So I guess this is the post that most people have been waiting for for a while now. You may know already that I’ve known my diagnosis now since Thursday night when I had my doctor’s visit with a hematology oncologist in Allentown. This visit was originally set up as a “just in case” scenario if it was found out that I had what is called Primary CNS Lymphoma which was one of the two “options” I talked about in one of my past blog entries. Just for good measures, I’ll mention now that the other “option” of diagnosis up for debate was still that there was some sort of meningioma in my brain. It was either a Grade 2 meningioma which was the abnormal cells, (not benign in nature and not yet malignant, rather sort of an “in between”) or a Grade 3 meningioma which would indicate malignant cells. The only real difference between the two was how they would be treated to get rid of them.
Anyway, at this point I want to mention WHY I waited until today, (Tuesday the 4th), to post this blog when I’ve known my diagnosis for 6 days. There are two answers to this inquiry:
1- I have literally not had the TIME to sit down and write this entry; you’ll see in a few minutes how LONG this story is from beginning to end. Since Thursday, I have had plans I’ve made with friends including New Years celebrations, so I physically haven’t been home long enough to write this entry. In addition, when I am home there are continually family and friends stopping by for visits that I also need to physically be present for to tell the “story” of my diagnosis to them! Oh! And did I mention that now that the steroids I have been taking since my surgery that kept me AWAKE for 3 ½ weeks, are completely out of my system, (I’d say this happened last Wednesday), I am EXTREMELY exhausted causing me to start my day, (regrettably because I could sleep all day), at 10am instead of 6am.
2- The #2 reason I have waited to post is probably the more important reason, in theory, that I waited to blog about my diagnosis. This reason is frankly that I felt guilty that my good friends who have been there for me through this ENTIRE thing, would be finding out through my BLOG (instead of talking to me directly), what my diagnosis was. So I thought I would take the appropriate amount of time to either see or talk to all of these people on the phone between Thursday night and when I was set to start my treatment, (which, **spoiler alert** is TODAY, the 4th!) BEFORE I let the rest of the world know on my blog.
*Side note: My parents have been updating my extended family members so they have known my diagnosis through direct contact or relayed message since Thursday or Friday.
The problems with my idea to contact my friends directly is the same kind of thing that I mentioned what has been going on since Thursday under my #1 reason above; I actually RAN OUT OF TIME to contact all the people I intended to directly!! Between a combination of me not being home because I was out seeing my friends to tell them face to face, celebrating New Years both on NYE and New Years Day, friends that I normally would see being sick or out of town, me visiting with the visitors at my house while I’m home, or me sleeping haha!, I did not have the chance to tell everyone that I wanted to. Bring on that guilt again!! I know the people who I didn’t get a chance to talk to or see know who they are and hopefully they understand that I really DID want to tell them before I shared this on the blog.
Anywayyyy (that’s going to be the word of the day I think), are you annoyed at me yet for not just getting to the DARN POINT?! I know you are busting at the seams to know what’s actually wrong with me! Well… I do, in fact, have what’s called Primary Central Nervous System Lymphoma which is considered a cancerous condition. Let me mention first that this type of cancer is present in the Central Nervous System, which consists of the brain and the spinal cord/spinal fluid. In the tests I had done in the past week, they found that do NOT currently have any abnormal or cancerous cells anywhere else in my body besides in my brain (and possibly my spinal cord hence the CNS part). They will look to see if it’s in my spinal fluid when I go in for my first treatment, but regardless, the treatment is the same whether it’s in there or not. The fact that the cancer isn’t in any other part of my body is a GOOD THING because the treatment can be more focused on one area. A few other tidbits to note: Primary CNS Lymphoma is one type of non-Hodgkins lymphoma and there are many of those. The important thing to remember is that right now the “bad” cells are in my brain only, and that benefits me right now for my treatment. The other tidbit that doesn’t have a place anywhere else in this story is that, (and prepare to have your mind blown by the following statistic), there are roughly 45,000 people who have some type of non-Hodgkins lymphoma in the world. 1% of these people (i.e. 450 for the non-math majors), have Primary CMS Lymphoma which again, is my diagnosis. Further, most patient with CNS Lymphoma are over the age of 50… Soooo that makes me a RARE egg people!! But come on, if you ever met me, didn’t you always think this?? J
What’s next to tell??
