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

Part I: Ms. Bee...Start your engine!

First and foremost, thank you for the outpour of emails FB messages, and texts I received so far. I do feel loved and I appreciate all the kind words, recommendations, and prayers. I have read most of them and will get back as soon as I can.

 

Wow, yesterday was an experience to say the least. It was truly the beginning of this wild road trip I must endure. The reality of this is all coming to light – and I was emotionally exhausted. By the end of the day I was exhausted of being exhausted. Went to bed about 9pm, woke up this morning at 2am. Now cannot sleep, so I write.

I had my 9:10am Oncology appointment. My brother, David, and (other mother) Pam joined me. I even had the coordinator from Thoracic surgery there to support me. It was a crowded room but I did not mind, I wanted the support. The doctor finally came in; his name is Dr. Yeh (pronounced “yay”). Kinda funny, if you think about it….nothing “yay” about this. Good thing was, he was more humanized than most doctors, thorough and honest. The thorough and honest part is what I wanted, and appreciated – yet so so hard to take in much of the news that came my way yesterday. It was, to say the least…a truck load of information.  

So we went over my diagnosis again. He asked me what I knew, and I rambled off the medical title given to me “I have Non-Hodgkin’s Lymphoma, Diffuse Large B Cell w/ features compatible with Primary Mediastinal”. He eyes perked up a bit, I can tell he was surprised or a bit amused that I was able to repeat it all back to him. “I know that it is an aggressive growing cancer”. He nods in agreement.

Next he brought up my CT scans again. He showed me the diseased areas (ugh, that sounds so horrible). Most of it appears in my mediastinum, and this is where there is much concern. It was explained to me that Non-Hodgkins (NH) Diffuse Large B Cell is the most common NH lymphoma, however it deriving from the Primary Mediastinal is rare and makes this a bit more complicated. See, the primary mediastinum is basically the center of my chest and very near the heart. From my scans, it shows that these aggressively growing nodes are beginning to, if not already pressing against my heart. MY HEART! So now what?!

 
Before I knew it he is now talking about what all this means for me. First I will need a bone marrow biopsy. “Can you do this today” – “Yes”. Than we will need a PET scan scheduled for this week, Friday. I will know my stage early next week. Doctor still assumes stage II. Also a MUGA scan/test (this is new to me). “A MUGA scan (Multiple Gated Acquisition scan) is an extremely useful noninvasive tool for assessing the function of the heart. The MUGA scan produces a moving image of the beating heart, and from this image several important features can be determined about the health of the cardiac ventricles (the heart’s major pumping chambers).” I will have this today at 3pm. This will check how my heart is functioning currently and if there are any other immediate concerns we need to be aware of. Blood tests, also completed yesterday. One of the blood test helps to obtain my IPI score – almost sounds like a credit score doesn’t it? – this score allows an individual to rate their likelihood of survival. Long story short, I am at low-risk, thank goodness, so my percentages are better than the median.

http://www.cancer.org/cancer/non-hodgkinlymphoma/detailedguide/non-hodgkin-lymphoma-survival-rates

So percentages…this is where it got very scary and very real. This type of disease has a 30-50% curable rate (not survival rate). This means 30-50% are fully cured with no remission. My doc told me that because of my age, good health, and that it appears to be early detection that I am 50/50. Wow…

50% sounds like a coin flip, rush and roulette, paper rock scissors, black or white…yep for the first time I felt the fear rush through my body…I cannot believe he is talking about ‘me’. Ludicrous! Absurd!! Preposterous!!! But no….no, this IS me…I have to digest, I must acknowledge, it is accepted, and now I have to put on my big girl chonies.

To be considered “cured” is a long road ahead. Technically speaking you are not considered “cured” until after 5 years in remission. However, I can be ‘clear of cancer’ and start my remission in approximately 6 months time from now. This is my ultimate goal, and I will take nothing less. My chances of that are more likely (~70-90%) because of my IPI score.

