Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Monday, May 25, 2015

May Madness and Revlimid changes To come

Hello 5.25.15

I think I'll continue on my "less is more", semi wordless pictorial blog theme, as there's so much to say, but I just don't have my usual witty way to convey all this crazy cancerous stuff consuming my life. 
In addition to the passing of our dear family member Claudia (see previous post), I had several others in my circle pass away this month. Too many, too soon, so cruel... makes so little sense to me.


As for me, May was medically challenging. Seems like this Revlimid cycle went on and on and on. I even "cheated" on my Dex schedule, as I'm just so sick of feeling sick and so tired of being tired, and so over dealing with all of this. I didn't take my regular (mg amount) Dex dose, and I skipped a few weeks, and then when I did go to take it... lol... I discovered I had never reordered my prescription, so I couldn't take it anyway! I know... shame on me! It's getting more difficult all the time to have "normalcy" and "normal" activities in my life, so this month I cheated on the Dex (not the Rev). It's gotten so bad, that to go anywhere anymore, I can't eat beforehand or during any event. I went to a wedding up a very remote canyon and realized how awful it would have been had I had a GI emergency... I ate a few bread-rolls and left not long after the ceremony. In my pre-cancer life, I would have been one of last off the dance floor...

So here's my current life in pictures:

My "chew and poo" life


I start with these

Then move on to this


Then this



And find myself shaking my head all the time


How the heck did I wind up in this ridiculous situation




So at my last oncology appointment, I suggested to my Dr that I go full on 15mg, but do 2 weeks on/2 weeks off (instead of 3/1) to give my challenged body a break. Yes, I know... word is you're supposed to hit cancer hard and heavy... but I am just so tired of feeling awful and having such a limited life...  it's all about finding treatment I can "live" with.




My life in numbers:

WBC's = 2.7 (low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 117 (low), normal range= 130 - 400
M-Protein = .88 (yippee! a bit lower than last month), normal = Zero
IgA= 1320 = (up from last month :(  70 - 400 = normal range
ANC = 1.3 (low), normal range= 1.8 - 7.7


I'd sure like to be on this journey!

So I'll start this new Rev (15mg) cycle in a week... and let you know how it goes. Maybe 2 weeks of a solid higher dose might work better than 3 weeks of a slightly lower dose... 


Mother's Day 5.10.15


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!


Tuesday, May 5, 2015

My Heart and Head Hurts so Much

5.5.15


My head aches from too many thoughts
My heart hurts more than words can convey
Especially for those who's hearts are overflowing with so much pain and sadness

I have so much to say, but for this blog... pictures will tell the story...


I don't understand you stupid cancer


Diagnosed T-cell Lymphoma late Nov, 2014 

 Mom and daughters


Allogeneic (brother/donor) stem cell transplant March 31, 2015


last family portraits...


last beach ride, Ashley and Mom 


last beach trip, Jordan and Mom


last Christmas


cancer benefit color run


~    ~    ~    ~

Forever free:
May 6, 2015


5.1.2015



My 5 year COH SCT Reunion
so very bittersweet...

I'm so grateful
But with a heavy, sad heart

I understand the meaning of "survivor's guilt" ...





Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!



Wednesday, April 15, 2015

Taxing Times

Are you feeling "taxed" today? (ha ha sorry!) Imagine if having cancer was a "tax deduction"! Stupid Myeloma, you "tax" me mentally and physically! Ok, enough of tax-day puns :)

I really wasn't going to post today, 4-15-15, but I receive so many kind inquiries, comments, messages, emails, that many of you are now regularly checking in on the FIVES! Guess I really started a trend here when I mentioned this would be my year of the Fives and I would post on the 5th or 15th or 25th.Thank you for paying attention to my numerical silliness, and looking forward to my "On the Fives" posts.


So not to disappoint, here I am sneaking a post in under the 15th wire.

Not much new to report since my previous on-the-5th blog, where I updated my yucky status and stats. My now over-used response to "How are you doing Julie", is... "Different day, Same story". Side effects and daily challenges have become ridiculously predictable (kinda a good thing), but I'll just never get used to being a sickie and feeling so lousy, so much of the time, and being so limited in what I can and cannot do.

But a bigger story than me, is my son's girlfriend's mom who has been hospitalized since the end of March for her Allogeneic (donor) transplant. She was diagnosed last September with CLL (lymphoma), stage 4/4. Immediate intense chemo for 4 months, then an Allogeneic (donor) Stem Cell transplant. Fortunately her brother was a "perfect" match, and she is half way through the torturous process. She's had a very challenging time with all the treatments and awful side effects. My gut aches for her, knowing first hand what she's going through. She had several months of high dose IV chemo at the beginning of the year, then 11 radiation treatments just prior to SCT, then high dose chemo again, then the transplant/infusion March 31. Ugh! Such a chemo-warrior she is! As she battles to heal, we look forward to our transplant success celebration.


