Update Fairy on a Dragon

All in all today was a rough day thanks to the remainders of hurricane Irma. My back and pelvis were acting up, though not as badly as yesterday. To help distract myself from the pain and to aid in relaxing I did some stitching tonight while on a hangout with members of the facebook group The Stitching Nest. It was a lot of fun hanging out with my friends chatting, laughing, and stitching. Here is the latest progress picture of Fairy on a Dragon by Joan Elliott.

Fairy on a Dragon © Joan Elliott
2 over 2 on 28ct Jobelen using DMC threads

I've also been working on a post for my Living With Chronic Pain and Depression blog. It gives an overview of my day in the hopes of helping others to understand that being home all day with chronic pain is not the same as having a day off of work. 

Wow has it been a while

It has been a rough few years for me due to health, depression, anxiety, and a lost stitchy bug. However I did pick my stitching back up recently after a nearly 2 year hiatus. I am working on Joan Elliott's Fair On A Dragon. I am stitching it with DMC floss on 28ct jobelen using 2 strands of floss over 2 threads.

Joan Elliott ©
Fairy on a Dragon

I am once again fighting back against depression induced apathy and trying to be a real person again, so I figured I could pop a post up on this blog. I am also running a stitching group on Facebook called The Stitching Nest. Right now it is a small group, but a good group. We have a lot of fun using Google Hangouts to stitch and chat together. A virtual stitching group! My daughter, who also stitches, helps me run the group. If you have a Facebook check it out.

Well that's it for now. Hopefully I will post more as I have missed writing on this blog and writing in general. 

Update On My Stitching

After I finished the Quaker, my niece asked me to do a Hello Kitty cross stitch for her, so I did. I don't remember the date I started it. However, I finished it January 27, 2015. Here is a picture:

I have started a Joan Elliott, Fairy On A Dragon. This is as far as I have gotten (it came between the Quaker and Hello Kitty):

After I completed Hello Kitty I picked up my old WIP, Christmas Dreams from Joan Elliott. I completed it on the 26th of February 2015. It needs to be washed and pressed, then the beads will be added. Here is the pic for that one.

After finishing Santa I picked up the Anniversary/Wedding sampler that I started years ago for my hubby and I. This is the Sentiment Sampler by Betty Spencer from thee American magazine Cross Stitch Crazy (May 2002 issue). Here is where it stood when I started stitching on it earlier today. I joined a Sampler SAL on the Cross Stitch, It's Fun Facebook group. I got almost all of the lower right corner filled in, which is the outermost border.

Here is what that sampler will look like (well, real close to this as I did change the center and am adding beads as well) when it is done.

A friend from the Facebook group gave me a RAK. Her name is Heather and I am so very grateful! She sent me the pdf from Heaven and Earth Designs for Amy Brown's Mini Naughty Fairy. I don't know when I will get a chance to stitch it, but I do love it!

I've been participating in the Facebook group and we hold daily Google+ Hangouts. These hangouts are a LOT of fun and go a long way towards keeping my stitching bug alive and well. Watching everyone stitching makes me want to stitch more and more. I am quite glad I joined them. They are a great group of people.

Happy Dance!!

Yesterday I completed stitching on the Quaker 6 Mains (I think that's the correct title) from Mon Ami Pierre.

YAY another finish for 2014!

Vlogging

I started doing Vlogs on youtube for my stitching. Back in 2012 I started doing vlogs for chronic pain and depression, but like everything else, I stopped doing them when the depression got so bad.

I came accross a cross stitching video on there that wasn't a "how to" video and that lead to other videos that are vlogs (video blogs) by other stitchers. So a couple weeks ago I made one and this past Tuesday I made my second one. I thought I'd share them here as well.

And Still Stitching...amazing!

Here is where I am as of today on the Quaker sampler. The first and third pages are done, which completes the left side of the design. Not bad for someone who hasn't stitched in a couple years.

I'm also showing my niece, Bridgette, how to stitch. She has been asking me to teach her for a couple years now and I tried on Sat. the 27th of April. She did a great job. I showed her with the first row, having her help pull the needle through, and she did most of the second and all of the third rows herself. I am very very proud of her! Here is her stitching and as soon as I can get the pics off my phone, I will post one of her actually doing the stitching.

Last but not least I did get the K's Creations frame from overstock dot com. It is taking a bit of getting used to but it is making it a LOT easier for me to stitch without neck, shoulder and low back pain. Works very well and I am enjoying it.

