Thursday, October 29, 2009

Well, I am back. At work that is anyways! I did have my scan yesterday and thankfully it is over. I woke up yesterday morning, reached for my neck as I have been and thought for a second--hey! The bump is gone! But then I turned my neck and found it all over again. It hasn't moved and in fact it does feel larger {like it's in deeper now}. Of course they don't tell me much, but there is a tumor {and yes I hate it that this term is used}, but that is what any abnormal mass is called, regardless of a malignancy or not. She told me it is within my soft tissue {which I knew it wasn't on my bone}. But that was about all she could tell me. I meet with the Neurosurgeon next Thursday, so he will be able to access the results then, if I don't hear from my GP sooner. All in all, even if it is related to the benign mass I had removed last year, I will have them remove this one too. Only I will ask to be under GA and covered with antibio's first and after. I will not risk another sepsis bout in any way. Even though it is suspected it was urosepsis, I am not really up to risker another ICU visit. I've been there, done that and I am good with that now ;)
I've edited this post to attach a couple of pictures I have taken of Mikey's hands. We are so fortunate to be in contact with the inventor of the X Finger and hopefully {fingers croassed everyone-no, no pun intended there ;) } he will be able to use Mikey's hands to develop a pediatric version of his most incredible invention.

The first two pictures are of his left hand and the third and forth are of his right hand. Obviously they are palm up and straight on top view. I think they turned out wonderfully & really it amazes me to see the difference in both hands--even though I see them every day! They also display his Clinodactyly very well & you will note his left thumb is possibly the only digit affect {very slim chance though} by Amniotic Banding Syndrome. And we only say this {we as in his Ped, Genetist, myself and all the other specialists} because it does have the "tell-tale" ridge on the top.

And please forgive me, I am not happy with Blogger's photo insert options.

Tuesday, October 27, 2009

Thanks to my sweetest friend, I have an appointment for tomorrow morning at 10:30 to have my mass scanned!! This is most joyous news as the waiting is h-o-r-r-i-b-l-e, and that's putting it mildly.

Monday, October 26, 2009

Has not been a good Thursday-present...I've been trying to not make a big deal out of things. I have been doing pretty well. I have only been {very} anxiously awaiting my appointment with the Neurosurgeon {to discuss my options for my Cervical Spinal Stenosis} that was rescheduled until November 5th. Time has been going sooo slowly with that one!

Well Thursday night as I was putting on lotion, a habit I do at the same time as checking for enlarged nodes. Which I have been so lucky have not been a problem for some time. I did have a breast mass removed in 2001 which was benign, albeit a "strange cluster of masses, grape-like" is all I can remember the doctor telling me {I had it taken out at the same time I recovering from my botched facial reconstruction {thanks Paul Coffey} and osteomylitis that occured as the result of doctor negligence.

Last year {Feb 2008} I had a tmor removed from my left groin. Biopsy revealed a very rare type of tumor called Angiomyomatous Hamartoma. Even my Oncologists at work have never seen a case of this benign tumor. Following this, I had to have an MRI & CT scan both before and after I went in to the ICU for urosepsis and DIC. I was found to have a mass within my C5 and C6 in my neck. It is a fairly large mass for something that shouldn't be in your spinal column. Anyway, we've only been watching this thing. It's been ok, aside from causing me to now have the cervical spinal stenosis. I should also mention that after the ICU stay I've been monitored for "pre-lymphoma". I don't know that I've ever heard of this, but my blood counts have been off, I have the unexplained fatigue {but who as a mom doesn't?}, nightsweats that are horrible, loss of appetite etc. But a bone marrow biopsy I had last year came back as only a small amount of material to be biopsied, but other than that, fairly normal. Final decision with my Hemo Oncologist was that we'd just wait and see.

So back to Thursday, and the lotion incident. I found a new tumor. But this one is "feelable". It is in the middle of my clavicle. Supraclavicular tumor is how my GP called. it. Thankfully it is still small {about a 1 CM size}. But it is firm, not very mobile. My dear Poppa who passed away in August was incidentally diagnosed with Non Hodkins Lymphoma in March. This brought back all my fears, but I had been doing ok.

My next step is to wait for an ultrasound of that area. And then we go from there.

Wednesday, October 21, 2009

Well it has been a few days since an update. Things have been a bit up and down. We had a sad sad shopping experience over the weekend. I've not felt hurt like that for a very long time. I will post on that as soon as I can {it still breaks my heart}.

In any case, for those that wonder the severiety of Mikey's hand defect, here is a tracing of his hands that we did last night:

Pretty awesome though, aren't they? Especially when you realize that even though his defect is pretty severe, they do not inhibit his function at all! My Mr Amazing!

Friday, October 2, 2009

Today is one of those days. I feel miserable and grumpy. I am hating this so much. I have been suffering so much with my neck and I am so tired of my GP's comments like "wow, how do you manage to work" & "how are you able to get up in the morning" blah blah blah. Like seriously, yes it hurts, it hurts more than I could ever imagine it would. I am now suffering the effects as they spread from my neck and go down my back & arms and legs. My eyesight is also suffering and thus creating more intense migraines.

I have spinal cervical stenosis. We don't know why. We think that if it was related to getting hit by the hockey puck it would have shown by now. Granted it has been painful for quite a few years, however since I turned 30, they seem to exploded. I am not sure how big the mass within my spinal column has gotten. Last MRI was over a year ago. I also still have the enlarged lymph nodes in my neck and groin and when they flare up naturally my pain increases.

I am living on T4's and I can take 2 at a time with little to no relief. I am so worried to take them though, after my sepsis bout a year ago. The Tylenol 4's had caused my liver to be in failure and I didn't even know.

I hate the pain. It makes me a horrible mother. No one really understands it. I am so young for this to be as bad as it is & I hate it. I have no energy to play much with the boys. Working is a struggle. Acting normal is even harder. Putting on a smile and acting like I am ok feels like I am lying to everyone. I am scared of getting to a breaking point. I hate what the pain does to me. I am such a horrible mom to my precious boys. they should not have to suffer because of me.

I just want it all to go away. For surgery to happen and for me to be the kind of mom that my boys deserve...