Camden Waterfront {New Jersey Freelance Photographer}

My son Jacob and I volunteered to photograph the Light the Night Walk for the South Jersey chapter of the Leukemia and Lymphoma Society last Saturday evening. We got to Campbell's Field early so we went down to the waterfront to take some pictures.







The Camden Waterfront is a cool place for photography. Then, as I look over the rail, into the the river, this is what I saw.

Sad! We have to do better my friends!

Vegetarians Less Likely to Get Cancer

BBC News reported today a study that says "Vegetarians are generally less likely than meat eaters to develop cancer but this does not apply to all forms of the disease, a major study has found."

"The researchers said they found marked differences between meat-eaters and vegetarians in the propensity to cancers of the lymph and the blood, with vegetarians just over half as likely to develop these forms of the disease.
In the case of multiple myeloma, a relatively rare cancer of the bone marrow, vegetarians were 75% less likely to develop the disease than meat-eaters."

You can find the full article here.

Cancer Update - follicular non-hodgkins lymphoma

I went to the oncologist today to find out results of my recent scans and blood tests to see how well I responded to my latest treatment of 4 rounds of Rituxan. I did not receive as good news as I was expecting. The cancer did not respond as well as it did the last time I received this treatment. I was kicked out of the clinical trial because my response wasn't high enough.

The good news is, I did get a decent response just not a great one. Now I have a decision to make about how I want to proceed. I am leaning toward doing maintenance Rituxan. I would receive one infusion every 3 months for the next two years to try and keep the cancer in check where it is now.

A decision will be made by the end of the week.

Feeling Good

I have finished my cancer treatments for follicular non-hodkins lymphoma. My recent blood work last week looked pretty good. My energy has come back and I am feeling great. I go back in two months to get scanned to check on the size of the tumors. We need to make sure the treatment worked. I know it did but I do not know to what extent. So, life back to normal again for a little while!

View from a Cancer Patient

My cancer treatment went okay yesterday. I didn't get as sick as I did the first time that I had this treatment 1 1/2 years ago. My blood pressure did drop but not dangerously low like before. I got the chills and achey but no vomiting. Yay!
I took my camera with me yesterday to the cancer center. I thought I would capture a couple of shots from the cancer patient's point of view.

In the parking lot

The view out the treatment center's window. Nice view, it's a shame you can't see it from the chairs we sit in during infusions.

The view from my chair I sat in all day. Not many people were there at first.

Then more people came in for chemo and the chairs began to fill up as I lay back in the recliner fighting the drowsy haze that I am in.

Looking down at my IV site in my hand.

Then looking up at my IV pole holding the magic drug flowing into my body that will kill many white blood cells that became confused and instead of fighting illness became a cancer. Unfortunately it can not kill all of these cells but enough to buy me more time.

Looking up at my ever faithful husband who is by my side, listening to his tunes on his MP3 player.

Back to Reality

I had a great vacation with my husband and kids!
Thank you to everyone for the comments and emails sent letting me know they are thinking of me. It means so much to me!
We arrived home late last night and tomorrow it is back to reality. The kids go back to school and I go to the cancer center for my first infusion.
I hope to share some images from my trip this week and will update on how things go tomorrow as soon as I am feeling up to it.
Sending much love to all who read this!

follicular non-hodgkins lymphoma update

I had a scan done earlier this month and the day after Christmas I went to see my oncologist. The scan showed the cancer is growing. This was not a huge surprise to me since I have been feeling lymph nodes popping up in my neck and clavical.
I will be starting treatment Jan. 12th, right after we come home from a vacation that we have had planned for nearly a year now. I will be doing 4 more rounds of weekly Rituxan immunotherapy infusions. Since I am in a clinical trial this is the route we will go. I could pull out of the trial and go a different route but I feel pretty confident that this is a good way to go and I am a firm believer that clinical trials are important. However, if I felt there was definitely a better way to go then I would pull out and do that.
Unfortunately, there is no sure fire way to go with this cancer. No matter what you do, it will grow again. The treatments will knock it back only to grow again, as of now, there is no cure. So, this is the road I will continue down until Rituxan stops working at knocking it back for me, then it will be on to much harsher methods of chemo. Radiation and surgery are not an option for me since the cancer is through my whole lymph system.
I am hoping I will get more then 18 months with this round of treatments. So, please think of me and pray for me on the 12th of January. The first infusion is the roughest as I had some scary side effects last time. Hopefully it will go smoother this time.

