Jaclyn's 2 5K's and Minnie's Miracles

Initially, whilst intoxicated, I mentioned to my cousin that I would love to run a 5K for leukemia and thought that maybe I could do it.  As it turns out, the Leukemia & Lymphoma Society (LLS) only participates in large marathons and triathlons in the area. I'm not that great of an athlete just yet. 

However, I did find two events in which I can run a 5K and for good causes. One is the Dunellen's Fifteenth Annual Run for Education on September 15 and the other is Mendham Borough's Harvest Hustle on September 29. (My cousin is a Phys Ed teacher for the school and in the spring I may be able to introduce Zumba(r) to some of her classes too!) I am trying to run in both 5Ks. It is just a personal goal I've had for a while to be part of a fundraising event where I do more than just get out my credit card.  I've run a mile a day for the past three days. I can hardly walk, but the running is getting easier. I hope to get to two miles a day by next week. I may not be able to run the first 5K the whole way through, so I am going to use it as a stepping stone. 

While running two thoughts go in my head: 1. "Slow and steady wins the race." I have a tendency to be impatient and rush through things, running has apparently become one of those things. 2. "If my mother could give birth to me, I can run three miles for her." Like I said, I initially wanted to run for my mother but she has insisted that I run for myself. So, here we go!!! 

That being said, I created the team "Minnie's Miracles" on the LLS.org site and have recruited several people already to join the team and donate toward our team's goal. You can view My Personal Fundraising Page or Minnie's Miracles Team Page. They do have a fundraising event that includes walking, not running, so I'm doing that too. 

Also, plane tickets have been purchased for a trip with the manfriend to St. Louis in October. Trying to put more pins in the globe! Stay tuned. 

“The miracle isn't that I finished. The miracle is that I had the courage to start.” 

― John Bingham, No Need for Speed: A Beginner's Guide to the Joy of Running

Cancer Center Update & News on Other Things

Of course, of course, of course... 

When I post to the blog and I think that I have no more news, I get more news. Typical. 

Anyway, the Cancer Center has informed us that no action can be taken on M until she is ready to go home from RWJ. When they know that her levels are up and she can safely go home, then they can begin the process of checking through her medical records to determine what and if any assistance they can provide. They stated that they would need to know about 2-3 days before she is released. 

Also, people in my family have been following the events in Robin Roberts' life, news anchor from channel 7's Good Morning America. She was diagnosed in 2007 with breast cancer and later in 2012 was diagnosed with MDS. Roberts developed the MDS from the chemo treatments she was receiving for her breast cancer; this is a typical way of contracting MDS. Roberts' sister is a match and assisting her with a transplant. I wish tons of luck to her and hope that she can beat it with the transplant before it accumulates into AML. 

You can view some of Roberts' story HERE. Tune into to GMA for more educating stories on MDS for the rest of this week. Also, look into the process of donating your bone marrow. Even though M isn't available to be a participant, someone out there with MDS or AML may need a transplant if their siblings aren't a match. My mother has two sisters and a brother and none of them were a match. Also, earlier in July talks of paying donors for marrow may be available in areas everywhere. You can read more about that HERE. 

“In helping others, we shall help ourselves, for whatever good we give out completes the circle and comes back to us.”

~ Flora Edwards 

Monday - Day 23 in BMTU

M had given her answer to her team of doctors on Friday that she does not wish to pursue another round of chemo. Her doctor wasn't around that day but sent a message through the team that he thought it was a wise decision. They would have wanted to give her the chemo immediately, a five day course instead of seven, with only a 20% of it actually killing the leukemia and a 95% chance of one of her major organs failing. She basically insisted that she'd rather let the leukemia get her than a failed kidney, liver, heart, etc. So far, she has had a few fevers and more platelet transfusions over the weekend. The last time I brought up platelet counts I mentioned that she couldn't get past 31K. She needed 50K to get her chemo port and that never happened. Recently she has been fluctuating between 13K and 19K but yesterday they went up to 50K. 50K is great for her - she hasn't gone up that high in over a year - but useless now that the chemo is over for the port insertion. Anyway, platelets going up is a great sign, now we just have to get the fevers down (high of 100.6º, not terrible) and her white blood cell count up. For those of you who don't know, white cells cannot be transfused, they regenerate internally but have been depleted with the chemo. Regenerating her white cells, can however, be boosted in the BMTU. She will remain in the BMTU as long as her levels are down. Fingers crossed and prayers that she can get out of there soon. She has now been there for 23 days. 