And Stitching Continues

I had to take 2 days off from stitching as my shoulders and neck hurt from the way I was sitting, and my back pain increased as well. I have ordered a lap frame by K's Creations. Though I ordered it from Overstock dot com, as K's Creations never returned my phone calls (2 days in a row, messages left both times..4 business days total) or email. I don't know if they've gone out of business or not. Hopefully using the lap frame will make stitching more comfortable for me.

I made some more progress on the Quaker Sampler. Here is a picture of where I left off this evening.

Even More Stitching (With Big Smiles!) and Pics as Promised!

Thank you all for the wonderful comments, I do appreciate it! I continue to enjoy stitching again and continue to stitch! So here are the pics as promised!

Yesterday I worked on the Quaker (Quaker Mon Ami, I think ???) called Quaker 6 Mains by Mon Ami Pierre © (I was close, almost got the designer right LOL) some more and am almost finished with page 1. Here is how it looked last time it was on the blog:

No Idea the Title. Got it as a freebie online.
28ct. Jobelen

There was a tad more done but I apparently didn't take a picture. The letters Q and q were added and that's where I stopped somewhere in 2010 I think it was. When I emptied my bag the other day I had the fabric and the chart, but couldn't find the list of floss numbers I had used. All I could remember is they were 38's in DMC. So I scoured my blog, luckily I did write the floss numbers I chose onto the blog; 3831, 3832, 3833. I was very happy when I found that, yanked the floss and got stitching. Here is where it stands as of April 14, 2014:

Back in Dec. 2011 I was participating in an Ornament challenge. I stitched a few ornaments and left one in progress. I finished that last week, here is the picture:

Holly Reindeer © DaffyCat
28ct Hand Dyed Jobelen (not sure of name but its a tan/brownish color

Around the reindeer's neck is a bough of holly. It is done in green x's and red French Knots. Along with the Holly Reindeer, I also stitched the Mistletoe Reindeer, The Stocking reindeer, and Believe. All are by Daffy Cat. Believe and Stocking Reindeer have been shared before. So here is Mistletoe Reindeer as I can't find a post on my blog where I shared the pic of this one.

Mistletoe Reindeer © DaffyCat

Many many years ago I stitched a bunch of small Christmas designs onto Aida fabric. My intention was to turn them into ornaments. For years the large pieces a fabric (Black and white) just lay in the drawer with the stitching on them, but not cut out for finishing. Eventually I cut them out and pinned them together, but never finished sewing them. Well, I finally did and they are ready to be used on this year's Christmas tree. These came out of different Leisure Arts leaflets and a Christmas Book or two that I have. Here is a pic of them:

That's it! Nothing since Dec. 2011, and in one week I finished a few WIPs and an owed exchange. So now I'm going to do some more work on the Quaker Mon Ami (I think that's it, not sure though and I'm probably wrong) Quaker 6 Mains by Mon Ami Pierre © (I was close, almost got the designer right LOL)The other day while stitching I decided to try listening to an audio book. I have Stephen King's Wind Through The Keyhole as an audio book, being read by the author, so I started that up. It was FANTASTIC! Now I know why all you lovely people rave about listening to audio books while stitching, it is great! So I'm off to Mid-World, the Starkblast and needlework!

**edited April 16, 2014 to add proper name of Quaker design

Stitching Continues!!

I have stitched every day now for the last couple weeks and it feels great!

After I completed the care bear I pulled out my project bag and emptied it. I laid all the contents on my bed and played "match up" with the fabric and charts. Back in Dec. 2011, I was doing an ornament challenge and had stitched reindeer designs made by Daffy Cat and had completed the stitching on 2 of them, leaving 1 in progress. I completed the third one yesterday. (I will get a pic up as soon as my camera charges)


Last year I signed up for a Valentine's Day exchange, in the hopes that it would help kick start my desire to stitch. It didn't, but the project was in my bag about a quarter done. It is a design that I made and I don't want to give it away, but I did take a pic that gives a bit of a sneak peek.

In addition to that, I had a bunch of little X-mas ornaments I stitched many years ago (2001 or so). In Dec. of 2012 I had my niece help me stuff them with poly fill. My intention was to make little pillow ornaments out of them. They got stuffed, and the open edge pinned together and that was it. Today I finally got around to closing the open seam and adding hangers. I will take pics, hopefully, tomorrow.

Also in my project bag was the Quaker I started a few  years ago. I added some more on it yesterday and today as well.

So yup,  stitching is happening and I am very happy about that!

