Monday, March 28, 2011

One of the scariest words I've heard

Oncologist.


I have an appointment with one next week.

Oh man...please let it be something else..

Thursday, March 24, 2011

Now what do I do?

I'm in a bit of a daze right now and don't what to do. I feel like I don't want to stay home and just "think". I feel like I want to go back to work. I want to apply for an HR job @ my current place of work. I just want to be happy...but at the same time, I have to take care of myself.

What to do? Am I thinking of doing too much too soon?

Tuesday, March 22, 2011

The 4-1-1, Here it is

I went to my hematologist today so he could tell me about the results of my bone marrow aspiration/biopsy.

He had me do an x-ray today. The x-ray consisted of like 15 different pictures. He also referred me to a specialist.

But essentially, my hematologist believes that...I have multiple myeloma (aka myeloma). It's what I had seen online when I googled the results he had given me the week before, but I was holding out hope that it wasn't that, since myeloma usually affects people who are at an older age. No such luck. Again, the diagnosis is not set in stone. I have to see this specialist first in order to see what he/she has to say. Perhaps there is another explanation for it.

When I looked at the symptoms for myeloma last week, I noticed that one of the mentioned symptoms was lower back pain. I hated (and hate) to admit it, and I cannot recall at this time if I've mentioned it in my blog before, but I do experience from time to time lower back pain. It's like a throbbing pain..like the pain goes and comes in like 2-3 second waves. Eventually it goes away.

In any case, right now I'm just a little out of it right now. As you might imagine, all I'm kind of thinking is...why? Why does it always have to be something else? Once I feel like I'm kinda conquering one thing...something completely brand new comes up. That said, my hematologist said (and I already knew) that any transplant talk or happenings will have to be on hold/ put off for now.

I don't have an appointment with the specialist yet, but I'm supposed to get a phone call at some point with an appointment to see the specialist.

In the meantime, I have and will continue to leave it in God's hands. Thank you to those of you who posted your thoughts and prayers, and thanks to those of you who have subscribed to my blog. If the specialist does conclude that I do have myeloma, all I can say is that I've beaten the odds and conquered many things in my not-so-long life. That trend WILL continue you. I hope you will all follow me and hold my hand through this journey.

xo

Thursday, March 17, 2011

Protein..?

My hematologist called me yesterday afternoon to report back on my bone marrow biopsy/aspiration results.

My hematologist called me on my cell, which shows that he got the message I left with his secretary the day before otherwise he'd have called me at home. At first, he said "you don't want to do another bone marrow biopsy, do you?" I immediately giggled a bit and said no, as I automatically assumed he was joking, knowing the amount of pain I went through the last time (last few times to be exact). He continued after that.

"you have protein in your bone marrow...too much protein" is what he said.

About a million thoughts went through my mind. What does this mean? What do I do now? Maybe he wasn't joking...maybe he DOES seriously want me to do another biopsy. How is this going to effect the transplant?

He then asked me if I had any appointments coming up at the hospital so that I could come and see him at the same time. I told him that I didn't, however I would come in any day that he wanted me to. I'm not in school or at work or anything, so none of my other activities would be disturbed. Even if I DID have other activities...this sounds important. He said he wanted to run a few more tests. I agreed.

Again, he didn't give me any specific details as to what this means. The first thing I did after hanging up the phone was jump on google. I was a bit startled (google "too much protein in bone marrow" to see what I saw). It's important not to "jump the gun" and get all sorts of ideas into my mind before I actually see the doctor, so that's what I'm going to do: remain cool, calm, and collected.

I told my brother. I've always been my brother's side kick. He's 4 years older than me. He went into protective brother mode. He said if, heaven forbid, I should need a bone marrow transplant...he'd do that too if he was a match. He pretty much said he'd do anything. That's really sweet to me, because he doesn't know what's involved with the procedure. All he knows is that I complained to him a month ago about how painful the bone marrow biopsy was, and he doesn't know if he'll be subjecting himself to the same kind of pain.

