Long and overdue...BUT NEW NEWS!

Hello people!

Long and overdue…I know!! But I have a few things to report in...make sure to read to the end!...

Radiation

Radiation was the month of April. It is all over now, which means I am officially DONE with all my treatment. No more cancer treatments…PERIOD! My skin is quite burnt in the radiated areas, but – thank goodness – no open blisters. As far as fatigue…during treatment there was a definite onset of fatigue. Everyday around lunch time I was extremely tired and some days would take a nap. Now that I am finished with the radiation I do have some fatigue, but it is starting to subside (I think).Definitely hard to fall asleep at night too.  I have heard from people that radiation can affect you and/or give you fatigue for years after treatment. That just sounds bonkers! Not saying that it is not true for others….however I just can’t allow that to be me. I want and need my energy back…and I will do what it takes to get it back!

Exercise and weight

So there is good news and bad news….

During chemo, surprisingly I did not gain any weight – well that was until towards the end. Most people gain weight with the R-CHOP treatment because it has a hefty dose of steroids that are taken each treatment period. I felt lucky in the beginning because I did not gain weight…..but now ( and it started the last month of treatment) my body has changed. The confusing part was that when I got on the scale I was the same weight that I was before, however my clothes were not fitting the same. After speaking with experts on the subject, the simple truth of ‘body composition’ was revealed to me. I no longer had the muscles I used to have, and those muscles have been replaced….Replaced by what, you ask!? With fat. Ugh! Horrible….just horrible…

So my weight is the same, but the way my body is composed has changed.

As for exercise, I made the effort to go walking and go to yoga practice here and there for most of the treatment time. It wasn’t a bunch but I was trying to keep up with some activity. Towards the end of chemo treatment, I realized that I was not able to get through a yoga class any more. I went, and I somehow managed, yet it was a huge struggle….to find my center, to keep my balance, to not allow my ego to override, to breathe through my nose… I was truly struggling and realized that I was not able to go to yoga for a while.

So in the month of March, I was done with treatment and tired of laying around – and knew that I needed to start doing some exercise again. All I did was walk – almost daily. I took the dogs out, which they loved and I walked anywhere from 1.5 miles to 5.5 mile, but most of the time walking roughly 3 miles. No change in body composition.

In April (this month) I have been tracking and doing interval training 5-6 times a week. I am following Adrian Bryant from www.nowloss.com. Most days I do 1-2 interval trainings in the morning, and 1-2 at night.

Good news is I feel like I am starting to get my energy back, my balance back, and start to feel muscles again.

Bad news is…although I have been trying to LOSE weight, I have not lost weight (at least and still) on the scale…which is highly frustrating because I have been watching the calories and exercising almost every day.  I definitely need to measure myself. I think I have started to lose inches in the waist and arms, but cannot truly know unless I measure.

Talking to the doc, he says this could be because of a few possible things: may be steroids I took, may be that my body is “happy” now and is sucking up everything/anything I eat…

The fact is something has got to give soon, I will continue the exercising and calorie watch and hopefully things will change for the better soon. I just need to find my patience!

 

Hair Growth

My hair is FINALLY starting to grow back in. I was worried there for a bit that I was going to be one of the very small percentage of people that hair NEVER grows back. I was just being impatient…Finally 5 weeks after my last chemo treatment I started to sprout! Now, daily I can see a change. I am just finishing up week 8…and although I am not quite ready to go out and about into the world with no wig, it is getting much closer.

 

Follow-up Appointments

Yesterday, I had my 2 month post-chemo treatment appointment with my oncologist. He asked how I felt and checked for bumps – and all seems good and moving the right direction. All I have now is follow ups with the doctor every 3 months, and every 6 months I will have a CT Scan to make sure all is continuing to be clear! My initial CT scan will be in months from now. That will be scary…

This will last for 3 years, than I will get scanned once a year for the last 2 years….and then…at the 5 year mark, I will be considered CURED.