Treatment Explanation and Process
I know when I explained this the people I got to talk to after we still had the two possible options and were waiting for the diagnosis, I said that if I ended up having this CNS Lymphoma that it would be treated medically with the same medication that is sometimes used for Rheumatoid Arthritis patients. This is still the case, but in my specific situation/course of treatment, this medication will be given in HIGH dosage form. When it’s given in high dosage form it is actually called chemotherapy. Now, usually chemotherapy is considered to be more severe than radiation and it IS with certain types of cancer. In my case, it’s different (surprise, surprise). The goal of radiation in general is to completely destroy tissue (mainly tumors as opposed to cells and DNA). So this is GOOD for destroying tumors in other parts of the body (leg, skin, organs that can do without parts of them and still function). But it is NOT good to destroy tissue in the BRAIN because then permanent damage results (memory loss, speech function, or any cognitive abilities). We do NOT want that. Because when I get through treatment and am able to live the rest of my life, I want to be ME and have the same personality, intelligence and all that good stuff J. Besides, the type of cancer I have currently is more of a blood/DNA/cellular/immune system deficiency and NOT a tumor. The way you kill these bad blood/DNA/cellular “things” is through this high dosage medication. So that’s what I actually started today (Tuesday Jan. 4th). It’s a treatment which entails me being in the hospital for 2-4 days at a time. I arrived at the hospital earlier today at 3:30pm because that’s when a bed at St. Luke’s Hospital where I’m receiving my treatment opened on the oncology floor where nurses and staff are trained thoroughly on administering chemotherapy.
*Side note: The treatment for CNS Lymphoma pretty much ALWAYS starts out the same. And it’s with the treatment I’m getting called high dose Methotrexate. This treatment is standard and administered the SAME everywhere you go. So yes, St. Luke’s has all the equipment and facilities I need to adequately receive my treatment.
When I got to the hospital, I was admitted to a room, and I had a PICC line inserted by two nurses. I’ll probably do a small post about the PICC line insertion and my experience with that at some point, but for right now I’m referring you to the link above. Basically it’s a type of IV, but the tube is actually run through a blood vessel in my arm, inside my body up to a vein near my heart so the medication administered is more directly and affectively running through my body (mainly my brain to kill the cancer cells). After this line was inserted, I had to have an X-ray done to make sure the PICC line was inserted correctly and sufficiently enough for the medication to be run through it. The x-ray itself took all of 5 minutes but since it was dinnertime for the aides who take you to and from the radiology floor, I didn’t get back to my room until nearly 6 o’clock! I then ate some hospital food for dinner and they then started an IV drip at 6:30pm which is currently “pumping” saline, etc. to hydrate me. After about 6 hours when I’m hydrated, I’ll start to get the chemo meds through my IV (PICC line), again, called Methotrexate for a full 24 hours. That brings me to approximately 12:30 am Thursday, (kind of like Wednesday), night. You didn’t think you were getting a math lesson today, did you??
While we’re here, let’s talk about that chemo medication (Methotrexate)…. Chemo meds KILLS the cancer cells but they also kill good cells (mainly your white blood cells). White blood cells prevent infection so you need for them to be up to a certain level so you don’t get sick. To return my white blood cells to a point where it is “safe”, I will then receive an antidote to the chemo meds for as long as I need to get my cell count to this certain level where I can “take” the outside world and all it’s germs. As soon as these levels are reached and I am hydrated adequately, I will be discharged from the hospital to go home. I will definitely be in the hospital Tuesday and Wednesday nights. Thursday night at this point is questionable because again, you leave when your blood levels and hydration is adequate. They say the whole treatment process takes 48 hours minimum to complete and that bring me to 6:30pm on Thursday because of when I was admitted into the hospital today. BUT that doesn’t mean I’ll be actually be discharged then. It’s different in everyone and basically depends on how your body reacts to the medication. PLUS there is the issue of what time is the cutoff at night for discharge to happen. We’ll cross that bridge when we get to it…
So looking more into the future it does get a little more complicated with the treatment schedule… I will receive treatment for 2-4 days this week and then I will have next week “off”. What happens on “off” weeks is that I will be home but have my blood levels monitored I think only once next week to make sure the white blood cell levels are okay to start the next week of treatment. Once they’re adequate, (basically that they can “handle” more chemo), I will start the next 2-4 days worth of treatment in the hospital. It might not be on a Tuesday like it was this week, it’s whenever your body is ready for it. So I’ll go every other week for treatment , 3 times for a total of about 6 weeks. After those 6 weeks I will have an MRI on my brain done to make sure the treatment is working and killing the cancer cells in my brain. They expect this to work, because it typically does for CNS lymphoma patients. After these 6 weeks however, they automatically do ANOTHER round of the same treatment, (alternating 3 weeks treatment, 3 weeks “off”), just to make sure that they get everything either not showing up on the MRI or cells in the process of developing. A lot of people at this point, (after 12 “weeks” of treatment), go into remission because their cancer is gone then. BUT, (you knew there was going to be one), if at anytime either during the first or second MRIs, they find that the treatment is NOT working and killing the cells as adequately and quickly as expected, there is a chance there will be a third round of 6 weeks that is done. Let’s keep our fingers crossed that this doesn’t need to happen because the longer you receive the chemo, the more likely you are to feel the effects of chemo i.e. hair loss, nausea, weight loss or gain, sores on body, etc.