FINALLY!! I stitched, enjoyed, and COMPLETED a project!

My last stitching finish were a few Christmas ornaments back in Dec. of 2011. Since then I have done spats of stitching here and there, nothing much at all though. I was severely lost in depression and lost the desire to stitch. I tried once in a while forcing myself, but just couldn't do it. In Oct. of 2013 I ended up in the hospital for 6 days. The end result is that I have a heart condition, damage to the back side of the left ventricle from a heart attack, and an 80% blockage in an artery that feeds the heart. Of course, the blockage is arranged and in such a spot that the doctor can't just put a stent in and the surgical repair would be "tricky" and "dangerous", thus we are hoping medications etc. will ease it up a bit.

I'm not going to go into details but that experience in Oct. sure blew my mind in many different ways. The biggest being I don't want to die and I don't want to continue just existing and not living. So for the past few months I've been working on getting my head in a better place. As I did that, I started wanting to stitch. My niece asked for a piece of Harmony Bear, one of the Care Bears. I've been stitching for the last few weeks, with the last week being very regularly and with increasing enjoyment.

Here it is, my first piece of completed cross stitch since Dec. 2011. I am so very happy to have it done!

Copyright Leisure Arts
Stitched by. Missy Hull 2014

I seem to have woken up my stitchy bug, so the next piece to go on the hoop will be the piece I owe a friend.

Where is my stitchy bug? Heck where am I?

Well, to let everyone know, I am still alive and around. I know it's been close to (if not already past [too lazy to check right now, ok I checked it was Feb. 2013]) a year 8 months since I posted here, longer than that since I posted with any regularity. I haven't been stitching much at all. I put a few stitches (total of maybe 50 stitches all told) in a couple of my WIP's here and there, but nothing major at all. *Pictures people making a a cross with their hands and yelling at her: "No stitching?!?! Sacrilege! Back you floss deserter, back you project abuser, back I say!" [raven giggles at herself]* See? I have lost my mind I tell you!

Another odd image: 2 rather official looking ladies at my front door dressed in black suits, complete with sunglasses (think Men In Black, only women in the suits rather than men) and ID wallets. Their badges have the symbol for cross-stitch of a hoop with fabric and a needle parked in said fabric. The words surrounding them are "International Needlework Association: Cross-stitch Div.: Project Protection Agent". They hand me a court order allowing them to confiscate my stash, WIPs, UFOs, and even my Ghingers for their own protection from my abusive neglect. "Now Mrs. Shadowborne if you would please surrender your Needlework ID, Scissors License and Precious Metals Needle Approval Cards. Yes than, very well.  Thank you very much and have a lovely day!" (trust me, it seemed much funnier in my head...oh well never said I was good at comedic writing  LOL)

I signed up for an exchange (due back in February) in the hopes it would help me regain my stitching bug. I have stitched on it. It sits three-quarters completed (would still need put together etc) in my stitching bag (along with 5 other WIPs) and I just can't find the energy to finish it. It is so late and I feel so horrible about it. I have told my partner and she is being so wonderful and understanding about it. My brain however uses it to beat me up. Why does depression have to include mental self-flagellation via self-insults and loads and loads and loads of guilt? It doesn't help, just makes it worse.

What happened? Depression is what happened.

The truth is: I just haven't been able to drum up the desire to stitch, or when I had a tiny inkling of desire, I couldn't drum up the energy to actually do it. My depression finally hit the really bad stages where even the sadness and despair go away, leaving nothing behind....emptiness.

Those woods I posted about a while back, I got lost again I stayed lost and couldn't find my way out. I knew my depression was bad, but I didn't realize it could get even worse, but it did.  I'm not sure that I have found a way out yet, but I am at least forcing myself to try to resume activities I know I used to enjoy doing. But it is so hard to fight back when I can't really do anything but sit in bed all the time. The pain has been insane, and pain like that really does mess up the chemical balance of the brain and nervous system.  In some ways the depression and it's accompanying dissociation is comforting because it removes a lot of emotions, thus I don't feel guilt, emotional pain etc. Instead I just feel empty, vast sweeping blackness..nothing at all. I've had a day here and there where I did have some feelings, but not often, not for long, and not real good feelings/thoughts. Though, there is one ray of sunshine finally: those days with some emotion have been increasing in frequency so that's good. I know that in order to feel better, I have to allow myself to feel at all. Of course the first feelings will include all the guilt, anger, frustration, fear etc. that I have been hiding from and the idea of feeling those things in order to move through them is extremely daunting.