 

Cancer free January 25, 2013… CURED January 25, 2018

 

Last but not least…

NEW WEBSITE

So, I will be the first to recognize that I was NOT the best at keeping this blogsite up-to-date. Most of the time it was because I didn’t want to look at the computer screen light or didn’t have the energy to concentrate on writing something articulate…blah blah blah, excuses – right?! But the news is…I will be starting a WEBSITE! Yaya!!!

Currently the website is under construction. I have been working on it for the last few weeks, and hope to get it up and running by mid-May. All these posts will be transferred there, as well as I will have updates from the last few months, hair growth pics, and my status moving forward. So, there will be news on me…but that will not be the main purpose of this site. The site’s main goal is to speak about, educate, and bring more awareness to EARLY DETECTION. Early detection was truly one of the main components that saved my life. I could be in a very different situation right now, if it wasn’t for that. That will be my message….but more so the goal is to get everyone talking about it through this site.

So stay tuned…within the next month you should see this site information come your way. J

Love ya all~

Bee

Happy Heart Day People!

Happy Valentine Day ya’all!

So long and over due for sure. I figured I would take some time to update the blog. Sooooo much has happened since I last wrote!!

The Good News:

First and foremost, the good news! I am officially FREE OF CANCER! On January 25^th, I went in for my follow up PET scan and within hours I received results back from my doctor that read that there is no signs of the original disease. I was flabbergasted to say the least. For one, I did not realize I was going to get results back so quickly, and secondly I was just amazing that I had cancer and now…I don’t. I am officially in REMISSION. Whoo hoo…

 

Wigs:

So, I said I would write a little but about my wigs. So I found this great place in LA. Specically in LA fashion/garment district. I was able to get human hair wigs for under $100 and human hair blend wigs for roughly $30 a piece!! Those ones wear faster however worth buying a few and just switching them out.

I find that the shorter (in the back), like an A-line cut, worked best for me. The hair pieces I have had tend to get tangled in the back so it was harder to manage. With the short hair in the back I do not have to worry about that and that made it so much more comfortable!

I did buy a few different colors, but I do tend to wear the same lighter one. The darker and red ones just don’t always fit for me… so they have been on the wig heads for the most part! Haha

 

Symptoms and Status:

So even though I am cancer free (yay!) I still have to go through the rest of my treatment protocol. I had my PET scan after the 4^th treatment, however the protocol calls for 6 treatments + radiation for a month. I had my 5^th treatment on Feb 4^th and my last will be on the 25^th of February. I am grateful it is almost over. I will have to wait about 3-4 weeks and then I will begin radiation treatment. Once a day, 5 days a week for a month. During the mouth of March, my hair should start growing back.....I CAN NOT WAIT.....I miss my hair so much! ugh!!! One of the hardest part because it is a physical attribute and is something everyone can see. Anyways, I will be ecstatic to see my hair growth very soon now!!!

Its kinda funny how it works out. I am now cancer free, however this has been the most trying part of this whole experience physically and mentally. First off, after the 4^th treatment I had gotten little sick with a cold, which last the whole 3 weeks, and made it very difficult for me to do so many things. I felt ill, nauseous, dizzy, cold, chills, and mostly fatigue. I like to call it EXTREME FATIGUE. Cause I have never, ever….ever felt this tired in my life. Then, going in for my 5^th treatment I was full of anxiety. I was yuck-tified (a barbaraism) that I had to go in with no cancer in my body and get toxins pumped through me for 6 hours. I know…I know…this is a necessary evil, however it just plays with your mind. I felt sick to my stomach the entire day pretty much plus the week after. The first week after treatment 5, I was in bed pretty much the entire days. Sleep, get up, eat, lay down, sleep, get up, eat, lay down repeat. It is the PITS, I tell you! I feel so blah and lazy. It is just not me.