Well, I haven't much else to say where the bone marrow results are concerned, but, as usual, I will report back where that is concerned. I will also be attending that dermatology thing next Thursday where my dermatologist wanted her colleagues to look at the whites spots on my face. I'll report back on that also.

Keep me in your thoughts...and send positive vibes to me here in Toronto...

xo

Tuesday, March 15, 2011

Uhm..we don't know yet

I decided to wait until today to post, hoping to have an answer about my bone marrow biopsy/aspiration. I called my hematologist's office yesterday and explained the situation to his secretary. She took my hospital number and said she would email the doctor and let him know. I was a bit worried about that as I would assume that such an email would be at the end of his "respond to" list since it would be his most recently received email.

I emailed my transplant coordinator today to see if she had heard anything. She informed me that the hematologist was investigating/trying to decipher the results of my bone marrow tests along with a hematopathologist (huh? sounds like something out of CSI Miami!) Well I guess the good news is that someonne is looking at it...but...how long is this supposed to take? What is so complicated about these results that a hematopathologist has to get involved??

More to come later..

Saturday, March 12, 2011

More Whoopie

So today I had the fun task of getting my passport photo taken. This process is very difficult for me. I always look in the mirror before heading out to get the photo taken in an attempt to practice my best non-smiling face. I managed to figure out a perfect face-one where my eyes were slightly narrowed and my mouth had a bit of a mona lisa smirk...just barely there.

I was totally thrown off of my game when I got to the passport photo place. I put on a full face of makeup...but I have oily skin that was peaking through the makeup. The photographer had me use a napkin to blot my face. I didn't have any blotting papers. I blotted and I blotted as I did not want to completely smear all of my makeup off. Then, when I sat in the chair and narrowed my eyes slightly, the photographer said "no! don't squeeze your eyes!" Man, now I have no idea how my picture will look...! So I tried to maintain the same mouth but keep my eyes more open. I like the "eye squeeze", as one of my eyes tends to look slightly bigger than the other in pictures. In the end, the picture came out ok. I pinned my twist out to the side to try and make a cute hairstyle, but I'm looking a little like "The Donald".



Later in the evening, I managed to find myself back at starbucks for a decaf soy vanilla latte. Thankfully, they had still had those lovely free treats...so I got another red velvet whoopie pie. The following was my whoopie pie's short existence. I saved it until I got home so I could have whoopie in bed.














Thursday, March 10, 2011

The highlight of my day was a red velvet whoopie from starbucks

So today I went for my regular home hemo/nephrology appointment. Nothing particularly spectacular happened there.

I learned that my bone marrow tests did show something "abnormal", but nothing that my doctor could decipher (as previously mentioned), so I'll still have to wait where that is concerned.

Ugh, I was so annoyed when I was waiting for my appointment in the waiting room. There is this other patient that I saw in the waiting room the last time I came to clinic. He's one of those guys who kinda try to show off and be your friend or something...or try to impress you. The last time I was at clinic and he was there, he was with his friend. Out of nowhere, he says "man, I wish I brought my walkman (yes, he said walkman) so I could listen to some BOB MARLEY!!!" Yes, he said it so loud just to ensure that I heard him. Then, he started singing a Bob Marley song. Guess what? I DON'T CARE. Maybe he thinks singing Bob Marley will be his "in" to be friends with me? Wrong. THIS time/today, while in the waiting room, a friend of his came to join him. After a few minutes of conversation with the guy, BM Sing along says "they were playing Bob Marley a few minutes ago!" and starts singing Bob Marley again. Really? Shut up please.

Some other patient walked in that apparently knew this guy. The Bob Marley sing-along guy says to the patient "Man, I totally lost your number!" and pulls out his phone. The other guy says "yeah..I've just been really busy. I'm busy all the time nowadays"-aka: I do not know why I gave you my number previously, but I'm glad you lost it because I'm definitely not giving it to you again. SMH.

