1) if an “old hat” send me your pic – if you want to have some fun with it first (replace the sunset, paint a picture, whatever) have at it. If you’re newly bald, do something cool and different. You don’t have to show your face, you can have your kids/sig other/neighbor/total stranger, paint a picture on your head! If you dont have a bald shot but you have a good shot of when you’re going through all this (thinking Mike and the Zebra!) then send it along!
2) send me what you want related to your photo. I’m originally thinking: name, date of diagnosis, type of MM (iga, igg, flc) and either date of picture, date of SCT or date of harvest (or whatever date you want!)
3) ALL PICTURES WILL BE APPROVED BY OWNER BEFORE ANYTHING IS DISTRIBUTED – i’m not a professional and dont hope to make anything out of this than awareness for the disease and funds for our relevant charities.
4) final version of calendar will also be approved by everyone included within the calendar!
5) I will work w/ MMRF and Myeloma UK as I have contacts at each. again, the goal here is to provide them a final (or close to final) product that they can then distribute. I also hope that all of us will help distribute as well. I will also reach out to the primary drug companies to see if they will sponsor and help to offset costs!
6) Pics can be sent to promotingglobalhairloss@gmail.
I’m sending this via Facebook and Twitter and if everyone else can send via whatever other method works for them then great. It’s Myeloma awareness month – but this is really for those that are unfortunately already aware! I’m hoping to get something done soonish so that we can get this together for a 2014 calendar!
If you think I’m barking up the wrong tree on this one please let me know. Otherwise – show me your baldness!
PS – thanks to Shells Porter, Marianne and a few others that have already sent me some pics! Looking forward to more!
At the end of the day, I still woke up three or four times and at the end of my eight hours I had been up for an hour beforehand. I’m hoping that this just takes time. I feel more rested but still don’t feel like I got a full night’s rest. But let’s talk about the Fine Print.
As those of you have been reading for awhile, I started Promoting Global Hair Loss to raise money for The MMRF. But the reason I chose to do that is because the Fine Print on the Cytoxan was INCORRECT! The Fine Print (or maybe it was the doctors) said I could lose my hair in 8-10 days. I think it happened to me after day 13 or 15 – bottom line, it was not something I was expecting. I had thought it was past and it wasn’t and that’s a demotivating factor. As you can tell, it was simply a speed bump in the road of life and I’ve gotten over it and raised around $55,000 in the process. So now, I’ve taken to making sure I read the fine print and ask relevant questions so I can understand what may occur, when and set my expectations appropriately. Everyone sees the Viagra commercials, or any other AstraZeneca/Pfizer make your life better drug commercials where they are required to state all the side effects. I’ll send a MMRF bracelet to the first person that can list 3 of the side effects mentioned in the viagra commercial (except for the erection lasting longer than 4 hours which is the only one EVERYONE seems to remember) but you can’t go youtube or look it up on google – this has to be from memory and I WILL KNOW!
Which brings me to the Ambien – have YOU read the potential side effects? I’m not sure if I can appropriately set my expectations for this one. And I quote,
“Rarely, after taking this drug, people have gotten out of bed and driven vehicles while not fully awake (“sleep-driving). People have also sleepwalked, prepared/eaten food, made phone calls, or had sex while not fully awake. Often, these people do not remember these events. This problem can be dangerous to you and others.” END QUOTE
“Uhm, honey, I apologize, I really wasn’t aware of what was going on, it was the drugs, honest….I’ll never make you a peanut butter and mayonnaise sandwich again!” :)
I was going to end it there but saw this in Wikipedia:
Some users have reported unexplained sleepwalking[original research?] while using zolpidem, as well as sleep driving, binge eating while asleep, and performing other daily tasks while sleeping. Research by Australia’s National Prescribing Service found these events occur mostly after the first dose taken, or within a few days of starting therapy. Rare reports of sexual parasomnia episodes related to zolpidem intake have also been reported. Sleepwalkers can sometimes perform these tasks as normally as they might if they were awake. They can sometimes carry on complex conversations and respond appropriately to questions or statements, so much so that observers may believe them to be awake. This is in contrast to “typical” sleep talking, which can usually be identified easily and is characterised by incoherent speech that often has no relevance to the situation or that is so disorganised as to be completely unintelligible.
