Friday labs

Today is supposed to be close to 100 degrees in NYC.  Always my favorite weather….NOT!  Of course, I have to go into the city for velcade/dex and labs.  I really can’t complain too much.  I drive an air conditioned car, walk a couple of blocks to the doctor’s office and then walk back and drive back home.  The doctor’s office is very cool.  I remember the old days when not every place was air conditioned.  We used to hang out at the movies or a shopping mall on days like today.   Seems so long ago.

Hoping the traffic in and out of NYC isn’t too bad.  I think a lot of people are on vacation and/or have taken Friday off, so it shouldn’t be too bad.  Aside from the bad drivers, taxis, and accidents…….

Work is slow, too.  It’s the season.  This was not a great week in terms of money.  My glasses broke, and I had to spend nearly $300 to replace them.  Then, my daughter’s phone was stolen right out of her hands in front of our building.  Since my phone has had a cracked screen for awhile, and I had a free upgrade, I decided to replace my phone too.  Somehow it still cost me $380!  But, not before I had to spend another $189 to pay off the balance on the stolen phone.  So, it was an expensive week.  There are worse things, but it’s just annoying to go through almost $1,000 on bullshit things.

My daughter was not hurt, thankfully, and the police came right away after I called 911.  They were very nice and responsive, although recovering the phone is probably out of the question.

Let’s hope my labs are OK.  It’s been a month since they were checked, and that always makes me nervous.  Usually, my doc checks them every two weeks,  (which I know is a lot), but I am used to it.  For some reason he didn’t run the full myeloma panel two weeks ago, so it has been four weeks.  Another thing I shouldn’t complain about.  My doc is really good about being on top of things.  He tells me he checks every other myeloma patient once every six weeks, so I am still ahead of schedule.  Hopefully, none worse for the wear.  He knows I am really anxious, so he checks me every two weeks.  Not sure if it helps.  I am in a constant state of waiting for lab results.  By the time I get all my labs, it’s almost time for another round, so I only have a couple of days where I don’t worry too much.  I guess I cannot win either way.

Weekend looks quiet.  Maybe the movies.  Too hot to be outside!

 

 

 

 

 

 

A warm Saturday

I have never been one for the heat.  This week, (and, according to the weather reports),  the coming week, will be in the upper 80’s to 90’s.   Not my favorite weather.  I also have to go into Manhattan for my treatment and labs on Friday.  I keep saying that I will take the subway and avoid driving in with the traffic and expense, but somehow, treatment day rolls around, and I jump in the car.  The City is starting to really clear out for the summer, and hopefully, the traffic will be less.  This is my third year of treatment;  It’s funny that the first two I didn’t seem to mind the traffic or the parking or the bother.  This year, it bothers me.  Perhaps it is because I am feeling more like my normal self.  The previous two years, between the myeloma and the treatments, I was really preoccupied with how I felt physically.  Now, I suppose, I can focus on other things.  That’s not to say myeloma isn’t constantly on my mind, but I am not feeling as sick as I was.  When I look back, I find it hard to believe that I worked through induction.  Not full time, but most days, say 10-4 ish.  I cooked dinner almost every night for my family.  Even on those nights i could barely eat myself.  I didn’t knock myself out with housework, but I still did the laundry, changed the bedding, kept the kitchen clean, and shopped for groceries, (sometimes).  Groceries I found hard.  Carrying things caused me fatigue and sometimes pain.  My muscles were very weak, and I was very thin.   I have gained about 10 -12 pounds back, and although most of it appears to be fat, I still feel stronger.

I would like to work out more.  I have tried on a few occasions, and I was able to go a few weeks in succession, and then I hurt my back….then I got the flu….then bronchitis…..it is frustrating.  I  was really devoted to working out in pre-myeloma days.  I do so love to get a good sweat going….I know that after all I have been through I will probably not ever be able to work out at the same level I did.  And, of course, I am 61 now.  That in itself poses some limitations.  But, I will keep trying.  My stamina in general is much better, but I am a flab magnet at this point.  I sit too much.  Now I work from home, so I don’t necessarily even get that little bit of walking around you get from going back and forth to work.  I should just pretend to go to work….walk to the car….drive around…..walk back.

Today was a pretty good day.  I do have a small cold that I caught from my son.  I catch everything!  But, luckily it is just a runny nose.  No fever, no swollen glands, no sore throat.  But, I was tired this morning when I woke up.  Perhaps it was the movie I watched between 2 and 4 am!!!!  I don’t sleep all that well, even with the addition of ativan.