As a result of the chemo, M has begun to lose her hair. It comes out mostly in the shower and when she brushes/combs it. It comes out in clumps and patches, and usually also on her pillow. My aunt purchased her two wigs that she has been donning since last week. They look awesome -  they are the style that she wanted and the style that she was doing her hair - and they are made from real human hair. If you didn't know that they were wigs you probably couldn't even tell. Aunt S has been shortening M's real hair by trimming it so that the loss isn't as horrific looking when it's long. 

She has significantly lost her appetite and subsequently has lost a significant amount of weight. When I tell you she only weighs about 15-20 lbs more than me, that should be shocking. She's a good 4 or 5 inches taller than me also. Trying to get her to eat is rough since the food at the hospital is less than par and her choices are limited. She cannot eat fresh fruits or vegetables, or anything with raw, uncooked ingredients. Being there for 23 days she has plowed through most, if not all of her choices. Every one has been great at buying her or making her things to eat before they stop in. Big shout outs to my aunts who purchased some soup/sandwiches for her to eat at lunch, and to Pam and Linda bringing her Zupko's pizza last week. I've made her two things and she's eaten them. If she likes it, she will eat it. She scarfed down some Shepherd's Pie last week and Aunt S is bringing her stuffed cabbage today. Hopefully she doesn't need the commode ;) 

So for now, getting her levels back up are key. She has agreed to partake in a clinical trial if one is available to her when the time comes that her levels are up. It would most likely be the Chinese Herbal Root that I had mentioned in my post last week. Also, trying to get in touch with the Cancer Center of Philadelphia over the weekend seemed to be purposeless. Hopefully we can get in contact with them today to see if they have another course of action for M. 

All for now. 

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.

Delicious Ambiguity.” 

~ Gilda Radner

Bad News, Sad News, What to Choose

My mother has received a platelet transfusion every day this week and one blood transfusion yesterday. If you can get there to donate yours, please do... they are only able to store platelets for about 5 days so they are in high demand for cancer patients. Find it in your heart to donate your platelets and blood whenever you can, if you can. It breaks my heart that I can't. 

Results of her bone marrow test were given, of course, when I wasn't there yesterday afternoon but I did learn some information when I got there. M's leukemia has not gone in to remission as a result of her most recent chemo session. I am unsure of the change in percentage of her bone marrow being leukemia but all I know is that the change is not significant enough for her eligibility to receive a transplant. This is the bad news. 

The sad news is that her choices told her yesterday were (From RWJ) 1. Go home. 2. Go through a different round of chemo, there is a 70% chance it may disrupt/destroy one or more of her major organs and a 20% chance of it even doing anything positive - and he wants her to start it TONIGHT or 3. A clinical trial which consists of a Chinese Herbal Root that would be given intravenously. (Some people in my family want to try this, others are totally against it). 

What to choose? I can't say. She won't say. I did suggest that she try elsewhere like Sloan Kettering or the Cancer Center.  My aunt and I have made an appointment to speak to a nurse from the Cancer Center in Philadelphia on Friday night over the phone and give them all the pertinent information related to M's case. They are supportive that they can treat her further, but I want to discuss it first [with everyone]. One thing we are all agreeing on (except M) is that she is not going home to do nothing. 

I will be going to the hospital this afternoon to talk to M and her doctor again to ask the ridiculous list of questions that it seems only I can come up with and remember. More later. 

Needed: Prayers, blood, love and platelets. Always, JB 

“Emotions, in my experience, aren't covered by single words. I don't believe in "sadness," "joy," or "regret." Maybe the best proof that the language is patriarchal is that it oversimplifies feeling. I'd like to have at my disposal complicated hybrid emotions, Germanic train-car constructions like, say, "the happiness that attends disaster." Or: "the disappointment of sleeping with one's fantasy." I'd like to show how "intimations of mortality brought on by aging family members" connects with "the hatred of mirrors that begins in middle age." I'd like to have a word for "the sadness inspired by failing restaurants" as well as for "the excitement of getting a room with a minibar." I've never had the right words to describe my life, and now that I've entered my story, I need them more than ever. ” 

― Jeffrey Eugenides, Middlesex

Wednesday: Wonderful Women

I wrote this a few weeks ago when M was diagnosed with leukemia. I wanted to call it something like “What Women Do” or “What Mothers Do” but I can’t decide what to call it. Basically it is a list of things that my mother has done for me or taught me and things that I have noticed I started doing to people around me. Even though I am not a mother, I still try to take care of people around me even when I shouldn’t or don’t have to. If you have ever met my mother you know that she is one of the most generous, sincere and friendliest people you have met. Her strength and spirit are astounding. I am not saying this because she is my mother and she is sick, but I am saying it because it is true. I have always felt this way about her. I was a lucky child who became an even luckier lady and I can only hope to be half the woman she is. If I ever become a mother, I’d never be as awesome as her, although when I was younger I thought I could be, but now that I have learned so much about her I know that isn’t even remotely close to being possible. 

