Big Update

It's been forever since I've updated, so I figured it was time to jot down some updates and some thoughts.  My apologies to anyone that's been waiting for an update.

Since my last post I completed the 6th session of my chemo and had the gallium scan and the CAT scan that I mentioned. The gallium scan showed that all the abnormal lymph nodes below my diaphragm have disappeared (which were the lymph nodes that had made my diagnosis a stage III lymphoma), so that was very exciting news.

But the CAT scan showed that one little lymph node "just anterior to the right sub mandibular gland", remained unchanged from the previous CAT scan.  My oncologist indicated that the actual size of the lymph node would have been nothing to be concerned about in a patient that wasn't currently living with a diagnosis of lymphoma, but because I was dealing with the diagnosis, she wanted to be sure that we were doing everything possible to ensure that we were eradicating the cancer as best as we could. She ordered two more chemotherapy sessions!

A photo of all the salivary glands, showing the sub mandibular gland

Having to go through two more chemotherapy sessions was a huge piss off. They had had to increase my dosages of medications due to my [slight] weight gain, which was making me physically ill so much sooner during treatment then I was used to. Not to mention, my short-term disability payments had stopped, so I wasn't receiving an income at all (I was currently considered part time at work, so I didn't have any medical benefits to live off of). I made a deal with my doc. If she wanted me to continue with chemotherapy, she'd have to let me go back to work!  A deal was made, and I started session #7 the following day.

I'm now finished both sessions #7 and #8 and have been back to work for a few weeks. I also started on Neupogen, due to a small bout I had with febrile neutropenia shortly after my 6th session, and only have 3 more injections to deal with before that's all over.
I'm thoroughly enjoying being back to work. I feel like I have a purpose again. I've noticed that the care I've been providing is different then before I left. I've always felt that I was able to sympathize with the patients fairly well, and in no way am I saying that I'm able to empathize with palliative care patients, but I really know now what it's like to have nurses standing at the end of your bed, and I'm applying that feeling to my nursing.

The best news though is that I was recently hired full time at my hospital on the in patient oncology unit!! I'm so excited to start working there. I really feel that I'll have a unique perspective dealing with patients going through chemo and dealing with all the side affects and emotional turmoil that comes along with the fight.  There's a few palliative care beds on the unit as well, so I'll be able to apply my current skill set with those patients as well.

I have another CAT scan on June 21st and my follow-up appointment on the 23rd. I've spoken with my oncologist about what the plan is if the same lymph node still hasn't changed, and thankfully, we'll most likely just be going in and cutting it out to send for biopsy just to make sure that it's harmless. I really don't feel that more chemotherapy is necessary, but I'm willing to go through it if I have to - I really don't see any other choice!

I promise to update shortly after I have the results back from my next scan and my appointment. Until then, take care and keep smiling!

Second CT Scan

It's been a while since I've updated here, so there's a bit of information to share.
I had the second CT scan I mentioned in my last post, the results of which have come back promising.

Enhanced CT scan of the neck:
FINDINGS:
There has been decrease in size of cervical lymph nodes compared to the previous study 13-12-2010. For example, there is a 1 x 0.8cm level I lymph node of the left which measured 1.3 x 1 cm in size on the previous [scan]. The lymph nodes seen adjacent to the left submandibular glad in the previous study have decreased in size. The largest measures 0.9 x 0.4 cm compared to 1 x 0.7 cm on the previous. The left jugulodigastric lymph node is also smaller and measures 1 cm in AP dimension. The right level III lymph node anterior to the jugular vein is also smaller and now measures 0.9 x 0.4 cm compared to 1 x 0.9 cm. The lymph node anterior to the right submandibular gland is unchanged. The left parotid lesion is smaller and measures 6 x 5 mm in size compared to 1.2 x 1.1 cm.
IMPRESSION:
There has been a decrease in size of cervical lymph nodes and the left parotid lesion, possibly an enlarged intraparotid lymph node compared to the previous CT 13-12-2010

Overall, I'm quite happy with the CT, and really feel that after only three cycles of chemotherapy when that CT was done, my body has responded well.
As of today, I've only got one cycle left to complete before my regimen is finished and I've already got my 3rd CT booked as well as a Gallium Scan of my entire body to ensure that the chemo has done it's job.
I really hope that after my next cycle, I'm done with the chemo. I'm very much looking forward to returning to my regular life!

