The Pharmacy Incident

Throughout my treatments and fights with cancer, I have experienced side effects like most people do. My lungs were permanently damaged from the Blyomycin they needed to use in my treatment - the solution, I am now on a rescue inhaler and a second inhaler just so I can walk a city block without running out of breath.

Towards the end of my last treatment, I got a Severe case of shingles that covered my right hand, in between my fingers and up my right arm. The pain has never gone away. I saw the top neurologist in NYC who has me on oxycodone, morphine and clonazepam just to deal with the pain.

Yet everytime I go to my new doctor, for the past two months he's written the prescriptions incorrectly. Where did this guy go to school. On top of that, I take my prescriptions to the pharmacy and get looks and judgement from the pharmacy staff who I do my best to not let the New Yorker come out in me and let them know to mind their own damn business.

Today was my day to fill prescriptions and I think this video pretty much sums up how I was feeling when I left the pharmacy. I think if it happens again next month, I may just win an Oscar for my performance at the CVS CarePlus pharmacy even though Julianne Moore was stripped of hers.

A New Decade... Time for my 6 month PET/CT scan, the nerves kick-in

Let me start the new decade by saying I hope you all had a beautiful holiday with your loved ones. I wish everyone a new year filled with love, family/friends and most importantly good health! After the past ten years and the battles I have faced, my prayers are all in that this decade will be a better one in terms of there being far less problems with my health. In all other areas, I've been blessed to find the love of my life, greg. We were legally married this past summer by a dear friend in San Francisco and now have two families who I love dearly - my mother, grandparents, sister/brother in law, and sweet niece and nephew kaitlyn 'katie kate' and tyler 'ty ty' andmy husband greg's mom, dad and sister and niece shelby who have adopted me into their family with open arms. I couldn't ask for more.

The time has come once again for my six month check-in. I can only pray that tomorrow will bring me good news. I'm living in a new state and being treated by a new cancer center, so I can't help but be a little nervous to be outside of my comfort zone and the doctors/care I had in New York. I think the strongest weapon I have right now is to remain positive in my mind and body. My focus is on good news.

Looking at my own health history, I was 23 when I was diagnosed with HIV. I was out and open to my friends and family, but a late bloomer in terms of my sexuality. My first job in New York City was at a popular nightclub promoting parties and events. Essentially, a "club kid" during the era of Michael Alig (i.e. the film Party Monster was about the era in which I worked). I was more interested in what I was going to where the next night than I was about being in a relationship or sex. Unfortunately when I removed myself from this scene and started to date and meet people, I made a dumb mistake in trusting the man I was with after a few dates. Turns out a few months later I lost close to 30 pounds in less than two weeks and couldn't keep anything I ate down. After many tests with my family doctor back in PA, it turned out I had HIV. It was before protease inhibitors "cocktails" and current treatments. At the time, my only choice was AZT and I was allergic to it which provided me with my share of life threatening visits to the hospital. I share my stories with you in detail as I hope my stories will help others in terms of being smart about the decision we make. In the summer of 1996 is when I was first diagnosed with my HIV non-hodgkins lymphoma. So you can say I'm a bit of a survivor. I also believe there is an angel or someone watching over me. I would never hurt another person the way I was hurt. It's just a lesson I learned at a very early age and have had to deal with people's opinions ever since.

Two years ago at this time, I was in the middle of a severe chemotherapy regimen called the 'vanderbilt program' after being diagnosed with Stage 4 Burkitt's non-hodgkins lymphoma. For those of you who read my blog and are looking for answers, I've done some research and will be following this post with more information on what the 'vanderbilt regimen' is. It's hard to find information and understand medical terms which is why I try to write my posts in a away we can all understand. After many tests, the outlook was grim. "burkitt's" lymphoma is the most aggressive, but luckily also responds well to chemotherapy. My PET/CT scan showed I had six tumors throughout my body including my left and right axilla (armpit), left and right groin, my liver and my fifth rib on the right side of my body. Due to how far advanced the disease was, I needed to be treated with this very aggressive treatment regimen as it was the only treatment strong enough to eliminate the tumors. Because of the severity of the treatment I spent the holidays in the hospital with my loving husband greg, mother, sister and friends by my side throughout it all; the nightsweats, the nausea, the fevers, neutropenia (complete loss of your immune system) and ultimately my hair falling out on christmas morning. I've made several new friends (survivors, supporters and those in the fight) through this site by continuing to share my personal experiences with cancer as I believe one's battle with cancer does not stop with the end of treatment. I have survived cancer three times now and although it has not killed me, it has certainly taken a strong emotional toll I'd like to write about with this entry that affects several aspects many different aspects of my life.