Speaking of “half,” the reason this list is 32 reasons long is because M is 64 and I am half her age this year at 32. She was 32 when I was born - for all you mathematicians out there- so that’s the significance of the #32. 

Hope you like it! 

1. She will cook a meal for others even if she will never get the chance to eat it. 
2. She stretches her body even though she has no intention of exercising. 
3. She will make sure that everyone else is ok even when she isn’t. 
4. She will go to the extreme for herself or for you when no one else will. 
5. She will make sure she looks presentable when no one else is around, just in case someone shows up. 
6. She will stay up late and get up early if that means she can keep an eye on everyone else. 
7. She will buy you something when she goes shopping for herself because she knows the joy it will bring to you. 
8. She will light up at the sound or sight of a child experiencing happiness. 
9. She will over-pack, not just because she thinks ahead, but because she’s afraid that you won’t have thought of everything you’d need. 
10. She will be the biggest fan and supporter of whatever it is you decide to do. 
11. She will learn the words to a song the first time she hears it because it means that much to her. 
12. She will endure endless hours of labor just to see your face. 
13. She will accept every ridiculous hair style you’ll dare to adorn, purely for her own amusement but she will never tell you that. 
14. She will dance no matter how inappropriate it may be. 
15. Even though she has no sense of direction, she will drive you to insanity. 
16. She will embarrass you at every possible moment. 
17. When you have given up, she will show you another way. 
18. When you are hungry, tired, wet, sore, depressed or sick she will feed you, find you a place to sleep, give you her towel, soothe your muscles, cheer you up and give you chicken soup without a second thought. 
19. When you need a shirt ironed, she will iron it. 
20. When you think you have all the shoes you could ever need, she will convince you that another pair couldn’t hurt. 
21. When you pursue a dream that turns into a nightmare, she will be there to make sure you do not give up on your dreams, no matter how frightening. 
22. When you fall in love, she will tell you, “I told you so.” 
23. When you fall out of love, she will tell you, “I told you so.” 
24. When you confide in her that you are ready to settle she will ask you if you’re sure, question  your rationality, and turn your thoughts upside down to make you think about it some more. 
25. When you cut, scrape or bruise yourself, she can kiss it and make it all better, no matter how old you are. 
26. When you embarrass yourself in public she will reassure you that you are amazing, no matter what anyone else thinks. 
27. When you think you have no one else to run to, she will be there. 
28. When you feel walls closing in on you, she will be there holding them back. 
29. She will always, always, always make food taste better than you. 
30. She will go out of her way, even forget her own ambitions and dreams - to make sure that you have all the necessary parts for your trendy hobbies. 
31. When she is sick, she turns to you to take care of everyone when she can’t. She doesn’t want you or anyone else to ever make a fuss over her. She will make sure you have money for food, parking and bottled water at the hospital. She will argue with you when you tell her that you can afford it all on your own, and she will argue with you when you tell her that you are coming to visit again. 
32. And when she needs you the most, she never, ever let you know. 

“A woman is like a tea bag; you never know how strong it is until it's in hot water.” 

― Eleanor Roosevelt, You Learn by Living: Eleven Keys for a More Fulfilling Life

Tuesday Update

Back from the beach... it was nice to get away, but of course I couldn't relax knowing that my mother was so uncomfortable. But anyway: 

Today marks M's first week off chemo. This past week she endured a wicked rash on her legs and arms, low platelets (transfusions, of course), extreme fatigue, but no nausea or vomiting which is great. After visiting with her on Friday I left for the beach but I did spend the afternoon with her yesterday. (For those of you who think it was mean of me to leave her in the hospital and go on "vacation" for three days, trust me, I felt terrible but she insisted that I go. Luckily, I have a great family and support system who could take care of her while I couldn't). My father finally got clearance to go see her since he passed the 10-day mark of his end of chemo also. He is in great health. Besides frequent urination, he hasn't endured any complications. So far he is in the clear, and he will, like I've said, get a full body scan in a few months to check to see that the cancer hasn't gone into remission or resurfaced any where else. 