We went to visit her this past weekend, and it was the first time I visited the actual hospital floor where I had my SCT July 5, 2010. Quite emotional for me, walking the halls, being in the hospital where I experienced my month long transplant ordeal, now almost 5 years ago...


I will never, ever, forget these views


It's truly amazing what a person can tolerate when required to, to save your life... And can you even believe: us 2 moms, both diagnosed with blood cancers, 5 years apart, same doctors, same hospital, similar treatments...  
Really now Universe, what IS this all about?!

One day at a time
One challenge at a time


So all of you want me to travel, do that bucket list, go to Hawaii? Read this!
The story about the woman with cancer, removed from a flight, due to the airline's concern about the safety of her traveling from Hawaii to CA! And what was her diagnosis... Myeloma of course!

 ===========================
About Multiple Myeloma (MM)
Multiple myeloma is a cancer of the plasma cell. It is the second most common blood cancer. An estimated 24,050 adults (13,500 men and 10,550 women) in the United States will be diagnosed (in 2014) with MM and an estimated 11,090 people are predicted to die from the disease.  
The five-year survival rate is approximately 43%, versus 28% in 1998.
===========================

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!

Sunday, April 5, 2015

Perhaps I should Buzz my Goldilocks...Longer Hair and Fake Normalcy is Status Confusing

Happy April everyone!

I am twisted enough to have considered posting on April 1, April-Fool's-Day, something like: OMG! I'm cured! Myeloma is gone! But then I realized that would be a bit too twisted! So I reined in my silly humor, as honestly, rare is the day I feel "good" and that would have been way too misleading.

I'm always surprised when people think I'm ok/off treatment/cured, based on my external appearance. Perhaps it's because I always fix myself up, chat it up energetically as I've always done, and for about 6 months now, I've let my hair grow out. Further, I don't have a tattoo with my Myeloma diagnosis ;) and most have no idea Myeloma is incurable/terminal. So Goldilocks and Revlimid, you confuse everyone!


I had my monthly Hema/Oncol appointment this past week. We reviewed my blood stats, myeloma numbers and April treatment options. We also discussed all my very unpleasant (multiple) side effects. So do you think I wanted to increase my chemo dose and type for this next cycle? Do you think my Dr wants me to?
The answers are:
Me= NO!
My Dr = Yes, but No.
Me= I'm kinda of "terrified" of adding additional and different chemo/treatment options. At least my current side effects are predictable and known. Adding additional chemos to Revlimid frankly scares me... a lot.
Me= not brave any more.
My creative combo of Revlimid 15mg alternating with Revlimd 10mg is only kinda, slightly, hardly making a dent in my myeloma numbers. IgA went up this month (boo). But, my M-Protein did go down slightly (yay!) My WBC's and immune system continues to be challenged and very compromised.

My treatment life

Yes, if I increase Revlimid to full on 15mg and add Velcade or another chemo, along with current or increased Dex level, to create a "chemo-cocktail", maybe my myeloma numbers will improve. Maybe not. And at what physiological cost? Much more yuckiness, GI issues, Neuropathy, Fatigue, Nausea, Dizziness, an even more compromised immune system and the risk of becoming Neutropenic... and a much more reduced quality of life. I hardly do much now lol... what would a chemo-cocktail do to me. Force me on disability? Take away what little fun times I have now?


Well my Dr and I decided not to change anything... yet. She's very concerned about what an increased dose will do to my already debilitated immune system. And we both agreed that the slight changes to my myeloma stats were still ok for now. I know what most of you are probably thinking... What are You doing Julie!.. crank up the chemo and hit myeloma hard so your numbers will go down. Ugh, truly, I'm just so sick of feeling sick and I don't want to feel sicker. I'm always processing the concept of "quality vs quantity".


Here's my current stats:
  
WBC's = 2.8 (low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 120 (low), normal range= 130 - 400
M-Protein = .96 (yippee! a bit lower than last month), normal = Zero
IgA= 1360 = (up from last month :(  70 - 400 = normal range
ANC = 1.6 (low), normal range= 1.8 - 7.7
So far my kidney and liver function remains stable. Must be all the endless hydration I do!


So that's my update for now.
I do what I can do on the the days I do what I can. Everyone asks why I'm not on disability or retired. I love what I do professionally! I still make a difference in a "few" student's lives, I have a brand new, full window "corner office", I love my colleagues and campus, and it's really not an easy decision to say good-bye to an over 30+ year career. Besides my family/animals/home life, being a college counselor has been my life. It's just not that simple to close the door One Final Time.
Myeloma will dictate when...

Jim and I had an appointment in the "city" on Friday. I decided on an instant bucket list moment and took the LONG way home :)



And here's a bucket list item who's time has come and gone for me, 
But I happily live vicariously via extraordinary people: 
2011 All American Quarter Horse Congress Freestyle, Bridleless presentation



 Happy Easter, Happy Spring



Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
 

Sunday, March 15, 2015

Cool VW's and a Porta-Potty

And just when I was trying to have a little fun...
This happened!