I believe one of the hardest things for me has been finding my way back to walking to the same beat as I did with my head held up before I ever faced any disease. I didn't always have the luxury of having a loving husband by my side throughout my fights with cancer or any of my medical problems, but I have been blessed with a strong support circle of friends and some members of my family are doing the best they can to cope with their husband, son, grandson, brother being sick. As we all know, not all fighters win the battle and the statistics are very sad to me around time of the year which is why I make i a point to pray for good health for Christmas and New Years along with the continued success of my marriage with greg, the love of my life. At the end of my treatment in February, 2008, I came down with a very bad case of shingles all over my right hand in between my fingers and up the back side of my right arm. It's a pain that I've been seeing one of the top neurologists in NYC with ever since for the pain management. At this point, I'm on so many narcotics including oxycodone, morphine for pain and clonazepam for daily anxiety attacks. Due to being on so many downers, I need to take ritalin to maintain my focus. The pain gets worse int he winter time when my hands are exposed to the cold air - it feels like what I would imagine small lightning bolts feeling like. My point is if you're ever hospitalized for any reason and you're immune system is suppressed, there is no harm in asking your nurse or nurse's assitant clean your room with anti-oxidant wipes so you don't run into any other diseases or problems from the stay in your room. It's very important to pay attention to these details. Nurses and nurse's assistant's are people and are human.

One of my goals for the year ahead is to spend less time focused on every small ache and pain I feel in my body. After being in and out of the hospital over 10 times in my lifetime with various life threatening situations, it's left me very scared and aware of my body. In my opinion, sometimes aware to the point of it not being healthy. How do I change that? I'm not sure. Each of our journeys through life are unique and who can truly understand everything you've gone through and survived other than yourself. Maybe this is a year for more self exploration. What makes me tick? What can I do to not becoming so scared each time something might feel off in my body. Before cancer, I had aches and pains just the same. But my point of view has been tarnished unfairly in my opinion. I believe I've suffered through enough disease for one lifetime, but this is not a healthy attitude. I started reiki and acupuncture during my last treatment and continue to see a local gentleman who is compassionate and terrific. I leave his office feeling like 50 pounds have been lifted from my shoulders some days. For others out there going through treatment, do not be afraid to try things that you may not be familiar with. We as americans get stuck in the mindset that western medicine is the only thing that can help us. I am evidence that this is not true. I honestly don't think I would have made i through my battles without the help of some eastern practices. Try new treatments to help you get into a comfortable place, remember these words mind = body. Your mind is stronger than we realize and the attitude we take is just as important as the medicine we are given. I think I might benefit from yoga and getting in better shape as well. I'm not helping anyone to live in my own paralyzed state of fear. It's time to face those fears, where some of them branch from on many different levels and find a way to go through life with the tools I need to succeed emotionally.

I try to keep my posts as open and honest as I can for many reasons. One is that I know I am broken emotionally from all that I've been through and I spent years not knowing where to turn for help. This took me a long time to admit, but a very important thing to come to terms with. I've started talking to a therapist and continuing to see my reiki/acupuncturist. It may be a small step, but it's a step in the right direction towards becoming healthy. Times have been hard for Greg and me since moving to Philadelphia as well. Greg has had a hard time finding work which adds extra stress to the expenses we have in our lives.

These are all things that are not unique to me. We all have problems and we're all working towards finding a healthier place where we can live harmoniously with ourselves being strong as individuals, and coming together to support each other in times of need. At times, it gets hard, but most of America is facing some type of hardship right now.

My focus is on a clear scan tomorrow and good news in the days to come. I am feeling weak and want to feel like myself again. I am a very outgoing person who makes friends very easily. I enjoy your basic day to day communication that alot of us take for granted. However, it's very easy to feel isolated and alone during treatment. You're left alone with your own thoughts, and when you are fighting for your life, the days can seem especially long.

I'll close by saying I am a work in progress. I strive to be stand by my morals of being an honest, fair and person who has respect for others as well as myself. This is what we all deserve in this lifetime and anything less in just not good enough for me. Please keep me in your thoughts and prayers tonight and tomorrow morning. My scan will be starting at approximately 8am, so if you're up, send me some light, it would genuinely be appreciate.

Until my next post, I love you all. To my fellow survivors and those in the fight, keep your head up and stay focused on life. There are so many beautiful things for us to experience in life and noone should have their life cut short. If anyone ever wants to talk through anything, I love to meet fellow survivors and other affected by this disease. My contact information is on my homepage and I would love to hear from you. Love, Brad

Ad Habit is here..