When I have a “good day”, I cannot tell you how wonderful it feels to be alive! That is the good out of this. I see and feel the difference, I appreciate life and wellness so much more on these days. I just want to skip and frolic!

The one thing I have to remember is to still take it easy and not waste myself. I am feeling good this week, for instance, so I decided to take a walk. The walk was refreshing and needed, however a bit too long. I was extremely tire just from the walk and was ready to be home. I still need to learn the balance.  I do, get so excited that I feel well I think I can do it all, but just walking is tiresome and takes an ample about of energy.

Symptoms are blah…they are getting worse. All the above I have written about:

EXTREME Fatigue : like no other, so I sleep a lot. Cannot even put into words how tired, tired can be.

Nausea: still have been able to keep everything down thank goodness. I find that eating a bagel for breakfast has really helped.

Neuropathy: in fingers and now in my palms. Still not in my feet. This may or may not go away the doc says

Mouth sores: ugh, got my first mouth sore and OMG!!!!! It hurt so badly. I have a mouth wash to help with it and it went away after about 3 days but it was so painful and hurt to eat. I hate them. I think I may be getting some more here again, so I am washing out my mouth constantly with salt water and gargling.

Chills/Flu like symptoms: this still happens the first week

Muscle sore/Body Aches: this is attributed to the Neupogen shots I take. They make you have muscles sores, all the bones in your body ache tremendously. You just feel sick all over and sensitive to the touch. I feel bruised all over. This wears off for me after about 3-4 days the first week.

 

Ok, that’s enough for now. I posted this on my Facebook and I will post it here. This is my thank you to all of you….so many wonderful people in my life. J

Today I am grateful for the over abundance of love in my life! Thank you.

You all know who you are. I have had to endure some troubled waters but have gotten past the hardest part...I could not have done this without each and everyone one of you. Your thoughtful words, notes, emails, prayers, hand holds, kind thoughts, kisses, hugs, tears and laughter have carried me through. From of the bottom of my heart, thank you! Happy Heart Day. Xoxo

 

So, it is New Year’s Day – 50% down!

Oh so happy for 2013. 2012 was a whirlwind to say the least and I am quite fine with putting it behind me. I am still in good spirits and my mindset is set on being cancer free.

I am happy to report that I am now 50% done with my chemo treatments as of December 26, 2012!!! Whoo hoo!! I have 3 more treatments through Jan-Feb 2013 + 1 month of radiation in March. I go in for my 4^th treatment January  14, and then at the end of January I will get a followup PET scan to see where I stand. This scan will be after 4 chemo treatments, and to compare to my infected PET scan. Although nervous, I am really excited to get there. I am super anxious to see what my progress has been. In my mind, I am kicking this cancers a$$ - undoubtedly. I just don’t feel that there is any other way to it, but to beat it. So, I look forward to the proof.

How I have been….?

Although I am pretty positive and headstrong, I have had some side effects that I have dealt with. Here’s the downlow on the last few months…

1)      Neuropathy – this is the tingling or “pins in needles” in my fingertips. I have Grade I which means it is only in my finger tips and I can still use my fingers normally (i.e. like buttoning a shirt or picking up something small). I should not have to worry if it stays like this, which I hope, but if it gets to my feet or affects me holding on to things, there may be concern of permanent nerve damage. This is a known side effect for chemo patients. I suppose it isn’t as bad as having cancer.

2)      Hormonal changes – Boo…boo…BOO! Dealing with some acne, frustrating – it is the last thing I want to have to deal on top of everything else. Did go to the doctor and they had to give me a hormone pill to offset what the chemo was effecting. Doing my best to regulate it now, but the damage was done and it is taking longer than I am comfortable with to dissipate.  One day at a time…*deep breath*

3)      Muscle weakness and pains – I get this during the first week after treatment. I have to take these Neupogen shots which are basically white blood cell booster shots. They will help regulate the white blood cells in the body so one doesn’t get too weak. The side effect from this shot is the weakness in the bones and muscles. I didn’t realize what I was feeling was from the shots until this last time around. The best way to describe it is like I am bruised all over, so I am sensitive to the touch.