My treatment recipe:

6 cycles of R-CHOP chemotherapy, 1x3weeks
Possible radiation post chemo at the mediastinum (to make sure it is all gone)

Fertility:

Apparently this is not covered with Kaiser medical insurance, will delay my treatment, and we need to start, I am “young” ha!...so his recommendation is to move forward with chemo as soon as possible with the high hopes that all girl-stuff function will return after. (I have so many thoughts and emotions around this, but will leave this at this).  

I have chemo 101 class this week, and I start my first chemotherapy treatment THIS Monday....Man... 7 hours of treatment. Riverside facility. Yes, I am scared. I think this is the scariest thing I have to do in my life so far. But… I must be more tenacious than my antagonistic lymph nodes.

There is a lot more I can write however I will end my post for now and continue on at another time. I think I covered most of it. I know many of you are worried, love me, and have so many questions – please do not text message me with complicated medical questions, however you are welcome to send me an email or post and I will get back to it.

Yesterday was a hard day, and the toughest thus far. I have a long road ahead, I know this, and I will not give up. I will be ok, and I will get through this – even on my darkest days – I know me. I am very…very stubborn – so I know I will get through this. People say that God does not give us something we cannot handle, and I believe that to be true. I have no doubt that I will not enjoy much of this, but I will overcome it. I have been through other challenges – medically, mentally, physically, emotionally – and I have come out victorious. Not always right away, pretty much never on my time-frame, some I may even still be dealing with….however  -  I get there. (stubborn, remember – hehe).

 

So, do not fret. This is only the beginning.

xoxo

Prelude: Never Let your Fear Decide your Fate

Hi Everyone, 

You are all people that are part of my life that I love and care about…and I know care about me too. I am a very lucky girl to have so many friends and family. I have some news to tell you all, and I thought that this would be the best way to do that. 

A month ago I went to the doctor to check out a bump on my left clavicle. I thought it was nothing really. I had woken up funny a week prior and thought I had just pulled a muscle or something. After it didn't go away I wanted to get it checked out. The x-ray showed that it was “white tissue” – which had my doctor’s face drop and instantly I was worried. Of course, than he turned to me and said “Don’t worry………yet. It could be an infection or something else….”I was thinking “something other than what?! – The “C” word ?!?!... No, no way –not me.

So I had a neck CT the following week. Two days later, one day before I was supposed to go to Cancun for vacation, I got a call from Kaiser. ‘Barbara, you have a growth from your left lymph node in your neck down to the chest area’. Needless to say the doctor insisted I cancel my travels, and 2 days later I had a second CT of my chest.  A few days after that, I went to the chest surgeon who brought up my scans. The surgeon told me he wouldn't be my doctor moving forward (no surgery needed), but he will give me the preliminary results from my scans. “See….here….and then here and here” He says to me as he is scrolling through the CT scans that are impossible for a normal human being to read. He was showing me 3 places where I had swollen lymph nodes: 1 on my neck and 2 by my thymus gland (chest). “Basically you have Hodgkin’s Lymphoma. Probably Stage 1 or 2 but the biopsy and PET scan will tell you for sure”.

And that was that….I was just told that I have cancer. Crap!

That Friday, on 10/26/2012, I had my lymph node biopsy. A week later, 11/2/2012 the final results came in that I have Non-Hodgkin’s Lymphoma– (Diffuse Large B Cell w/ features compatible with Primary Mediastinal). So the doc was incorrect about Hodgkin’s vs. Non-Hodgkins….but he wasn't mistaken about ‘cancer’. Ugh!

I received my pathology report today from my doctor….which lists out all the different findings from the biopsy stain tests. I can just imagine a row of petri dishes with my tissue swimming around inside of each of them and the pathologist looking through a microscope to see my fate. Double Ugh!