Oh well... my current life can be summed up as:
Trying to be (somewhat) Normal under (very) Abnormal circumstances.

And so it goes...that fine line between “tragedy and humor”. I have endless amounts of both in my current life. My "tragedies" are quite humorous (at least to me), and I prefer to find as much humor in my ridiculous circumstances as possible. But before I continue with my story, READ NO FURTHER if you are tired of my “Chew and Poo” stories, or squeamish about biological functions stories.

If you know me, or have followed my blog for a while, you know by now that one of my greatest myeloma challenges is my sudden, surprising, volcanic GI side effects. In as much as I can, I try to plan (the few) social events, work, and things outside my house on my “good GI days”. Truth be told, my most effective anti-poo technique is to “starve” myself prior to events, just so I don’t have to worry about GI surprises. So on GI challenging days I just stay home, knowing my unpredictable and without much warning GI events can hit me fast. Yet I'm not ready to stay home all the time, dang it!! As much I as I try to manage and predict my side effects, my body has other plans for me… and at the most INOPPORTUNE times! This story is about that!


So in my effort to have some semblance of quality of life, do a few bucket list items, and just have fun, I recently entered my cute lil Bug in a VW-only car show. My story and picture were even featured on their event website. I rounded up several friends, neighbors, students, etc, to enter their VW’s too. So of course, I had to be there! No option for cancellation, stupid cancer and side effects!


Knowing this was an evening event and Jim and I would be gone from the house for 4+ hours, I knew we had to eat something hours prior to the show. So I made us what I thought would be bland, benign and easily digestible: a delish cucumber, tomato, basil and herb sandwich. All seemed to be fine as I readied my Bug for the show. Then suddenly, I began to feel that telltale GI unrest 30 min before we were supposed to leave to meet our group!! I just couldn’t believe my BAD luck, and immediately regretted eating. Dumb me for breaking my own rule of No Eating Prior to Events! I thought to call my VW buddies and let them know to go ahead of me. But dang it GI system, NO!, you’re not going to ruin my fun! So off we went to the show, me trying to mentally will my GI to calm down and be ok!

So sweet! So cool!


Wow! It was like a giant VW block party! Beetles, Buses, Karman Gias, Things, etc. So cute, so fun, so many colors, so much love and care that goes into everyone’s “babies”. People recognized me and my lil Bug from the website and asked about my “Bucket List Bug” story. Chat Chat, laugh laugh, Hi Hi, meet meet, greet greet, and thennnnnnnnnnnnnnnnn…  ggggrrrrrrr… rumble rumble, grumble grumble went my gut! I continued to chat, thinking I could will this impending GI doom away… but suddenly I realized I was in BIG, urgent trouble! I turned to my son and asked him how far away he parked and maybe he should take me home. Then more angry, fierce, GI gurgling and I knew I was doomed and wouldn't even make it to his car to get me home!

No joke, and just in the nick of time, I noticed two lovely porta-potties were placed not far from where we parked.  Ah, the irony was so very laughable! I just couldn't believe our group randomly parked by the potties! Well if you know me, you know I am no fan of public bathrooms, not to mention porta-potties! And I’m thinking, GREAT, I’ll be spending the rest of the show inside a frikn porta potty on a public parking lot. I really couldn’t believe what was happening to me, and during the rare event I planned... but knew I had to act fast, really fast... Well friends, I will spare you any more GI details here…  I’ll just say thank you to the show organizers for your ever so ironic and convenient potty placement just for me tonight! 

LOL! you can see me back there in front of the strategically placed potties!
Seriously, I'm thinking... ME- immune compromised cancer patient on chemo, inside a public porta-potty, it’s dark now, and I’m feeling shocked and GI awful!.. and I couldn’t help but remember that crazy “Jackass Show” where the guys went on a gross porta-potty tipping escapade. OMG!… what if some “hoodlum” kids decided to tip me over?! ...on a positive note, there was a hand sanitizer dispenser!

I eventually made it back to the show, mingled with all my VW pals and tried to have as much fun as I could, even though I was “traumatized” by my GI sabotage, and couldn’t wait to get home… well, you know why…because...


So what have I learned?
As much as I try to be normal, I’m not. As much as I want to do things, I really can’t. As much as I think I can outsmart my GI system, I can’t. As much as I think I’m in control of my body, I’m not. As much as I think I can win this cancer battle, I have to realize there is absolutely NO predicting what my body is going to do to me!

The next day I took my Dex steroids and had a nice GI respite for about 48hrs!!  I’m not sure what happened, but mid-day Sunday, I started getting so sick again, and suffered throughout the afternoon, into the evening and night. I felt so awful I couldn’t even finish this blog and post it. Finally now able to keep some ginger tea and ginger cookies in me. Ugh...so exhausted...or should I say... "pooped out" ;)

Perhaps I should rename this blog: Julie’s Adventures in Poo-land!

Thank you lil Bug for my super fun and funny adventures!


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!

 

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint!) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan
Neupogen to build up stem cells for apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic