Thanks for checking in and following my ongoing Myeloma cancer blog, which I began June 2010, to document my "summer vacation" at City of Hope Hospital for my Autologous Stem Cell Transplant. I hope you enjoy my candid musings and treatment status updates. Please comment so I know you've stopped by! Look for my 2021 status updates on the 1's, but I'll surprise you and post in-between :)) Thanks for reading, caring and commenting!
Sunday, June 27, 2010
5 Days of Freedom and Counting!
Wednesday, June 23, 2010
Mega Millions Win!!! Update
My Stemmies behaved so well on Monday and Tuesday! .... Millions were collected! So great was the collection... I only had to be hooked up for harvest 2 days !!!
Interesting finding regarding my crazy allergic reaction on both collection days.... the Drs on staff were able to identify my allergic reaction. Turns out I wasn't able to tolerate the "Ethylene Oxide" that is used in the stem cell collection-machine and tubing! Ugh!!! Collection Day 2 they hung a constant Benadryl drip to counter-act my allergy! I am just such a drama-queen of opposites! Great results, but "death-defying" complications!!!
Currently, I'm enjoying not being on ANY pills, chemo, IV's, medications, etc!!! wow!
Altho, you should see me trying to properly take care of my Hickman lines. I'll probably OD on Heparin, as I sometimes forget which line... nevermind... I'll panic all my medical friends following this!!! LOL... I've got the system down now! Funny stories tho...
HERE'S the Stemmies UPDATE:
5.55 million collected on Monday 6/22
3.81 million collected on Tuesday 6/23
For an amazing TOTAL of 9.36 mill stemmies waiting to invigorate and rejuvenate my dysfunctional bone marrow and blood plasma!
How they count them, and so exactly, is beyond my blonde knowledge... but that's my next research project! Thank you MD's, PhD's and RN's for all your expert care of me and my Stemmies!
So I'm feeling fairly 'normal'.... hahahaha I know... 'normal' and Julie is an oxymoron! But Havasu, Horsebackriding, and all my fun things will have to wait for later 2010/2011 ... just enjoying all the success of my Jan-June treatments and thinking about my July COH inpatient-vacation plan... did I mention... I have a date now!
And... I have a Haircut date too... short-cut recommendations welcomed... as I know so many of you didn't like my "mushroom-wedge" cut of the 1990's hahahahahahahaaaaaaaaaaa
Love and thanks to everyone for your wonderful comments!!! I just looooooove what you write!!!! Thank you from my MM-contaminated heart!!! :)
Tuesday, June 22, 2010
Stem Cells, Benadryl and Neopolitan Ice Cream
10:30- we arrive at COH, check in to the Apheresis Lab and I get to see my Hickman in action for a blood draw! Hook me up, snap in the vials... and whooosh...blood flows from my catheter tubes! Glad they function as they should for all the pain and annoyance I've been through! (Thank you Dr K at COH)
1:00- My Stemmies qualify! Yeah! The relevant numbers were something like this: minimum to qualify for collection is 10 and I was at 109... Jim remembers these numbers and is proud of my Stemmies... everyone is excited my numbers are so high... I'm ready, let the collection begin!
1:30- Set me up in a bed, plug me in, more blood vials drawn, talk with Nurses and Drs and hook me up to the amazing Collection machine
1:45ish- I begin a slight cough, body tingling, allergy type coughing, more body tingling as if I had my finger in an electrical socket... keeping my Nurses posted of my developing symptoms (Jim thinks I talk too much) ... coughing and now some asthma type-wheezing... Jim's looking at me like, shut up and quit coughing... but I know... my body is pissed off with something hanging in one of the IV bags.... Drs and Nurses are summoned... and the machine is turned off... as sure enough... I'm having a classic-Julie allergic reaction.. not good... Collection is haulted! Time to consult, discuss a plan of action...
So bring on the BENADRYL! My Best Friend... everyone is amazed how much I can tolerate and still be awake and functional... .25, .50, crank it up to .75 !
2:20ish...the wonderful Drs and Nurses on my case let me know how important it is to wrangle in this allergic reaction and continue with collection, as my numbers are so good they don't want to miss this opportunity... question is... can I now tolerate whatever is in the IV bags that my body previously said NO to?
2:30- my friend Benadryl has kicked IN and kicked OUT the allergic reaction... so I agree to let the collection begin again!
So for the the rest of the afternoon, until after 6:00pm, this amazing machine collects and separates my blood, stem cells and plasma. My collection bag reminds me of Neopolitan Ice Cream with the layers! Red (chocolate) is the blood, light red is the stemmies (strawberry), and clear-yellowish (vanilla) is the plasma!
I'm pretty wiped out at this point... but collection is going great... everyone is happy and impressed with my numbers and amount of Stemmies collected.
Homeward bound around 7:00ish. Yippee! No traffic!
Electrical socket symptoms finally stop hours later... I'm good... but so exhausted... so grateful and thankful to everyone for everything and my Stemmies success! Thank you COH staff for your wonderful care!
Round #2 coming up tomorrow... and I'm armed with boxes of Benadryl and my asthma inhalers... stay tuned :)
Sunday, June 20, 2010
Stem Cell Harvest Week!
Saturday, June 19, 2010
Surgery Fog...Belated Blog!