So…my first appointment with Oncology is tomorrow morning, which I am taking as my ‘Orientation to Cancer’ day, sounds pretty exciting, huh?! *shaking my head in disbelief* In all seriousness, I will learn a lot tomorrow, and much more moving forward. I do know that I will be getting a PET scan sometime soon to determine the stage of lymphoma cancer, and more likely than not I will be getting a bone marrow biopsy to determine whether it has reached the bones. (crossing my fingers that is not the case).

I have done a lot of researching and this is what I have found consistent from many web-sites in regards to my diagnosis thus far:

Diffuse Large B Cell :
· Diffuse large B-cell lymphoma is a lymphoma of B-cells (Duh!)
· It is the most common type of non-Hodgkin lymphoma among adults
· It is an aggressive lymphoma, meaning the lymphoma grows quickly, and can spread fast to different parts of the body (this is scary!)
· However, high grade lymphomas are also more likely to be cured with treatment (this is good!)
· B cells: B cells fight infection by producing antibodies that neutralize foreign invaders. Most non-Hodgkin's lymphoma arises from B cells. Subtypes of non-Hodgkin's lymphoma that involve B cells include diffuse large B-cell lymphoma
· Causes: exact cause of Non-Hodgkin Lymphoma is still unknown (awesome news!#$%!)

Mediastinal: (remember I have “compatible with Primary Mediastinal”)
· Mediastinal large B-cell lymphoma is a rare type of diffuse large B-cell lymphoma
· It begins in the thymus gland (middle of chest)
· This lymphoma usually affects younger people aged 25-40, and is more common in women than in men (ah-ha!)
· Causes: The causes of mediastinal large B-cell lymphoma are unknown (Barg!)
· It is not infectious and cannot be passed on to other people

Symptoms I have:
· Cough (check!)
· Pain in chest (check!)…due to swelling of the thymus gland and lymph nodes in the mediastinum
· Fatigue (check!)

Symptoms I have not had:
· Flu (nope!)
· Drenching night sweats (not drenching sweats…)
· Weight loss (not dramatic)

So…in the very near future my life will change dramatically…things will be different, and I will be learning A LOT. What I expect is chemotherapy and/or radiation treatments for the next 4-7 months. I will lose my hair–which I am freakin’ out over almost as much as being told I have cancer. So, hats and scarfs are my Christmas list wish, hint hint ;) The good news is, I hear I will also lose my armpit hair and leg hair…I don’t mind that so much. I will work part-time, or as much as I can. I will keep my blog up, for all my family and friends. I will read the bible cover to cover, a long over-due goal I have had. I will live at my brother and Candice’s house in Fontana, well “Rancho-Fontana” :) . I will have my dogs with me, yay! I will be with my lovely nephew Dylan, which will be the best medicine. I will have my parents keeping up my house. And most of all, I will fight this!

So, now that this is all written out, said, and done. I want you all to know that I love and care about each and every one of you. I have decided to first write this note, so that everyone is informed. I also decided to create a blog so that my cancer-status-updates-questions-concerns-thoughts-prayers-venting sessions-pictures-and more can be posted through the website - this will be the first post. This is in attempts to not have all my personal-medical junk blasted on Facebook. I don’t need the ‘Facebook world’, knowing and questioning something so personal. If you have a question, anything at all…feel free to send it to 1) the blog, 2) my email: barbara_bee@hotmail.com, or 3) a MESSAGE through Facebook. I will reply when I am ready.

Here is the link to my site; I will do my best to keep it up. It will allow everyone to have a way to contact me, and I am sure it will be therapeutic for me in ways as well.

http://bjbeestrong.blogspot.com/

This is all new, very scary, and emotionally overwhelming for me. However, I am keeping as strong and as positive as humanly possible. I will not allow this cancer to define me…it is only a chapter in The Book of Bee. I will look this fear straight in its eyes, fight it tooth and nail, and I will not let it decide my fate. 

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I’ve bought a big bat. I’m all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss


With Love,

Barbara Bee