Sunday, September 20, 2015

Famous for a Day

My story is going to be posted on the Voices of Metastatic Breast Cancer Blog. This blog is written by a fellow metastatic lifer, Lesley Glenn. She asked to have me share my story.  My story will be followed by Metavivor, Cure Magazine, Metastatic Breast Cancer Network, Cure Diva, and Living Beyond Breast Cancer.

My story will be live tomorrow on this site: http://voicesofmbc.com/. Please share it. I don't want to share it for fame, but to put more faces to this disease.

Check it out & if you tweet or post on facebook can you please hastag my story with the following hash tags:
#metsmonday, #voicesofMBC, #stageIVneedsmore
 

Saturday, September 19, 2015

Hypothyroid = Sluggish Depressed Irritable Blob

I finally got my hypothyroid in check (or I am assuming) and have been put on Synthroid. I have more energy, my hair is not molting all day every day, and I am not as irritable and depressed. So the Thyroid was Fixed. I also was eating everything in site, which is good. I put back on the weight I lost in April due to stress & not eating enough. So R.L. Stine, who clearly is the best kid author for kids with sick minds like myself, wrote a book to homage hypothyroidism.



Now onto the Lung. My pleural effusion has been so chronic & since I had a enlarged lymph node in my chest wall that apparently is the drain to the pleura region, my effusion never got better. Awesome. Since the effusion was blocked by some cancer and had cancer, a rind formed on my pleura around my Left Lung. This rind is a combination of things, dead cancer, possible remains of cancer cells, and scar tissue. Most doctors are calling this scar tissue. That means I will need surgery to remove the "Rind" to free my lung to finally drain the effusion.

Up until 2014, most doctors did not remove the effusions, because most cancer patients (from lung to ovarian to breast to lymphoma peoples) do not get effusions as the ONLY and FIRST site of metastasis. Well lucky me, I am the 2.4% of people who did! Now they know that the effusion can be fixed if this person (me) has a chance at long term survivorship. Awesome, glad I now have another surgery on the table, when the effusion could have been drained in 2013 and that node radiated in 2013.

In the world of cancer, we can never have "hindsight." There is new stuff everyday and doctors are constantly going over new terrain each day when it comes to metastatic cancer and even more uncharted terrain in cancer in young adults. So now we go into the new terrain they know will help.

So this effusion and I have like become one. He is my codependent cancer caused buddy who now won't leave without force. So here is what is gonna be done... and soon. Since I have no symptoms of an effusion, I am visualizing this as an enhancement surgery as seen here:



1. I have no problems breathing. So clearly my effusion is silent and wants to stay there for some reason.
2. I need surgery to remove the rind.
3. Surgery is a typical surgery they have used on Lung Cancer patients & have been using more often on breast cancer, ovarian and lymphoma patients with mets.
4. Its Thorascopic, which means 2-3 small incisions in my left rib spaces with a camera to remove the rind.
5. Remove rind, hope lung re-expands, blow in some Talc to glue my lung pleura to the chest wall.
6. If rind is removed and lung doesn't expand, I get a small gravity catheter put in to drain the effusion until the lung naturally expands on its own. The tube stays anywhere between 2-6 weeks. My surgeon said once it was in for 5mo. I hope I am not with tube for 5mo, but considering how lucky I have been with retaining lymphatic fluid from major surgeries I am not ruling that out.
7. Oh and I have to WALK 30-40min times a day, but I cant drive for 2 weeks, so where the heck will I walk... oh my 0.25mile lap in my condo association 2000x. 

I could go on and on what this entails, but honestly do you even want to know? Probably not & I won't post the link about it, because unless you really want to see gross images of lungs getting peeled open then nope, not posting.

Am I OK? Yes, I am stable. My ca 15.3 (breast cancer cells in blood) dropped from 260 to 111.6. My cea (inflammation marker) (which my trial wants and every doctor despises because it is highly affected by LUNG and THYROID issues) tripled. Scans are Oct 1. I have a feeling they will be stable or maybe better if my lung is fixed by then. Otherwise the only evidence in them are bone spots, which on scans you cannot tell are active unless they grow, but if they are the same they can be dead or stable.

So goals are:
1. Clinical Trial keep killing cancer - done
2. Get Thyroid in Check - done
3. Fix Lung so I can further have no breathing issues
4. Keep eating healthy - yea i am doing that i guess

I have drawn a conclusion that I will be a new Avenger. I am going with Captain Marvel, because she has yet to be cast, so that is what I will become. Oh and I won't be blonde, so Marvel start making her brunette. No I do not want to be Wonder Woman, I want to be cast to be hanging out with Thor and Captain America. Come on Lung lets go... I have goals.