Day 13: CT Scan results

by Eve D.

Ha ha! So I got my CT scan results today, and honestly…I can only laugh.

To give context: the point of the CT Scan, in my case, is to stage the Lymphoma. Technically, since it is already in the bone marrow (by definition), Waldenstrom’s is considered a Stage 4 cancer. Nevertheless, it needs to be staged so that progression can be tracked, and the best way to do that is to check the organs (especially spleen for enlargement) but even more crucially to check whether there is any cancer markers in the lymph nodes. My haematologist basically told me that if there is no trace in the lymph nodes, I might get away with no chemo, and instead be treated with a biological drug (Rituximab) on its own. So that was the point of the CT scan.

So….the good news is that my lymph nodes are clear and my organs look great. My spleen is slightly enlarged (1cm), but this is not much to be concerned about and is to be expected, and we already knew that anyway. No other alarm bells.

Except…it turns out, as an aside, that the Mirena that I had replaced in June (and which started off this whole diagnosis due to blood being tested etc) has perforated my uterus, has “migrated”, and is snow sitting in my pelvis!

I mean…seriously? Do you have any idea how rare that is? It’s like 1 in 10,000 or 1 in even 100,000 cases. And it happened to me? And I also have a one in a million type of cancer (literally).

Yes, you have to laugh.

So of course I called my OB, who told me that I need to come in for a laparoscopy asap, as in next week Tuesday. More hospitals! More procedures! Ugh. He’s going to make keyhole cuts in my abdomen, find that damn Mirena and replace it with a new one. I told him that I am not buying a new Mirena (they are like R3k) since I literally just got one, and he can call the Mireana people and tell them they are lucky I don’t feel like suing them. (Update: They are giving me a new Mirena for free, ha ha).

In all seriousness though…I am so relieved that this was picked up by the CT scan. I honestly literally could not handle another pregnancy right now, and I cannot think of anything worse than having to choose chemo or baby. It would be too horrid for me to even think about right now. And I know I get pregnant quickly, so I am really, really grateful that this was caught sooner rather than later.

None of this should distract me from the main message of the CT scan though: my cancer is pretty controlled, and given that I have had it for at least 8-9 years, is very, very slow (although years too late in being treated, but that is for another post). Hasn’t hit my lymph nodes, and we can now hopefully stop it in its tracks. I had my first appointment with my oncologist, and I will update on that shortly. (Spoiler alert: yes, I am getting chemo, unfortunately).

In the meantime, I have to prep for the laparoscopy, both mentally and physically.

Oh! And in other news…all of this has made me want to buy a puppy. Now I just have to convince Craig. Which is proving harder than I thought (Update: I managed, and it was actually easy.)

If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.

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