4)      Head pressure – I have had this after all of my treatments for days 1 through 3-5. Treatment 1 was bad, treatment 2 was worse, and treatment 3 was actually not so bad. It was lessened this last time around to my surprise. The pressure is what I would imagine a migraine would feel like, however I have never had a migraine myself. My head literally feels like it is going to explode; just pressure coming from all angles. Usually I just lay down and sleep or watch TV. I DO NOT move, that is the key…and it passes after a bit.

What keeps me positive…?

1)      Support – I have had an overabundance of support. It is fantastically ridiculous! I am over joyed and grateful. Having all my friends and family be here for me has been such a blessing. Just to name a few…

·         Staying at my brother’s and sister in law’s house has also been such a good thing for me. Being with my family and my little nephew has not allowed me to get distracted on the negative. I have constant interaction with someone on a daily basis. David, Candice, and Dylan are all positive influences in my life and just having the company has been so healing. Thank you!

·         I have had a number of people come to my treatments with me (you know who you are, thank you!). All the nurses and even other patients tell me how “popular” I am. Haha, I just thank them and smile. Pam Urry has been to every one of my treatments, and I know she plans on going to all the rest – constant love and support from her!

·         Kelly McCoy from Canada came to see me during the Christmas session. While she was here we got to shop and spend a lot of time with my family. She treated me like the same ol Bee – the only difference was that I was bald! She gave up her Christmas to spend it with me and I am so grateful. Love you friend.

 

2)      Working  - this has been important to me. It has been essential that I keep some normalcy in my life and not just feel like a sick person. Work does not have to define my life; however there is some stability there that I do not want to lose. Also I enjoy continuing to see and interact with my peers and co-workers.

3)      Hanging with friend, old and new – this has also been, I think, so healing for me. I make sure that I take the time to spend time away from home with friends. I have been able to shape closer bonds with some, be more present with others, and rekindle past connections – all have been a positive thing for me.

 

 

 

 

Goals moving forward…?

1)      Exercise  - this is approved by the doctor!

2)      Read more - nuff said

3)      Go to a Lymphoma group meeting – Honestly part of me does not have the urge to attend a support group meeting. I feel like I am mentally doing so well that I don’t need to go…yet, I have been told it is important to meet others that are dealing with the same situation as I am. So, I will go.

 

Happy New Year! Thank goodness we are moving forward.

I will write more about my baldness and wig-fiasco next time. Till then, peace out!

Hugs and love!

It's the colors you have, no need to be sad, it really ain’t that bad

So it’s December! I thought I would be a lot better at this blogging – but apparently I need to improve at my ‘keeping peeps up to speed’ skills. I am here to say that I am doing well, and still in good spirits. Every day isn’t easy, but really I have much to appreciate. I have had an abundance of love and care come my way. My family and friends have become closer. Old friends showed up, new friends appeared, people I thought didn’t even recognize me…recognized me, people who had memories they never shared…shared. I have so much to be grateful for.    Thank you.

I always thought of myself as someone who took the time to look at the mountain tops, stop at the purples, pinks and blues of the sunset, notice the dew on the early morning grass, took the long way home to breathe in the scent of the orange trees blossoming…

This experience has now slowed my life down in an inexplicable way. ‘Perspective’ is a pretty bold word in my life at the moment. And funny enough, I still feel like I do not have time for this…

I am still me, I still feel like the same ‘ol Bee that you all know, stubborn as all hell, but this…this has been a backslap to the face to get my ‘ish together. There will be change.          

I am not in denial, I believe this is happening. However it is still tough to digest that ‘Bee has Cancer’ Ha!? Bee…does not equal cancer. It is so surreal, and yet so real…Now even after treatment number 1,  cutting my hair, watching my hair fall out into my fingers, shaving my head, and now treatment number 2…it's happening however still I am in awe.

