• About MM
  • The Fight
  • Lifestyle
  • Nutrition
  • Recipes

The Fight Against Smoldering Myeloma

~ supporting healthy nutrition & lifestyle

The Fight Against Smoldering Myeloma

Tag Archives: #cancer

Light at the End of the Tunnel

06 Thursday Jul 2017

Posted by mmvsmm in The Fight

≈ Leave a comment

Tags

#cancer, #inspiration, #myeloma, #smolderingmyeloma, #tcell

Life has certainly been a whirlwind the past couple of months and I’m looking forward to it slowing down a bit in the next couple of weeks before we take our big trip to Ireland at the end of the month! Over the past two months we’ve been dealing with getting to the bottom of my health and trying to improve the health of our special needs pooch, all while I’ve struggled with a very strained voice. Our weeks have been one medical appointment after another including four trips to NYC in just five months. But there’s been some promising news at the end of it all, so let’s recap where we are at:

Don’t Speak

No, you just won’t know what I’m saying because starting tomorrow I legitimately am not allowed to use my voice for two weeks. Many of you will be amused by this as it’s not exactly a secret that conversing is one of my favorite past times! Tomorrow morning I’m heading to our local hospital for vocal cord surgery. After a camera sent down my nasal passages confirmed a polyp on my vocal cords and a second look confirmed that it wasn’t improving weeks later, it was determined that I either need to accept the cracking, scratchy voice I’ve had for three months as my own, or have the polyp removed. There’s no guarantee that my voice will go back to 100% but leaving it as it without trying to improve it just wasn’t an option, it’s been quite frustrating. I’ll be put under anesthesia and a CO2 laser will be used to zap the polyp. Then starts the no talking for two weeks, and hopefully I will have improved vocal range by the time we pop across the ocean. In the meantime the plan is to go everywhere with pen and notepad in hand, so old school!

No Pain, No Gain

Let’s cut to the chase. Bone marrow biopsies are painful, I mean ungodly painful! Occasionally I’ve had people say that it wasn’t pleasant but wasn’t as bad as they expected. I seriously need to get the names of whatever drug concoction they were prescribed for future reference because the Valium and Percocet mixture I had was not cutting it. This was my third biopsy and my first in NYC. My first biopsy was in March 2015 in Ithaca and my second was in May 2015 in Buffalo. Truth be told I’m still a tiny bit sore from this most recent procedure site and I cringe at the thought of those Lidocaine needles tapping my hip bone before the bigger guns came out. Two injections sites to extract marrow and a third site to extract a bone sample. Three pulls to get each marrow sample out and ten cranks to pull out the bone. I was so fixated on the counting because I just wanted the nurse to stop, in fact I begged her to stop! My husband was a trooper for sitting right there through all my screaming, how awful to see someone you love be put through so much pain. After it was over all I could do for ten minutes was to sit and sob. We drove four hours back home to Ithaca that night. It may or may not be legal to fully recline the passenger seat and ride face down on your belly but it was the only way I could remotely get comfy. The next two weeks trying to sleep, sit or sometimes even move were brutal. I truly hope it’s a long time before I have to go through that again. The results were back in within a few weeks but we had to wait six weeks total to be able to get back to the city and see both my specialists…

I’m Sorry, Can You Repeat That?

Those of you who had to deal with getting a diagnosis or medical test results can likely relate that at times you are sitting there with a doctor rattle off a laundry list of information, and sometimes it’s more like sitting in front of the TV as a kid with that Micro Machines guy saying 1,800 words a minute in those commercials. It’s a lot of information and a lot of new big words, that rarely the doctor stops to elaborate on unless you ask. Again, my husband is a rock star when it comes to care giving. Always prepared with either the notepad on his phone or his laptop, typing the words as they come out of the doctor’s mouth. I highly recommend having someone with you that can help advocate for you in these kinds of situations.