Figures the Australian’s were the first to document the ‘sexual parasomnia’ effect. I can see myself carrying on complex conversations and responding appropriately without any knowledge or foresight of doing so. Heck, that happens all the time with me – and I can’t always blame the chemo (thought I’m doing so now!)
Enjoy the read and enjoy the Fine Print!
Can I get a high five please?
After a bit of drama yesterday and apprehension this morning, I was seen by a Medically Trained Person who told me that my toothache was a toothache and I could have my treatment today. So, here I am, sitting on the second floor of the Macmillan Centre receiving a litre of liquid, which is a mix of cyclophosphamide (chemotherapy) and saline. To be clear, a litre of liquid administered intravenously is a lot of liquid. Like, a real lot. Two hours worth to be precise and before that, I had two bags of other medicine, which apparently, will help prevent me from vomiting up my dinner later.
This is it. It’s the start. It’s what I have been waiting for for six weeks. Longer. I was devastated yesterday when I thought I was going to have another delay. Right now, all being well, is the beginning of the end of this chapter of My Myeloma. I have waited six months to get to a point where I can see an end, and I can. I don’t want anything to take it away. The drugs are going in me, right now. As sick as I will get from this chemotherapy, I simply do not care. I don’t care how sick I am going to get during the transplant. I just want it to end. And today, is a massive, massive step. It is here.
I have never been so happy to have an IV. See?
Now, let the powers keep me safe and infection free so I can adhere to my word processed timetable.
I just want it to end.
It is that dreaded time again, when I cannot do very much. I made myself a cup of tea eight hours ago, but did not have the energy to drink it. I fell asleep with a dog on my head instead. That probably says it all.
I knew this was coming and I very much looking forward to waking up from it in three days time, just in time for Santa Claus. I have now been through this four times, and it may sound strange, but I am somewhat relieved to think that the next time I do go through this, I’ll be in hospital. Albeit with things leaking from each orifice as well, but I’ll be surrounded by more drugs. The fatigue is indescribable. I have tried, but I strongly suspect people think I am embellishing. I am not. Right now, I look like the ghost of Christmas Past mixed with Miss Haversham with breasts down to her naval.
Must remember that for each day or couple of hours down, I am that little bit closer to Christmas.
It dawned on me earlier today, how close I am to my high dose and how close I am to having this level of fatigue again, if not worse, and that the next time I do feel this way, it is going to be more dangerous. I am going to have to sort out the breast support issue by that point for it is not just going to be another cycle at Mamma Jones’ house and I do not know if people understand.
I am dwelling.
It’s my friends’ fault. Rather nicely one was arranging a dinner party earlier today for February. Everybody responded excitedly; I did not. I cannot make plans for February, before then I have to make a decision about whether I have a procedure with a 10-20% mortality rate, shave off my hair and try to tone down my irrational vat of self pity that people are forgetting just how seismic this all is….
It’s all going to be okay though. Do you know how I know it is going to be okay? Last night, for the first time since I was diagnosed, I used the whole bed. I did a starfish. On my back not front, but still. Baby steps.
I know that tandem stem cell transplants and chemotherapy have saved my life… and I feel so blessed to live in a time when good medical treatments are available for this disease. I would most likely not be alive today without them. These medical advancements have ridden my body of any visible signs of myeloma, but they have also left much peripheral damage. A weakened body and immune system, some neuropathy, and the various side effects I have had to deal with…………But what I really am trying to say is that…………..
One of the miracles in this crazy life I have endured through all of this is to see and feel my body (as well as my mind and spirit) begin to heal. Isn’t it amazing and wonderful how the human body functions? How our bodies are generating new growth every minute? How my body can grow stronger everyday?
After over two years of transplants, transfusions, and treatments, I have finally begun to feel normal!!! I am getting some energy! I am going days without pain! I can wake up in the morning and have a normal day!! Cancer does not weigh on my mind every waking minute.
I can clean my house, play with my precious grandaughter, do laundry, run errands, and fix dinner all in the same day!!
I have always been thankful for the big, exciting, and eventful days. Those days to capture in pictures and scrapbooks… Graduations and weddings. Birthdays and the birth day of my Grandchild. I am so grateful for those. They have kept me going. They have given me steps and goals and notes on my calendar to look forward to.