Lymphoma Awareness Day

Today is Lymphoma Awareness Day. It is very common to not be diagnosed with Lymphoma until it is in the later stages, like with my case. As with every cancer, early detection can make a huge difference.

WHAT’S LYMPHOMA?

Lymphomas are a family of blood
cancers affecting lymphocytes –white
blood cells that normally protects you
from illness.
The abnormal lymphocytes can
accumulate to form tumors, often in the
lymph nodes, but also in the bone marrow
and other parts of the body.

WHAT ARE THE RISK
FACTORS?
The causes are not known. Risk factors
associated with lymphomas include:
o Immune suppression
o Persistent inflammation/chronic infection
o Aging
o Environmental carcinogens – nitrates,
fertilizers, PCBs and other chemicals are
suspected

WHAT ARE THE
SYMPTOMS?
The symptoms vary by type and locations
of the tumors.
Some common symptoms (which can
often have other causes) include
o painless lumps in the neck, armpit and groin,
o drenching night sweats,
o unexplained persistent fever
o unexplained weight loss
o red skin patches
o chronic fatigue
o low blood cell counts

ANYONE WE KNOW?
Reflected in the high incidence rates is the
number of famous and notable individuals
who have been touched by the disease,
including Dick Gregory, King Hussein of
Jordan, Charles A. Lindbergh, Roger
Maris, Jackie Kennedy Onassis, Joey
Ramone, Senator Fred Thompson, Paul E.
Tsongas, and Gene Widler.

HOW MANY TYPES?

In Hodgkin's disease, the abnormal
lymphocyte is the Reed-Sternberg cell,
which isn't found in other types of
lymphomas.
All other types of lymphomas are called
non-Hodgkin's (NHL).
There are about 30 types of NHL.
The main clinical categories are
aggressive grade (fast growing) and
indolent grade (slow growing)
Indolent lymphomas can transform to
higher grade.

The most common is aggressive
diffuse large b-cell lymphoma.
The second most common is indolent
follicular b-cell lymphoma

The stage at diagnosis is often
widespread, however lymphomas are typically initially sensitive
and responsive to chemotherapy,
radiotherapies, and biological therapies.

Some sites you can go to for more informatiopn about Lymphoma are
http://lymphomation.org/
http://lymphoma.org/
http://www.leukemia-lymphoma.org/

We Want the Truth

I just read an article at CNN. It was about Oncologists not telling their patients when the time is nearing the end and there isn't really anything left they can do. Giving false hope that they will get better. Now, this isn't refering to my own situation. There are a lot of treatment options for me right now and over the next few years. But there very well may come a time that those treatment options are no more. After a while, they lose the effect. Do I want to be told when that's it? No more treatment options are available for me? I sure do!! I hope this study that was done changes the way many Oncologists address this to their patients. When there isn't any more treatment options, I think the patient has the right to know. I certainly wouldn't want to live the last days of my life hooked up to machines, hanging on by a thread just hoping that I will get better because my doctor tells me there is still hope. I would want to be home with my family, living life as best as I could, even if that means my days on earth would be less. How much better would those extended days be if I were looked to machines, half awake, not able to talk?
I watched The Bucket List the other day. It inspired me to write my own "Bucket List". Fortunately, I have many days left to complete my list before I kick the bucket due to FNHL. Ofcourse, we never really know how many days we have left. It could all end in the blink of an eye. Until then, I will live life, I will enjoy life, I will dance like there is no tomorrow (not in public though, it is a scary sight) and I will make sure my husband knows my wishes for when my time does come near to an end.