Then after my appointment, I was sitting at a desk filling out some survey that home hemo was making everyone do. When I was sitting there doing it, Bob Marley sing-along came by and sat in a chair near me. He started whistling. It was highly annoying. I immediately picked up my purse, jacket, and survey, and headed for another chair. As I was picking up my stuff, he said something...I think it was "oh, do you have to wait around again?" I said no, and walked off hurriedly. I get the whole thing of...let's try to be friendly with other people who are in my position..but I don't like it when people do this by being annoying. Stop being annoying!

Anyhow, I went downstairs and my father and my transplant coordinator where sitting in starbucks. The line was abnormally long because they were giving away free treats wihth every drink purchase. My tranplant coordinator was nice enough to buy me a hot chocolate. My free treat was a small red velvet whoopie thing filled with icing. It was delicious.

Now...(hopefully) only a few more days to get the full scoop on this bone marrow biopsy/aspiration...

Wednesday, March 9, 2011

Appointment Tomorrow...

..with my nephrologist. We'll see what Doc Rich has to say...

Tuesday, March 8, 2011

Seriously?

...the only doctor (my hematologists) who knows how to read my bone marrow results is out of town until next week. I asked if another hematologist could read my results and I was told that it would be best for MY hematologist to read the results since he is familiar with my case.

I am convinced that there is no guarantee that I will be at the top of his priority list when he returns.

My transplant is waiting on his results.

My place of work is (rightfully) wondering what the status of my surgery is.

A happy camper I am not.

That is all.

Wednesday, March 2, 2011

Hemoglobin is up

I was at the hospital today. I had a bone density scan this morning at one hospital, then it was onto the shuttle bus and off to another hospital (with the results of the bone density) to see the osteoporosis doctor. While in between appointments, I went to go hang out with one of my hemo buddies. But prior to that, since I was near my home hemo unit, I did go and get my nurse Rose to do a quick cbc for me.

So after a fun chat with my in centre hemo buddy, I went and saw the osteo doctor. I was happy to learn that my bone density showed improvement. And I obviously haven't had any new fractures since the last one I had a couple of years back. That's great news.

My nurse promptly emailed me today to tell me the results of my cbc. 103 or 10.3 for my American friends. I'm pretty happy about that since my hemoglobin was 80-something previous to that. I am hoping that this will be enough to proceed with transplant (and by "proceed", I mean..let's do it QUICKLY. Like, TOMORROW. LoL). I did call my transplant coordinator immediately upon receiving the results from my nurse. She usually calls me back immediately, but she didn't this time. I'm guessing/hoping it's because she wants to speak with the doctor. Cross your fingers for me.

In an attempt to make myself feel better (prior to getting my hemoglobin results, of course), I went to curl ambassadors to get a wash and a trim. I was happy to see that my hair had gotten much bigger since the last time I was there in September. I also took pictures of the back of my head. Coincidentally, the last time I took pictures of the back of my head was in March of 2010. Below are pictures that show the progress. I'm pleased with the results and hope to continue growing my hair out to lengths I have never experienced before...! I really love curl ambassadors. My stylist, Angela, is so personable. In fact...she's lovely. And I'm simply not used to going to a salon and being the only person that my stylist is focused on. I remember back in the day when I used to relax my hair...and I'd be sitting there with a relaxer burning the crap outta my scalp while the person doing my hair was off doing something else to someone else's hair! But at curl ambassadors, I got there at like 12:20 (my appointment was 12:30), I was seen immediately, and was done by just after 1pm. That includes a wash, trim, condition, styling, a sit under the hair dryer, an additional trim/shaping, and a bit of blow drying to stretch my hair. Unheard of for me! That would take about 3 hours (if I was lucky) at the salons that I used to go to! Smh...I feel spoiled! :)


That's all for now. Let's hope for good news where transplant is concerned..!
 
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