And the placement is so hilarious to me... I CAN'T post a picture for you of my new chest decorations... I would be cited for indecent exposure on this blog if I did!!! So you get a post surgery picture of me that my newbie-photographer hubby Jim took. So glad it's blurry! Go Jim... :)
Wednesday, June 16, 2010
COH here we come
We're off to City of Hope early tomorrow (Thursday) morning for surgery to implant my Hickman Catheter contraption.
hahahaha on me.... I went from hardly ever taking a pill for anything, to being poked and prodded and injected and implanted with all kinds of interesting things ... make that, life saving things!! Who knew... wow... but what a ride!
So should I post a post-surgery picture??? LOL, maybe that's TMI (too much information) for everyone ???!!!!
You're all AMAZING for following my Blog and posting your wonderful comments! Looooooooooooove and thanks to you all!!
Monday, June 14, 2010
Totally recovered from Chemo!
I keep thinking another Chemo side-effect bomb is going to hit me... as I feel too good for what I've just been through!
As a matter of fact... I feel SO good... we decided to ditch this cancer stuff and make a quick trip to Havasu before all my City of Hope events really begin! I posted this while riding up the river:
Friday, June 11, 2010
Chemo Bites BigTime!
Wake up call for me Thursday! IV Chemo Cytoxan (LOL- make that CyTOXIC - to me!) is some powerful stuff! I sure felt like a "real" cancer patient that night ... sparing you all the details, I was hit with what felt like the "chemo-48 hour-flu"! Leaving my 5+ hour chemo infusion, I felt light headed, bloated, dizzy, blurry, and a little queasy, but not incapacitated. So I thought I would be ok. Little did I know, the "after-life", delayed reaction of IV chemo!
We arrived home, and as always, there was household of people home. Of course everyone wanted to help me, wait on me, serve me something, etc, but at that time, I was beginning to feel "funny", so I headed for my room, and there I remained for over a day or so. Ugh! I remember getting increasingly dizzy, feeling achy and dehydrated, yet full.
At some point, the awful (to me at that time) scent of cooked food came wafting down the hallway to my room. I think my daughter was making some sort of Parmesan Pasta Alfredo (makes me nauseated just writing that...) Soon the bathroom became my best friend. First the "back barn door" events for hours and hours into the night. I was so exhausted I just remember laying on the cool bathroom floor. Then that light headed, dizzy O M G I'm going to get sick, "front barn door" events happened. I was a pretty sick filly for hours and hours and then finally, this awfulness passed and I began to regain strength, and was able to hydrate, and not fear being away from my bathroom.
Hopefully the delightful side effects mean those bratty myeloma cells are running for the hills fast and furiously! The Raid insecticide commercials come to mind as a great visual here too.
Wednesday, June 9, 2010
C O H ~ all day fieldtrip
Tuesday, June 8, 2010
My recent Bone Marrow Biopsy revealed great results! Go Revlimid Chemo and Dexamethasone Steroids! My pill-form "Pac-Men" infiltrated, invaded and successfully attacked the evil Myeloma cancer cells!
Numerically, I went from 60-70 % badly behaving Myeloma cells at diagnosis to 10% now! How's that for success??!!! We're all thrilled and this means we can move forward with the Stem Cell Transplant plan at City of Hope. HUGE THANK YOU TO MY AMAZING ONCOLOGIST AT KAISER Dr. Lee and Nurse Jalee! Couldn't ask for better Doctors and Nurses!!! They are THE BEST!
Big day of many consultations Wednesday at City of Hope... and then Thursday slam those remaining badly behaving Myeloma cells with IV Chemo Cytoxan and begin stem cell building Neupogen shots on Friday! Whew... let the ride begin!
Thank you so much for asking me to report in!
Thank you so much for your continued support, interest, caring, love and AWESOME Blog Comments!!!!
Love you all!!!!
Sunday, June 6, 2010
Julie's June Journey
Monday June 7- receive results from my recent Bone Marrow Biopsy
Wednesday June 9- all day meetings, assessments at City of Hope
Thursday June 10- begin IV Chemo, Cytoxan
Friday June 11- begin Neupogen shots for 1-2 weeks to stimulate Stem Cell Growth- Thank You Nurse Jan!! I'm a whimp and can't imagine injecting myself!!!
Thursday June 17- receive Hickman catheter
June 21-25- Stem Cell Harvest week at COH
July 1 on... COH is my new address for a while as I receive my Stem Cell Transplant and begin the recovery process and rebuild my immune system!
July, August, etc... becomes a "germ free zone" for me! Keep your cooties and germs away from my new Stem Cells!!! :)
I'm sure I'll be updating this frequently... but this is what I know my plan to be at this time.
Hey Myeloma cells... are you scared? We're coming to get you...
Friday, June 4, 2010
Hello Blog ~ City of Hope, Here I Come!
Click the Blog title link for SCT details at COH.
And I cannot say it enough, or express my deep appreciation adequately... but...
THANK YOU SO MUCH TO EVERYONE (in my personal and professional and medical life) FOR YOUR LOVING SUPPORT, ENCOURAGEMENT, FRIENDSHIP, HUMOR, CARDS, FLOWERS, GIFTS, OFFERS OF ASSISTANCE, CALLS, EMAILS, OFFICE PARTIES, BEAUTIFUL PICTURES and for the ....
I am so grateful to all of you... for all that you have done for me... words cannot fully express my heartfelt appreciation and gratitude to all of you!!!
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
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!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
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?”)
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.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.