So, I had a somewhat productive day.  Ran some errands, shopped for some new t-shirts at Kohl’s.  Now we are getting some takeout from Bareburger.  Not exciting, but normal.  Tomorrow we are invited to a barbecue at a friends house.  I will bring salad, wine and dessert.  Should be fun. I am looking forward to it.  I hope the traffic back and forth to Long  Island won’t be too bad.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

July 1

A summer Friday.  July 4th weekend, 2016.  My son is visiting Miami with friends.  I am happy that he is out and about, doing things on his own.  Since he still lives at home, it is important that he do “grown up” things. He works full time, has a good job in finance, which he doesn’t love, but makes the best of it, and it plotting his next move.  With a degree in statistics, and a good way with people, and a really great attitude about learning new things and working with others, he is an unusual 23 year old.  He is my go-to person. An “old head,” as my Mother used to say.

Amanda, my 25 year old daughter is also still living at home.  I wonder if they would be living on their own if I had not become ill with myeloma.  I think they are here, at least partially to keep an eye on me.  I guess maybe we raised them right?  I really don’t want to hold them back.  I told them both, regardless of what happens to me, their lives will go on,and I want them to live fully.  Easier said than done. Amanda is still in school, so she would probably be home, anyway.

Did not get a lot done today, some errands, housecleaning, and a little bit of work.  I feel antsy.  I guess that’s a good thing!  It means that I have enough energy to feel like doing more than I am doing!  We don’t have too much planned, maybe spend some time on Long Island tomorrow and breakfast with a friend on Sunday.  Will go to the airport on Monday to pick my son up from his trip.  Normal stuff.  Normal is good.

Have a good 4th everyone!  Do something you enjoy….have a barbecue, visit friends, go  swimming!

 

 

 

 

 

 

 

 

 

 

 

 

 

A fabulous Friday!

Today has been a really good day.  Nothing spectacular has actually happened, but the weather is gorgeous, I feel well, and I was able to work most of the day and actually accomplish things!  In other words, a “normal” day, which is always great in myeloma world, the alternate universe where anything can happen.

I took my daughter to a doctor’s appointment, and we stopped for yogurt and strolled around one of the  nicer towns on Long Island.  Everything in these shops is uber expensive, but it’s nice to see how the other half lives.  For probably the first time in my life, I was not envious of this expensive way of life, including extravagant homes and beautiful gardens.  Honestly some of these people have larger and nicer garages than my entire apartment!  But, despite their possessions, who really knows what goes on behind these carefully constructed walls.  They could be unhappy, or worse, suffer from ill health or have all kinds of problems with their families.  I’d rather live in a small happy place and be surrounded with health and love.  Maybe the myeloma has taught me that.  I used to be more materialistic, I think, before my illness.  Don’t get me wrong.  I like nice things, but I have found that after awhile, you just become a slave to them. Preserving those things becomes all too important. The more you have, the more you have to take care of.  I guess especially at my age, (61), I realize that there are many things I will not have in my lifetime.  And that’s OK.

We have an engagement party to attend in Connecticut tomorrow.  Not my favorite people,  but I have few relatives within driving distance at this point in my life, so we will attend.  They are pretentious people.  Very “correct.”  cousins.  The last time I saw this couple, the wife, who is married to my first cousin, said something like this…..”When we moved to Connecticut, I made a conscious attempt not to use any Yiddish phrases.”  OK, so I guess you don’t want people to know you are Jewish, because this doesn’t “go” in Connecticut.  Not to be catty, (but why not!),  this woman has said a string of stupid things over the 40 or so years I have known her.  What my cousin, who is super intelligent, good looking, and just a good guy, (he used to be better, but now he is more like his wife), ever saw in this woman, I will never know.  She leaves a lot to be desired in the brains department, plus she says judgmental and stupid things on a regular basis, and she is just average looking, and was so when she was young.  Nothing special…. Oh well, there’s no accounting for taste!  I think my cousin wanted to marry someone who would be no competition for him whatsoever. She certainly fit the bill, but the stupid remarks, I could definitely do without.

Their second son is getting engaged.  Apparently, he has had a succession of girlfriends, but according to my cousin, this is what he said about the young lady…. she is “the best of the lot.”  Imagine, being described this way.  As in, well, she’s not the runt of the litter, but, she’ll do, I suppose…….I hope this young woman is prepared for what may ensue.  My cousin’s wife  also said that it will be a relatively “small” wedding.  I asked about how many people were expected….they said, oh about 170 or 180!  In my book, that’s a pretty substantial wedding.  My cousin’s wife also said that the young woman’s family is not of “means….but they are nice people.”  Great…..how condescending can you be???