Many times I have started out describing myself as a ‘contradiction’. For those of you, who know me well, will understand that portrayal. This is definitely another contradiction, a paradox, an oxymoron, a glitch in the matrix, and weirdly enough I am ok with it. This is how it is supposed to be.

It will get worse before it gets better, but I promise you I will be ok. I promise myself that.

Love, Bee

 

“So I pull the switch, the switch, the switch inside my head.
And I see black, black, green,
and brown, brown, brown and blue, yellow, violets, red.
And suddenly a light appears inside my brain
And I think of my ways,
I think of my days
and know that I have changed”


Some new pics....

The last of it....compliments of David Bee

  

Yep, I'm showing you....ugh...

I love Aang. Wish it was Halloween...

Henna job?

My wig (Thanks Pammy and Steve)

 

 

Fun with Scissors

Hair started to fall out yesterday morning in long strands - so it was time to get my cut on. I could have held out a few more days potentially - but there was no need to really. Just gotta take a deep breath and dive in!

I thought I was going to be very emotional about it all- but surprisingly not one tear was shed...not even 24 hours later. I am kinda diggin' the do and will sport it with pride as long as it lasts. xoxo

I would have never...ever...EVER cut my hair this short on my own, so it is kind fun to see how it all turned out. I love it. 

A special thanks to Nicole Conley - a very dear friend (and my hairdresser for the evening). 

Also, thanks to all the support and compliments thus far. This journey has been so much more smooth, thus far, because of all the love and support. 

~Grateful Bee

The beginning...

Thanks Nicole! (This piece is for Locks of Love) 

All my hair...

Not too shabby

My 'do' for no more than a week...gotta make it fresh and fun!

Technical Difficulties

I am sorry its been a while since the last post. I had some technical difficulties getting online, but we figured out things at the Beehive and I am good to go...
I did write out a whole new post in Word , which I still need to continue and send soon. For now, I will just post a quick update with some news.

It has been confirmed that I have Stage II Non-Hodgkin's Primary Mediastinal Lymphoma. A very rare case of the Diffuse B Cell lymphomas. It is "contained" which is good, and very treatable. It is still pressing against my heart which is of concern - however with the treatment it will reduce that pressure. Relatively speaking, this is a 'good' thing, that I have caught it so early; especially since this is a fast growing cancer. It probably just started within the last 6 months....so I am thankful. Word of advice: "Bumps are bad"! Do not ignore them, if you have a bump get it checked out as soon as possible. You just never know. I didn't think mine was anything, however I am super happy that I had it looked at anyways.

Today and since, Monday November 12th - after my first treatment, I have already had some relief. I am no longer constantly coughing with a dry cough; it has died down significantly. Also, the bump on my clavicle has also dwindled away. Not completely, but it is so small in comparison to before the treatment.

I went and saw the radiologist regarding radiation at the end of chemo. I believe I am going to go forward with that just to make sure that we get rid of any leftovers. :P More details to come on that...

Overall, I have had some but not major side effects. I am happy to say that I don't have crazy nausea. I do have a constant headache and sinus pressure in my eyes, ears, nose, head...Also, I have major lightheadedness about 2 times a days right now. Its enough to make me have to sit down and get my barrings. This is probably my body saying "you will eventually need to take naps during the day".

I am staying positive and hopeful. I am very (not so happily) anxious about my hair falling out - it has kept me up at night. I am on day 10 - and they say it should start to fall day 14. We shall see.... (poop)
I have a wig (THANK YOU PAM AND STEVE!!!!) and it looks very similar to my own hair.
I have lots of hats and scarfs (THANK YOU PAM and GIS TEAM!)
I have a friend set up to cut my hair once I see that it is falling out. At the beginning of this, I had already decided that I will donate my hair (the non-bleached hair) to LOCKS of LOVE. I think it is something I can do for a little one, that is dealing with the same thing I am. I don't want my hair to go away, but since it is virtually inevitable - at least I will not just be throwing it away. I will be giving it to someone in need, and I just love that idea.