Yesterday M received the bone marrow test that we have been waiting for, so now we are waiting for the results to see if the leukemia has gone into remission and learn more about the possible transplant. The results can come at any time, we are all on guard. I made it to the hospital at about 1230 pm yesterday and my aunt was there, she left and my father came. Before the test she was given [I think] Vidaza to calm her and reduce nausea and also a local anesthetic. The Vidaza makes her what I call "loopy" but also makes her a little arrogant. Sometimes its funny; I will say something like, "Maybe you should lie down" and she will say "Maybe you should lie down."  She was given a platelet transfusion and with that they give her Benadryl in case of an allergic reaction to the transfusion, just precautionary. So needless to say, yesterday, she slept the entire time I was there. She wanted to take a shower but since she was so out of it and she had just had the bone marrow test they asked that she wait until this morning and I know that one of her favorite nurses, Sarah, gave her a shower. While showering, she has noticed a small amount (not significant to anyone but her) amount of hair loss. This is her worst nightmare. Those of you who know her know how she feels about her hair. However, if she loses more of it she wants to get a wig, which I think is a great idea because she can get whatever style she wants, and never has to do it. Hopefully the loss won't be too significant to harm her pride and dignity. 

She has been completing physical therapy because of her ankles swelling and the foot drop - but she does very well with this and did it already today. Her doctors and nurses think that she is on track and experiencing everything normal - nothing out of the ordinary - and handling it quite well.  She is a trooper, I will admit! All her other organs are in otherwise great health still and besides a loss of appetite (pretty normal) she is doing well. 

So for now, we're waiting again to hear results of this bone marrow test. 

***I posted on Facebook - but please go to RWJ's Blood Donor Page to learn more about donating blood. With my APS, Brian's Crohn's and my dad's cancer - we are all ineligible donate blood - to our own family. Please consider donating on behalf of my mother. Here is my Facebook post: 

For those asking what you can do to help, please take the time out of your day to donate blood and platelets at RWJ. You may donate on behalf of a patient; a doctor has informed my family that a lot of people have already donated on my mother's behalf. The donors are anonymous to us, so thank you, whoever you were. My brother, my father and I all have complications in which we cannot donate blood or platelets, so if you can, please try! And thank you! My mother is also A Rh-positive... pretty common, but platelets cannot be stored for a long period of time and she needs those often. Thank you!

“Sometimes I think illness sits inside every woman, waiting for the right moment to bloom. I have known so many sick women all my life. Women with chronic pain, with ever-gestating diseases. Women with conditions. Men, sure, they have bone snaps, they have backaches, they have a surgery or two, yank out a tonsil, insert a shiny plastic hip. Women get consumed.”― Gillian Flynn, Sharp Objects

Vacation: All I Ever Wanted

Visited M last night after work at the hospital. She is extremely exhausted and kept falling asleep on me. Good news: The chemo is over, for now. She has successfully completed 7 days of an aggressive chemo treatment. She did end this session with a rash and a fever; I believe the highest the fever spiked was 102º the past few days. Usually when that happens they give her blood and platelet transfusions - so she should be getting one of those again today. She has had numerous transfusions while she's been there for the past 11 days - I would safely assume at least 5 or 6. We got word that next Wednesday will mark a week without chemo so she should be getting another bone marrow biopsy that day. If the results show remission - they should be going along with the transplant. The doctor has mentioned that he is certain that he can find M a 100% match out there, somewhere. If her cancer does not go into remission from the induction chemo I believe she will be getting a second round of "consolidation" chemo. It is my understanding that the drugs given in this second session will be at a higher dose, but the same, or possibly new drugs and/or drugs part of a clinical trial.  

Her doctor congratulated her for finishing her session which she thought was amusing. Now, the waiting begins. She may get violently ill this week, so hopes and prayers she pushes through it with the least amount of complications. 

I am taking a break (it was supposed to be a vacation, but now I am calling it a break). The break is basically from my two jobs. I will not return to work until Tuesday and because I am taking a break I will not be updating anything for the blog. Expect a long-winded post Tuesday. I may head down to Ortley for a day or two but I don't want to make plans that I can't stick to. It's too disappointing. Better to be excited when I get there then to be disappointed that I have to go home. 

On another note, check out this "Vacation" gem: 

And in response, my favorite "summer" song of all time: 

I miss these girls. 

“I almost wish we were butterflies and liv'd but three summer days - three such days with you I could fill with more delight than fifty common years could ever contain.” 

― John Keats, Bright Star: Love Letters and Poems of John Keats to Fanny Brawne

Music Monday: Sleeping In

Sleeping In - what I always want to do but never find the time. 