So, tomorrow should be interesting….another day of seeing how the other half lives.  I hope some stupid things are said so it will be entertaining at least.  Usually when I come home from one of these get togethers with these pretentious people, I have some fuel for the fodder in terms of dislike.  My husband and kids always say, so “why do you go if they bother you so much?”  The answer is I feel somewhat of an obligation since they are my first cousins, and they are within driving distance.  That, and the food is usually good…….

Have a great weekend everyone, and Happy Father’s day to all you Dads out there.  Wherever you are, my Dad, Aaron Goldstein….I miss you everyday.  The last 47 years have flown by, and there is no day that you don’t cross my mind.  Wish you were here, even though you would be 97.  I would take it. Just one more day with you.

 

 

 

 

 

 

 

dex Saturday

Yesterday I received my usual dose of velcade and 12 mgs dex for maintenance.  I elected to skip my last treatment due to the bronchitis two weeks ago.  I felt I needed a break then. My doc was fine with it.  He is very flexible and understanding.  I also received my first dose of Zometa.  I was warned that I might be feverish and achy today, but so far, I’m good.  I think I only received 3 mgs, which is a smaller dose than usual, ( think), perhaps because I am a small person, or maybe because I do have some kidney damage from the myeloma so my doc wanted to see how I would do.  Not sure.  Doesn’t matter….as long as I feel OK, I’m good with it!

Didn’t sleep too well last night, but that is certainly nothing new!  Partly due to the dex, the anxiety with labs being taken, and my son was out late last night so I waited up with one eye open and one eye closed.  He is 23,and very responsible, but I think as long as they live at home, you always wait for that key in the door.  He is great at keeping in touch with me.  Answers my texts, updates me on where he is.  You cannot ask for anything more…..good kid.

Drove into Manhattan yesterday to see the doctor.  I keep saying I will take the subway, but when push comes to shove, I always manage to jump into the car anyway.  Traffic was abysmal going in.  There was a multi car accident on the 59th street bridge, which backed everything up onto Northern Blvd, which is where I was.  I try to look for street parking near the doctor’s office, which is in Manhattan. It’s  a rare bird, but sometimes I get lucky. Since I got there late, I pulled into a lot.  $25.  Oh well, I am trying not to sweat the small stuff.

It was a beautiful day yesterday.  Warm, but low humidity.  I did see a dead rat on the street.  Kinda ruined the moment as I was walking along, but what can you do…..welcome to NYC!  Even though rats are a scourge, it’s still a living thing.  We are all entitled to life, even animals.  I’m sure this little guy was poisoned. Our family pets are guinea pigs.  Rats are in the same family, maybe that’s why it hurt me to see this little guy dead on the street.  But, they do carry diseases, unlike our very well cared for piggies.

I feel energetic today, probably from the dex, but I don’t want to push myself too much in case I get side effects from the Zometa later.  So, I will putter around the house.  I was supposed to interview someone this morning on Skype, (I am a recruiter, and some people cannot meet me in person because they are working), but my skype account was wonky and wouldn’t let me log in.  I called the candidate and asked if we could postpone our meeting by 30 minutes.  She said fine, but then was unavailable when the 30 minutes elapsed.  She now wants to do facetime on the phone, which I really don’t like.  The screen is too small, and people tend to speak to you on the run while they are doing something else. Not a good interview technique. I am hoping she can skype with me sometime later or tomorrow.  People can be very uncooperative.  With all the ways we have now of communicating, I think actual communications are worse.  I suppose it is because people feel overwhelmed by emails, texts, phone calls, and all they ways they are assaulted by the media.  It’s counter intuitive….with all these ways of reaching out to people, it is increasingly more difficult to actually connect with people.  Everyone hides, it seems.

Waiting for my labs is always stress inducing.  My doc does a complete panel every two weeks, believe it or not, but I skipped my treatment and labs two weeks ago because of the bronchitis.  So, there is extra worry….what if things have changed in the last month?  Will the M-protein reappear?  Will my light chains be abnormal?  I go thru this all of the time.  I keep thinking I will get used to the suspense, but it never happens, every two weeks, or in this case a month, I sweat bullets……Par for the course, I suppose.  I should enjoy this time.  I am in complete remission, (as of a month ago), and this is probably the best I will feel.  Who knows when the myeloma will relapse or become refractory?  No one.  I am already investigating my next line of treatment.  I think I would want to try Daratumumab. (darzalex).  This is supposed to have excellent single agent activity.  Depending upon when I relapse, I suppose I would be a candidate for another transplant.  But I would not be looking forward to that.  The only reason I would do that is if none of the meds put me back into CR, or if there was a cure that involved a transplant first, followed by the “cure.”  Pipe dream, cure.  Not there yet.