At the beginning of each year we all make resolutions of what we plan to accomplish in the coming year; lose weight, save more money in the bank, continue to build our collection of danish/mid-century modern furniture, etc. But as we enter a new decade, my mind got to thinking about the future and what I'd like to accomplish in the next decade. I have survived cancer three times which is already an accomplishment that I am very proud of, but I want security for my husband and I.

We moved to Philadelphia in fall of 09 after I started having trouble with my health again. I've personally lived in New York City since 1987 but am a Pennsylvania native. Philadelphia is having a huge revitalization right now and with the price of real estate, it's a great time to find a home at a good price. We are currently in a 2 year lease in the penhouse of a condominium overlooking center city Philadelphia, brownstones with the skyline in the background. It''s quite beautiful. We have the first right to refusal at the end of our lease to purchase the condo which we are working hard to save the money to do.

But I wanted more. We have alot of very talented friends and friends with small businesses and corporate contacts that need websites, corporate ID, etc. This gave me the idea to start a small independent agency called 'Ad Habit'. We took on our first two clients in January and sites are scheduled to launch in the coming weeks. Ad Habit is a small group of professionals run outside of the normal hours of our day jobs and helping friends promote themselves.

If you or anyone you know are looking for a website, please feel free to reach out to me.

Here is a brief bio on the agency and our capabilities..

Ad Habit is a full service advertising/production agency based in Philadelphia, PA with offices in Pennsylvania and New York City. Ad Habit is made up of award winning interactive, new media, broadcast & print professionals with 20+ years experience in the industry.

We cater to brands of any size looking for ways to reach their consumer in new and engaging ways. We offer discovery, conceiting, interaction design, analytics, SEO, design, front/back end development, flash, CSS, Ajax, 3D modeling, application development, broadcast shoots, styling, retouching and editing.

We have a proven track record of ROI on all sites and follow new media trends to keep you informed of what’s new in the market.

For a free consultation or to set up an appointment to discuss your ideas, contact us at hibrad@me.com or 917-279-1584. Look for adhabit.com to be live in the coming weeks as well.

Thank you and we look forward to hearing from you. Wish us luck in our endeavors.

Stand Up 2 Cancer Gives Grants to top Cancer Researchers in the Country

Stand Up 2 Cancer is an organization that has been raising money through national broadcaststs and sponsors like MLB and MasterCard and are gaining stamina in the fight against cancer. For those of you who saw the Stand Up 2 Cancer national broadcast/fundraiser you know how many people cancer has touched. The government cut the cancer research budget this past year and thus began Stand Up 2 Cancer, a national organization focused on raising money for the top cutting edge cancer researchers.

Today, SU2C announced the first recipients of its innovation research grants. Individual grants were awarded to 13 young investigators, and are designed to foster cutting edge cancer research with strong potential to impact patient care within a short timeframe. Our support of these high-risk, high-impact research proposals, which are not usualy funded by conventional peer review, is a part of what makes SU2C so different. We want to bring the most promising new treatments to the patients who need them as quickly as possible, and every donation brings us closer to that goal. Give now to lend your support - even small donations can make a big difference! Cllick here to make a donation today.

"When you look at any scientific breakthrough, whether it's the first vaccine or going to the moon, there was a new way of thinking and a new way of doing something. To me, innovative cancer is about fresh ideas and integrating insights of approaches from different fields - even from unanticipated places - to put the pieces together and come up with something new that will help us find cancer cells' Achilles heel.. The most important discovery we can make in the next five years is to really understand how cancer cells survive, figuring that out will enable us to neutralize their survival pathways and shut them down.

How does one get an appointment with any of the top rated Oncologists we read about in US News & World Report every year??? - Philadelphia???

Yesterday, my husband Greg and I met who may be my new oncologist here in Philadelphia. His name is David Henry, MD. He is a hematologist and oncologist with Pennsylvania Hospital, part of the U. Penn system in Philadelphia. In NYC, I was treated at St. Vincent's Cancer Center which has a separate facility with close to 30 beds and then another 60+ chairs for treatment and overnight stays if necessary. Pennsylvania Hospital's cancer center was called the Joan Kimmel cancer center. There were some chairs for treatment, but no beds.

I only bring up the fact there were no beds as 90% of the time I was being treated with my Stage 4 Burkitt's, I was completely neutropenic and could barely walk 1 city block. Keep in mind, I was under an EXTREMELY aggressive treatment regimen. Still, there is some comfort to knowing there's a bed available for you to rest if you need to when you're in a siuation like this. Often it would take up to a half hour just to re-gain my energy just to walk back out the front door to make it to a cab waiting in front of the center.