Without further ado, here are the results:

  • There is no sign of a Myelodysplastic syndrome (aka preleukemia) which was the concern with the evidence of a T-cell population in my blood. That’s not to say the T-cells won’t ever turn into one, but for now they are just hanging out (who invited those guys anyway?!).
  • The T-cells are causing the low white blood cell and neutrophil counts that I shouldn’t be having yet. There are medications that could help lower the T-cells and increase the white blood cells and neutrophils but there are side effects. Since I haven’t been having infections, the doctor prefers to monitor my blood every two months with no medication, so long as I stay healthy.
  • The plasma cells taking over my bone marrow are around 20-30%. Previously they were 25% in March 2015, and 10% in May 2015. Normal ranges are 1-5%, but these latest results indicate no real change in the plasma, thus the Myeloma truly is currently stable.
  • With the introduction of the new (CAR) T-Cell trial as well as several other new drugs on the market there is new hope on the horizon for Myeloma. We’ve been told that by the time I progress, that these news options could be a potential cure for me. Yes I said CURE, a word never yet used in Myeloma except for when saying there wasn’t one.
  • Why not do the trial now? Good question. One, because it’s not available to people in the smoldering state of Myeloma. In fact it’s really only available to people who have tried everything else first. But the hope is that will all change by the time I need it. And it’s possible to do this trial successfully without chemo AND without a stem cell transplant. Huzzah!
  • Kids. A personal and private topic, yes. But something we were formerly told two years would not be in my best interest to physically carry. Now we’ve been told it’s an option, yet in a very narrow time frame, as in before I’m 35 (I’m now 33.5). For those unable to contain their excitement on this topic, just hold onto those britches, we have much to discuss before we decide if it’s a path we want to take.

Life really is a roller coaster, especially at times when you are just longing for some flat, solid ground. As we embark on our official one year of marriage mark our outlook is much brighter and we are feeling blessed. So lucky to have the experience of traveling to Ireland, to see our family there. So fortunate for the support of family and friends near and far. And in love with our life together in Ithaca with two amazing fur babies and the best friends we could ever ask for.

 

Pocket full of sunshine

09 Thursday Mar 2017

Posted by mmvsmm in The Fight

≈ Leave a comment

Tags

#advocate, #bioposy, #bloodcancer, #bonemarrow, #cancer, #cancerawareness, #cancersucks, #chronic, #chronicillness, #determination, #fuckcancer, #health, #inspiration, #motivation, #mtsinai, #multiplemyeloma, #myeloma, #procedure, #waitinggame

IMG_7649[4]One of the most frustrating aspects to dealing with a chronic illness is not having a very clear picture of what is going on with your body. Thoughts tend to filter through your head such as:

  • What does this all even mean?
  • What will the rest of my life look like?
  • How long will I survive?

For me, personally, wondering how long I have until I start treatment, or will I have to start treatment?

With chronic illness you are sometimes lucky enough to have these pockets of time when you can worry a little less and enjoy your life a little more. I have been lucky to experience some of these pockets, where things seem relatively normal and I can tune out the invasive testing and the uncertainty of progression. So lucky. Next month marks two years since my Smoldering Myeloma diagnosis, quite hard to believe! But the most recent pocket I was enjoying slightly closed after my last trip to NYC.

You may recall one of my last posts where my specialists at Mt. Sinai were trying to determine if I have a Myelodysplastic syndrome. The good news is I do not! But in a twist of events, one of the two blood tests to check for T-cell populations came back positive, which could be what’s contributing to my low white blood cells. We won’t know what this means until my next bone marrow biopsy, though so far I do know that the presence T-cell populations can sometimes indicate signs of a T-cell lymphoma. Yikes!

Both specialists that I see in the city were okay with keeping my biopsy scheduled for mid-June due to the lack on infections that I’ve experienced. After thinking it over the past month, I called and had the procedure moved up to May 5th. Sure I cringe at the thought of feeling like a human wine bottle being uncorked when that giant needle extracts both marrow and bone from my back end. The fact of the matter is the desire to have a clearer picture was just stronger than shying away from a biopsy for as long as possible.

So here we are, another waiting game, which will extend about two weeks past the procedure. One of the specialists will be checking to see how much plasma is currently taking over my marrow, and the other will be digging deeper into this unwelcome colony of T-cells. Hopefully the latter is nothing, but I am doing everything I can to be happy, healthy and trying to keep open that pocket I had created and filling it with sunshine in the meantime.

The Waiting Game

15 Sunday Jan 2017

Posted by mmvsmm in The Fight

≈ 1 Comment

Tags

#bloodcancer, #cancer, #cancersucks, #fuckcancer, #mtsinai, #multiplemyeloma, #myeloma, #waitinggame

Last week I turned 33 years old – an occasion that was marked by celebrations in both Ithaca and NYC. In the events leading up to and on my birthday, I was surrounded by amazing people and had wonderful times. My mood was great! Here I was another year older and still no required treatment for Myeloma. I was scheduled for my sixth month check in at Mt. Sinai two days after my birthday. When traveling such great distances to spend half of a day getting labs, waiting to be seen, and meeting with my doctor regarding unpleasant topics such as cancer, I try to always build something fun into the trip.