(The Postal Service, 2003) 

Instead of lyrics I thought I'd post trivia (all which can be found here at wikipedia) 

Give Up is the debut album by electronic pop duo The Postal Service. Released on February 19, 2003, it was the second Sub Pop Records release to receive gold certification, and was Sub Pop's best selling album since Nirvana's Bleach. The album peaked at #114 on the U.S. Billboard 200 album chart and sold over 1,000,000 copies.

The band began as a side project between electronic music artist Jimmy Tamborello and Death Cab for Cutie's vocalist Ben Gibbard. They had previously worked together for a track on Dntel's album Life Is Full of Possibilities.

The album was generally well received, and critics commented on its throwbacks to the eighties New Wave genre.

The Postal Service's two members – Ben Gibbard of Death Cab for Cutie and electronic music artist Jimmy Tamborello – had previously collaborated on "(This Is) The Dream of Evan and Chan" before deciding to record a full length album together. The two worked on the album separately; in December 2001, Tamborello sent a CD-R of electronic music to Gibbard, who added melodies and wrote lyrics. He then added drums, guitar and keyboards at Death Cab for Cutie guitarist Chris Walla's recording studio and sent the CD back to Tamborello. This process of mailing each other their work on the album continued; after ten months and two trips by Gibbard to Los Angeles to record vocals, the album was completed. 

The group called themselves "The Postal Service" because of this method of trading ideas. Rilo Kiley's Jenny Lewis provided backup vocals after being cold called by Gibbard, who knew her when Rilo Kiley was on the same label as Death Cab for Cutie. 

“And I thought about how many people have loved those songs. And how many people got through a lot of bad times because of those songs. And how many people enjoyed good times with those songs. And how much those songs really mean. I think it would be great to have written one of those songs. I bet if I wrote one of them, I would be very proud. I hope the people who wrote those songs are happy. I hope they feel it's enough. I really do because they've made me happy. And I'm only one person.” 

― Stephen Chbosky, The Perks of Being a Wallflower

Monday Update

So, I have learned more information about the transplant. A donor is being located for M in the event that her Acute Myelogenous Leukemia (AML) goes into remission as a result of this chemo treatment. Today is her last day of treatment - it has now been 7 continuous days of chemo and 9 days since she was brought in. In a few days they will do another bone marrow test to check the level of AML in her marrow. If it has gone into remission she will be allowed to decide to go ahead with the transplant. In her case, since she was born in Europe she has a greater chance of finding a match because they can basically look all over the world. Guess it's OK to be an immigrant sometimes :) She's not particularly ecstatic about the thought of a transplant. She knows the repercussions and is quite concerned about the chances of it working as opposed to it hurting her. Basically, chemo and the hopeful remission is a band-aid for her AML and the transplant is a cure, but it is looking like a 20% chance of it working/or a 1 in 3 chance. More information about this can be found HERE. 

Hopefully when she comes down of the chemo she won't be as sick as they are anticipating. I certainly hope not. Only time will tell. 

My father was advised that he still cannot go see her, so he has not seen her in 9 days and is upset about that. His last round of chemo was Friday but he will have to wait 10-14 days to see her as he can be toxic to her. 

“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.” 

― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten 

Exhaustion

This week has proven to be nothing less than difficult. Yesterday marks day 3 of chemo for M and she has stopped receiving the first medicine. She will remain on the other chemo treatment until next Tuesday. All week she has been spiking fevers close or almost to 105º and has sufficiently lost her appetite. The nurses and doctors suggest that she is right on track and that all of these side effects are normal. They have started giving her something to hopefully increase her appetite. 

I will be going there around noon to see her. I call her each morning at 830 am just to check on her and today she said that her doctor came in (I don't know whether today or last night) and asked that we get the family together to discuss a possible transplant from a donor. The probability of this being successful is 20% and M doesn't sound too thrilled about that. Hopefully I will learn more later. ***Neither of her two sisters nor brother are a match for marrow transplant, if they were the probability would increase significantly. She is also at the older end of her age bracket for a successful transplant; normally persons her age reject the marrow.*** 

My father has his last and final chemo treatment today. He will be able to go see my mother on Tuesday, when her chemo is ending and his is no longer toxic to her or anyone in the ward. I am not sure if I made this point clear earlier. He has been heartbroken this past week that he cannot see her. 

