Jul 31 update

Well I have started my maintenance program of remission and so far all has gone well. My new medication has proved to be very successful and in meeting with my doctor, all my critical numbers are above the safe range, which makes her happy and me ecstatic. Everyone continues to be amazed at the tremendous progress I have made and many call me the miracle child, but I will hold my glee for several years. I did have one unfortunate blip when I again broke out in hives last Tuesday after my first treatment back after two week off all drugs, so I am off to the allergist tomorrow (monday). Could be something I ate or a reaction to one of the monthly drugs - I get (Zometa) which helps build strong bones monthly, so it could be that. I have had three times now, but who knows. This body of mine is quite sensitive to anything foreign that goes into it... a word to the wise for all you "Bosh" decedents. I remember my mother having reactions to drugs too. The other news is that I have a growth on my thyroid that the doctor has been tracking for almost 3 years and I know it is time to be sure it is fine, so I am having a CAT scan and biopsy done in the next few weeks. It hasn't grown in 3 years, so they assure me that it is probably nothing serious. Can't take another scare for sure.

So for those of you who watch TV and have Showtime (I actually don't), I have rented the "Big C" with Laura Linney. They filmed it in a friend's house a few blocks from us in Shippan Point, so seeing the location was quite fun. But it is about a mother who is diagnosed with melanoma (that is the skin cancer) and her journey of not only realizing the disease, but sharing it with others and finally submitting to treatment. Interesting show if you like a drama/comedy. Season 2 begins next week, so you can rent season one from netflix or iTunes.

Well that's the latest. My maintenance is now 4 weeks on and 2 weeks off, which is very easy. but the good news is that since I am in remission, I can get a trainer for 6 months and a free membership to the exercise facility at the hospitals health center! YEAH! Finally I can get back into shape and tone those long overdue need for exercise muscles. And they have a pool so back to swimming again.

Thanks again for reading this, love having someone who cares to know what is going on!!

xoxo

July 7, 2011

Latest Update:

So they have officially put me on "maintenance" drugs and declared it remission. I really hate to say the word for fear it will change, but hey, they are using it! They have changed my meds quite a bit, so I am a little apprehensive that it won't continue to be an easy road. to begin... they added one more medication: cytoxan, so I did my usual research and yikes... one of its side effects is you lose your hair. So in total anxiety, fear, and worry, I called the doctor and said no way am I doing this. I have come this far without it happening and it just won't work for me. She assured me that the dosage was so low that it wouldn't happen. Well the warnings say 3-6 weeks and I am approaching week #3. She also said that if my hair does start thinning they will readjust the medication. Phew!! (But I did check out wigs and the one I want is $1100.) wonder if Medicare will cover that??? So I am now weaning off of the Prednisone from the awful May I had. It takes 8 weeks to withdraw from the drug with little increments every 10 days....Oh the fun of medications. NOW with the cytoxan, they feel I don't need the methotrexate, which is what caused the problems of May (taking me off the methotrexate). So am I nervous...you bet. I am slowly reaching the limit of trusting everyone to know what medications I take. Therefore, I bring the list and check on which one is for what and dosage and days- to be sure I am taking it then correctly. But luckily I am down to only three medications, of which one is only once a week.

So things are great. I feel good, not great, energy is still a challenge, but all the numbers keep going up, which everyone finds amazing. Even me! The neuropathy in my left hand fingers is still there, so I am careful not to pick up anything hot with it. But it is a nuisance. so I read and read about what helps it. B12, acupuncture, massage - there is a remedy out there for everything.

So that is the latest. Thanks to all of you who read this and follow it! love you all....

Latest update 6/28/11

It is always nice to get good feedback and share it with others. Yesterday I met with my personal Oncologist who agreed with the expert specialist at Yale NewHaven. (also thanks to all of you who suggested a second opinion!). Dr. Cooper at Yale thought I should have one more medication, Cytoxan, which he thinks will help the Rhuematoid Arthritis as well. So the question that has arisen, should they take me off my RH med and hope this covers the RH symptoms. Last time Dr. Angevine did this was in May when I tumbled into oblivion. I certainly do not want to go there again! Therefore she is checking with my Rhuematologist, who I just changed. A word to the wise, even though people recommend a good doctor, watch how they not only treat you, but track your progress. I come to find out I should have been have bi-yearly blood tests and never had them with the other RH doctor. Anyway, the good news is that I go off the 2 RH meds I am on, so 2 out and 1 in! My regimen is weekly for the Velcade (chemo) with four weeks on and 2 weeks off. The very good news is I now feel like exercising and getting my muscle tone back, so off the trainer next week.