Dr. Henry told me about an consortium called the AMC, the Aids Malignancy Consortium. The AMC from what I understand from him is a group of oncologists and doctors who study cancers and lymphomas related to HIV. Everything I found online was mostly dated back to 2003. There are a few posts on the site hyperlinked to AMC above, but most of the pages your click through to are no longer valid. The site is in dire need of help. It doesn't contain alot of information which makes me wonder what the benefits are. I know the government has been decreasing moneys in cancer research overall through www.standup2cancer.og. Stand Up 2 Cancer however raised money and have been giving grants to the leaders in cancer research, so I can only hope that some of this money is going to cure HIV related lymphomas.

Upon my arrival to the Joan Kimmel Cancer Center, blood was taken along with all my vitals. I was happy to find my LDH at the lower normal end of the range which gave me a sense of relief. Dr. Henry's nurse came in who was very nice. She went through my medical history and felt for any abnormal lymph nodes. The one thing that did make me feel uncomfortable was that when Dr. Henry did come in the room, he didn't perform any exam. It was more of a meet and greet. I personally prefer the oncologist to do my exam after my history of surviving cancer 3 times, so I'm not sure that I won't go for a second opinion.

The thing I do find difficult at any of these top rated hospitals is that it is just impossible to get in. They require you fax all of your paperwork be sent to a fax number and the only information you're given is that they will call you with an appointment based on the records and priority of other patients that are waiting to be scene. Not very comforting, huh? What if there was an emergency and someone was left without an oncologist because a scheduling assistant didn't deem it necessary to get you in sooner than later.

This was my third battle with cancer now and there are wonderful hospitals and cancer centers here in Philadelphia, the top in the country including the University of Pennsylvania, Fox Chase Cancer Center and Jefferson. I will work to get in to see one of these oncologists. I think a second opinion is necessary at this point.

If I can give one piece of advice about their healthcare, it's to be sure to make sure you are comfortable with your care. If you are not happy, get a second opinion. Your doctors ARE getting paid and it is establish strong relationships with them. However, it's equally important that they are handling your care and life as important as you would.

Below is the information I found on the AIDS Malignancy Consortium. If anyone has any more up to date information, please let me know. This is something I'm very interested in.

The AIDS Malignancy Clinical Trials Consortium (AMC) is a National Cancer Institute-supported clinical trials group founded in 1995 to support innovative trials for AIDS-related cancers. The AMC is composed of over 37 Clinical Trials Sites worldwide, five Working Groups, an Administrative Office, a Statistical Office, and an Operations and Data Management Office. Collectively, these components develop and oversee the scientific agenda, manage the groups’ portfolio of clinical trials and other scientific-based studies, and help to develop new protocols.
Four of the working groups deal with the cancers that affect HIV-positive patients—Kaposi’s Sarcoma, Lymphoma, Human Papillomavirus-related Cancers (for example, anal and cervical cancers), and Non-AIDS Defining Cancers (for example, lung cancer, head and neck cancer, liver cancer). The Laboratory Working Group oversees the Central Laboratories of the AMC and develops laboratory studies to answer important scientific questions related to cancer in HIV-positive patients. In addition, all of the groups within the AMC are working to expand the AMC globally and to conduct clinical trials for AIDS-related cancers in diverse patient populations.

What I Am Thankful For...

I've been meaning to write this post for some time. Thanksgiving was a little bit rocky this year for our family. Unfortunately some personal issues came up and caused my husband and I to argue the day his parents arrived from Florida to celebrate Thanksgiving with my family, Greg and I. I am sad that I hurt those people in my life that I am thankful for and would like to go back in time and fix things, but unfortunately cannot.

In general, Greg and I do not like to argue... we like to talk things out, but there are times that every couple argues and unfortunately it happened during a time that we should have been letting our loved ones know how thankful we are to have them in our life, not make them feel uncomfortable.

I am thankful to have two families who love me, my mother, grandmother, sister, brother in

law and beautiful niece and nephew Kaitlyn and Tyler and Greg's mom and dad, sister, brother in law and niece Shelby. It's so nice to have two families who support Greg's and my marriage.

I am most thankful for my husband Greg, my "sweet pea", who I love dearly. I think it is normal for any couple to fight every now and again. Greg and I rarely fight, so it's just unfortunate the timing of all of this. Our love is strong, but we had some personal things that we needed to talk through which escalated.

This doesn't change my feelings about Greg or that I consider him to be the love of my life. We share so many things in commons and our differences draw me closer and closer to him. I just want to see Greg be happy in every sense of his life as much as I do myself and our families. It's important to be happy and living so close to someone, you get to see their emotions closer than a

nyone else. We are both filled with emotions and love each other dearly and that to me is what a relationship is all about. We are there to pick each other up, we are there to just hold each other or to just listen when you need an ear.

