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.

Etc.

I haven't said anything about Mr. Bill, who really has been wonderful throughout this. He feeds me and in my worst days, jumped to get me whatever I needed or wanted. He hates the details and doesn't like to know that I feel lousy and loves when I feel my old self, but who can blame him. The funniest thing is he enjoys running to Walgreens (late in the evening sometimes) to get my very favorite indulgent food...red licorice! Of course he comes back with something for himself as well!

All of this has really made me think about what is important in life. May sound a little melancholy, but in the beginning I thought, I can beat this! It's really mind over cancer and I will be a very good patient. Then I started reading these blogs and postings and I got very depressed thinking I will probably die from this, the question is when. But now I know that they have great treatments to put this all in remission for a long, long time. One good thing about the Bennett Cancer Center is they have great support programs and I get them for free. Here's the list: Consultation with a nutritionist, meeting with Counselor/therapist and 3 each treatments of the following: reflexology, massage, Reiki, Tai Chi and Yoga. When I finish my chemo, you get a free membership to their exercise center and personal trainer for a year. Not bad for being sick. So back to the beginning of this paragraph, so after reading all this negative stuff, I asked the doctor and she said do research, but stay away from the blogs and postings. You have a treatable disease but not curable, much like diabetes, or hypertension, which I found good advice. I am thankful to be a spiritual person or I know this would bring me to a point of depression, so I don't think about it much and God handle the details. AND my biggest booster is two small two year girls named Alba and Cece who make me feel like everyday is important because they make me laugh and feel lots of love. How great is that for therapy??

Side Effects: Well I really haven't had any, except some neuropathy in my left hand. In the beginning I lost my ability to taste and everything had a tin/metal taste to it, so my appetite wasn't the best. But Bill would make me smoothies everyday with the best fruit (including acai) and that seemed to not have the after taste of metal. Of course I hate having no energy and at my worst time, I could barely walk up the stairs without being out of breath. Had to dry may hair sitting down. But now all that is gone. I often wonder if it was the Revlimid playing tricks with my body, but I just don't do well with chemicals. Can now have a beer at night or even a glass of wine occasionally...yea!

June 2011

What a difference a couple of weeks make.  I am feeling much better, energy level is coming back and no rash or welts.  They are weaning me off the Prednisone, have restored my arthritis medication and I start the two drug therapy week(s) this coming week (6/12). the numbers continue to rise, which is a very good sign (so the doctor says).  Now she wants me to begin to think of the next phase... A T-cell transplant. She (Dr. Angevine) explained the entire process to me which made me feel as this was my next big challenge.  What they do, it take a group of T-Cells out of your bones (they live in the bone marrow) freeze them and then give you high doses of chemo to knock out the cancer cells.  then they reintroduce the T-Cells they froze back into your system to rebuild healthy T-cells.  Sounds pretty easy...but the chemos kills all the cancerous T-cells which includes lower your white blood count to dangerous levels.  Of course, all of this is done in hospital, so it is at least a two week stay.  Only three places on the east coast do it: Dana Farber in Boston, Sloan Kettering in NYC and Yale New Haven in CT. My choice was only one since my insurance will only cover Yale NewHaven, but Dr. Angevine assured them it is an excellent choice. So I have my "consultation" with the doctor on June 20th at Yale New Haven.