I believe that is all the information I have for now. It's hard to concentrate when you have a million thoughts running through your head. I apologize for previous and future times that I have neglected to return phone calls, e-mails, texts and invitations to various events. If I am not at the hospital or at work, I am usually home re-charging or trying to sleep. I hope that is understood to my friends at this time. The reason I started this blog is so that I can cohesively gather my thoughts and update anyone who wishes to read it. I do not want to bother anyone with my problems nor do I want to repeat the same information over and over again. I usually have to hear something once, tell an aunt or my father, then Rob, then my mother again, hear it again and once I get to friends and other family I am exhausted. I apologize for my exhaustion. I hope that once I am not so exhausted I can rely on those who understand to listen to me if I need to babble. Right now, I don't. 


“He awoke each morning with the desire to do right, to be a good and meaningful person, to be, as simple as it sounded and as impossible as it actually was, happy. And during the course of each day his heart would descend from his chest into his stomach. By early afternoon he was overcome by the feeling that nothing was right, or nothing was right for him, and by the desire to be alone. By evening he was fulfilled: alone in the magnitude of his grief, alone in his aimless guilt, alone even in his loneliness. I am not sad, he would repeat to himself over and over, I am not sad. As if he might one day convince himself. Or fool himself. Or convince others--the only thing worse than being sad is for others to know that you are sad. I am not sad. I am not sad. Because his life had unlimited potential for happiness, insofar as it was an empty white room. He would fall asleep with his heart at the foot of his bed, like some domesticated animal that was no part of him at all. And each morning he would wake with it again in the cupboard of his rib cage, having become a little heavier, a little weaker, but still pumping. And by the midafternoon he was again overcome with the desire to be somewhere else, someone else, someone else somewhere else. I am not sad.” 
― Jonathan Safran Foer, Everything is Illuminated

Tuesday Philosophy: The Angel and Devil, aka Good v. Evil

After all the waiting – M finally got a PICC line inserted into her arm last night so they can begin the continuous chemo drip. The doctors couldn’t insert the port into her collarbone because her platelets wouldn’t get over 31K. If they had tried to do that yesterday she may have bled out. Finally they decided that the PICC line would suffice, however it started bleeding last night. They waited until around 845 this morning, monitoring her new insertion and started the pre-meds for chemo. As of that time, she was A-OK to start the chemo. I believe she started between 9 am and 930 am. 

She will be receiving Cytarabine and Idarubicin.  

Even though it’s not “Music Monday” - and because I don’t really have much to say today – I will let some music do the talking for me. The bridge of the following song is the title of my blog: “Dance, like no one’s watching you… Dance, like the whole world’s watching you… Dance, like I am watching you… Dance.” It’s just a small quote that reminds me of my mother, because she always enjoyed watching me dance and wanted me to pursue a career in it. She knew better than I did how happy it made me and now I’ve realized how incredibly happy I am when I am dancing. She is currently enthralled that I'm pursuing the Zumba training. I first acquired this CD when she was diagnosed with MDS and it hit me at the right time. If it weren’t so long I’d get it tattooed on me somewhere. That’s all. 

Owned by Parabelle. Reassembling the Icons (2010) Track 9

The Devil Inside Me 

Your voice has that sound again, 
it tells me you've done what you said you wouldn't do. 

You took my life and turned it around. 

I’m barely breathing... Just because 

this is the hand that holds you down, 

doesn't mean you’re stumbling. 

Life’s here behind me and things that aren't said...

And everyone here just winds up scared. 

The angel beside me doesn't even care. 

All the moments turn to memories

through the back of my head.  

Won’t you stop now?

My heart already knows that it’s over; 

but it barely knows it’s alive. 

One thing: you hold me better. And we all need someone, and... 

Life’s here behind me and things that aren't said...

and everyone here just winds up scared. 

The angel beside me doesn't even care. 

We both know the sky here reminds us

of things that aren't fair. 

Well, I’m starting to realize 

the devil inside me wasn't always there. 

Dance... like no one’s watching you, 

Dance... like the whole world’s watching you, 

Dance... like I am watching you, dance. 

Is it over now?  If these are the arms that hold you...

Life’s here behind me and things that aren't said...

And everyone here just winds up scared. 

The angel beside me doesn't even care. 

We both know the sky here reminds us

of things that aren't fair. 

I’m starting to realize 

the devil inside me wasn't always there. 

Do you need me?

I won’t make you better; 

You barely know you’re alive

Do you need me?

I won’t make you happy...

Do you even care? 

Do you even care?

After silence, that which comes nearest to expressing the inexpressible is music.