Half Way Done

As of Wednesday, February 9, 2011 at approximately 11:30am half of my chemotherapy treatments are complete!!
It actually feels like it's going very fast when I think of it in terms of it being half over.
I've started to notice some of the side affects.
My hair, which I normally keep shaved anyway, is not growing nearly as much as it should be. In fact, a weeks worth of growth now is what would normally be what grows over night.

I haven't had to shave my face in 2 weeks, and it still looks like I'm cleanly shaved.
I've lost a lot of body hair and the tips of my fingers are all numb.

All of these things are side affects that with time, once I've completed all six of my treatments, should gradually disappear. My hair will grow back (I wish ALL my hair would grow back, it'd be nice to be rid of this male pattern baldness!) and the feeling in the tips of my fingers should return within 6 - 12 months (I just have to be careful when I'm cutting vegetables in the mean while).

I have a CAT scan coming up in a week. It's been ordered to see if the the chemotherapy is working, to see if there's been any changes to my lymph nodes since the first scan I had before I started the chemo.
I'm looking forward to the results of that most, as I can't really tell on my own if the lymph nodes have changed a whole lot as they were really small to begin with.

I still haven't adjusted to being home all the time, and by that I mean, not going to work.  It's surprising how much my work has become a part of who I am. I miss my patients, and my co-workers. I get tiny glimpses of it when I'm doing my chemo, because I'm "in" that environment again, but it's different. Mostly because I'm the patient, the one who needs to be taken care of.
I have to keep reminding myself not to touch the IV pump when it starts beeping most times!

A Word About Being Strong

I'm pretty sure I'm not the only cancer patient that's been told a million times over to "be strong" or to "stay positive" when they're given a favorable prognosis. It's great. It's great that I get to hear it because it means that there's a really good chance that I'm going to come out of this alive, and as a nurse myself who deals with cancer patients on a regular basis, it gives me the opportunity to actually be able to empathize with them as they share their feelings with me.

It's also great for the people that get to say it to me. It gives them something "nice" to say to me, allowing them to convey that they love me, and that they care for me and that they hope that my "90% chance of lifetime remission" is true.

The other day, I received a card in the mail from a friend of my mother. In it she wrote; "cry if you must to feel better..."  and THAT was the first time anyone gave me permission to cry. To feel a little bit of pity for myself, to mourn the health I knew. It was a good cry too, dammit!

Crying that day (and again now as I type this), is cathartic. It allows me to get rid of the doubt that I hide sometimes when I talk about how positive my doctor is when she talks about my chemotherapy is working, or when I have to smile when someone else tells me to "stay positive" when I'm really not feeling positive that day at all.

I've been told by a few different people; "not to think that way", and "now, don't go putting that negative energy out there" when I've attempted to talk about my feelings toward having cancer or how I now have to live my life dealing with it. Those are all parts of what I'm going through and I have to deal with it everyday. I wake up every morning and am reminded that I don't get to go to work because it's too dangerous for me to be around sick people with my compromised immune system. My life is on hold and I'm not as financially stable as I was 2 months ago. It plays a little bit with my emotions every day, so please just let me be real about it. It's not going to change my complete outlook on me beating cancer.

Crying, or "being real" about it, or writing a post such as this one, doesn't make me any less strong. I'm human, and I'm allowed to breakdown every once in a while.  I will beat this disease that's in me, because I am strong and because I am staying positive. But I just wanted to say THANK YOU to Bonnie, for giving me permission to cry if I need to, and for letting me know it's alright too, because acknowledging the bad and ugly, and letting it go is one of the best ways to stay strong and positive!

MY Cancer

I figured it might be a good idea to do a post about my specific type of cancer, as there are so many different types of lymphomas that anyone doing a search for blogs, may or may not be interested in my blog specifically because of the type I have/don't have.

As mentioned in the subtopic of TOSOTN, I was diagnosed with a T-cell Large Cell Lymphoma. More specifically, it's a non-Hodgkin's anaplastic large cell lymphoma (ALCL).  The original diagnosis states: "findings are those of focal lymph node involvement by peripheral T cell lymphoma, anaplastic large cell lymphoma, CD30 positive, ALK1 positive subtype."