May 2011

I am writing at the end of May.  This was not a good month for me.  What I thought was going to be an easy journey of treatments, took a bad turn during the second week of May.  My energy level had always been low, but now just walking up stairs put me out of breath. I had to sit down to just dry my hair, put on my makeup (which got less and less)  and taking a shower was exhausting. The doctor had now put me on the "miracle drug" Revlimid, which cost a fortune.  I played poor and got a grant to cover the cost at least short term.  Then I would find something else until my drug coverage had gotten to the threshold where they pay everything. It is amazing to me how many programs are out there if you do your research and look for financial support.  You could run a business just on finding and helping people pay for medical costs through grant programs, etc.  The good news was that my numbers were all beginning to come up, not gradually, but as the doctor said, in great increases, to her amazement (and my delight).  Although she attributed to the  Revlimid, it may just have been the whole combination. But I wasn't feeling too great.  The pain in my ribs started to increase, so the doctor gave me percoset for the pain, which only made me sleepy all day. She changed it to Oxycontin time release, which lasted 12 hours and helped somewhat, but then my joints started to become very painful and stiff.  Thinking it was the arthritis flaring up, it got worse and worse to the point I could hardly move without pain.  At the same time, on a visit to the doctor, I just didn't feel right, very weak and a little unsteady on my feet, she took my blood pressure to find it was very low (for you BP people 78/40). And she found a rash on my back and stomach.  So I had to stay for two hours while they infused a liter of fluid to bring my BP up to at least 90 before they would let me drive home.  She also gave me benedryl and told me to watch the rash.  The pain in my joints got worse and the rash turned to welts all over, arms, legs, stomach, back.  And I felt really tired.

As a side note, one of the things I need to worry about is my white blood count is low and therefore, I am very susceptible to infections, and should stay away from sick people. (now I'm a bubble child!)

Over the next few days, I barely moved from the couch, to the point I had to call the doctor and say, something is really wrong here.  We figured out that one of the medications she had taken me off of for the arthritis was the reason, so she prescribed strong doses of Prednisone and changed my Oxycontin to Vicoden, thinking the rash was from the "codone".  Well the joints got better and the pain began to subside, but the rash got worse, now traveling up my neck. We are now at Memorial Day weekend and of course the office is closed, so I made a personal decision to stop taking the Revlimid.  It was now the only drug, other than Prednisone, that I was taking.  So it must be the "miracle drug" that I was allergic to.  And I was right, over the next few days, the rash/welts started to disappear, my energy began to rise and my blood pressure was going back to normal.

On Tuesday I called the doctor and she agreed I did the right thing.  She now wanted me to see an allergist to be tested. And so I am off to see another doctor who confirmed I was probably sensitive to the Revlimid.  My choices were to stay on the Revlimid and they would treat the reaction with high doses of benedryl and steroids or not take the drug.  The former was not appealing at all and I feared not being able to take the Revlimid which everyone said was the best fighter of Myeloma today.  

One thing I forgot to mention is that there is a very strict regimen for drug therapy with Myeloma that has been proven to be successful.  Dana Farber Hospital in Boston is the leader in research and trials on drugs with Myeloma and they have established this process.  The Bennett Cancer Center works closely with them and has adopted all of their protocols.  Therefore, you do two weeks on chemo drugs and one week off. The chemo is a combination of pills and IV fed vial, twice a week. So over a two week period, I get four treatments and then one week off. In the beginning, I felt great on the treatment days and then a couple of days after, then the energy and pain would slowly come back until the next treatment day.  The week off was tough, but as time went by, this became less and less apparent. (of course, until the May episode).  Now the doctor has decided to change the regimen and take me off the Revlimid, but keep me on the other two drugs twice weekly for a 6 week period.  So we will see how this new drug therapy works.

Telling people

Well this was the hardest part for me and continues to be.  Other than immediate family and a few very close friends, I have told no one.  I was in church for good Friday and standing in the back next to a "friend" who whispered during communion, everyone in the church who had cancer.  that did it for me...I don't want to be on the "C" list.  I really don't want the kids at Post to know.  It's just too hard to explain the whole process and what it entails.  Plus I think people get the idea that if you have cancer it is the road to death. (which I hope it isn't).  I do think people have a preconceived notion that Cancer is a no win disease, which they tell you it is not. So only a few close friends know, and I hope they will keep it confidential at least for now.

So the reason for this blog is to keep everyone who cares up to date on the journey, which I feel it truly is.  So stay tuned....