Getting Lost In The Woods: The Forest Of Depression

For months now I have been struggling with depression, apathy, emotional pain, and felt no energy nor any real desire to do anything. I have posted in my chronic pain blog a few times since June 1, 2012, which is the last date I posted in my stitching blog.I started out 2012 with high hopes and a smoldering need to stitch (not the full on burning intensity of "Gotta do it right NOW!"). I signed up for a few things for the year, WIPocalypse (attempt to complete UFOs so that should the world end [apocalypse] those UFOs would be done) and the TUSAL (Totally Useless Stitch A Long, where you save your left over pieces of thread in a glass container and post a pic at each full moon). I fell out fast on the TUSAL (Feb. 2012 was last I posted my ort jar) and the WIPocalypse stopped in March. I've been mentally kicking myself all year.

I finally got my doctor to actually hear what I had been telling him for months, though he only listened because my DH came with me to the appointment on March 5. Thanks to my DH being present, a cat scan was ordered and the Dr. agreed to fill out the necessary paperwork for me to get a power chair from The Scooter Store. I was also started on Cymbalta which is an anti-depressant that has been shown to help alleviate neuropathic and low back pain in many patients. Thanks to Cymbalta, I did get a significant decrease in the intensity of my pain. I still had pain every day, but could stand for 10 to 15 minutes at a time (instead of the 2 to 7 I was at for a year or so) and when the pain did spike it was nowhere as sharp and intense as it used to be. It still hurt like hell but instead of feeling like someone was stabbing me with a very sharp and large knife, it felt more like someone was hitting me with a slightly giving ball on a stick, more of a thudding type of pain.  As a result I spent many days over the summer going out and doing thing. My friend has a pool at her apartment complex, so we spent many days there with our kids. We went out for dinners and enjoyed hanging out with each other. DH and I accompanied our friends on a weekend away and had an absolute blast! I was constantly amazed by how much better the Cymbalta made my pain, though it didn't do so great on the depression. I still had to fight the apathy etc. and force myself to go out but I succeeded. I even managed to start stitching again somewhere in July or August I think it was, though I didn't get very far, just a few more stitching in the wedding sampler.

A week (I believe it was) after our weekend trip in September the doctor made an error with my Cymbalta script (when the PA upped the dose from 60mg a day to therapeutic level of 120mg a day) and I did not realize it until 2 weeks later when I noticed I only had 5 more doses when I should have had 14. Knowing how impossible it is to get a script corrected or anything else from my doctor's office between visits, I didn't even try calling them. I tried to spread them out by taking one pill every other day, even though I should have been taking  2 pills, twice a day, every day. It didn't take long before I noticed the intensity of my pain returning. With each day that went by with the incorrect and irregular dosing (these meds rely upon a specific blood concentration and that said concentration remain constant in order to work their best) my pain got worse again, mobility dropped, and the depression came back full force. I reverted back to not wanting to do anything but dissociate from the pain and its destruction of my life. Once again I was lost in the dark forest, without so much as a tiny trail, left to wander. Even though I recognized the depression when it came back full force, I didn't care enough to fight it anymore. Mostly because no matter how much I fight it, it always wins in the end and comes back stronger than before, so I just let myself continue wandering, surrounded by the trees of sadness, pain, apathy, complacency, dissociation, lack of emotions, little to no energy and all of that. It felt so dark and I felt like a failure yet again. Yet in some ways it felt like home. It felt comforting, probably because I know that major depression is now a part of me for the rest of my life due to how chronic pain causes chemicals in the brain to go out of whack (norepinephrin, serotonin and more); which causes the depression. For some, who have dealt with this kind of depression for a long time, even curing the pain will not be enough for their brain chemicals to return to normal as their brains now believe the messed up levels are normal. So while I waited for the 6 weeks to pass once I finally got the correct dosage of medication, I hunkered down and hid. Falling down the slippery slope and into the comforting dark of depression.

It felt like home, but it also felt empty. I felt empty, used up, and done. I did try here and there to fight it off, but not very strongly and not for very long. It just felt too hard, like climbing Mount Everest naked, without climbing gear, and greased all over with lard. Not going to get far that way!

So here is where I've spent the majority of 2012, stumbling around in the dark feeling lost, worthless and broken on the few occasions I actually felt anything at all outside of apathy and sad emotions.

If you've read this whole thing, thank you! I really do appreciate it. I know it is very long, but considering I haven't blogged in many months I'm not surprised and there is a lot of ground to cover. I'll end it here for now because I have to go stitch (and I WANT to, which is great to feel!) as I need to finish an exchange I signed up for hoping it would kickstart my stitching mojo again, and it seems to have worked!

Utiil next time, I wish you all happiness, and peace!

Return Call From Oncologist

I put a call in yesterday (Friday) to the oncologist I saw back in 2010 after the biopsy results came back. I wanted to be sure that I had the right information about Phyllodes tumors and that everything that could be done had been done, so I went to see him even though the surgeon told me it wasn't necessary.