– Aldous Huxley 

Music Monday

Go go go go now

Out of the nest

It's time

Go go go now

Circus girl without a safety net

Here here now

Don't cry

You raised your hand for the assignment

Tuck those ribbons under your helmet

Be a good soldier

First my left foot

Then my right behind the other

Pantyhose

Running in the cold

Mother the car is here

Somebody leave the light on

Black Chariot for the redhead

Dancing dancing girl And when I dance for him

Somebody leave the light on just in case

I like the dancing

I can remember where I come from

I walked into your dream

And now I've forgotten how to dream my own dream

You are the clever one aren't you

Brides in veils for you

We told you all of our secrets

All but one

So don't you even try

The phone has been disconnected

Dripping with blood

And with time

And with your advice

Poison me against the moon

Mother the car is here

Somebody leave the light on

Black Chariot for the redhead

Dancing dancing girl And when I dance for him

Somebody leave the light on just in case

I like the dancing

I can remember where I come from

I escape into your escape

Into our very favorite fearscape

It's across the the sky

And across my heart

And I cross my legs

Oh my God

First my left foot

Then my right behind the other

Breadcrumbs lost under the snow

Mother

Mother the car is here

Somebody leave the light on

Somebody leave the light on just in case

I like the dancing

Mother

Monday M Update

Over the weekend M had received her results from her bone marrow test. For the past year her bone marrow had been at 18% for leukemia, but after this test it was at 22% - and anything over 20% is considered leukemia so she has been properly diagnosed as having AML - Acute Myeloid  Leukemia. This is pretty common in most MDS adult cases. You can read more about that HERE if you are interested. 


My aunt L and I took her yesterday morning and had her admitted to the Bone Marrow Transplant Center at RWJ . In order for M to have the port inserted under her collarbone for the chemo treatments, she needs to have her platelets up to or over 50K. Hers haven't been over 19K for the past year. Last night she received some platelet transfusions and got her up to 31K. The reason for elevating her platelet count is so that she doesn't run a risk of bleeding out while the port is being inserted. Those with low platelet counts tend to not be able to clot sufficiently while cut and bleeding. They are optimistic that they can get her to over 50K before they insert the port. 


Once the port is inserted (we hope this will be today), she will be getting chemo treatment for the first three days only, then she will be given another chemo treatment that is on a continuous drip for seven days. So for the first three days she will be having two treatments, then the last four days she will just be on the continuous treatment. If this goes as planned she will be finished early next week. However, the treatments she will be getting will shock and affect her immune system greatly so she will need to be in a controlled environment. Her recovery period from this intense treatment is approximately 3 weeks. So, she is staying in her room for at least the next month - it is a positive air flow room in the hospital meaning that all the air in the room is pumped through a HEPA filter to prevent infections. 


When I left her last night she was in good spirits. She was given a Benadryl drip and probably made her a little loopy. When I called her last night she was a little pissed off that her food in RWJ isn't as good as the food in Somerset Medical. She was, to quote her properly, "unimpressed" with its quality. Unfortunately everything that goes in and out of her for the next month is monitored so we can't bring her anything appetizing to eat. When I called her this morning she  informed me that she had a fever of about 102º over night and that they were giving her an antibiotic and acetaminophen for that. No news on when the port will be insert as of 9:00 am, so for now just waiting. I will probably leave work early and try to stay with her this afternoon and keep her company as people come and go. I will try to update the progression of the rest of this information later this week. 

Thursday News & Bonus Recipes!

Thursday News will probably be a weekly thing, as my mother goes to appointments on Mondays and Thursdays. Here's this week's update on my parents: 


I left you last week saying that all of M's levels were satisfactory and they told her to have a nice weekend. She certainly did just that. She attended Johnny Starlight's show at Kisko's on Friday night and had a great time. She actually stayed for the whole thing, which was over around midnight. What a trooper. She kept saying what a great time she was having. 

She had no health problems over the weekend and made me my favorite dinner, Spaghetti and Meatballs on Sunday. I constantly ask her not to make dinners, but she insists. How can I refuse her delicious cooking?!?!? Monday she went back for her Nupergin shot again - and again it made her a little groggy and weak but she asked me to bring Ava over for a run in the yard. On Monday night I put together a turkey burger and oven fries dinner for her to cook Tuesday night and we all ate that together on Tuesday. It's delicious, try it: 

Recipe for Turkey Burgers
1 package ground turkey
1 package dry Ranch dressing mix
1/2 of medium yellow onion
1 clove chopped garlic 
dash of crushed red pepper flakes
a few splashes of Lea & Perrins Worcestershire Sauce (secret weapon, lol) 