Cancer Update and a Mommy Brag

I went to the oncologist on Wednesday. The good news...my blood work looks good, the scan showed that there has been nosignificant change in my pelvis, abdomen and chest areas. The bad news...there is growth of the cancer seen in my neck area. That was not a surprise. I was expecting to hear that since I can feel the lymph nodes enlarging there. The good part of the bad news...the growth is not severe enough to need treatment at this time.
So, I can continue on "watch and wait" with no treatment at this time. I will go back in 3 months unless I start feeling worse or have more symptoms or feel lymph nodes becoming too large. This was pretty much what I was expecting to hear, so I am happy.
My youngest son's promotion ceremony was this evening. He is going from the elementary school to the jr./sr. high school. What a blessing that was to see. At this time last year, my middle son was promoted and I was in treatment. Very glad I did not need to be in treatment this time. My prayer is I will be here to witness my daughter's promotion to jr./sr. high too.
A little Mommy brag moment here...My son had straight A's all year and won a special award for academic achievement in Social Studies. He was also voted "Most Musical" in his class.
WTG to my Doodlebug! I'm so proud of you!

The Risk of Hair Dye

I don't know why I was surprised when I first read about hair dye possibly increasing the risk of certain cancers, including follicular non-hodgkins lymphoma. Chemicals being applied to the skin, ofcourse there would be risks. So now my question is, does dying my hair increase my chances of the cancer spreading or growing since I already have FNHL. The answer I would assume could be yes. I suppose that means I may be sporting some grey hairs soon. Unless I can find a healthier alternative. Here is an article about it.
If anyone has experience with natural hair dyes, such as henna. Please let me know about your experience with it. Here is one place that claims to sell natural hair dye. I may give it a try.

Another Scan

I went for my ct scan to check on the growth of the cancer today. Drank a bottle of barium, one hour drive, get poked, radiated, go get a BIG drink to try and flush all that out of me and try and get home before the runs hit me. I always get the runs from this stuff passing through me. Was that too much information to share? Probably...but since I went there...have you ever had to go poopoo soooo bad and you are driving in the car with no place to stop and go potty? So you drive while clenching your butt cheeks together just hoping and praying you make it home before you explode...Ah, good times.

Update On My Health

My postings have slowed down because I have slowed down. I have become very tired over the past two weeks. The fatigue the past few days has been pretty bad. I have a pain in the back of my neck that feels like it did before the treatment I had for the cancer.
I have scans coming up in just a couple of weeks so I will find out if the cancer has grown more. I really was hoping to get more then a year from the treatment I had last May and June. Hopefully I am battling a weird bug or something and not that the follicular non-hodgkins lymphoma is growing again.
Summer is coming and the kids are getting out of school. I have begun gardening and landscaping, working on the enchanted forest garden, I do not want this cancer to ruin my summer like it did last year.
It has been raining almost every day for the past week. Great for my plants! Maybe it wont rain tomorrow and I can get to take some pictures of flowers.

Good News!

I went for my check up with the Oncologist this week. Good news to report. The scan showed that the cancer has not spread at all. There has been minor changes but nothing of significance. Nothing that would indicate that the lymphoma has progressed.
My blood tests came back good also. I just need to continue with iron and B-12 supplements twice a day.
I have graduated to getting a scan in 6 months instead of 3 months, which is very good in the light of a recent study that shows that multiple ct scans can cause cancer. That put people with lymphoma in a bind since we very often rely on scans for tracking the cancer and if it is spreading or growing. I can not worry about that however, I am just glad that I have 6 months before my next scan and I have until March before I need to set foot back at the cancer center. As long nothing changes ofcourse.
Thank you for all the support and encouraging words from all of you. Please continue to keep me in your thoughts and prayers. It is very much appreciated!