So I called his office leaving a detailed message and asking what tests or things I should be asking my GP about when I see him on Wednesday. The oncologist's nurse called me back a couple hours later after discussing my message with the doctor.  They apparently pulled my medical file and looked it over. The doctor is "concerned that it very well could be a recurrence of Phyllodes" and wants to see me "asap", so I was given an appointment for Monday at 11:00AM (central usa time).

The nurse told me some of the things I already knew regarding chances of recurrence, chances it could be another low-level malignant/benign Phyllodes, chances it could be a more malignant tumor (mid-level or highly malignant metastisising) etc. etc. She said that I was doing the right thing by getting it checked out and said with my history it needs to be done.

So I am now a tad more nervous and scared. To have a cancer doctor say he is "concerned" and "wants to see you ASAP" is a little unnerving. Though it is still possible this will turn out to not be a phyllodes, so I am holding on to that and doing what the doctor wants me to do.

I am still very very scared.

Thank you Sara, Christine, Mouse, Daffycat, Terriboog, Jeanne, Anne and Brigitte for your wonderful comments and well wishes. I greatly appreciate them!

So Scared...another tumor?

If you read my entry for Tuesday (on my pain blog), where I talked about my doctor's appointment on Monday you'll know that when I asked my doctor about the cat scan results he said there was nothing spectacular going on with my spine and that my pelvis/SI joints came back as he expected. Yet again I am glad I do not totally trust my doctors on everything. I trust him to a point, same as he trusts me to a point. But from my experiences I have learned that doctors are very very busy, and as a result miss things, forget past illnesses of their patients, or flat out ignore them.

Yesterday, Wednesday, I received a copy of the cat scan results in the mail as I requested. (which was a pleasant surprise since I was expecting the receptionist to forget her promise to put it in the mail) Reading the report I came across something I hadn't heard of before, intraosseous hemangioma on my first lumbar vertebrae (L1). So I looked it up. Intraosseous means "on or within the bone" and hemangioma means "growth containing endothelial cells and blood vessels". So basically this means I have a growth of some sort (tumor) on my vertebrae at L1. What I read went on to talk about the various tumors an intraosseous hemangioma can turn out to be, many are cancerous (and yes Phyllodes is included) and a few are not.

Now I understand my doctor has hundreds of other patients and as a result it is difficult to remember every little thing their patients have been diagnosed with in the past. But to forget your patient had a rare cancerous tumor removed 18 months ago? Then to not even mention this growth when giving the test results seems wrong to me.

In June of 2010 I had a cancerous tumor called a Phyllodes tumor removed from my right breast. These are very very rare tumors, counting for less than 1% of all breast cancer diagnoses in the USA. When they do recur as a spreading (metastasis) cancer, they most frequently show up on the lungs or the spine. They are not the usual breast cancer in that they are not ductal or lobal, they are a connective tissue tumor. Also they do not spread via the lymphatic system as most breast cancers do, they spread via blood vessels and contain endothelial cells. Endothelial cells are the cells which make up the lining of blood vessels.

I did inform my pain management doctors of this tumor and its removal because it meant I was having surgery. I did inform them of what little is known about these tumors, including that they do not respond to chemo or radiation and the recurrence rates etc. etc..I did not get additional meds for post surgical pain as my regular meds should have covered it, but I still had to inform them I was getting surgery. They were also informed that a benign/low level malignant Phyllodes tumor counts as a cancer diagnosis and if it recurs it can do so as a more malignant tumor and when they do they usually appear on the lungs or the spine.

Taking that into consideration do you think it might have crossed the doctor's mind that a tumor on my spine MIGHT be something he should mention to me and recommend I have it checked out considering the similarities between a hemangioma and a phyllodes tumor and considering I have already had a rare cancerous tumor removed 18 months ago?

I say HELL YES to that question. Instead I had to find out by demanding my own copy of the written report.

So now I am scared.

I am hoping that it is not a recurrent phyllodes tumor that chose to pop up on my spine because that is pretty scary. I know the chances of survival regarding a recurrent and spreading phyllodes, which this would be a metastisis since it is on my spine not the same breast. I know the chances of it being another low level malginant/benign Phyllodes or the more malignant ones. None of it is real encouraging or very good. But the only way to find out is to have it removed and biopsied since you can't tell a phyllodes from a non-cancerous tumor without a biopsy. (They very frequently come up with a false negative for cancer result on needle and core biopsies.) You would think that a doctor would tell their patient, specially one with my history, that an abnormal growth (aka tumor) has appeared on their spine.

I see my primary care doctor to get the ball rolling for a biopsy next Wednesday.

Please please please God, not cancer ok? Or at least, not malignant Phyllodes ok? please? pretty please with sugar on top?

I need prayers and well wishes that this turns out to be nothing, if you wouldn't mind.

Thank you.

PS I did do a little stitching, but haven't gotten a pic for WIPOcalypse and I am sorry. I will try to get it up tomorrow.