For this trip to NYC not only did J come along, but we planned to make it a weekend long post-birthday trip with another couple that we have been so fortunate to have in our lives. I was anxious to get the usual, “Myeloma is stable, immunity is still low but you can live a normal life this way under careful monitoring” response I usually receive, and we would be then be free to paint the town red. Except my appointment did not go quite as planned…

We spent five and a half hours at Mt. Sinai on Friday. We waited over an hour to get called back for labs, followed by another hour before meeting with the nurse practitioner, who was extremely helpful in explaining the status of my Myeloma. During this time we learned that the disease is still stable, but some of my labs had come back from earlier in the day and there was more cause for concern from my results. My neutrophils are the worst they have been to date. Currently they sit at 200 when normal counts are generally over 1,500. Throughout my time after diagnosis, this level has run relatively low, with some peaks here and there. As neutrophils are a type of white blood cell that aids the body in fighting off infections, there is always a scare that I could get sick and wind up in the hospital for something as common as the flu. The thought is that my body would be unable to go up against the illness. I have been lucky enough to have not had a major illnesses since 2013, and I believe my diet and lifestyle has helped me to achieve that.

But why are these neutrophil counts so low? It is not typical to see numbers in this range at the stage my cancer is in. So my specialist wanted to dig deeper. A doctor who specializes in Myelodysplastic syndromes (MDS, a form of disease that has a possibility of becoming Acute myeloid leukemia) was called over to the room we were in. More labs were drawn for a “fishing expedition” to see if there is anything to this new MDS theory. And now begins the waiting game. It could be up to three weeks before we find out if I in fact could have an additional disease on top of the Smoldering Myeloma. The Myeloma diagnosis is not in doubt. The presence of plasma in my bone marrow and the abnormal protein in my blood solidify that. The good news is it has not yet affected my calcium levels, renal function, or my bones, and I am not anemic. These four elements can show progression of the disease.

At this point I was told that these additional lab tests were just precautionary, that the tests are meant to rule other things out while I am still relatively healthy (rather than to find out the answers at a potentially later stage). Of course the hope is that the tests will come back negative, but my thoughts keep going back to February of 2015, when I had my first abnormal results from blood tests. I was referred to a Hemotologist/Oncologist and advised to not let the Oncologist part scare me, it was just to rule out bone marrow abnormalities they said. But, it turned out to be cancer.

A negative test result would be such a blessing as I cannot fathom having two diseases at the same time. But if I do not in fact have Myelodysplastic syndrome, then what on earth is going on with my body?! That first hour after leaving my specialist’s office I shut down, not really wanting to talk to anyone. I then slept for over an hour at our hotel, totally whipped from the day. But when I woke, I was determined to make the best of an awful day and set out to enjoy our weekend. We ended up having such a fantastic time in the city with the best company we could have asked for! And I am so fortunate to be under the care of top specialists who continually work to dig further to ensure that no stone is left unturned.

nyc

Enter your email address to follow this blog and receive notifications of new posts by email.

Follow me on Facebook!

Follow me on Facebook!

Instagram

No Instagram images were found.

Recent Posts

  • Light at the End of the Tunnel
  • Pocket full of sunshine
  • Instant Pot Savory Vegetable Soup
  • #Sobruary
  • Recipe: Tuscan Chicken Skillet

Categories

  • Lifestyle
  • Nutrition
  • Recipes
  • The Fight

Archives

  • July 2017
  • March 2017
  • February 2017
  • January 2017
  • December 2016
  • November 2016
  • October 2016
  • May 2016
  • April 2016
  • February 2016
  • January 2016

Recent Comments

mmvsmm on Recipe: Sweet Potato Gnocchi T…
Rose Martine on Recipe: Sweet Potato Gnocchi T…
Pocket full of sunsh… on The Waiting Game
Carolyn Ambrose on Instant Pot Savory Vegetable…
Recipe: Sweet Potato… on Recipe: Zucchini Noodles with…

Follow me on Facebook!

Follow me on Facebook!
Follow The Fight Against Smoldering Myeloma on WordPress.com

Blog at WordPress.com.

Cancel

 
Loading Comments...
Comment
    ×