So, here’s to the weekend…..Enjoy yours!

 

 

 

 

A sunny Monday

So, I wake up this morning raring to go.  My two work appointments cancel!  Drat!  I should know from my years in business, that Mondays can be unpredictable.  I’m trying to make the most of my work life now.  Approaching a time in my life, (61), where I am contemplating when to retire. But the truth is that I really enjoy my work, and the extra money, (when it comes — I am commissioned based, comes in handy). I have a home office, so working is easy, but the other side of it is that it is ALWAYS there. I roll out of bed, and there it is….WORK, That’s the nature of work, these days, people work all the time.  The internet!  The cell phone!

It is a beautiful day here in NY.  My daughter is home today, so I think I will take a lunch break with her and we will have a bite on an outdoor dock nearby.  She and I will enjoy the weather for a bit.

Later this week my husband has to have an angiogram, so I will miss two days of being able to work.  He was there for me, and I am there for him.  The doctors are saying he had a small heart attack.  He has had heart disease for  at least 20 years.  It runs in his family.  He takes his meds, but is always stressed out and doesn’t sleep well.  This was even before I developed myeloma two years ago.  The doctor didn’t even want to do the angiogram, but I insisted.  I mean if he had a heart attack, shouldn’t we confirm it, and visualize the damage and check out the other arteries in his heart for blockages?  DUH!!!  He had stents 21 years ago, so we know damn well he has cardiovascular disease, and if he had a heart attack, well then, maybe his disease is not being managed well?  You think???  I want him to change doctors.  This guy is not on top of things the way he should be. I really don’t tolerate doctors who make “mistakes,” and I have seen plenty of them.  I know they are human and all, but some of them don’t seem to have good common sense.  I have learned a lot about the medical profession, I think, through my experiences with myeloma.  There are doctors who stick to strict protocols, and don’t seem to be able to see each patient as an individual.  But medicine is part science, part art.  It’s the art part that differentiates a “good enough” doctor from an outstanding one.

2 years

It’s about 2 years since my diagnosis in May, 2014.  During this time, I have had induction, a transplant in October, 2014, and maintenance, first with low dose Rev (5 mgs, 21 day cycle, bi-monthly velcade sub q and 12 mgs. dex).  Dropped the Rev in September, 2015, due to side effects, (muscle inflammation).  Onc was not willing to admit it was the rev, but after I dropped it, I felt a lot better.  I guess I had to do my own science experiment!  Actually my onc. was content to take me off all maintenance and just watch and wait, since I was in sCR.  Call me a glutton for punishment, but I felt that I needed to have some type of maintenance therapy, based upon my chromosomal abnormality at diagnosis — addition of chromosome 1, which is considered high risk by many MM specialists.

So far, so good.  For me, the challenges are as much mental as physical.  I still find myself wondering, why me?  How did this happen to ME?  (Even though I believe there is a genetic component since my Dad died of MM in 1969 at age 50.)  I worry about my kids.  What did I pass on to them?

There are days, however, when I walk into a store or restaurant, and someone smiles, or the colors in the room are suddenly beautiful, and I realize that life is good.  It won’t last forever, and that’s true for everyone, but all of a sudden I am awash in the beauty of it all.  And then there are other days……where I cry  for no reason, (or rather, the same old reason),  and I have a lot of difficulty  concentrating on anything substantial other than my feelings at the moment.

I am lucky to have a supportive family and great friends.  Sometimes I wonder how they put up with me.  I was always a person who spoke up for herself, but now I tend not to mince words at all.  I generally cut to the chase.  That is actually a relief.  No pretense.  I think I am more “real” now than I have ever been, and you know, it’s pretty liberating.  I also try to be more kind.  Honest, but more compassionate.  I now understand what it is like to be ill or infirm in some way that affects your ability to do everyday things.  So, I hold the door, I carry a bag for an older or disabled person, or I offer someone a ride if they are having trouble walking.  Little things, but in the past, to a certain extent people who couldn’t “keep up” were kind of invisible to me, (sad to say).  I try to pay attention now.  And I have also learned to treat people they way they treat me.  Give them the benefit of the doubt initially, but once they show who they are, I respond accordingly.  I have experienced some great acts of kindness from total strangers, and the exact opposite from people whom I thought were my friends. You live and learn.  People can be surprising.