ALCL represents approximately only 5% of non Hodgkin's lymphomas in adults, and only approximately 60% of those are ALK+!!
Suffice it to say, of all cancer cases, there's only about 1.5 people out of 100 that are diagnosed with my specific type of cancer!!

According to one site I found, ALK+ ALCL presents as an aggressive disease with systemic signs, and extra nodal sites in the bone marrow (the bone marrow biopsy is a topic I could write a whole post on all on it's own!), skin, bone, soft tissues, and organs. Luckily, according to all the diagnostic tests I've had since my cancer diagnosis, I'm free of extra nodal sites!
ALK+ ALCL also has a far better prognosis then ALK negative ALCL.

My treatment consists of five different medications specifically targeted to treat my lymphoma. The combination of medications is usually referred to as CHOP chemo, a combination of chemotherapeutics and antineoplastic medications often used to treat many cancers; my doctor has also added etopocide due to some research that she had read and went over with me prior to beginning treatment.

The letters that make up the word CHOP, each stand for a specific medication; C: Cyclophosphamide; H: Doxorubicin (I have no idea where the "H" comes from!); O:Vincristine (aka: Oncovin); P: Prednisone. With the addition of the Etopocide, my chemotherapy is being called CHOEP!

The addition of Etopocide was a decision made by my oncologist and myself after she reviewed with me an article in the Blood Journal. The article indicates that the addition of etopocide can increase the chances of LIFETIME remission from my specific type of cancer, to almost 90%!!

All in all, I feel pretty good (as good as I guess anyone can feel about their cancer) about my specific diagnosis. I feel great about the fight ahead of me to beat my cancer, and really love all the people in my life that are helping me and supporting me every step of the way.

Treatment #1

Today I started my chemotherapy. It went a lot better and was much less traumatic then I thought it would be. It was nice to have my partner Chris there, and it was an added bonus that my mom and her husband are in town and were able to come as well.
The day started with blood work and a two hour wait for that to come back; we went for breakfast (which I'm very grateful for now as it's been the last full meal I've eaten all day) and decided to return to the waiting room at 9:30am.
At around 10am, my name was called and I was brought into the treatment room. I was settled into a very comfortable lounge chair and three other chairs were brought around for my family to be able to sit with me. My vital signs were taken and I took the dose of Prednisone that is part of my treatment. My nurse (how awful of me to have forgotten her name) then started my IV and ran a small bolus of normal saline. My first medication was then Zofran, to help with any nausea that I might experience (!).
I then had a dose of Cyclophosphamide and then my prescribed does of Doxorubicin (and later found out it's nicknamed Red Devil because of it's colour, and the effects it has on the poor suckers that have to have it injected into their veins), followed by a dose of Vincristine and then Etoposide. 
All in all, the actual administration of the medication went quite well, and in total only took approximately 5 hours, which is about what I had estimated, so was totally prepared for it.
This brings us to the drive home, and how the nausea started while I was on my way to find my mother as she was attempting to do me a huge favor and buy me an air purifier (my idea) and a juicer (her idea). I could feel my stomach start to turn a bit, and decided to take some of my anti-nausea medication that I had with me (prescribed by my doctor weeks ago), and take a moment for some fresh air. It seemed to work and I was good until I got home with my new air purifier and a rain check for a juicer (that's currently 50% off; who doesn't love boxing week sales, even after a chemo treatment?!). I sat on the couch and tried to will the nausea away (it was another 4 hours before I could take my Stemetil and I really didn't want to barf so I was willing to try anything).
That worked well enough to make me feel like I could have some whole wheat pasta and tomato sauce, and a few saltine crackers.
The nausea didn't like that and came back with a vengeance!  I fought with my stomach for about half and hour before I gave up and promptly ran to the bathroom, where I yaked up everything and more.  Surprisingly, I immediately felt better, rinsed my mouth and brushed my teeth and gobbled down some more crackers.
It was then time to take my Kytril and an hour later, I took more stemetil.
It's currently 10:55pm, just a little over 12 hours since my first chemotherapy medication, and I'm going to bed!  I'm exhausted, and I have to do another treatment of etoposide in the morning (it's 3 days of treatment for that one specific medication).
G'night inter-web world!