A year later...

Well here I am a year after remission and I must it feels good. Scary to think that this could all return, but happy to know I am ok today. I struggle with side effects of the meds that keep me in remission, like weights gain, facial blotting and neck fat, but hopefully I can work my way into eating healthy but more exercising and reducing these side effects. Now to restarting my exercise program and getting myself back into normal shape. You do get lazy after a year and spend more time on the intellectual side than the physical. I find myself more tolerant of people, situations and life. I love being outside and with nature, sounds silly but nice to know mother nature gives me good vibes! Thanks for all your support over this past year!!!

November 2011 addendum

Just realized my last entry was August and I forgot to include my trip to Boston for the Multiple Myeloma Conference. These conferences are worth every minute. I dreaded going thinking I would meet a group of negative, sick or depressing stories. Actually is was just the opposite. The doctors who presented the conference were all experts in the field of Myeloma and talked about all the research and clinical trials being conducted in the area and gains being made. They also said that although Myeloma is a small percentage of all the cancers, this group is light years ahead of other research areas as they begin to unlock what the initial cancer point is. In fact their research is opening new doors for other cancer discoveries! Nice to hear. Met all the research leaders and had the opportunity to speak to them about the future of the disease/condition. By the time I left, I felt so much was being done to find a cure for this and they aren't that far away.

I did share the information with my Oncologist who said this is a very active group that is making great gains. The presentation was much like a Med School sharing of information, but my love of medicine and research made this very informative! I was excited to know that I actually could understand 70% of what those doctors were presenting. Then at the end, they allowed small groups to meet to discuss ideas that they shared which really helped. Found a couple of great solutions to my neuropathy, which still continued to be a problem, but not now.

Greta conference, worth the day trip to Boston!

Update for November 2011

I haven't taken the time to update this blog and should. The last few months have been a lot of doctor visits, mostly to be sure everything is OK. The Rheumatologist is trying to regulate my medications with what I can take being on maintenance drugs for the Myeloma. So we have HOPEFULLY come up with the right formula, at least for now. This makes me much more settled that I am able to come to some resolution with two difficult conditions: Myeloma and Rheumatoid arthritis. What i am finding is that not many doctors know how to treat both effectively. So I am again a blazing a new trail! I did meet with my Oncologist today who gave me some great news. Mainly, my Myeloma recovery and reaction to the medication was as she said, "Miraculous". She also shared that all the cancer is gone, so they label you in complete remission, but the unknown is how long this happens. She is very optimistic that this would be for a very long time. My wish as well!!

I have certainly learned to have an optimistic outlook, always trust your instincts and get a second opinion. Although I truly trust my doctor, she too, encouraged me to consult with another specialist which gave me peace of mind.

I continue to have the opportunity to utilize all the support systems of the Cancer Center. I participate in massages, reflexology, yoga, a trainer to get back into shape and numerous other programs, all free. I still get my weekly rose to put in a vase and know that I am beating the cancer!!

I still am on maintenance, which means I go for chemo treatment (which is a very low dosage) once a week for four weeks and then off for two weeks. I will continue this for a while to ensure I stay cancer free. I actually like it as the days of and for three days after are my most energetic days. Now I understand why people get hooked on drugs!!

That is the latest, stayed tuned for additional updates and thank you for reading this!!!

Latest update 8/24/11

Well I am back with the latest update. Just spent 4 hours at the Bennett Cancer Center (which I refer to as the BCC). They are changing the bone building medication from Zometa to Aredia, which takes 2-4 hours to infuse via IV. I brought everything I could, laptop, Kindle, iPhone, so I could make the time fly productively, which I did. Then I had to get an Xray, since I got a cold and they wanted to be sure I didn't have pneumonia (which I don't). That is a byproduct of taking so many immune suppressing drugs. Finally today, I was off to the Rheumatologist, who now thinks (he is a new one since my old one wasn't covered by my insurance) I don't have Rheumatoid Arthritis. I do like him better and think he is more thorough. So my day was filled with medical needs. My numbers still look good, I ask for them every time I go to the BCC. And my biggest perk is the rose I get when I leave, a real fresh large rose of any color I choose. Today was a pinky red (last week was white)!

My meds are working fine, which is good news. I am going to Boston on September 9th to attend a Myeloma conference of the leading doctors in the field. I think it will be very informative and I dreaded meeting others with the condition, but Jon told me to avoid conversations with them and just gather information from the experts. I think it was good advice, hearing war stories now, doesn't sound motivating. I think I am a "rare case" being in remission so early with so few drugs.

Latest news is my neuropathy in my left hand is really "carpel tunnel" which needs to be surgically corrected. I think I will wait until next month for that. Tomorrow I go for a biopsy on a cyst on my thyroid that I have had for several years, but the doctor just wants it checked, so yet another test! I will be glad when all these things are completed and behind me. Next on the list is my first colonoscopy. Planning on that for October. After years and years of not going to doctors or having any tests, I think this is the "catch up time" for me.

Again, thanks for reading this and being interested in my progress!!!

Love to all....

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....