Scanxiety

I have been a bad blogger lately. I have been a bit depressed and stressed out worrying about the scan that I had upcoming to check on the cancer. I learned there is a made-up term that lymphoma patients used for the anxiety that we have before scans to check on the progress or lack of progress of the lymphoma. They call it "scanxiety".
It has been 3 months since my last scan. I went yesterday for the scan and for about 2 weeks leading up to the scan I was (and still am) quite the stressed out mess. So yesterday, 2 hours before my scan time I needed to drink a bottle of barium. A note to anyone who has never had barium scans, if you ever do...make sure you chill the barium and drink it cold. When it is warm it is enough to make the strongest stomach turn. Chilled, it is managable for me.
My Oncologist is an hour drive from my house. When I left for Delaware yesterday morning it was very very foggy, drizzly and just dreary. Driving over the Delaware Memorial Bridge I could not see anything off the side of the bridge and maybe only 20 feet in front of me. I was extremely stressed about the scan and felt like I was driving to my death with all the mist around me. My overly dramatic mind takes me to these places once in a while.
I was almost in tears when the radio station I was listening to went completely static. So I hit the button to just go to the next station. What could possibly be the perfect song that I needed to hear at that time? "I Will Survive" by Gloria Gaynor. It completely picked up my spirits. It is amazing how music can do that.
So tomorrow I will find out the results and hopefully I will have good news to report.
On a side note, thank you to all the people who have either emailed or called me asking if I was okay because I hadn't posted to the blog. It warmed my heart that so many people in the past few days have contacted me saying they missed me posting to the blog and were worried about me. I am going to try to keep to posting regularly again.
(((hugs to all)))

No Stealing My Minutes

The other week I was at a little girl's birthday party from my daughter's class. While there, visiting with a couple of the other mothers, one mother tells me about the Red Box rentals at the local Acme store. The Red Box has new release DVDs for rent for just $1.00
The next time I was at Acme I saw the box and decided to try it out. So, I rented a movie for 1 dollar. It had to be back in 24 hours. We watched the movie that night and I went to take it back the next day. I had just done food shopping the day before when I rented the DVD so I was just dropping it off. As I was walking in the store a woman and a child were walking in front of me. They went right to the Red Box and started looking through the selection of DVDs.
I waited behind them. After about 10 minutes, they had gone through all the selection of DVDs and couldn't decide what to rent and hit the button to start all over again. I politely asked if she would mind if I just dropped the DVD off real quick since they were starting over. (It only takes a second to drop the DVD off but you can not do it while someone else is using it)
The woman became very irate and told me how rude it was for me to ask that. I was so taken aback. I said I was sorry and that I thought it would just take a second and was only asking if she minded. Obviously she did mind so I would wait.
She turned to me, apparently annoyed that I was still standing there waiting to drop off the DVD and yelled at me to go shopping while they finished choosing what they wanted to rent.
Flabbergasted, I said, "Wow, ok...have a nice day" and I walked away. I didn't need to do any shopping, I was only there to drop off my DVD but I didn't need to be yelled at either so I walked around the store and just watched to see when she left.
After I saw she had left, I dropped off the DVD which literally took 2 seconds. On my drive home I was steaming over how the woman treated me. Had I known asking if I could drop off the DVD would have gotten such an angry reaction from her I never would have asked. I kept replaying over and over in my head, getting more and more angry over how she acted.
Then I realized what I was doing...I was letting this bad experience steal my joy, steal my minutes of my life. I decided I need to have a talk with myself. Now, I am not a person who talks outloud to herself all the time but this was a time I needed to.
I said, "Jane, this is not what life is about. DO not let this woman and how she treated you ruin your day. Do not let it steal another minute of your life. Do not allow yourself to go home to your family in a bad mood because of this. You have Follicular Lymphoma, a cancer with no cure. You do not know how many minutes you have left. Do not let those minutes be wasted being angry. You should have just waited patiently and not have even asked to pop the dvd in. Enjoy your minutes, don't let them be stolen away."
I went home and hugged my family. This was the first and only moment that I became grateful for what cancer has shown me. Had I not known that I have Lymphoma, I may not have taken the time to think about how I was letting time be wasted by my dwelling on a bad encounter with someone.
So for that... Cancer, I thank you...
I thank you for that lesson learned.