I only mention our fighting as it hurt a number of people physically as well. Greg's mother suffers from Parkinson's, so it affected her health. I have been HIV+ for 18 years. I became positive after my first sexual experience. Each month I watch my numbers go up and down and stress is the number one thing that is my biggest enemy. My immune system is still suppressed from the chemotherapy and one of my lungs seems to be permanently damaged from one of the chemo drugs they gave me called bleomycin. I do my best to keep the larger picture at mind, but I'm not perfect and alot of things have led up to the person I am. I am a survivor with a big heart. I have all of the love in the world for Greg and would never do anything to hurt anyone. I am sorry for the damage we caused over the holiday.

It's been almost five years together now and we've gone through some battles with my health and my cancer, Greg was there to make sure I got through ok and honestly if he wasn't there along with my friends and family, I don't know that I would have gotten through it. This past battle with cancer has left me feeling crippled in many ways. I find myself checking for lumps

almost every day. I talk to my therapist about it, and it's slowly getting better.

In any new city it takes some time to find a truly good doctor who will take care of you. This was my third visit to a primary physician, his name is Dr. Mark Watkins and he deals primarily within the GLB&T community. He reminds me a lot of my doctor in NY, Dr. Shay. Greg says his voice reminds him of Michael Kors... LOL. I'm just happy to have met someone

with a strong network of doctors which is what I need.

I will meet my oncologist here in NY for the first time this week. His name is Dr. David Henry and he is the Chair of the Oncology department at U. Penn, the oldest hospital in the country. From what I hear, he has been working alongside my doctor for the past 18 years. It

makes me feel good that the stress of not knowing who my caretakers are going to be should I need someone are going to start going away. It's nice to have a doctor who cares and wants to make sure I'm in the best hands here in Philadelphia.

For those who don't know, Philadelphia is one of the best medical cities in the country. Fox Chase cancer center is here. U Penn, Drexel, I think there's a total of 11 hospitals here. It's nice to have found a home so close to NYC that we'lll still get to see all of our friends from NYC and we can visit NYC as well.

So on Thanksgiving, I give my thanks for Greg. I am thankful for having two loving families who love us. I am thankful to be healthy and alive. I am thankful to be in such a wonderful city which caring physicians who I am getting connected to slowly but surely.

And I am thankful to all of you who come back to read my blog. Your messages and support have meant the world to me. I love you all and hope you have all had a wonderful Thanksgiving as well.

Surgeory and Support...

There's not too much to update you with, but I do have a bit to say about the surgery, castleman's disease itself and making sure you're always surrounded with the right type of emotional support. Above you see Greg 'sweet pea' and me in front of our dream home. Those of you who know us know how much we both love mid-century and danish modern furniture mixed with modern twist and these environmentally friendly prefabricated homes are cool with a capitol 'C'... made out of recycled materials and solar to run your heat and a/c. I'm all for it.

As I mentioned in my last blog post, this was my fifth surgery with Dr. Pacholka. The routine was the same. Repeat your name, birthdate and why you're here to a parade of about six people and then be taken into the room. My husband Greg and mother came with me to the hospital. I decided to do the surgery in NYC as I know and like my surgeon there. I had the option of having the lymph node biopsy done in Philadelphia, but I want to get to know my oncologist and his specialists a bit better before I start going under the knife with any of them. We left Philadelphia at 5:45am for an 8am appointment. Philadelphia to NYC is a little over an hour but as luck should have it, we got caught in slow traffic/construction from Elizabeth, NJ to the city. I didn't make it into the hospital until about five minutes after 9am and was worried my surgery was going to get pushed. Guess this was my first time experiencing what it feels like coming into the city as a commuter.... don't like it... LOL. Thankfully everything worked out. I remembered the nurse from three of my previous surgeries and she remembered me; kept referring to me as the 'nice man'. It changed my mood instantly.

After that my mom and Greg were allowed back to the waiting area while the everyone made their rounds. The funny point was when the anesthesiologist came by to introduce himself. He was about 6' tall, very muscular and let's just say was easy on the eye and flirtatious - made Greg and me both laugh. My mom was sitting there and even commented on his looks. He explained that I would be getting local anethesia as opposed to general anethesia with the breathing tube which made me nervous. The lymph node they biopsied in upper right groin area, close to the muscles I use to walk with, so let's just say the healing is bit painful. I explained my concern that I did not like any type of pain and did not want to remember any of the experience to my anethesiologist as we walked back to the room. It was bad enough this guy was a good looking guy, but it turned out he was the one who was going to prep me... yep... everything from pulling my underwear off, to shaving my groin area to resting all of the stuff he was working with on top of my gown right over my groin if you will, it was a litle uncomfortable. Part of me felt like I was waiting for Chi Chi LaRue to walk into the room.. LOL. Enough about that.

