Another Face..... Of Multiple Myeloma

Lila and I say Merry Christmas! Lila grants a smile :) I'm so happy to be given another Christmas as a survivor of myeloma! I always feel a bit uneasy every holiday, as I think of my loved ones no longer here, and those true and dear to my heart that continue to encourage me on this journey. I also get a bit tense in wondering what the New Year brings. I got wonderful news a few weeks back.... my PetMRI and Bone Marrow results came back positive. My disease is still at the stable status. The look on  my husband's face eased my heart as well, as I know he is going through with those thoughts in his head of grasping what happens when and if this disease progresses at a rate we've had the fortune of not coming close with. I don't see my Onc until 6 months, my bone marrow #s from 5 years ago went up only by 3. I'm so thankful this Christmas and can only say that I hope God continues to be my 2nd legs on this hazy journey. I wish you my fellow MM's a won...

Today is Sunday November 10, 2013.... It's a breezy cold Sunday and the weekend just as so many is going by quickly. This month I celebrated another birthday and thankful for that, but bittersweet as those once in my life are no longer here in the physical form to help me celebrate.... I'm watching the movie The Bucket list with actors Jack Nicolson and Morgan Freeman. I absolutely love this movie and it's so fitting for all ages. The bottom line is we go off in life trying to achieve the dream we concoct that will make us happy, whether this is marriage, children, education, career, and being famous, or what have you, but when a doctor enters your room and approaches you with those strange and foreign words You Have Cancer ... those life achievements seem so bittersweet, as many of us feel there's just so many more things left to do. The concept of writing that list of things to aspire to achieve before you die is a self fulfillment and a gesture to make your las...

Okay readers let’s turn up the fire on discussion…. So while eating my lunch from home- spaghetti and turkey meatballs, I popped a chocolate known as Viactiv Calcium Chews-500mg. Viactiv is a small chocolate supplement for calcium consumption. The popular television commercials had stated just 2 will give you your daily calcium needs, and as myeloma patients (or I hope most of you are aware) we need that Vitamin D and calcium to assist in maintaining stronger bones, as this is one of the dire consequences of myeloma. On my last MRI found small hints of lesions at my pelvis, and since I take Vit. D supplement presently – why not try this as well. Well during the lunch I mentioned my brief search on internet made me choke on the supplement- when I came upon Medsfacts. com study on Viactiv and multiple myeloma a side effect of Viactiv… I was utterly confused and quite concerned, considering- “Well I have MM, but will this chewable affect me further negatively??” I be...

Another topic true to my heart in issues of cancer is lung cancer, as I lost a dear loved one 3 years ago today. Please share this video of our web episode 1. The continuation to this story will be available 2014. In memories to Eartha "Mae" Lawson Best Y

Saturday, my husband and I had an eye appointment- long overdue for 4 years now. I've been getting some stellar headaches and with Myeloma in the midst you try and stir away from getting paranoid- but ya never know... All went well with the multiple blinks and slight chuckles as the doctor and nurse made us feel so comfortable. I'm sure most of you can relate when filling out your health history for new doctors who tend to be introduced in your world, well even though this was a eye appointment I felt and usually now feel compelled to let all health care people know that I'm not your typical patient and a girl has some issues- unfortunately. Well upon giving the spelling of myeloma- the nurse so nonchalantly stated she's a 10 year cancer survivor of breast cancer. Have you noticed as I, that even not by chance meeting people with cancer nowadays is a norm. Someone out there is going through the same or similar trials we're all facing this time of our life. ...

Hi There, Looks like many of you dig my blog and understand my journey. I recently did a interview with Gary Glennell Toms, an established journalist who wanted me to share my story.... It has been a story, I'm sure many of you can attest to. Besides being nervous, it felt good getting the experience with myeloma off my chest. Quite frankly I'm perplexed how I'm still chugging along. I have indeed gone through some things in life. As a woman of faith I don't know where I would truly be without faith.... really I don't. Thank you my friends. Welcome to share- Click- Another Face of Multiple Myeloma Best Y

When you hear the words you have cancer.... What is your first thought? Life, Death, and the thoughts of "Oh ^$%#* I may have to go through the wails of chemotherapy, and not necessarily in this order. Being told I had multiple myeloma was a whirlwind indeed, and I did have those oh crap I will at some point need to take toxins/medicine to control this disease. I have not had the un-pleasure of being introduced to Revlimid , Thalomid and Velcade, but I know it is not an easy decision to decide on taking these options. The uncertainties can be very mind boggling and challenging with the questions what ifs... - What if I get thrombosis? A common possible side effect - What if my hair falls out - What if I can't recover from the treatment? - Needles... Ugh! - Will I feel better or worse? The decisions of cancer are not easy and we all don't take this new life challenge in stride. For some taking chemo means to extend life.... why question the goals of the treat...

