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Thursday, October 15, 2015

Ok Body, You can Stop it Now! And a Funny Story

10.15.15
Hello October

Seems like everyone around me is traveling, having fun, playing, being spontaneous, enjoying life, enjoying places, enjoying careers, enjoying goals, helping others make the most of their lives, enjoying nature’s changing of the season’s stunning Fall colors, traveling to exotic places, traveling, traveling, traveling. Enjoying life. Traveling. Enjoying the “fruits of their labor”. Working and doing. Traveling. Going. Doing. Accomplishing. Young, Middle, Old… living life, doing life deeply. Traveling. Traveling. Traveling. Doing. Doing. Doing. What the heck happened to me? I'm too "young", too "unfinished" to be so "handicapped" by incurable cancer. Me- I’m a prisoner of my GI system and my totally DYSFUNCTIONAL immune system.
My life's options, my freedom to really be me, ended over 6 years ago. Please don’t tell me there’s a got to be a way for me to be “normal” again, or "get back" to living my life as I knew it, or travel. Even living on Imodium or Lomotil all the time, wearing a mask in public, etc, is just a small issue of this complex diagnosis. More or less meds, won't fix or alleviate myeloma and it's side effects. Please don’t tell me to be brave and change from Revlimid to a different chemo regimen to pummel myeloma harder. It’s really scary to anticipate new, unknown chemo side effects that could be worse, with multiple additional side effects. At least my current physiological challenges are known, albeit unpredictable. It's a combination of medical science and medical magic determining which drugs to use to kill off myeloma, while not knowing which creates which side effects, how it will affect me treatment-wise, combined with how steroids affect me and myeloma, and how they all interact with each other to kill the cancer cells.
Sorry to rant, it's all so complicated and I JUST WANT TO FEEL GOOD!


So I participate in a few things when chemo fatigue hasn’t completely crippled me. I starve myself prior to events, just so I can “safely” leave the house. Crazy! And then I “pre-game” with Imodium for “insurance”. I try to go into my office when I think it's "safe" and I have a fraction of energy, as that gives me a sense of normalcy and my old self. I try to still have a social life, when I have a fraction of energy. I'm trying to act NORMAL, knowing I AM NOT NORMAL ANYMORE. My body and it’s reactions to things is so unpredictable, and no matter how hard I try, pretend or "force" situations on myself, I'm not normal or healthy. People don’t understand this when they see me, because I look semi-normal, and I make an effort to still be the effervescent Julie everyone knew/knows. 

And so.............. I thought I’d be “safe” this past Tuesday night and go out on a mom/daughter date with another mom and daughter. We picked Olive Garden. I decided on benign soup and salad for my dinner. Nothing spicy, nothing greasy, nothing dramatic. We ate, laughed, talked, reminisced and I thought I would be fine. As usual, I didn’t eat before we went… well except for an Ensure mid-morning with my Acyclovir and a few vitamins (B-12, D-3). So I thought I’d be ok. And I really felt kind of ok throughout the day, and during our meal. But honestly, I always mentally clock watch, knowing I’m on borrowed GI time. But I really thought I’d be ok this time. I noted the location of the restaurant bathroom, just in case lol. But I really thought I’d be ok this time.

So we lingered and chatted. I thought I’d be ok. I think I was gone about 2 hours. Whoohoo, big deal, right. I really thought I’d be ok. AND THEN IT HAPPENED. So incredibly SUDDENLY IT HAPPENED. My daughter and I were walking out to our car… and suddenly, I felt the telltale GI rumble. IT SERIOUSLY COMES ON THAT FAST. NO WARNING. NO DISCOMFORT, THEN BOOM! I can’t believe it. What the heck body! Too late to get back to the restaurant bathroom, and I knew at this point, home is where I needed to be, now! Seriously, I’m not going to make it… The closer we get to home, the more DESPERATE I become.

Drive!… Get there!…Drive!... Get home FAST! I warn Alissa I’m pulling into the driveway, not fully parking, and everyone get out of my way…  and hopefully I’ll make it. I seriously cannot believe this is happening to me AGAIN. It comes on that SUDDENLY. There’s NO warning. My GI is NOT “normal” like yours. The volcanic eruption just suddenly happens, and I have no choice… I’m always so shocked. I can’t believe I can go from ok, pretend-normal, to absolutely desperate, I am NOT going to make it to my bathroom status. I barely did, seriously barely, without a second to spare. And there I stayed for a long time. Over and over again, and again and again and again and again until I think I finally fell into bed around 1:00 am. Really body, it’s truly so unbelievable… I’m traumatized each time. In stunned disbelief that this is really my life.


