Friday, July 30, 2010
Late Wednesday July 28, Jim and Scott packed me up and brought me home, as Alissa STERILIZED AND ANTIBACTERIALIZED the house. I was a weeping mess on the way home, not believing my hospital ordeal was finally over. I am grateful for all the wonderful care I received... but being there for the time I was and going through everything I did, minute by minute, day by day... was truly the greatest challenge I have experienced...
I am physically and mentally exhausted... but so enjoying my beautiful home, incredible views of Jim's Greenthumb talents that have created our beautiful parklike front and back yards, loving seeing my animals, horses, love being able to have windows open and breathe fresh air and I love feeling pseudo normal... even though I am far from normal or well. And I love not being attached to the giant IV on wheels. Still wake up in the middle of the night disoriented, ready to roll Mr. IV into the bathroom with me LOL
So glad I bit the bullet and agreed to the PICC line as it was my ticket to FREEDOM :) Enjoying not being a human pin cushion and several of my IV bruises are fading...
I now have a wonderful home health care nurse and this amazing portable IV infusion bottle! Looks like a little mini baby bottle with a rubberized ballon inside. Shrinks with the antibiotic infusion. Amazing! I have such repsect for all these brilliant inventors!
Just returned from City of Hope for my first re-check and I'm gonna make it :) Blood work ok and my lovely infection is shrinking slowly and not as angry. Still really gross tho... so I will have to charge for viewings!
--------------------------> THANK YOUS TO ALL THE WONDERFUL MEDICAL PROFESSIONALS IN MY LIFE, THANK YOUS TO ALL OF YOU FOR YOUR LOVING SUPPORT, THANK YOUS TO MY FAMILY FOR taking over and helping out (Alissa and Scott have such a new reality about all the chores and animal maintenance mom and dad have done for years LOL. Just ask them how much they love their cats especially now ahahahahahahahahaaaaaaaaaaaaaa!!!!)
I appreciate your desire to visit, cook, help, etc... but we are ok... and I just need alone re-adjustment time. You really don't want to see me now... I'm not much fun and don't have much energy. Not to mention, I fear everyone's GERMS more than ever!!!!
I will love to see you in the future, but be ready to mask and glove up, shower before you come, anti-bacterialize every 5 min while you're here, or talk to me from outside... LOL
I'm a bit changed now... not as light and funny and carefree... and I certainly do not have the mental acuity I once had... blonde moments are now continual Chemo-Fog!!!!
But funny thing... I still have 1/3 my hair left and it looks like I just had it high-lighted LOL... perhaps my baby stemmies brought back my baby blonde hair from my childhood...
As always, my deep love and appreciation for your continued interest in my crazy journey, your love and support and your wonderful, life saving postings!!! I love you all!!!
Tuesday, July 27, 2010
So I swallowed my fear and accepted the fact that I must have a Picc line port installed in me as my veins just can't handle the 24/7 IV use! My 3rd vein blew and the Drs and Nurses let me know I'll be on these powerful antibiotics for weeks... just not practical to try to continue to find veins that only last a few days... and... my ticket out of here is the Picc so the IV antibiotics can be administered from home. So I had "room-service" surgery yesterday to install my new port... biting my fear of potential infection and a re do of my current situation...
Everyone here is so wonderful... I appreciate the time they take to explain things to me and reassure me. All's working well and I am actually relieved to not have the pain in my veins and arms from the IV's. Ha, you'd laugh seeing me... bruised arms, taped up wounds, etc. Hopefully this Picc will not cause me any complications and my baby immune system will be able to fight off any invaders! WOW, I never knew how powerful a healthy immune system is... we take so much for granted... how much I've learned with this process... and if you thought I was a germ-a-phob before... I'm a crazy paranoid Mysophobic now!!!!
I'm doing better, on more meds than I can count and keep track of... but they are keeping me alive. I am eating ok and have enjoyed watching all the food channels that I never knew existed before! Don't let the secret out... they are preparing for my discharge this week :)
Thank you for all your love and support throughout this challenging ordeal...
Lots of love and appreciation x0x0x0x0
Friday, July 23, 2010
As always, thank you so very much for your wonderfully supportive, encouraging and loving comments. They boost my spirits and give me strength!
Quick update, as i have to pamper and baby my arm IV so I don't blow another vein. I have quite the challenge here as my current recovery is completely dependent on IV antibiotics and I don't have many veins left for IV's and I will never have a Hickman or Port installed ever ever ever again!!!!