LET'S CHAT! I wanted to start a health forum tour where women specifically can relate to questions  and or plain discussions about how we deal with cancer. This is not to leave the men out, as we'll do this again throughout the year so men and women can join in. Let's face it.... We all deal with cancer in different ways, some of us get heavily involved in work, others cope with progression of their cancer, and others take the situation as it comes. One thing I think many women can relate to and that is cancer sucks. Here are but a few that relate to women in a special and personal way: -Appearance -Dealing with Stress -Coping with family duties (Children, Chores, Work, etc.,) -Mentality -Holding our emotions -Grasping the reality of the disease These are some things I would like to address during the first of Myeloma Health Forum Series Women Dealing With Cancer This group is open to anyone other than myeloma patients and or caregivers. The c...

I was wondering about something today and came up with what is the true look of cancer ? Odd question? Not really considering there's a misconception on how people perceive the ill to look. This is me....   I'll be a 5 year cancer survivor this October, which would be exact time I was officially diagnosed with mm. You look at me what do you see? My hair looks intact, I'm smiling through it all, my eyes are not sunken in.....    Last year my husband and I went to a community fair, one of the participants were The American Cancer Society representing a survey to that tracks individual health in relation to later health problems like cancer. Since I was already diagnosed with cancer my husband decided to take part, which would consist of a later appointment and blood work to keep in file, when the ladies asked me if I wanted to take part along with my husband, I announced that I currently have cancer... well the look they gave me was unsettling, ...

Hi Tomorrow holds a special day as I speak briefly on my book and help educate the community about this complex disease called multiple myeloma... madaboutmyeloma.com

My latest doctor visit left me with yet more decisions.... I'm feeling great! I feel alive I'm active , yet there always seems to be another master plan. My labs are still stable, but after reviewing a long and dreaded MRI results, I say long and dreaded because there was a lot of drama arranging this appointment and getting my insurance to approve my lower pelvic, which I've had along with my spinal observation, so it was confusing why they were giving me an issue. Thankfully everything was cleared despite me having to come back to my hospital two separate days to do the exam as opposed to getting it done in one day. Well the standing of the two prior lesions at the spinal area have not changed, but they did find faint viewing of two lesions now growing at the pelvic area. Did I mention a 3rd lesion at the lower spine disappeared from viewing and no longer exists......I'll talk about that and having faith later! So what does this mean.... More ^^%@#^ things th...

Hello, I would like to invite you to meet and greet chat with me via my first online book tour- with a bit of a twist. I'm looking forward to speaking about my book and my journey with MM, and how and what I've done to change my outlook on life after my diagnosis. We're offering discounts on the book if purchased from website the week leading up to tour, Giveaways, autographed copies, and chatting with many who are going through this difficult time. What I stress continuously is though you may have myeloma, it is very important to change the thought that myeloma does not have You. Life goes on- there's traveling to do, work to finish, and life to live! Mad About Myeloma... Really I am Tour Tour Date: June 3- 12:00pm-1:00pm June 7- 8:00pm- 9:00pm June 8- 10:00am - 11:00am Sign up detail is Free Contact - myelomatour@gmail.com for more details and dates of interest     www.madaboutmyeloma.com  

Okay, so I had my dreaded yearly MRI scheduled finally for last week. The 2-3 hour torture of being in this chamber exposed to invisible rays is always daunting, but as long as no needle is involved I'm okay sucking it up. The day before I got a call at my office that my appointment is confirmed- BUT my insurance has not confirmed all tests that need to be done... like I was flustered on whether I should be upset that they were calling me at 4:30pm after a long draining day with meetings and close to going home, or why I wasn't informed weeks ago that there was an issue. The rep told me I had a choice of rescheduling.... um to schedule these types of testing is not so easy and arranging time to do so is not a breeze either. I looked at the phone and what choice did I have but to say okay let's just do the testing of what was approved, and take it from there. My husband in I made it in to NY maybe earlier than needed, but rather early than late. I was up 3:00am in a ...

Okay, it's clear those with mm have experienced different journeys than others, whether doctor care, medicine faux paus, infections, lesions, renal issues, anemia, Thrombosis, or no signs of  lingering harsh effects at all. My pain in the $#^ with myeloma as of this Tuesday April 23 is just the slight uncomfortable discomfort ever so lightly in the lower chest area, like someone gave me a hard push in the chest, or the slight pain at the lower back, where the lesion is being watched once a year with hopes it doesn't act up and calling for treatment. My only treatment thus far has been radiation at the chest sternum, and me hoping my skin turns back to normal, well 2 1/2 years in, I've realized this isn't going to happen! Radiation burn is just that a horrible burn! Health coverage - no issues yet, but than again I'm not on medicine so not sure of the bull that comes with having to be medicated for a specific amount of time. Bone marrow transplan...

