Well, this blog post is not quite as fun as the rest. This one is very hard, actually. Many have wondered lately if I am ok because of my major slow down on the postings of all of Zane's fun days and our fun times with him. I have not been ok. But I didn't know why until recently.
On May 20th I was diagnosed with Hodgkin's Lymphoma. (Click link to learn more.)
I have for several months now been dealing mainly with some large, tender lymph nodes on the left side of my neck. I have also been unbelievably tired so that I have actually had to force myself to join Zane during half of his nap in order to make it through the rest of the day. I have been back and forth to my GP several times doing all sorts of testing (TONS of blood work, x-rays, CT Scans & an MRI - the MRI was a terrible experience. Not because of the closed in tube but the absolutely unbearable noise!) All came back with a negative reading. I was supposedly ok BUT I still had these crazy large lymph nodes that were getting larger and more tender. So, my GP sent me to an Ear, Nose and Throat specialist. She put me through all sorts of more blood work all with negative results with the exception that my Epstein Bar levels were elevated. Nothing anybody was concerned about but at that point most were convinced that the problem was some immune system dysfunction. I was too, but I also had this feeling like I needed more convincing of that mainly because all through this the words "lymphoma or leukemia" kept coming up but no biopsy was in motion. My ENT just kept telling me to come back in 3 weeks so she could follow-up and measure the nodes again. Oh, and she told me not to touch them (so easy with a 19 month old, right?).
After several weeks of this game she said she was going to send me for a white blood cell count. If it was elevated she would biopsy because that could indicate possible lymphoma and leukemia. (WRONG!) Well, my blood work came back fine and at that point we had our words because of her handling of getting the results to me which (THANKFULLY) sent me on a mission to find another ENT. I just wanted someone to look at me and tell me, "no, you do NOT have cancer and I know this because...". But also, come to find out that blood work of any kind can only have indications of 2 types of cancer... leukemia (so we ruled that one out) and prostate cancer (no worries here!). But I did not find out this news until I ventured out to my second opinion. This blood work in no way could rule out any sort of lymphoma!!
So at the recommendation of my boss, Larry's wife, Denise (they have both been my angels on this journey) I went to see a new ENT that changed my life forever in so many ways. In one appt. with him he listened to the history and took one pat-down of my neck and knew I had lymphoma of some type. Of course he didn't tell me that then, but he immediately wanted me in for a biopsy (full removal) of two of the nodes. I went in to him on a Thursday and the next Tuesday he was cutting out my lymph nodes. He was not messin' around. He even had this all set up so that they did a frozen section right away on the lymph node and were able to tell in 20 minutes if it showed any signs of lymphoma. When it did, he had them follow up with a bone marrow aspiration so that could be done while I was still under anesthesia (thank you, doc!). The bone marrow results would be an indication of whether I was a possible stage 4 (there are 4 stages of Hodgkin's lymphoma and 4 being the worst because it is in your bone marrow).
I awoke from the surgery and my mother and grandmother, Varrell, walked into the room immediately and all I had to ask them was, "Did they do the bone marrow?" I have recovered from the surgery and the ENT did a fantastic job on the incision. I believe that it will result in only minor scarring. You may not be able to see it in a couple of years. BUT, not sure about the rest of me...
(Me after my surgery with my crazy tube going into my incision! Crazy! That is no longer around, thank goodness!)
I am now with a terrific oncologist here in Naples. The next step is called "staging." They have to determine what stage I am. Like I said before, there are 4 stages with Stage 4 being the worst. We will see, but it is good to know right away that it is not in the bone marrow. It is also good to know that this is the most curable cancer there is. I keep saying that it is so odd to say this, but if you are going to have a cancer, then this is the one to have. They have come a long way in the past 20 or so years with the treatments of this cancer and the goal here is to actually reach a full cure (not just remission). But really, no one will know. Only time will tell that one.
So I have been totally overwhelmed by testing. I have had blood work, Neck CT, Chest and Abdomen CT. I go in this week for pulmonary function testing and a full body PET scan.
I have had an enormous amount of support and help. Paul has been so strong through all of this and has been my big positive rock. This is totally scary but what can we do? We just have to do.
My family has been incredible with strong support from my Mom & Pete. My Mom along with Paul will be going with me to most of my important appointments mainly because there is just so much information that I actually feel like I NEED 2 more heads working on this keeping track of things and asking questions. That is, when the poor Mama gets over pneumonia! I tell you, what is happening to us??!!??
I have an amazingly strong and powerful "Gradeau," (Varrell, Pete's mother) who talked to me and kept my mind occupied while I waited for my surgery to begin and waited with my Mom and helped her absorb the news from the doc. I just cannot love her enough. She cooks us homemade chicken soup that is just the most relaxing thing in my house right now.
Like I mentioned before, Denise, the wife of my amazingly supportive boss, just so happens to be an oncology nurse. She works in the office of the doctor I am going to see and she has been an angel to me... Sitting in Starbucks with my Mom, Paul and me for 3 hours answering question after question and more. She and the other nurses watched Zane for me for almost 2 hours during my first appt. with the oncologist (Zane was SO good and such a super-star! I think they will have him back again). Never flinching when I call her at 10pm with the news that I had a rash covering the whole top half of my body that was making me crazy with itch, heat and pain. (Possible reaction from injections from CT Scans... GREAT! I have to have these a lot, I think!) Dealt with that this weekend when I thought we would have a quiet, non-medically focused weekend! She has been great and I get to see her positive, smiling face every time I walk into the doctor's office. Can't beat that!
I have had such support from great friends and wonderful phone calls from so many cool and wonderful people. I am sure I will need more.
Beyond the obvious, I have had to deal with the reality that I was being forced by this disease to wean my son (and me) from breastfeeding. It has been over a week now and so far until recently has been rather easy but now I think the loss has kicked in the for poor kiddo. It wasn't something that he needed often but it was a thing that he looked for in times of exhaustion, hurt or when he just needed to cuddle and be loved. Me too. This has been supremely hard.
So now we wait till these tests are completed and we wait to hear the course of action. It will definitely be chemotherapy with possible radiation. Time frame could be anywhere between 5-10 months.
So, some of you may wonder what the hell I am doing publishing all of this on our blog. Well, I thought about it a lot and we have many reasons. Number one reason is, this is what is going on in our lives right now. This is the most important thing we are dealing with right now. Also, this is a really good way for my to keep everyone posted on what is happening. I will try my best to do some posts to update. It really is my goal but honestly I don't know what to expect. Maybe some of them will be really short and to the point. Hopefully I will find the energy and time to throw in a bunch of fun ones too! We all love to look at that sweet boy's face!
I want to try and document this stage of our lives. Because it is an important one and it is one where we will look back and be able to know how strong we all are and how lucky we all are. This is my way of documenting as you all can tell by now.
Also, I think it is important to get it out there that this is really possible. It can happen to anyone. Don't hesitate to go to the doctor for something that is bothering you. Don't hesitate to switch doctors when you are not happy with one. Get a second opinion.
Most of all, have so much fun and love those around you. Really cheesy but really, you just don't know what is around that curve ahead. It could be anything.
This also could be great therapy for me. Maybe for us... who knows, maybe Paul will start doing some blog posts!!! :)
Love to all and good thoughts.
We can beat this thing.
We will (but it will be a long, tough road!).
But of course! I would not leave you without some happy images of his "royal cuteness!"
Zane is ready for the bumpy road ahead!
Take a look at his new helmet he is sporting! What a rad kid! Check out those muscles via the muscle-shirt! And is that an ankle bone we see?
Zane can always be counted on to have fresh, organic fruit "on hand" to help you along the way!