From what my foggy brain can comprehend, my Stem Cell Transplant is doing well and my Stemmies are doing good things in my bone marrow. My immune system is still very fragile and compromised by the horrible Hickman infection. I might have even been home this weekend, had it not been for this major complicaton. Did I mention that the surgeon that removed it told me the other day that it is the worst she's ever seen! Go me!!!
I am feeling better and tired of being sedate and on my bottom so much... I can venture out of my room now with a hepa filter mask and gloves, but I am so scared of germs and having another set back... So here I sit in isolation, living moment by moment, not thinking much beyond... but thrilled I am slowly improving!
Enjoy the sunshine for me
Enjoy all your little freedoms, that we so take for granted
Enjoy your good health and strong immune system
Do something really fun this weekend for me, and let me know :)
Much love and appreciation!
Monday, July 19, 2010
So I've had a "make-over"... in so many many ways... but simply put... I have been so humbled... I have a new reality......eh... will continue that at another time.... too emotional right now................
Here's what my blog titles and comments would have been had I had the energy to post this past week(s)...
The Parade of Amazing COH Professionals
Real Estate RElocation from Floor 6 to 5
Julie has NO immune system and the SCARY consequences of that!
Excruciating PAIN and fevers...
Julie is now Delirious, Infected and living in HICKMAN HELL
Emergency bedside surgery for Hickman Removal
Goodbye Hickman, hello hand-IV
World record for number of simultaneous Antibiotics
The continuing Parade of Amazing COH Professionals
O yeah... I'm actually here for cancer treatment... all the above Drama put that on my back burner!
The Curse and Consequences of having very sensitive hearing
Becoming an Umpa-Lumpa
The Amazing COH Nursing staff CARING for me and SAVING my life
New appreciation for TELEVISION
Thank you Jim for my midnight POPSICLE supply
Of BIG pills and NASTY liquids we're supposed to swallow?? NOT!!
Whoever invented "Meltaways" form meds is a GENIUS!
Huge endless THANK YOU TO THE AMAZING COH PEOPLE TAKING CARE OF ME
Of trying to type with my mainline hand-IV
How much pain can I tolerate... the bar keeps rising...
Must wean myself from IV form Antibiotics to Pill form... if I want to ever go home.......
Still smiling (when I am not weeping), still finding humor (when I am not weeping), still have hair (maybe half left now lol)
VERY MUCH APPRECIATE all of you and your comments, inquiries to my family, cards, and unwavering support and encouragement!!!!!
Sorry I cannot respond individually to you at this time, but know that you are in my thoughts and heart with gratitude galore!!!
July 20- update----
Hand IV vein blew up... need relocation to another vein... altho... I don't have many left... 5 needle probes later... new inner arm IV installed today... I am a certified wreck
More Challenges than I had ever imagined
Good news, I am down from 5 or so Antibiotics to only 3 now... whoo hoo!
Trying to eat, drink, and practice some sort of normalcy
Trying to get ready to take meds by pill form rather than IV so I can go home sometime this year...
I am broken mentally and physically...
BUT HANGING IN THERE BY A THREAD :)
See you all in 2011
Sunday, July 11, 2010
I PROBABLY WROTE IT JUST BEFORE MY HICKMAN CATHETER BECAME REALLY INFECTED AND HAD TO BE QUICKLY REMOVED VIA BEDSIDE SURGERY IN MY ROOM...
Hello my loyal followers... I am definitely waning... I have no appetite, tired a lot, dont have much energy and over all feel pretty lathargic... but I certainly do not lack for mental or physical stimulation!
Daily, I have a delightful parade of professionals stopping by to check in on me. My wonderful team of experts such as Dr Kogut, Dr. Sehebi, Tina NP, my nurse coordinators Mirjana and Estelle, and so as to not let my body atrophy, I have an Occupational Therapist, Renee, a Physical Thereapist Juan and a Recrecation Thereapist, Edwin. And I continue to be blessed with an amazing, round the clock, do it all, staff of RN's and PCA's that take care of my every need 24/7. SINCERE AND HEARTFELT THANKS AND APPRECIATION TO ALL OF YOU FOR ALL YOUR CARE AND CONCERN! I am doing so well because of YOU!!!