Here's a silly pic of my wig....

Lots of love to all. Thank you for your constant support and love. I am truly blessed.

Bee

The Eye of the Tornado

So it has been a few days since I wrote, so time for an update! This week has been full of anticipation – with some ups and some downs. I definitely feel the fear of starting something so foreign, so incomprehensible to me. At the moment my emotions are twisting like a tornado…all around me things feel chaotic, my life is being uprooted and out of control, but in the center of all this there is some calm…there is the eye of the tornado. I have a sense of peace, a sense of control, a sense of understanding. Hard to explain, however it is the confidence that I will overcome this.

I went to my Chemo 101 class last night. I had great support from my family: David, Candice, DYLAN!, mom and dad. I was really happy that David and Candice were there because it explained all my possible symptoms, what to eat and not eat, and basically all that is to be expected. I did well and took a lot of notes during the class…yet I did breakdown for a few minutes when they talked about losing my hair. Ugh! My hair has finally getting long again, and it is really pretty – I must say, hehe. I have been having so many ‘good hair days’ lately, and now I am going to lose it. I really just hate that part. In my mind, I am a bratty toddler, stomping my feet, whining “no…no…NO!” I really don’t want this part to happen, but I’m gonna have to get over it. Hopefully once I go wig shopping I will find some that I just adore and can have fun with. Have to make the best of all of it – so that is the plan.

Some ups this week?! I completed the MUGA scan and my heart IS A pumpin’ great! So although there is pressure there from my stubborn lymph nodes it is not in the way of my heart doing its job. I had my PET scan and will have results next week; this will give me my staging. Hopefully I am Stage I or II…the doc thinks Stage II, soon I will know for sure. Sneeky me, looked at the monitor before I left the PET scan portable and I saw glowing at my neck (expected) and’ down below’ (not expected). Of course, I Google – and I found out that the glowing doesn’t always mean you have cancer in those spots – whew! The glowing shows movement, and the movement is rated. The rating tells you if it is cancer movement or just other movement. Cancer cells move so you will see glowing there, but other parts move too – like intestines, so I am hopeful that the ‘down below’ glow was just digestion. All the glowy parts will be rated and that will determine where the cancer lives and also will determine my final staging. We shall see.

I got my results back from the brutal bone marrow biopsy…and…(drum roll please)…bones are NEGATIVE for lymphoma. Yippee!!!! I was so so pleased, and so relieved. Finally, some good news for a change. I like this.

I found out that after my first treatment, my cough will go away, my enlarged lymph node on my neck will no longer be enlarged, and the pressure I feel in my chest will go away as well. That is exciting. I am so over this cough and the pressure is bothersome, so I am anxious. The nurse did say that I may have an adverse reaction to the chemo around the chest area however. Since they are all clustered there, and the chemo is fighting them off – they will start to break and move and it may cause a bad reaction. She said to be aware, it may happen…but it may not. I will see Monday morning.

Of course the chemo will make me feel ill and nauseated and I will have to track my symptoms to 1) know if they are real bad and have to go to the hospital and 2) figure out what days will be my “good days” and bad days”. I am sure this blog will help document all that, but also I have a notebook of running notes. I did find out that day 7-14 after each treatment, will more than likely be the worst days for fatigue. The White Blood Cells (WBCs) are affected from the chemo and will drop significantly during these days. WBCs redevelop every 24-48 hours, so the body knows to grow these healthy cells back but it has to play catch up. Eventually, the cancer cells get “smart” to the chemo treatments – and this is why (I assume) at the middle of all these treatments it gets a little more rough then the first few rounds. They try to fight back. Knowledge is power, so I am going to try and remember all this when it gets harder than hard – and know that I just need to push back, stand tall, and drop kick the cancer right to the face.

That’s enough for now. Till the next time.

xoxo