“What Effects Will You Experience From Your Chemo Treatment, Casey?”
Thanks for asking!! J Again, it’s different in everybody because everyone’s bodies handle the chemo differently. The doctor told me that especially in the first and beginning of the second rounds of treatment, I will probably not lose my hair, but it may start to thin or chunks may fall out. It’s probably going to be emotional for me if this does happen, WHEN it happens, but for right now I’m really okay with my friends and family seeing me with no hair J I know you guys understand… I am looking into wigs for the “just in case” point in time when it maybe happens. And this is mostly for when I go out in public or for special events (Alison’s wedding) where I want to look good haha! In addition to that, I MAY have some issues with wanting to eat because food won’t taste the same. Instead it won’t taste at all or have a metal-like taste from the meds. They don’t expect me to have nauseas because they always give anti-nausea meds in the hospital when you’re in for treatment and they send you home with oral meds for nausea.
Let’s Talk About Remission!!!
So whenever you go into remission depends on when all your cancer cells are gone and your white blood cell level is back to normal. Once this happens, I essentially become myself again and can do anything I did before this whole ordeal started! You basically live your life during remission. Remission can go on for months, a year, years, or even 20 years! Again, it all depends on the person! CNS Lymphoma however, is a cancer that will come back eventually if it’s more aggressive in the specific person OR you live long enough for it to come back J So it’s basically the ultimate “living with cancer” situation which is scary to think about. But when or if it comes back, you start again with the treatment that I described above until it’s gone again! It sucks. NO DOUBT about that. But you gotta do what you gotta do!!
Visiting
Visiting is another thing that’s an “issue”. You might have gathered by now that while I’m in the hospital receiving the treatments, really the only pain I’ll be in is from the uncomfortable-ness of the IVs, nurses constantly coming in to administer the meds and check on me, and those damn beds!! (I will not sleep at all while I’m there). The time that you are “sick” is actually the “off” weeks when I’ll be home because that’s when I’m not in a controlled environment and my white blood cell levels are low. So I’m more prone to infection or contracting something like a cold, the flu or pneumonia, which wouldn’t normally turn into anything if I’m exposed to those germs, but because my immune system will be compromised, I can contract it more easily. With that being said though, especially with the first and second rounds of treatment, they told me that I really may just be TIRED and that I should live and do what I can (i.e. go out to eat or go see friends or have people visit). I’m just not supposed to have people come to the house or go around people who are sick or feel like they might be getting sick. I’m definitely going to WANT to see people and go places on days I’m feeling well enough during treatment periods. But who knows, I personally may, get sick for a while and can’t have ANY visitors. Yet again, it’s really going to be a day-by-day thing whether I’m feeling good enough for visitors or for leaving my house! Same with making plans to do things for the next few months. I’m definitely going to make plans to be at things and special events going on, but it might be the case where I’m not feeling well enough to go out if it’s an “off” week or that I actually need to go into the hospital that day for treatment, because I get too sick, or I become dehydrated. When I make plans and then am unable to actually go to them is going to be another really upsetting thing to me when the time comes. But what it comes down to is that it’s really important and top priority that I get my treatment NOW so that I get rid of this thing and be able to live the rest of my life!!
**Sighhhh**
See how LONG this story is?? Imagine having to that like A MILLION TIMES in the past 6 days! I hope you guys understand all of it and I explained it well. Sometimes I think that even though I know I understand it inside and out, I STILL don’t have it ALL down pat to explain it to others without leaving something out…
So ANYWAY, that’s that. If you DO have questions about anything, (and I’m sure you have one or two in mind right now), PLEASE email me at cem1414@gmail.com or send me a message on facebook. I don’t know if it’s practical to say that I will actually have time to get a full phone conversation in within the next few days I’m in the hospital with nurses constantly coming in my room to administer the meds or else I would say give a call. For short hellos and updates, email or texting will be best.
As always, I appreciate everyone’s support and positivity! This is will fall on deaf ears for many of you, but TRY not to worry about me too much because I’m going to be FINE! Sooner than you know I’ll be back to normal; stressed out by school, working with my snot-nosed kids, and going out to display my sweet dance moves on a regular basis! Talk to you soon!
xoxo,
*Casey