SO HERE'S A RECAP OF WHAT I'VE BEEN THROUGH:
AUTOLOGOUS STEM CELL TRANSPLANT
"Autologous HSCT requires the extraction (apheresis) of haematopoietic stem cells (HSC) from the patient and storage of the harvested cells in a freezer. The patient is then treated with high-dose chemotherapy with or without radiotherapy with the intention of eradicating the patient's malignant cell population at the cost of partial or complete bone marrow ablation (destruction of patient's bone marrow function to grow new blood cells). The patient's own stored stem cells are then returned to his/her body, where they replace destroyed tissue and resume the patient's normal blood cell production. Autologous transplants have the advantage of lower risk of infection during the immune-compromised portion of the treatment since the recovery of immune function is rapid. Also, the incidence of patients experiencing rejection (graft-versus-host disease) is very rare due to the donor and recipient being the same individual. These advantages have established autologous HSCT as one of the standard
Why are BMT and PBSCT used in cancer treatment?
One reason BMT and PBSCT are used in cancer treatment is to make it possible for patients to receive very high doses of chemotherapy and/or radiation therapy. To understand more about why BMT and PBSCT are used, it is helpful to understand how chemotherapy and radiation therapy work.
Chemotherapy and radiation therapy generally affect cells that divide rapidly. They are used to treat cancer because cancer cells divide more often than most healthy cells. However, because bone marrow cells also divide frequently, high-dose treatments can severely damage or destroy the patient’s bone marrow. Without healthy bone marrow, the patient is no longer able to make the blood cells needed to carry oxygen, fight infection, and prevent bleeding. BMT and PBSCT replace stem cells destroyed by treatment. The healthy, transplanted stem cells can restore the bone marrow’s ability to produce the blood cells the patient needs."
Friday, July 9, 2010
Sorry I have been absent... but I'm sure you've put 2 + 2 together... to get that I am not my super energizer self anymore... Lots of wonderful stories for you, lots of wonderful people... as a matter of fact... an upcoming blog title will be "The Parade of Professionals"... as i have so many many wonderful people taking care of me and visiting me daily... wonderful Drs, RNs, PCA's, Physical Therapists, Occupational Therapists, Recreational Therapists... they even have me (trying to) exercise in bed and I was trying to Wii at the little on-floor gym, but I don't have the energy for that anymore...
But for now... honestly... I am very tired, fatigued, mentally and physically drained... don't know if I am starving or nauseous; longing for my ol routine... and for of all of you in my life... longing for the view from my own house and yard... longing for the the days gone by... where cancer, myeloma and medical concerns were not in my vocabulary and not the center of my universe and not my moment by moment routine ... I'm going down hill fast... the crash is coming... hopefully my stemmies will pull me through...
Monday, July 5, 2010
Mission Accomplished-------> Chemo and Stemmies have been delivered and infused!!! Here's a pictorial of my adventure here at City of Hope so far. Will write you additional details soon, as I am a bit exhausted from all the partying I've been doing here!!!
4th of July Celebration- IV-ers and Nurses gathered in the exclusive 6th floor lounge, enjoying the panoramic view of fireworks. Patients luxuriated in an endless supply of IV cocktails while our amazing nurses provided us round the clock personalized mobile IV service! THEY ARE THE BEST! LOVE MY NURSES!!!
Saturday, July 3, 2010
Well I am cozily settled into my City of Hope residence dorm... I was so lucky that they allowed me chose my little piece of real estate! I am blessed with a lovely mountain view window looking east towards the mountains of ... I will have to look that up :)
Friday July 2 was a day of orientation and organization. Me and the fam went to lunch, and aptly named it the last supper :) We then lugged my luggage over to the Helford Hospital section and got me settled in and decorated a bit... and then I lost it emotionally........
I've met some lovely, sweet, talented, professional nurses and staff members that helped get me settled in and set me up with my new mobile buddy............my IV tower- who sports tons of liquid bags as hanging decorations! I am officially a Bag Lady now!!!! I am considering naming him Rex or Rx as he carries, holds and dispenses all my meds to me. For those of you who've been hooked up like this, you know the little silly and annoying challenges of being hooked up to this metal monster friend! I have almost tripped over the chord and base legs... almost unintentionally yanking out my plastic tubes connected to my Hickman Catheter installed between my.... boobs... as I am very challenged in the bathroom... if you're skirmish... stop reading here and go marvel at your own private home bathroom and commode! Sitting or squatting is a challenge especially for a germ-a-phob like me... trying to gather up my lounge pants so they don't drag on the floor or touch the toilet; then making sure all my tubage does not contact the commode and then I am required to "produce" into a measuring "hat" for every event I produce! eeekkk.... see this is why I have always found horse poop (in the lovely outdoors) so much more appealing than human biological events! Nicely shaped vegetarian "road apples" ; I'll happily gather those anytime!