The surgeory went seamlessly. We drove back to Philadelphia and have been resting since. My surgeon explained to my mom and Greg that he pulled the lymph node out and it would take 7-10 business days to get results on whether there is any cancer is the biopsy. I'm doing my best to concentrate and meditate and keep thinking about positive health. The one thing I really need to focus on is eating better. I eat too many bad snacks and now that we are living in Philadelphia, snack food capitol of the US, it's a bit hard to resist. I have to do it though. I want to do it for my health and I want to do it for myself as I want to live a healthier lifestyle and not be lazy... and look good for that sexy husband of mine. The surgeon didn't have any idea of whether the lymph node looked cancerous or not, just that if it was cancerous that we caught it early enough to treat it. This all has me scared of course as I do not want to go through another fight with cancer. This would be the fourth fight with cancer and although everyone says even if it it cancerous it would be a much less aggressive fight, to go through any fight at all after the fights I've gone through in the past is just not something I want to do. Chemotherapy and Radiation are both very dangerous and could kill you alone from the side effects. It's 17 months later from my chemotherapy from my Stage 4 Burkitt's Lymphoma and Im still having side effects from the Bleomycin they used as part of my treatment. It did some damage to my lungs. The hope was that it would go away on it's own, but it scarred both of my lungs and I don't go through a day anymore without using two inhalers at least 2-3x a day, otherwise I find myself short of breath. I personally use Xopenex as my rescue inhaler and Symbicort as my daily inhaler. For anyone who uses more than one inhaler on a daily basis, make sure you wash it down with some sort of juice or water. If you don't, you can get thrush in your throat. It happened to me in the hospital. Towards the end of the treatment they had me on 3 or 4 difference inhalers and it happened to me, so just a bit of knowledge to share with everyone.

Castleman's Disease is a very rare disorder characterized by non-cancerous growths (tumors that may or may not be cancerous) that develop in the lymph node tissue at a single site or throughout the body It involves hyperproliferation of certain B Cells that often produce cytokines. It is named for Benjamin Castleman.

Greg went back to work the next day and I spent the day with my mom here in our new place. She did the best she could to take care of me, but I guess it wasn't the most exciting for her to be stationary as I tried to sleep. I got up and we worked on some projects for her, but for the most part I wound up having to spend alot of the day in bed as I needed to heal. Mom wound up going back to PA on Thursday morning and I'm doing my best to keep my mind focused on good health.

I've attached a picture of the Fox Chase Cancer Center which is located right on the outskirts of Philadelphia. It's right up there with Sloan Kettering and John Hopkins. I love my oncologists in NYC, but I have access to one of the top cancer institutes at my fingertips here in Philadelphia so why not take advantage of it. I have all of my paperwork faxed in to get an appointment. The state of our healthcare just makes me laugh as the number of steps just to see a doctor is just amazing. Please fax forms A, B, C and D and allow 7-10 business days and wait for the nurse practioner to prioritize how much of a priority it is for the doctor to see you. Pretty amazing when you think about what it is that we're dealing with here, huh?

I probably won't write again until I get results which will be sometime between October 6th and October 9th. I'm meditating and praying for good news - no cancer. Everyone is pretty optimistic, but I've learned in my life to take things one day at a time and take things as they come. I've been having more nightmares than usual and I am very thankful for having Greg to talk to and get extra hugs. We're both leaning on each other pretty hard right now. It's been almost five years and I can't think of a better friend of husband i've ever had. I love you sweet pea and I know this week will bring us good news so we can continue our start in Philadelphia with good news. Love to everyone following this post as well. I am very scared, but with all of your support and messages, I feel stronger every day. Thank you for your messages, emails and FB posts, they help more than you know. Love to you all.

On the eve before surgery..

A large part of this blog is a collection of my own experiences, health struggles, and feelings associated with them. I can only share my own feelings and research I've found since starting this blog in November of 2007. When I first started searching for answers, I found page after page of medical information online, but had difficulty finding pages with people who had fought cancer and open to sharing their stories. I also found a great deal of the information online hard to understand, so I try to write about things as I gain a stronger understanding of what things mean, I hope this is helpful.