For someone who hates to take pills, I am finding this a stretch for me. I remember my mother with the pill box and "am, pm, evening" slots...now I know why that is important. Take some with food, some with lots of water, others anytime, some before nighttime and some NEVER later than noon. As I learned last night when I took one of the meds late in the afternoon because i forgot...had insomnia all night, but got a l lot of work done!!

Thanks again to all of you who are tracking my blog and sending comments. You have no idea how much that helps me!!! Stay tuned....

Thanks!!!

OH and thanks to those who are following this blog. I will continue for a while keeping you part of my journey...

Filling in the blanks

OK, I am back!! It is incredible what Cancer Centers offer to their patients. An area that I knew very little about until I was thrown into the "fire". but they actually make having this "disease" more tolerable given the outside support system they offer. Even when I went up to Yale New Haven Cancer Center, it was a hospital that felt more like a meditation and relaxation Center!! So here is what I get (my perks for being a Cancer patient), I get access to a Nutritionist, Psychologist (ok not unusual) but three treatments each of: Reflexology, Massage, Reiki (if you haven't had it - try it), Tai Chi, Spinal alignment. Then after I am finished with active treatments, I get all of these again, plus a personal trainer for a year and access to their workout facility forever (pool, gym, classes, etc). They really make getting back in shape and keeping yourself that way a priority, with all the support you could want. So with the bad, comes the good! I am hoping that in the next six months I am a rejuvenated person!! Wish me luck!!

xoxo

Latest Update 6/20/11

Well I am celebrating!!! Went to Yale New Haven Similow Cancer Center to meet with a Myeloma specialist, Dr. Cooper. What an incredible facility where peace and harmony prevail. I can see why so many cancer patients recover given the beauty of what most cancer facilities like to communicate. You want to go there for the relaxation and joy. Meeting with the doctor was an experience. You first meet with the nurse who asks you at least 40 questions about your condition and its evolution taking tons of notes. Then you meet with a cancer fellow (a doctor studying this specialty) and another 40+ questions. Then the doctor enters and I can't tell you how great he was. His actual first words out of his mouth were: " you have mad a miraculous recovery!" "Your numbers have risen faster than anyone I have seen with minimal treatment and time." I actually wanted to hug this cute doctor! (but the fellow was in the room...just kidding about the hug). He spent an incredible amount of time explaining what Myeloma was and how it affect the bone marrow and why the reaction you have is what it is. He always explained in detail what each drug did. I felt I was taking an Organic Chemistry class again, but at least I now understand Myeloma. So the STEM cell transplant isn't needed and he feels I should just keep up with my minimal regimen and they will monitor the progress weekly. I am now in maintenance...on my way to total remission. they don't use that terms until several weeks of progressive improvement or stabilization in the "safe zone".

The other good news is that they have several new drugs and treatment to treat Myeloma long term and working toward a total remission or cure. so it looks like I need to keep on this course and wait for a year for new state of the art drugs to be approved.

Thank to everyone for reading this and I will keep you abreast on the next chapter, if you choose to read the "Journey!"

Love to all and stay tuned!

xoxo

Milestones-1

I thought this would be a good title as things continue to improve... The doctor called today to say my blood work looked great and they were cutting back on the chemo for now. Yea! Only once per week, which is so much easier for me. AND she took me off some of the other preventative medications they were giving me. I so hate taking any pills, so this is heartwarming news for me.

Secondly, I am in NYC watching little Alba as Mom and Dad travel on business. Today I took little Alba for a 10 block walk, my first outing in months where I wasn't breathing like mad and had to stop to catch my breath. Can't tell you how great that felt. Like being back to normal, which hasn't been in probably 8 months. My anemia count is up to 11.9 (from 8.2 originally) and that is why I have so much energy. So I think I am going to start exercising again, which has been hard for me to do with so little stamina.