I also dropped my brand new hospital issue toothbrush on the floor... what do you think I did with it???? Washed it well then considered using it.... then said.... HELLO NO!!! Tossed that out FAST!. On the way back to bed, Rex-Rx tripped me and landed me in bed sooner than anticipated and angled me in a way that presented new tubage untangling challenges! hahahaha everything I do now is hilarious! The small things have become big challenges, and the big things... like anticipating the 2nd dose of chemo tomorrow ... have become monolith cliff hangers !!!
So before the 11th hour today...the anticipated arrival time of Melphalan Chemo infusion... I DECIDED TO MAKE A BREAK FOR IT... Gathered up Rex-Rx and nonchalantly and casually headed out of my room (6111). I was asked to mask and glove up, and off I went to see my surroundings and options. Ssshhhheeeesssshhhh I'm a mouse in a never ending maze of halls and rooms... but surprizingly, I did find an athletic gym, a lovely sitting room with a view, and I met some lovely couples at various stages of the chemo and Stem Cell infusion process. Everyone was so positive and supportive and encouraging!!! Different diagnosis than mine, but all blood related cancers. Crazy all this cancer... But alas, SuperNurse Theresa came and found me for my first round of Mephalan:
But all in all I am doing ok on Stay Day #2, Chemo Day #1. I don't get much rest as my darling nurses are in and out several times a night checking on me and taking my vitals and vampire vials. Even tho I don't sleep much, I so appreciate their expert nursing knowledge and personal caring! Shifts change and I make new friends every 12 hours :) Everyone is so nice, friendly and helpful!
I also take RexRx for walks around the U shaped floor. They say 4 times around is a 1/2 mile. I'm feeling great and can't believe it... but I am realistic enough to know that my 2nd Melphalan bomb may explode with the holiday fireworks tomorrow, or sometime next week. I am certainly not thinking it will be this easy! But best not to jinx myself......................> o yikes... Melphalan round #2 tomorrow!!!
Love, thanks and deep appreciation for all your attention to my life and blog!!! love you all!!! :)
Thursday, July 1, 2010
Well......... for those of you previously awaiting me finally growing up and loping off my signature ponytail and braving a new style minus the funky clip, poofy spray & sprint long hairstyle I've been sporting for years now… Nature is telling me THE TIME HAS NOW arrived for a NEW DO …. as Julie is losing her hair like a typical cancer patient!
So bring on the new SHORT style FAST, as a primer for the full shave to come! Huge Thank YOU to my favorite, and one and only hairstylist extraordinaire Christine, for coming in to re-do my Do!!! even though she's a bit disabled herself with recent knee surgery! Thank you so very much Christine, and for tolerating my oddities and preserving my ponytail! You are the BEST!!! Heal fast and feel better!! Love you lots!!!
I think my friend CyToxic Chemo is guilty for my recent thinning and shedding and soon Melphalan-MustardGasChemo to come this weekend, will finish the job!!! I'm gonna look like my hubby Jim… but dang… he'll have MORE hair than me!!!
Ahhh the early Myeloma days… January thru May, where Revlimid chemopills and steroids actually enhanced my hair!!! So many of you were so kind these past months to say my hair looks great but… "what's up with you being a cancer patient with hair Julie"!!!??!!!
Well in the last few days, I suddenly morphed into ChemoCat and began shedding like my cats, dogs and horses! True to predictions of those that have braved this journey before me… about the second-ish week after IV Chemo… YOUR HAIR really STARTS FALLING OUT!!!!
And thank goodness for Swifters… or my bathroom tile would have become BLONDE SHAG carpeting. It was a surprising thing at first… and I doubted whether or not I was REALLY LOSING my hair… but this shedding is different from the (normal) brush-full one gets after washing and styling…
Chemo-hair just spontaneously falls out… LOL… all the time… tickling your skin, getting caught on your clothes, leaving a trail everywhere … and suddenly… the realization… fszxzxzk… I'm really losing my hair!!! Just ask Alissa about me chasing her around the house with a handful of it!!! hahahahahaaaaaaaa
But I'm ok with this… really, just another chapter in my monumental Myeloma Moments. It's new, it's different and it represents how these powerful meds are in charge and doing a good job!
And a huge THANK YOU of appreciation to my very special Nurse Coordinators at Kaiser and City of Hope for all their expert care, expert management of my case and their genuine care and concern they have shown me through out this process!
Time to pack... "vacation" time has arrived... City of Hope here I come... tomorrow, Friday, July 2, 2010.
Thank you EVERYONE for all your wonderful, amazing, supportive, loving and entertaining blog comments. I really truly appreciate you following my journey and commenting on my blog ramblings! Love you all so much!!!!
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- 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 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?
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.