I want to say thank you to everyong for your outpouring of support through this most recent scare. I had my pre-surgery office visit with my surgeon today who shared some news that put things into a more positive light for me that I'd like to share. My surgeon is Dr. James Pacholka and if you live in NYC and need an AMAZING surgeon and individual, I couldn't recommend anyone higher. Despite the intensity of his job, he has a calm demeanor about him that is contagious. I feel blessed to have met him at my time of need and throughout all of my surgeries. He is the reason I am going to NYC to have this biopsy done as opposed to doing it here in Philadelphia.

Castleman's disease is in fact a rare disease of the lymph nodes. It can or cannot be cancerous and is sometimes not. We looked at the pathology report together and the first thing he said that the concern came more from the PET scan of the reading than the CT portion. A PET Scan (Positron Emission Tomography) is a is a nuclear medicine imaging technique which produces a three-dimensional image or picture of functional processes in the body. A CT Scan (Computer Tomography) is a medical imaging method employing tomography created by computer processing. Digital geometry processing is used to generate a three-dimensional image of the inside of an object from a large series of two-dimensional X-Ray images taken around a single axis of rotation.

The PET Scan showed that my lymph nodes had increased in size since my last PET/CT scan. My surgeon said this could be for any number of reasons including the lymph nodes just doing their job. However, the PET scan showed enlarged lymph nodes throughout most of my body (right/left axilla, left/right groin, throughout my chest and a few other locations). He explained that removing and studying one of the enlarged lymph nodes would be indicative of the other enlarged lymph nodes in my body. The fact the PET Scan showed the enlarged lymph nodes throughout my body along with my LDH (Lactate dehydrogenase) is an enzyme that catalyzes the conversion of lactate to pyruvate. This is an important step in energy production in cells. There are different LDH markers depending on laboratory that indicate whether you're LDH level is within a healthy range. My range was within the higher end of the normal markers for my past two visits now, so did the PET/CT scan and this was the outcome.

Even if the biopsy were to come back that I do have Castleman's Disease, the survival rate is very high. The chemotherapy regimen is much less aggressive than what I went through for my Stage 4 Burkitt's Lymphoma and there is a 96% survival rate with Castleman's. But I am not focused on this. I have been doing alot of praying, meditating and focusing my energy on that this biopsy is going to yield good results.

Philadelphia is a new chapter is Greg's in my life and we are just getting started. We've been here a month now and love it. After 2o years in NYC, it's nice to slow down a bit with your husband and lose a bit of the hustle of it all. It's a short commute and I can still get my NYC doses through work and seeing my friends either in NY on the weekends or here in Philadelphia. Philadelphia has a natural charm to it with it's narrow streets, great restaurants and architecture. It really is a beautiful city and in this year's Conde Naste Traveler was voted the country's 'friendliest city' and city with the 'best places to eat'. I agree with both, both stories for a future entry however.

The purpose of this blog was to write about the night before surgery jitters. I've had five surgeries now and while I have gotten better in the fact I know what to expect from the surgery now, the simply fact that it is a surgery is scary. I'm going to end with a phrase a find especially inspiring to me and I hope you will to.

Take the time to enjoy life one day at a time, one step at a time, one hour at a time, one moment at a time. If you ever find yourself paralyzed with anxiety or caught up in a stressful moment, take a few minutes in a quiet place or put on a song that helps you to reach your calm place and take the time to think through what's going on, some time for yourself. It's easy to get caught up in the moment of our fears and anxieties, but in the end we control our own reactions and destiny to a degree. Focus all of your energy and prayer on good health & better piece of mind and you'll start to see it. The tools are there. I also find reiki, acupuncture, meditation, music and writing to help me a great deal. What helps you? Where do you find your inner peace?

I'll be going in to surgery around 9:30am in the morning. Send me some positivity and know that I am thankful for all of your love and kindness that I'll be thinking about as I go into the operating room. My husband Greg and my mother will be with me and I'll have my mom for an extra day, so what else can I ask for. I am blessed to be surrounded by all of your love. Night xoxo

Surgical Lymph Node Biopsy Tomorrow

As you know, on Tuesday, September 22nd, I got the phone call with results from my latest PET/CT results showing I have a rare disease called Castleman's Disease.

I am going to meet with my surgeon today at 5pm and following up with surgery tomorrow morning. In order for my oncologist to know how to treat me, we need to do a lymp

h node biopsy that will need to be studied to make the official diagnosis of how advanced the disease is.

I've been cancer free for 17 months since my stage 4 Burkitt's Lymphoma, and now an entirely new disease. I'm so fed up with the effects this has on my personal and professional life and those close to me. I have survived cancer three times now and I am not the same person in any sense since my last fight.