I’m so tired of myeloma, so tired of the cancer life, so tired of thinking about it, so tired of dealing with it, so tired of me and soooooooooooooooooooooo tired of all my side effects. Bet you’re so tired of my same theme, same stupid GI stories, same rants about my volcanic GI experiences.   
So from now on, I’ll feature some funny stories (non GI related!) each time I post, especially since it’s coming to that time of year, where I reminisce about my Fall 2009 diagnosis. How about that!


So back in Spring 2010, during the middle of my initial treatments, when I was so clueless about what it really meant to have cancer, be a cancer patient and undergo cancer treatments, I had a crazy experience while at work seeing students as usual. I really was so na├»ve. What the heck was I thinking!? I should have taken a medical leave and really focused on my health (and still guilty, as I'm still trying to work). But no, I continued on “business as usual”, no matter how awful or crazy I felt, I just kept trying to be normal. Still do. Stupid. It was, (is), just such an out of body experience for me… or better stated…  DENIAL!

So I’m in my office seeing a student when I feel a really strange swelling feeling in my neck. But of course, I keep on counseling, focusing on my student, pretending to myself I’m ok. But I’m really not ok. But always thinking, whatever it is, it will subside and disappear. I’m not used to being a sickie and not feeling ok, so I just keep on going. But I have this funny puffy feeling in my neck, in that area between your neck and your collar bone. I feel a bit light headed too. But I just keep on counseling. But this feeling of swelling intensifies, until I feel like I have a bubble or sponge ball bulging in that area, doubling my neck! I reach up there and sure enough, I’ve got this huge puffy poofy pillow like swelling there, and it’s warm and swollen. I say to my student, “sorry to ask you this, but does my neck look strange to you? Do you see anything weird there”, as I point to that area. She says, “OMG Julie, you have a huge lump there! Your neck is really swollen there. It looks really strange, do you want me to go get someone?” “Well actually”, I replied, “I do feel a bit light headed and woozy, but are you sure you don’t want to finish our appointment?” Seriously, how dumb am I, or how much in cancer denial am I ?! 

So I have my student go out to the front office and tell someone there, who also went to get my daughter (who just happened to work in the next office over). Several people arrived in my office to assess the alien thing bulging out from my neck/collarbone area. ”Are you crazy Julie?!, get the *bleep* out of here and get to ER!” they all yelled at me. “Seriously, is it really that bad”, I laughed back. By this time Alissa had called Jim and he raced over to the college to get me to ER. Shheeesh, calm down everyone. I’ll be fine I’m thinking. I’m such an anti-dramatist and under-reactor. But everyone talked sense into me, and we called my Oncologist, who immediately recommended I start taking Benadryl and get to ER or Urgent Care.  

By the time I arrived at the hospital, this THING was pretty big, and quite puffy and quite annoying. No one could figure out what it was, and decided it was some sort of internal “hematoma”. Secretly I began to worry it would puff up so much it would strangle me! They recommended Benadryl, ice packs and see my Oncologist if it didn’t subside. Everyone was freaking out about it, and I was thinking it was like a ginormous alien blood sucking tick taking up residency inside my neck! Ever see a tick so puffed up it looks like it would pop? Well make that visual about 3x2, and that's what my right side neck looked like!

Sorry, couldn't resist :)
By that time in all my treatments, my whole body felt so alien to me, and so many weird things happened to me daily, and I was so out of control of my body, I figured "It" would just deflate or suffocate me ;) Slowly though, overnight and into the next few days the swelling went down and eventually subsided. No one was ever able to fully identify what happened, but my Oncologist thought it was related to the high dose steroids I was on aggravating the site of a benign “neuroma” tumor I had removed in 1998. We still joke to this day about me being in my office, going on as usual with this alien amoeba blob taking over my body, and I’m just casual and “whatever” about it.

I used to whisper to myself: Cancer’s Not going to Change MY life! I’ll show you stupid cancer! Well, ha ha on me... cancer sure showed me, as here I am almost 6 years later, with cancer and chemo side effects still in charge…



So I came across this AMAZING video the other day, that completely summarizes what I would be doing with the 2nd half of my life after I retired from my extremely rewarding college career, if I didn’t have this stupid cancer that has taken over my life and so completely limited my activities and changed my goals forever.




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

2 comments:

  1. Julie,sorry you are not feeling better but glad you got out with Alissa even
    for a short time.I know how much both of you enjoy that!Your neck story
    is fascinating remembering 1998.Anyway keep smiling and know alot of
    people are praying and thinking positive thoughts about you.
    Ron

    ReplyDelete
    Replies
    1. Thanks Ron for always commenting and checking in!

      Delete

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 chemo
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 chemo
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 is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.