Mix all ingredients together in large bowl and form into patties. Coat electric grill or pan with Olive Oil and cook thoroughly. Serve on toasted buns with lettuce and a slab of Jaclyn's Spicy Ranch Sauce:  
Creamy ranch dressing, and a few splashes/shakes of the following: Hot Sauce, Chili Powder, Onion Powder, Garlic Powder, Cajun/Creole spice, Chili Powder, dried Red Pepper Flakes (basically anything red and spicy). The sauce should become light pink in color). This Spicy Ranch Sauce is also great for dipping your Rosemary Oven Fries in, courtesy of Rachael Ray. Here's her recipe: 

4 large Idaho potatoes, scrubbed

1/3-1/2 cup extra virgin olive oil (EVOO), divided
4-5 sprigs fresh rosemary, finely chopped
Salt and freshly ground black pepper
2 teaspoons crushed red pepper flakes, divided
4-5 cloves garlic

Heat oven to 500°F.
Cut 10 wedges from each potato and place on a baking sheet. Drizzle a couple tablespoons of EVOO over the potatoes to coat them lightly, then season with rosemary, salt and pepper and one teaspoon crushed red pepper flakes. Throw a couple cloves cracked garlic on the sheet with potatoes. Roast 25 minutes, turning once.

(I actually made mine the night before and stored them in freezer bags and let them marinate over night. Still delicious). 

If you make the fries first, then prepare everything else, you have a delicious, hearty meal in about 30-40 mins. My family loved it! It's also one of the manfriend's favorites. 

So anyway - M has had a really good week. Today she is going to RWJ for more blood work and a bone marrow sample. Painful, but she is a trooper. She is headed down to Ortley with her sister until Saturday - to give her a little break from sitting in the house all day. 

D (Dad) is doing great too. He had his first chemo treatment on Friday and goes for one tomorrow. That's all for now!!! 

“I think all of us are always five years old in the presence and absence of our parents.” 

― Sherman Alexie, The Absolutely True Diary of a Part-Time Indian

Zumba® Zumba® Zumba®

Last Friday I attended the Zumba® Basic 1 Instructor Training Course. It was amazing. The class was held in a ballroom in Bayville and was a rather large class. The instructor, Kelly Bullard was fantastic. She was knowledgeable, spunky, very energetic and helpful. After this experience I can see why so many people around the world (140 countries!!!) are attending Zumba® classes. (If you are wondering why I am inserting the registered trademark, it's because as an instructor I am obligated to do so now.) I am a member of ZIN (Zumba Instructor Network) and I am searchable through the Zumba website, with my own webpage: JaclynCamarota.Zumba.com. 

Here's a pic of my class:  

(I am on the left of the photo on the floor, in a white shirt... third one in. Our instructor Kelly is lying on the floor in the green pants. All the girls on my side and I became friendly and we are keeping in touch via social media, e-mail, etc.) 


It is going to take some time to develop my own set of choreography and have a catalog of songs and routines that I know by heart so that I can lead others during class and cue them to do the next move. I am more than willing to spend the next few months training at home, as well as attending some new classes. If you know anyone who takes or teaches Zumba® please alert them of my information. Networking is great in this industry. I would love to hear their feedback and take their classes with them. 

Once I get my feet on the ground, or, more importantly, on the dance floor I will update this blog page with a class schedule which will also be available on my instructor page. 

On August 26th I am attending a 3-hour DanZathon in honor of Ziggy, one of my instructor's dogs. He was hit by a car on Father's day but miraculously limped away. Proceeds for this event are going to his medical expenses. If you know me, there's nothing I love more than dancing and dogs! $15 for 3 hours of exercise - a barking bargain!!! If you would like to donate to the cause, or attend the class, or both please  e-mail me at my instructor page or go to Zumba, Dance and Fitness with Mia via Facebook. 

***As an instructor I am now available for these types of events. If you would like to host a Zumba® marathon or fundraiser for your organization or group, please get in contact with me. If you go through my Zumba® page (http://jaclyncamarota.zumba.com) I will be notified by e-mail.*** 

For those of you who attend Susan G. Komen for the Cure events in the fall, Zumba® participates in this as well with their event Party In Pink. If you would like more information and would like to host a Zumbathon® event, please click on the links I've provided. By that time I can help you raise money for your organization with several awesome dance routines! Also, if you're an EclipseFit member on King George Road, they host an event in October as well. 

Happy Feet to All!!! 

Here's a picture of one of my proudest moments: 

“Those who dance are considered insane by those who cannot hear the music.” 

~George Carlin