I have days where some feelings are coming back, and when they do I am struggling to let them, to not shove them back down. It is terrifying. Part of me truly wants to stay in the woods, the deepest darkest part where there were no real emotions more often than not. My last post, I tried to end on an improved note. I *did* go stitch (about 15 stitches before giving up) that day though.

Thank you to all those who left me such wonderful comments! I read them all, obsessively more than once because they give me a warm & good feeling inside which is better than the empty nothing I had 99% of the time. I fully intended to reply to each one via email and when I realized a few weeks had gone by I just didn't know what to do. Reply so late? Let it go without telling them what their words mean to you? The self talk turned into how horrible I am, useless, etc etc., and I became afraid of the response I'd get if I replied after such a long time. I felt I would deserve it whether it be an angry/upset/disappointed/whatever response to my reply or no response at all. So, as with everything else for the last few years, I did nothing and just used them as more ammunition for those times when my brain played "beat up the birdie girl!". I truly am sorry for not responding to those comments before now and I appreciate them a great deal, thank you thank you thank you!

I am not posting any of this to make people feel bad for me or anything like that. I am posting it (terrified but going to do it anyway even if it means I have to ask DH to click the publish button) for a few different reasons. One to explain where I've been. Two, to release some of my feelings in hopes my doing so may do some good for someone else. There are other reasons as well, but I think I've rambled quite too much about my depression in what is supposed to be my stitching blog. If you've read this far, Thank You and give yourself a pat on the back, Well Done! (and no I do not mean that sarcastically). I appreciate it :)

Ok this is my 9th attempted post that has been sitting in the drafts folder for a while. It has taken me 2 weeks to write this one it as it is. "OK .......here goes...click publish raven! click it!"

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!

Been A While

I realize it has been quite some time since I posted on my blogs so I wanted to post a quick message to let people know that I am okay. I've been struggling with the decreased mobility, increased pain, and depression issues as I've mentioned on my other blog. I am fighting back but not getting very far since my ability to stand or walk has not improved at all. I still can't stand or walk for more than 5 to 7 minutes at a time, which makes doing things rather difficult. I did get a power chair from the Scooter Store (Great people to deal with by the way!) and it has helped me to get around the house easier (moving baskets of laundry and such) but without a ramp attached to the house, I can't get it out of the house. Without the lift attached to the back of our van, I can't take the chair to the store or anything. So until I can figure out how to get a ramp installed or built on my house, and figure out how to pay for the part of the lift my insurance won't cover, the chair isn't going to help with me getting out of the house as much as I want it to.

I haven't been stitching either, hence no pictures of progress. I'm hoping to get some stitching done today. The Sentimental Sampler has been calling to me fairly strongly the last few days.

Anyway, just wanted to pop in and say hello! I hope everyone is doing well!

Interesting and Informative Article

This is an older article on copyright violations in the needlework industry (quilting, cross stitch, needlepoint, etc etc.) that has lots of great information. This article was written in (I think) 1999 or 2000. The issues it talks about now are even worse. Many designers have closed up shop, magazines have gone out of business or changed their business focus to stop publishing the magazine due to piracy (most recently The Gift Of Stitching), and local stores are closing. Piracy has reached huge levels within the needlework community and it is hurting the entire industry. Read the article here: http://www.caron-net.com/nov00files/nov00fea.html

Stitchers lose another resource

A magazine that I have greatly enjoyed over the past years, The Gift Of Stitching Magazine, is stopping publication with their May issue. One of their main reasons is internet piracy (copyright violations). It is so very sad that yet another resource for stitchers is being lost due to people who just can't grasp the concept that they are stealing. It frustrates and angers me a great deal.

I've seen how these people defend themselves. They say things like they only use the stolen patterns that they download to discover new designers and then purchase real copies of the charts for designers they like. This might be true for a few of them, but it is NOT true for the majority of them. Far too many people download charts for free and refuse to see that by doing this they are crippling designers' businesses, thus causing them to stop designing as they can't earn a living wage with their designs. For this magazine specifically it has been horrendous to see that within 30 minutes of the new issue becoming available, the file is uploaded on at least 3 different major infringement sites. Then the issues are downloaded hundreds of times within a few days. Then the people who download the files argue that it doesn't hurt the business of the publisher of the magazine (it is a small business that publishes this magazine, not a large publishing company). I don't understand how they can believe that their stealing doesn't effect the publisher when hundreds of downloads do equal hundreds of lost sales to the publisher. If it were true that downloading these illegal copies do not impact designers, then TGOSM would NOT have seen such a loss in sales that just gets worse every quarter. The fact remains that designers who are being infringed upon do see major drops in their income/sales, the more frequently they are infringed the greater the drop in their sales.

