The Waiting

Over the past several months I’ve alluded to, but never specifically talked about, a stressful situation our family was going through. It has taken a while, but I’m finally at the point I can talk about it, mainly because it is something that has now been put behind us.

There are and always will be things I don’t “talk” about here. There are the obvious things I won’t breach someone else’s confidence or privacy but  I am also very reluctant to write down my thoughts and feelings about what someone I love is going through even when they are openly sharing with others. Why? Partially because I cannot CONTROL the situation and I feel helpless, I don’t like it when I can’t fix things and make them right, that is what I am hardwired to do. Also? Writing things down makes things more real to me, it always has. I am already writing the scenarios in my head I don’t need to see them in black and white. The funny part is, it is a different story when it comes to things I am personally going through, then I am an over-sharer of the worst possible kind.

It all started last spring, Sean had been feeling under the weather and “fluey”,  he was due to go on a class trip to Oregon for a Shakespeare festival and was concerned about missing it. He had all the typical flu symptoms including a sore throat and “swollen glands” which I told him should go down once he was over his flu. He got better, he went on his trip and we didn’t think any more of it, that is until he happened to notice a couple of months later that his lymph nodes were still swollen, in fact he thought they were even more swollen than they were originally. He said “you said they would go away” which in fact they should have. I asked him why he didn’t say anything earlier and he said “I didn’t notice until now.” Kids.

So he went to the doctor, a walk-in clinic rather than our regular doctor as I was working. The doctor ordered a regular blood panel (which showed no active infection) an ultra-sound (which showed swollen lymph nodes) and then referred Sean to an ENT specialist. While waiting for these initial results I lost my job in the department “reorganization”. Yeah.

In the light of what was going on though, his health was the most important thing, we had no idea what we were facing. Each test came with a wait, to see the specialist, for special blood tests to check for toxoplasmosis and bartonella  henselae (Sean was volunteering at a cat shelter when he got ill) to be referred to yet another ultrasound which was required by the hospital to be at their own facility before the now ordered needle biopsy and so on and so on. Each wait was agonizing.

After every test there was almost a two-week window before we would hear the results. Each result was inconclusive, though each would slowly start to rule things out. He showed a mild positive for bartonella but not strong. The needle biopsy results showed lymphocytes only (what you’d expect to see in a lymph node) but it also ruled out melanoma or metastasized cancer being trapped by the lymph node, a relief for sure but it still didn’t say what WAS wrong. The ENT (who was fabulous I might add) ordered another ultrasound to check if the lymph nodes had shrunk significantly from the previous clinical one (they FELT like they were smaller to touch) but after another 2 week wait we found that they hadn’t changed enough.  The doctor wanted to rule out lymphoma and to do that they would need to excise sentinel nodes surgically from Sean’s neck.

By the time Sean had his surgery it was March of 2011, an eternity when you are worried for your child. Like I said I didn’t write about any of this and truth be told I barely talked about it. Sure my family and friends knew and they were very supportive but most of them know me enough by now to not keep asking about it, but rather to wait until I say anything myself because holy cow when you’re asked if there is any news and you’re frustrated about the fact there IS no news you don’t want to be asked, or maybe that is just me.

I felt sick as a dog the morning of surgery but I needed to keep positive for Sean. Tom and I kept up the chatter with Sean to keep his spirits up but of course we were all worried, his Father included who I texted updates to throughout the day. When he was walked away towards the surgery suite I took a breath and I don’t think I exhaled until a few hours later when we saw him being wheeled from post-surgical recovery into the regular recovery room. He was smiling wanly and not in much pain (the drugs were doing their thing) and wasn’t feeling any nausea. We had to wait until the ENT was finished his next surgery to talk to us before we were sent home. We continued to chat with Sean while I texted his father with his current status (he wanted to come by the hospital to see him before he was discharged and was on his way) and the ENT who had done the surgery too came and told us the surgery had got very well, he had removed three nodes to ensure they had a good sample for biopsy and testing and Sean hadn’t bled much during surgery, it had all been text-book.

He told us to come see him at his office in 10 days to get the results, to leave the bandages on until they fell off on their own, told Sean that his scar would be much less apparent if he was diligent in his use of sunscreen for at least a year and discharged him.

Those ten days were some of the longest of my life. The day finally rolled around and Tom, Sean, Sean’s girlfriend and I piled into the car for the short drive to the ENT. We sat waiting nobody talking much. We were moved into the internal waiting room (Tom waited in the outside one to avoid over-crowding.) The ENT walked by us from the reception area telling us with a serious face that he’d be with us in a few moments. We’d already found that his face was always serious when saying that so we couldn’t read too much into it. We were finally called into the office and he asked how we were.  All three of us poured out our anxiety about the results in our own words and he cut us off waving his hands saying “No no no nothing bad, no signs of lymphoma” thereby he was swamped with gratitude and glee. In fact I told him “I could just hug the stuffing out of you right now”. He said that the tests had merely shown a reactive node, no more no less. They had done all the screening for lymphoma, and there were be some further testing done but he didn’t expect there to be anything of concern.

It did show that he had a mild positive for Epstein Barr, which indicated he may have been infected with that (which causes Mono) but nothing of any concern. He said he was sorry that Sean had to go through surgery but said in the end it was much better to have had it, and rule out lymphoma rather than to worry about it, we all agreed it was worth it and the scar. He did order one further blood test to check the cat diseases again, had one further follow-up visit to get those results and to check the incision and that was it. Nothing from the blood tests or the further biopsy tests showed anything to be concerned with.

The ENT said that it was possible that the nodes would never go back to “normal” size or that they may shrink over time, it was hard to say, but Sean did not have cancer.  Sean did not have cancer. Five words that we’d waited a very long time to hear. The best five words ever.

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