Today is a slow Sunday.  It is rainy and humid here in NYC.  Did a few things around the house this morning, but don’t feel terribly motivated to do much more.  One problem I have is that I tend to spend  money to try make myself feel better.  I have to work on that.  I am still working, but I am a commissioned based salesperson, so my earnings can be uneven, to say the least.  I have a home based office, so I don’t REALLY need to go out everyday, however, I feel that it is better for my mental state if I do get out.  I have to find activities other than shopping for my excursions.  I always get into trouble as soon as I leave the house!  Old problem, now a little worse because I feel “entitled” to treat myself.  Have to develop other ways to treat myself.  I used to be a big exerciser before MM.  I have begun to exercise a few times, with varied success.  I seem to injure myself much more easily than I used to, even though I try to be very careful.  I have osteoperosis, but no broken bones and no tumors, (that I know of).  A couple of small lytic lesions.  I do have arthritis.  I know that the drugs, (especially the dex), have weakened my muscles, and I am a 61 year old, small woman, so ability to develop muscle mass is probably limited.  I am also just getting over the flu followed by asthmatic bronchitis, so I have been off exercise for about 6 weeks.  I will begin again next week.  I did always love to work out.   Just cannot go at it the way I used to.  Have to pace myself and listen to my body.

Daughter just got home from work.  Amanda.  I love her so. Michael, my son, too.  Best two things I ever did!

 

 

 

 

 

 

 

 

The Beginning…….

My story starts a long time ago, in 1966.  It was the year my Father was diagnosed with MM at age 47.
At that time, I don’t even think oncology as a sub-specialty of medicine even existed. My Dad was treated by a hematologist, who kept him alive for 3 years, which was pretty good at the time.

Fast forward to November 2013.  I began to have pain in my ribs, sternum and shoulders.  An orthopedist diagnosed me with costochondritis and bursitis, and sent me to physical therapy, which helped a little.  I’m sure this sounds familiar to many of you MMer’s.  By February, 2014, I noticed quite a bit of froth in my urine.  Dr. Google told me I was in trouble.  It took me about another month to convince my pmp to do the bloodwork and urine analysis.  She was convinced I was imagining things because of my Dad.  I wish.

I have IGA Kappa light chain, so I never had much of an m-spike, however, my kappa light chains were 12,000 at diagnosis.  Fortunately, I found a wonderful oncologist who began treatment right away, even before getting the results of my BMB.  I credit him with preserving kidney function, although they remain slightly compromised, with a creatinine that fluctuates between 1.2 and 1.3.

So far, I feel fairly fortunate.  I responded well to induction therapy of RVD and completed an SCT in October.  Had a lot of trouble with nausea which continued into the third month.  I have not had the full 100 day workup as of yet because I contracted the RSV virus last week, which has delayed my BMB.  My Pet/CT was clean, however, so I feel hopeful that thngs have gone well.

I think the mental part of this is equally as hard as the physical. There are days I am in a complete and utter fog.  Unable to really focus on anything but the MM and what the trajectory of the disease will be for me. I was able to work pretty much everyday through induction, anxious to get to the SCT.  Once I had the SCT and got through the first couple of months, it seems the goal posts disappeared.  Now I don’t know what to focus on.  I still don’t know if the SCT was a success.  I went into it with a clean Pet/Ct and bone marrow, so the bar is high.  Anything less than a CR will be a relapse in my book, and I am petrified. So far,all of my bloodwork has been normal, except I am still anemic.  Kappa and Lambda light chains are in the 6 – 8 range.  Prior to transplant, they were also in the normal range, but a little higher, with the ratio being high normal.   I have the 1Q21 addition, so I will have to be on maintenance chemo, probably a lower dose RVD,

My family and friends have been terrific supports for me, however, it is sometimes hard for me to express my feelings to them.  I feel that no one but a fellow MM’er can really understand what it feels like to be in “our” shoes, even if things are going well.  I am hoping that blogging will help to alleviate the constant worry.  I have not yet learned to live in the moment, and I have not yet figured out what to do with the rest of my life.

Thanks for reading this.  I will try to make my blog more interesting next time.  I just wanted to get all the introductory stuff out there.