I had a wonderful conversation with a new friend on the trials of myeloma, and it was interesting that we’ve both experienced to some degree the nonchalant reactions when faced with our disease. The saying to walk a mile in one's own moccasins could never be far from the truth, sometimes you get the feeling that no one cares or your cause and or experience is not of interest...., or better yet taken seriously.... I'm reviewing various sources to promote Another Face of Multiple Myeloma , and after extensive research I found there a not many books on patient related experiences, which I find odd, with the exception of popular myeloma blogger Pat Killingsley, I found just two other personal stories from author's penned memoirs on myeloma, and one unfortunately passed away and the other I'm desperately trying to gather contact information. I was in the process of working with a top myeloma foundation to present my book to readers that could possbly relate to my experi...

    I'm pondering so many thoughts of how to live a productive and drama free life. My life in the fashion industry is indeed not easy, but there is a certain thrill that comes along with the journey. My company Spitfir Productions is in the midst of making huge moves, which brings point to the subject Career Change and Cancer.... How does one make a huge career move all while maintaining health coverage and days built up of the years as employed. When a working professional is diagnosed with an incurable illness, not only is survival to be thought on, but how to survive if employment is not an option. I'm blessed, blessed, blessed, where I can still be heavily active; However I met many who are not fortunate and have literally stopped working because they don't have the energy,or in too much pain to be bothered. Having a career in general is not an easy task especially for many trying to decipher what they want to do and how to go about it. When diagnos...

I'm really blessed to still be able to live life to the fullest! My book " Another face of multiple myeloma " is in the works of being promoted, my company Spitfir Productions is nicely being upstarted, Mae's Breath Foundation is making great leigh-way in lung cancer awareness, etc, etc... I don't know what would happen if my fires goes out; as it's the thread that is truly keeping me alive. I have a weekly meeting that takes place every Tuesday, and I don't know what it is that gets me so uptight and not nervous but annoyed by presenting at this meeting- but today I wrote the letters- UCDI- You Can Do It... to remind me of the light that is in me, and no matter my anticipation weekly tested that I'm doing despite my fears, anxiousness, or what have you. I may not be perfect with this task, but God only knows and shows me everyday I'm truly a living Spitfire because I'm doing, learning, and achieving in so many other factors of my life. ...

Funny, I’m sitting here amazed how I have so many things going on, yet faced with cancer... like really WTF?!!! We’re planning the 1 year anniversary of my foundation Mae’s Breath and I’m promoting my book- Another Face of Multiple Myeloma , and spearheading my start up. I had a surreal aha moment…. It’s really true- to do all you want to do with a faith, commitment, and hope. Trials and tribulations is the name of the game in life, but I tell you it never fails to amaze me how some can’t make it through when the trials push hard, yet those such as myself, can’t fathom the thought of giving up. I believe when you give up is when your body and mind shuts off. The fight and walk in life is not easy; cheers for so many who want to keep pushing. R.I.P Mindy McCready Never give up!!  

Today was my first lab visit for the New Year. I was excited late last year when my clinic at Mount Sinai moved to another building more fitting for the patients and staff of mm, I was ecstatic. However, the rigmarole passing security is so taxing. My process every lab and doctor visit is trying and quite frankly stressful. First passing security which I mentioned then going to the floor I need to go to, and from that point another check point explaining why I’m there, then sitting with a rep for insurance purpose, then wait to be called to drain my blood. I’m sorry that is just too much…. You literally have to speak face to face with about 4-5 people before your time is over. I woke up at 3:00am to get on an early morning bus from Pa, just to make in time for my 7:30am lab, only to be told that the reps were pulled away for an emergency meeting- like really! Then when I sit to get blood drawn there’s an expired data process where the doctor’s team has to re-assess, but they were in a ...

Well this year started off quite interesting. The first two weeks in were grand, but the 3rd week got beyond bizarre. I had two issues with two co-workers who quite bluntly spoke to me in a way I haven't gotten quite over. However, with this said God is sooooooooooooooooooo good! This is the year of change I feel it in my bones. This is a year of a clean bill of health and for those struggling with a diagnosis of multiple myeloma, understand and know and believe that better things are in store. My book Another Face will be available in a matter of weeks. I'm proud of this work yet anxious how my party of loved ones who didn't know- will now be enlightened. Hum, this should be interesting- but good. The more people educated on myeloma the better. Hope you like my little girl Liz above, she has a sector of friends just like her that you may see time to time, just to keep the momentum of my humor and outlook of this pest MM :) As for the two co-workers I mentioned- ...