And now my “life tutor”–cancer has taught me to appreciate the normal, ordinary days that build me and shape me and bless me.
Time to celebrate!Thursday was my last “Chemo Party” for Hopefully a verrrrrrry lonnnnnnng timmmmme!Like I explained in my last post, this has been
Almost two years of this grueling pace.
This life changing,
completely consuming journey.
I could not have done this without the expertise, and encouragement from the team at my oncologist’s office.
Jamie and Kelly, the nurses have been wonderful. Not only are they skilled at what they do, but they have become friends throughout this journey.
We feel very fortunate to be in the care of Dr. Nathan Rich. He is my local oncologist. He works closely with the Multiple Myeloma specialist at Huntsman. He is very “down to earth” and takes his time to answer our questions and just visit. He has been my ally through this rigorous treatment. Really helping make the right decisions for me and weighing out the options. I have been having most of my infusions at his office and then meeting with the “MM bigwigs” in Salt Lake once a month. I really value his expertise, wisdom, and kindness. I will continue to see him and receive Aredia-a bone hardening infusion every two months.
I am so grateful for the care I have received from these amazing people and the miracles of modern medicine!
p.s. and you asked how did I celebrate? I went home, ate cake and had a three hour nap.
Here are couple of random pictures of my humanitarian trip to Peru. (I hate posting without a picture) Kris kissing a llama for good-luck!
Working at a village school in Matinga, Peru. the school shared one box of crayons. We painted and cleaned, brought needed school supplies and made many new friends.
My posts have become fewer and farther in between. I am finding that on the “good days” I don’t make the time to write. I am too busy running around trying to get as much done as I can, and enjoy feeling good as much as I can. On the “bad days” which unfortunately come too often, it takes far too much energy to put down my thoughts on paper–er computer.
So in a gallant effort to actually post something I have decided to forgo writing down the actual posts that have been rolling around in my mind and just give you a clever title which I may or may not expand on in the future–Hey I make no major commitments while on this “roller coaster.”
So here goes..
July 4, 2010 “Long naps,…. Short walks in the woods,…….. A weekend with my family in Star Valley, Wyoming——Priceless!”
July 6, 2010 “Living with the Man of my Dreams” celebrating Twenty-six adventure filled years with my amazing husband.
July 15, 2010 “I have an eight-track mind without a rewind” My steroid-chemo induced mind games and the people who play them.
July 18, 2010 “My Three Sons” the adventures of a Myeloma-Mom and a Micro-Managing dad trying to keep it all together from a 12, 15, and 18 year old boy’s perspective. Trust me this would be a short post.
Just imagine how great these posts would be. You laughed….You cried…. and you were inspired by my every word. Wow I feel a lot better now. How about you?
And now to erase all non-posting guilt, Here is the low down on what’s been happening on my myeloma mountain climbing adventures.
I am in the middle of the 11th cycle Six weeks to go!!! If I can stand it. It is not getting any easier that’s for sure. I started out last week feeling pretty good, but developed a bad cough and chest congestion by Wednesday. I spent three hours at Utah Valley Hospital getting checked out by Dr. Riches NP. After a blood test, oxygen level test, and a chest x-ray to rule out pneumonia, She decided that I had the beginnings of bronchitis. I was giving a high power, high dose antibiotic, my old friend Levaquin and sent on my way. She told me it was good I went in when I did because I need to stay healthy enough to receive chemo on Monday. (Is there something wrong with this picture?…I need to stay well so I can take a nasty poison that will make me sick) Oh well whatever it takes to get through this.
I continued to drain of energy but my cough has been getting better. By Saturday I was completely down, could barely get out of bed. I slept most of the day. Thanks to my husband for taking care of me and the kids. And then this “roller coaster” of a life changed directions and Sunday morning I felt much better. I was able to go to church and spent a great day with my family.
Everyday is an adventure one filled with highs and lows. My family and My Heavenly Father keeping me going and I am truly blessed by both.
My four sons, son-in-law, and daughter. Aren’t they handsome….and beautiful?!
Our only daughter was married on June 3rd. It was such a wonderful celebration. She was married in the Salt Lake LDS temple. The ceremony was beautiful, simple, and sacred. We haven’t felt like we were losing a daughter but that we are gaining a son.