These drops in sales would NOT occur if it were true that everyone who downloads a pattern just to "see if it is a good pattern" then goes and actually buys that same pattern. Since designers are seeing drops in sales, some to a point where their designing business is constantly running at a loss (in other words it costs them money to continue to design, rather than breaking even or making a small profit), it is obvious that the theft of their designs is negatively impacting their businesses.

Sadly it is true that human beings will convince themselves of whatever they need to so they can continue their behavior when they know that behavior is wrong. Many of these thieves convince themselves that stealing these designs doesn't hurt the designers and is "ok", in order to feel that it is okay for them to continue to download stolen charts. They deny the harm they are doing.

I truly am saddened that the stitching community is losing yet another great resource due to internet thieves. I loved TGOSM as it introduced me to many designers I had not seen before. It had many interesting ways of finishing stitching beyond the usual framing, pillows, needlebooks etc. It had some wonderful articles. I will treasure all the issues I have.

Kirsten, thank you for all the work you put in to publishing The Gift Of Stitching Magazine. I enjoyed it tremendously!

Commenting System

On other blogs I have seen comment sections that allow people to post a response to a specific comment. The replies are indented and show up underneath the comment they are responding to. This allows people to have a conversation with each other and receive replies directly linked to their comment. On Rosemary's blog Seeking Equilibrium, I have greatly enjoyed the system she is using for comments on her blog. So I went ahead and followed the link to the website for Intense Debate, the company (I guess it's a company) that provides the program/coding for the comments. I signed up and followed their installation instructions.

I was surprised at how easy it was to install. I then tested it (hence the two comments at the bottom of this post LOL) and it works great! 

I wanted to do this because I can't always sit up for long periods of time and thus am unable to reply via email to all the comments even when I want to. As a result my response emails can go out days (or sometimes weeks) after the original comment was made. I feel bad about that and wanted a better way.

With this program installed on my blogs I can now comment directly to people in a faster yet still personal (to each individual person's comment) way.  When you make a comment on the blog there is an option to "subscribe" to the comments and you will receive an email update about further responses. You can select "all comments", "none" or just "replies". By selecting replies you will be notified when anyone replies directly to your comment. This notification will be helpful in letting you know that someone (either myself or someone else) has posted to you so that you can view the reply and choose whether or not to respond to it. Selecting none is self-explanatory and selecting "all comments" means you will be notified of every comment posted after your own, even if they were not in reply to your statement. 

I hope you enjoy this new system. Thank you again for reading my babblings, I do appreciate it a great deal!

Oncologist Visit

I wasn't expecting the oncologist to do much, but boy did they make me nervous! He is a radiation oncologist so he doesn't do much (if anything, I'm not 100% sure though) with patients until they've been diagnoses with cancer ad referred for radiation. I called him because back in 2010 he was such a great help to me. he understood and knew about phyllodes tumors, and was willing to answer all my questions.

So I went to see him on Monday. As I said, I called to find out what I needed to do and the nurse called me back. Anyway, he remembered me and asked if I had the resection done. He had recommended the surgeon go back in and take some more tissue because he didn't agree that they had gotten a wide enough margin. I explained the surgeon refused to do it. He looked a bit angry but hid it fairly well. He then agreed that yes this thing in my back might be a phyllodes but he can't say for sure whether it is or not. I said I understood that but I just wanted to know if I was thinking correctly or if I was just going off half-cocked for nothing.

I understand docs have to be careful what they say to patients, and he was very careful how he worded things. But basically yes it could be a phyllodes, it could also be any number of other things. He said I need to see a neurosurgeon to have it evaluated and that it should be removed and biopsied. So nope I'm not over-reacting, which is nice to know since I am aware that I can do that at time. It is possibly a Phyllodes Tumor, but only way to be sure is biopsy.

Soooooo..time to get a neurosurgeon to see me.

WIPocalypse March Update

Here is a picture of the Anniversary Sampler for DH and I for the March WIPocalypse. I didn't get a whole lot done, but its better than nothing.

more of the right hand border

how it looks overall

This is Sentimental Sampler © Betty Spencer from the US Magazine Cross Stitch Crazy May 2002. Here is a pic of what it should look like when completed. I did change it around just a little to make the words I wanted fit in it.

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.