Reasons for Hope

There are so many ups and downs in dealing with this cancer. Over the past few weeks I have felt the enlarged nodes in my head, neck and chest go down to what feels to me close to normal size. So, I was terribly surprised to find a rather large lump in my abdomen the other night. The largest one I have felt thus far. Why are they going down in one area and growing larger in another? That is not a question that I have an answer to yet.
Just as many articles can stir up fears in follicular lymphoma cancer patients of it being incurable, dying an early death, ect... I am also reading many more that are able to stir up hope. More and more treatments coming along that are giving follicular patients longer and longer response times and even remissions. Today I read of treatment with Bexxar again. Trials have been done that shows a few years of remission after treatments with Rituxan and convention chemotherapy stops working. There are many treatment options available and more and more becoming available each year. It is very good to read such articles that give hope in available treatments.

Positive Thinking or Denial?

New York Times article on Non-Hodgkin's Lymphoma

The cancer I have, Non-Hodgkins Lymphoma was written about recently in the New York Times. Every time I read something about it, it smacks me the face with the reality of it all. It is a short article and reads easily to understand the basics of the disease. Reading yet again, "cannot be cured" and "typically, patients survive about 10 years after their initial diagnosis" Yes, some have survived longer but that is the average 7 - 10 years.
I try not to think about those things and yet I know I have to. I need to make sure my family is prepared. If I make it to 10 years my youngest child will then be 14 - 15 years old. This is one of those dark days that I have to force myself to face what may happen and to think about what I can do now to make things easier for my family to go on without me later.
I try to stay positive most of the time but where do you draw the line between staying positive and being in denial of reality?
I used to say that denial was my friend. Denial helped comfort me from painful thoughts and memories. Denial has now become my enemy, something I feel I have to fight right along side my fight with this incurable cancer.

Updates

I have finished the 4 rounds of Immunotherapy. Now I have 8 weeks to wait until scans are done again to see how the Lymphoma reacted to it.

We were ready to take our house off the market, after 1 year and 1 failed contract when we got another offer. We came to an agreement on price so hopefully this one will work out. If all goes well we will be moving in August. Cross your fingers that this goes smoothly! I don't think I can handle much more stress in my life right now.

Since I have taken last June and July off from doing any paid photography sessions I have been torturing my daughter with being my model. Here are a few I did outside the other day.

Anxiety

This is the night before my last infusion of my 4 week treatment with Rituxan. Each night before the infusion I have trouble sleeping and feel a lot of anxiety. I can't imagine the anxiety I will be feeling after I wait 8 weeks, get scans and am about to go back to the Oncologist to find out what if any effect the Rituxan has had on my Lymphoma.

Oncology nurses are some of the most amazing people. What a emotionally draining job that must be for them. As I sit hooked up to IV recieving my infusion, I often hear the nurses gently talking to patients who have so many questions and fears. Often they are afraid of treatment and the nurses are encouraging. Then you have the cancer patients, usually those who have been through this a while, that take it all in stride with such possitive attitudes. Im sure they have their bad days, their ups and downs, like everyone else. But you can see the interaction between them and the nurses, the joking and light-hearted conversations, those patients put pep in the step of the onc nurses. They brighten their day.

So kudos to those onc nurses and kudos to the possitive bright patients and kudos to those patients who are struggling but are brave enough to face their cancer, it is easier to live in denial then to face it and fight it.

I have no photos specifically for today so I'm just going to share a picture of Joker, our cat, because he makes me smile.