, as well.

I am always open to comments, suggestions, criticisms...

If you would be interested, please let me know. Feel free to email me at LS_DAWNB@yahoo.com anytime.

How this evolves will depend on how many would like to be involved. It will unfold as it progresses... and I hope you will join in.

Thank you for reading,
Dawn