I don't go a day anymore without checking my lymphatic areas (axillas, groin, neck, etc). It's hard not to check yourself after going through something like that yet it's so unhealthy emotionally at the same time. So how do you just stop? I'm working with a therapist to figure that one out and am confident I'll find the answer. Until then, I'll just keep taking it day by day.

Philadelphia has been wonderful for me spiritually. I spent over 20 years in NYC yet I've felt for a few years now that it was time to move on to somewhere with a slower pace but still has a a city feel. Philadelphia is nice in the respect that it's not that far outside New York at all. A little over an hour. About the same distance from my family in PA, so we're somewhere in the middle. It's also just a beautiful city.

I'm very happy in the sense I have a surgeon who is at the top of his game, Dr. James Pacholka. I feel so comfortable with him in fact I'm coming to NYC to have the biopsy done just because he's done such a good job with any surgeries I've had done in the past. It's amazing how many times I've gone under the knife since this all started. First surgery was taking out a 3" mass in my right axilla that diagnosed me with Burkitts. That was followed with the surgical insertion of my metaport. After treatment, I had the metaport surgically removed. Right before my bday this year, there was an irregularity showing up in my neck, so I had a lymph node removed from the right side of my neck, that was in April. Now we will go under the knife again tomorrow to find out what this lymph node holds in store.

My oncologist has been very vague about exactly what Castleman's Disease is and I'm having a hard time understanding it from what I read online. From what I understand it's a disorder of your lymph nodes that can or cannot be cancerous which is why the biopsy is needed. My hopes are that it is not cancerous. If it is, then I'll have to start chemotherapy again.

Another good thing about Philadelphia is we have Fox Chase cancer center which is one of the best in the country. My plan is to have my surgeory in NYC, then have treatment in Philadelphia if necessary. All of my energy and prayers are that I won't need to go through another round of chemotherapy. I'm sincerely hoping this will be the case.

Wish me luck in surgery tomorrow. Thank you for all of your support and good energy & prayers. I appreciate it and am sending the love right back to all of you.

Happy Birthday Sweet Pea..

It's been a cloudy and rainy day in Philadelphia today... the perfect type of day to cuddle up with your other half and watch movies and just cuddle close. We did both, cuddle up on the sofa and watched 'Charles Wilson's War' and 'Speed Racer'... both great movies. I have a case of being a night owl on the eve of Greg's bday. We have some more fun movies lined up for tomorrow in case it's another rainy day in addition to some other surprises for the bday guy!

It's funny to think that it's been almost five years now that Greg and I have been going out and officially married in San Franciso this past summer before Proposition 8. You see... 'sweet pea' as I like to call him is on of those rare types of guys who come along once in your lietime and I've never met such a beautiful human being in my life. After having this time to get to know both Greg and his family, it's easy to see where it come from as his family is just like he is, warm hearted, accepting and loving. He has one sis just like me on his sis is older where as mine is younger. I adore Greg's mom and dad, they live in Florida and we look forward to many more trips home to see them now that we have a more feasible cost of living.

Today, 'sweet pea' turns 32 and I have a few tricks up my sleeves, but unfortunately also have this black cloud lingering over our heads as we celebrate. It's days like this that I just pray there was no cancer or disease in this world at all. I've waited my whole life to meet a man as caring as Greg is and don't plan on losing sight of that now.

I just want to take a moment to pay homage to the man who's been by my side through my happiest days and the roughest, the most playful and days I wasn't sure where my next step was going to come from. A truly beautiful person inside and out. An inner light about him that just radiates people to him from his smile, kindness and ability to make anyone feel comfortable without even knowing them.

I'll never forget the night we met, but I do know that I don't ever want to see a day where we lose sight of what attracted us to each other in the first place. Like any other couple, gay, straight, transgendered - I believe the foundation of any long term successful relationship is built on friendship and I'm so happy to call Greg my best friend in this world.

Whatever I could do for Greg today would just be material, so I wanted to share with everyone who comes to my blog the importance of having a wonderful husband, wife, friend or whoever that support system might be for you is.

I plan to make this the most special day for Greg. I hope to bring a number of smiles to his face and lots of laughter. One day it won't matter anymore who you love and we'll ive in a world where all that matters is that you make each other happy.

Until that day, I am very happy to have been lucky enough to met the man who makes me smile each morning and excited to come home to at the end of each day.

I love you sweet pea and wish you a happy birthday and upcoming year filled with all of your dreams coming true adn encouraging us both to get focused back on our own litle plan to secure a bright future together. I love you.

To all of my blog readers, say happy bday to my sweet husband, Greg ' Sweet Pea'

I love you... Brad