So she is a friend. She is really almost like a sister through the lines. The Internet lines, the phone lines, the cancer lines, the anger lines and the healing lines.
She posted this after she finished up her chemo just like the chemo I had done...
"here i go again"
Now I am posting this.
This is not fair and nothing about this makes our world seem "right."
So some of you know. Some of you don’t.
Until now I have just not had the room in my chest and lungs to put this together. To give it life.
The cancer beast has crept back into our household and is about to have some sort of grip on us for the next couple of years again…
My last couple of scans (4 months apart) showed a large lymph node in my left arm pit. After it showed up the first time my oncologist was not really worried about it and just wanted to keep an eye on it. I was fine with that considering that so much goes on in the lymph glands in your arm pits that I really thought it was hugely possible that it was just inflamed because of some virus I was fighting or irritation to something. So, we waited four months and got the next CT Scan. During this time Paul and I decided that if the lymph node was gone or at least getting smaller than we were going to give ourselves the go ahead to try to have another child.
Four months later I followed up with the CT Scan and to our shock and disappointment the damn lymph node was slightly larger. Not large enough to alarm my oncologist and he just wanted to follow up in another 4 months with a CT and check it again. But during the appt. that I found this out it was extremely difficult for me to keep it together. I was sad, angry and so very disappointed. He picked up on this and tried to comfort me with the thoughts that he really didn’t think it was anything. I still could not pull it together and so I decided to explain to him why I had such great sadness. That Paul and I wanted to have another child and we just were at such a loss as to whether to treat this with severe caution or not. At the mention of this he immediately leapt on the idea of following it up right away with a PET Scan. I was scheduled for this the following week.
The PET Scan matched the CT Scan and at this he decided that it was a good idea to now schedule a biopsy of that lymph node. I truly believe that he thought confidently that the PET was not going to show what it did.
So, on Friday, July 23rd I went in for a lymph node removal and biopsy. I did not share this with many people at the time. It just felt to me that if I did it would some how give it "life" and "strength". I was telling myself that I am going in to get this done to put our minds at rest and get on with our living. It was quite a surgical process to do this one because I first had to be put under and sent to radiology where they put me under a CT machine so that the lymph node could light up on the screen and then a surgeon could insert a needle (but more wire like) with a hook on the end directly into the lymph node. This was to ensure that the surgeon that was removing the lymph node knew exactly which node to remove. So after I got that wire inserted, they woke me up and put me in a holding pattern until my next surgery was scheduled. They put me under again and then did the removal surgery. During that surgery he had a slight complication where he had to go through one of my vessels and I had a bit of a bleed but it was quickly controllable.
Ouch. (And no, that's not my nipple, that's my finger.)
That day I came home. They were not going to do a frozen section on this one. It would be sent to the lab for the pathology to be done, so I would not know the results for several days. I had a REALLY hard time with that amount of anesthesia though. I came home very sick and stayed that way until that evening. I am still day-by-day healing. I am sore. Really sore. I have a hard time using my left arm for much of anything. Not that I'm helpless, but I for sure can’t lift too much. And after a full day of doing normal things, man does my arm ache!!
So, it was Wednesday, July 28th that we got the call that the pathology came back showing “recurrent” Hodgkin’s Lymphoma.
God damn. God damn.
And really just plain FUCK. Really? Fuck!
So maybe some more detailed feelings and such will follow, but on to the technical parts of the rest.
What is next? I know, really, what the hell next? Then after that? Then after that?
Well, to outline the medical part of it for now (I see some sharing of some other outlines in the future. It seems to me that my mind is organizing in this way constantly so maybe I will bless you all with my mind coo-coo)…
1. Had lab work done at my oncologists to check all my current blah-blah-blah levels.
2. Bi-lateral Bone Marrow aspiration. This will be performed at the Downtown NCH on Thursday, August 5th. I arrive at the hospital at 9:45am. Bi-lateral meaning that they are going to take samples from both of my hips. Ouch! Right? Jesus. They do this in order to, once again, “stage” me. The one thing I guess is good is that no other lymph nodes are “lighting” up on the CT or PET Scans. So the only other step is to make sure that it is not in my Bone Marrow (worst case scenario meaning Stage 4 HL). If it is in my bone marrow than we are in some yuck shit that I still don’t want to understand. I had a bone marrow aspiration the last time but in only one hip and wow was it a sore one. Should be fun.
3. Then on Tuesday, August 10th, we will travel up to Tampa to go for an appointment at the Moffitt Center. I will be getting lab work done at 1:30 and then have an appointment with an oncologist (Dr. Celeste Bello) at 2:30. They reason I have to go up to Moffitt at this point is because at this point nothing is done without a second opinion. Also, most likely what will be recommended at treatment will be a higher dose chemo than what I had before. Those types of drugs are not available in Naples or Ft. Myers and the closest would be in Tampa at Moffitt. Moffitt is a specialized cancer hospital with all the more serious stuff that I have no understanding of. Yet.
4. The following week is my brother’s wedding. So, no matter what… I will not be starting any sort of treatment options until I return from our week in New Hampshire fully immersed in celebrating the wonderful connection between my amazing brother and his beautiful bride and best friend.
I will write more as time goes on. We are all trying to keep ourselves in some sort of holding place, so to speak. We have lots of anger. Deep anger. Frustration. Confusion. Sadness. And we are scared out of our damn minds. Terrified.
I am sorry if sharing big details or sharing pictures of this puts anyone off. I plan on sharing. I hope that I have it in me and my body to keep sharing. This process should be shared because I think it can be so helpful and educational in ways that I am not even sure of right now. Sharing helps me. I hope to use this place as a way to get some things off my chest. Or to simply update. I did learn that from the last time that this space on my blog was truly the best way to communicate with those concerned, worried, out of the loop or just plain curious.
I have already gotten some calls from you beautiful people out there and I love you very much and I will call you. I don't know totally when. I try to have a goal to at least accomplish one phone call a day... maybe two. But there is a lot to manage.
Love to you all and my biggest goal right now is to take care of not only myself, but my family. This is so unfair to them. Also, to try my damn best to turn this boiling anger into some driving strength and ambition.