The Return of the Sarcoma

Hey skywalkers,

I was just trying to find something catchy to break through the clutter of uninteresting posts, all evidence that I am getting rather bored sitting at home or in some tea lounge all day. Even work (that small task I was asked to do) kept me busy for only half a day. Pumpkin played with a toy that has a small bell all day and I am now slowly but surely turning into a shepherd.

Interesting things can happen in my neighborhood. A friend and I sat at a coffee shop. I ordered a "cafe frappe". They had a Mocha version which I was asked about but confirmed that I really wanted the regular one. The waitress brought me the supersized version (I ordered a medium) because she made a mistake and prepared a Mocha frappe. She said apologetically "you get a big one for free because I made a Mocha, so I am giving you more for your money". The logic is fabulous. This is a drink that I explicitely did NOT want, and I am getting MORE of it???

It really feels so weird. The bleeding ceased after the first surgery. The pain stopped after the second surgery. I am feeling more or less fine now (a little pain at times in the lower abdomen, very sharp, like thousands of needles all aiming at the same point at once). The first week, I was more or less asleep the whole time. The second week, I couldn't drive but I can walk ~ 1 mile/day. From this weekend onward, I can gradually increase the distance I walk and I can drive to medical appointments. So I don't feel sick at all. Yet, I am supposed to be off work because I need to limit walking/movement of my belly (no belly dancing for me right now...I know you were all dying to see that). This is so bizarre...Anyway, back at work in 1 week now, so everything should be back in order after that. Still no exercise/heavy lifting/tampon/douche, etc... for another month (apart from walking and be a tourist on my boat for a cruise) so that's a bummer. Then if I were to opt for a pregnancy, I would have to wait for another month.

If you are bored by this blog, I can take feedback. Remember that this Reality Show where everything will be documented is FOR YOU ;-) I don't want my ratings to fall just before we get into prime time.

OK, things are getting hot.

The pathology report confirms the diagnosis of some sort of malignant sarcoma. In any case, it has not changed. No one is saying that it wasn't malignant and Oops, we just removed your cervix by mistake and no one is saying "actually it is a very rare form of malignant shingles and you need a series of shots in the butt". The margins are clear around what was removed, although 1 cm shorter than what my oncologist had hoped for. Remember that for sarcomas apparently, it means little as these little aliens can send microscopic satellites around the body to look for sunnier places at the same time as they peacefully grow in one location. Still, for the "wait" strategy, it is a good thing. If she hadn't achieved clear margins, my uterus would have be sent to Pathology Heaven immediately. And it was quite deep into the tissue of the cervix, eg apparently ~ 90% of the cells of the cervix were cancer cells (that was visible on the MRI, esp, the contrast version). So I guess that the trachelectomy was a good decision.

So this means that it's my decision...We're back to square one minus the cervix.

A friend referred me to someone who counsels a lot of cancer patients. She was kind enough to call me today. The disease is definitely rare, she asked me to spell adenosarcoma because she had never heard of it before. It was GREAT to talk to someone who didn't just throw numbers at me. She offered a more human perspective :)

Here's what I have learned from our little chat:
- In rare cases, it is very normal to have everyone disagree. It is not helpful but it is expected, esp. among physicians who can be quite opinionated.
-She said that there was a big difference between "I recommend to go through a pregnancy and then do a hysterectomy" and "our main recommendation is a hysterectomy but if you are aware of the risks, you may wait and be watched". The latter means "the second option is not safe but it is reasonable".
- She thinks that the oncologists are working on answering my question: can I get pregnant now. They seem to spend a whole lot of time on this. Most physicians' gut feel would be to offer the most aggressive treatment to preserve life. However, most physicians will also want to understand the patient's goal and risk profile so it can be factored in the discussion.
- She recommended to spend a lot of time looking at other options to become a mother.
- For this type of cases, she thinks that I should go to the world experts. She recommended that I travel to a major cancer center over the next month, have them review my pathology, examine me, chat with me. She also said that I should not state my goal of carry out a pregnancy openly so as not to bias them. Finally, she recommended that I should voice my concerns such as "I am worried about having to interrupt a pregnancy if I were to start one" or "I am worried about my life if I wait before a hysterectomy" so they can try to quantify those risks for me. She also thinks that since my case is so rare, they will most likely be delighted to be given a chance to look at it.

It does indeed sound like most of the world's knowledge on adenosarcoma (which can be transported in a backpack when confined to a book format, using Font 11 Arial) is concentrated at one of those centers.

So this will be my next destination.