It’s been six weeks since my last round of chemo. A serious break after 18 months of treatment. After explaining to my doctor all of the upcoming events happening in May, he agreed to let me take time off of treatment. I was desperately hoping he would say that nine months of maintenance was plenty however that wasn’t the case. He did say that we must always weigh out treatment with quality of life issues. Well I must say that “my quality of life” has needed some adjustment so it was wonderful to take a “breather” for six weeks!It has taken a good month to shake off the fatigue and some of the “chemo brain.” Just in the nick of time I have been able to enjoy some wonderful events with my family.
Now it’s time to jump back on the chemo roller coaster. I head up to Huntsman on Monday to begin treatment. I will start with labs. They will be checking to make sure all systems are “go.” Then the games begin. An IV with some saline, a quick push of Velcade(chemo) and a three hour infusion of Aredia-a bone hardening infusion. I will also start back up on Dexamethasone and a new drug called Revlimid. I am not looking forward to the next three months. It is so hard to start back. This time I know what I am getting into! …so wish me luck, keep me in your prayers, and I will get back on my hiking boots and climb a little further up this mountain.
I went for labs yesterday morning. I’m almost equidistant from the downtown hospital and the suburban satellite clinic. I try to do ecerything except transfusions at the suburban clinic, not because of the distance, but the time/traffic/hassle of shlepping downtown, plus having to pay for parking. I can’t believe that after paying thousands of dollars for chemo, transfusions, or whatever, they ding the patient for parking!
Anyhoo, it’s not a long drive, and it’s on a major thoroughfare, so I can usually get to the suburban clinic in 10-12 minutes. On the way there, and on the way back, I passed major, multi-car, ambulance-requiring accidents. Coincidentally, they were both in the opposite direction, so I wasn’t caught in the ensuing traffic snarls, but it was frightening, even as a passer-by. And a reminder that we’re all a second or two away from tragedy caused by a texting moron, a chattering bimbo, a distracted dingbat.
Although I was “borderline” I decided to get a transfusion today, and another dose of Aranesp. The transfusatorium was mobbed and I couldn’t get an appointment until 1pm. If all the planets lined up, the whole thing should take about 3.5 hours, getting me out of there just before rush hour proper. For the first time in all my many visits… there were kiddies in there. Not one, but two. Not as patients, but stuck with accompanying visitors.
Honestly, one of my perpetual rants is against people who seem to think that hiring a sitter is some kind of child abuse. Either they’re too cheap, or too lazy, or incapable of separating from their child for a few hours. Whatever; the people who drag their kids everywhere just set my teeth on edge and make me sit on my hands to resist dope-slapping them. And of all the annoying, inappropriate places these copter moms drag their poor kids to, this has GOT to be the most ridiculous. Why would you drag your otherwise healthy kid to a germ- and vermin-ridden hospital, and force them to sit for several hours, to the annoyance of scores of SICK people?
The four year old little girl, bless her heart, was good as gold. Her hair was in the Little Black Girl ‘do, with a dozen little braids springing from her head. But some genius put bands with square plastic bobbles at the base of each braid. I couldn’t imagine trying to lay back and sleep with a head full of those things. I was also freaked out that her great-gran (who was probably about my age!) had three-inch fingernails. I know I’ll have nightmares about those. Anyways, between the television and a hand-held video game, she stayed quiet and amused through her mom’s afternoon-long ordeal.
The one that really got me was the little boy, maybe a year old. I didn’t see who his mom was accompanying – a husband, sister, friend? Doesn’t matter. I can’t come up with any reasonable excuse for shlepping that baby to the hospital. He was a new walker, and just wanted OUT of that goddamned stroller. And every time I dropped to sleep, he let out a shriek.
Of course, my fun wasn’t over. I should have beaten rush hour by several seconds, but I got in a traffic mega-snarl. (Thank goddess I’d made a pit stop before leaving the hospital.) More than fifteen minutes to go a single block; no way out! The reason, I finally discovered was that some rookie genius pulled a car over on a major thoroughfare. He did not have the sense to direct this car around the corner for ticket-writing, and instead backed up traffic for miles and miles. When I finally finally finally got out of there, it really was rush hour. Not the end of the world, but a 35-minute stressfest instead of a 20-minute cruise.
When I finally got home, I laid down on the sofa and didn’t move for three hours. I think it may be time for me to stop driving.